Two years ago, I was six months pregnant with identical twins and working at a job in health communications that I loved. Then my daughters were born three months early via emergency Caesarean section. I spent the next 14 months at the children’s hospital while my daughters underwent multiple surgeries and learned how to breathe independently.
My career aspirations? Forget the back burner. They were consigned to another stratosphere.
Nearly 1 in 5 U.S. children has a special health-care need, and that percentage continues to increase. This reality can force parents like me into an impossible conundrum: Should I prioritize my career or my kid?
Roughly 40 percent of American parents of children with disabilities will leave the workforce to become a full-time caregiver. The other 60 percent will make workplace accommodations — such as taking more days off — to bring their child to appointments or to attend individualized education program (IEP) meetings.
I left the full-time workforce to be our daughters’ primary caregiver, becoming a part-time consultant to keep my resume fresh for when I would be able to return to a 9-to-5 job. And I resigned myself to the idea that my professional development would stall at the ripe old age of 32.
Then I discovered something unexpected: All of the advocacy work I was doing in the children’s hospital and doctor’s offices was transforming me into a more capable professional.
The twice-daily hospital rounds with a team of doctors? Here I honed my relationship-building abilities. Managing caregiving schedules for twins in different locations? This helped me learn how to delegate effectively. All of those calls with my insurance company battling medical bills? An FBI hostage negotiator could not have imagined a better training exercise. And my crash course in neonatology gave me confidence I could handle anything that fell into my lap.
This got me thinking. What if we challenged the prevailing cultural narrative that having a special-needs child was incompatible with our career growth? What if we reframed caregiving as excellent leadership training in disguise? So I asked around and discovered other parents who have found the advocacy they did every day for their children helped sharpen their professional skills.
Judy Welage, of New York City, says having a daughter, now 13, with a rare endocrine disorder improved her ability to get things accomplished.
“You know that adage ‘if you want something done, ask a busy person?'” Welage says. “That was me when my daughter was little."
According to Rita Eichenstein, a neuropsychologist in Los Angeles and author of “Not What I Expected: Help and Hope for Parents of Atypical Children,” an increase in productivity is not uncommon among parents.
“When people become parents, they become more goal-directed and better able to prioritize,” Eichenstein says. “They become more conscientious employees, more focused and get more done in less time.”
Persistence is another skill parents of special needs children hone advocating for their child at school or the specialist’s office.
“Being a mom of a special-needs child means that you sometimes face overwhelming challenges,” says Jodi Gallaer, of Farmingdale, N.Y., mom of a 10-year-old with a nonverbal form of autism. “You get knocked down and told no a million times. After that, running a business seems a bit easier. Your skin is thicker, and you have a better perspective.”
Parents of atypical children also must be willing to engage in difficult conversations, another hallmark of workplace leadership.
“Before having kids, I usually would avoid arguments and wouldn’t stand up for myself if it meant any possible contention,” says Holly Anderson, a mom of three children with special needs in Provo, Utah. “But now that I have needed to stand up for my kids in many situations, I have completely changed that mind-set.”
Other parents experience an improved ability to manage the many competing tasks in their lives that can involve delegating to their child’s caregiving team.
“I’ve learned the value of having a strong support network and realizing that I cannot support my child on my own,” says April Lisbon, a school psychologist and mom of a 13-year-old boy with autism in Fredericksburg, Va. Developing project management skills has allowed her to meet her son’s needs while continuing to grow her family life coach practice.
“Looking back, I’m a bit surprised to find that my biggest professional accomplishments happened after my son’s birth,” says Ryane Granados. She is a Los Angeles-based English professor and mom of four boys, including an 11-year-old with a medical condition that affects the nerve behind his left eye. But this productivity came at a hefty price for Granados. “For 11 years I averaged no more than four hours of sleep a night. Later, my doctor diagnosed me with sheer exhaustion,” she says. That is when she gave up her tenured faculty position. Now, Granados works as a freelance writer and adjunct professor, positions that give her greater work/life balance.
Recognizing the development of these skills can give these parents cause to be optimistic, but there are still obstacles to employment for special-needs parents, including a workplace that is inflexible to their family needs. According to the Family Caregiver Alliance, only 53 percent of employers offer flexible work hours, and just 22 percent allow teleworking. This hinders all parents, but particularly those with children with complex medical needs, who may have difficulty juggling weekday appointments and unexpected hospitalizations.
“Special needs parents are discriminated against at work very subtly. No one thinks of it as discrimination,” Eichenstein says. “But it is.”
As parents of atypical children, we need to stop apologizing for having a child with special needs and instead focus on touting the skills we’ve gained — not despite but because of our atypical parenting experience. And we should channel the negotiation and communication skills we have developed as parent advocates to fight for what we need to succeed both at work and home.
After all, if we do not fight for what our families need, then who will advocate for us?
Amialya Durairaj is a health-writing consultant at Little Octopus and co-creator of Mindful Return’s Balancing Career with a Special Needs Baby program. She lives in San Diego with her husband and twin daughters.