I felt invisible while balancing work and my child who needs more medical care than most. This is what I did.
As I write this, I hear a debilitating cough interrupt my daughter’s infectious giggles. My cortisol levels spike. I silently panic even though I should be used to it by now – after all, it has been over two years since her diagnosis. Since I do not talk publicly about her journey, I will tell you about mine and other moms of children with special healthcare needs (CSHN) like me: we are not seen.
Mothers of CSHN are not an acknowledged group of caregivers. Whether our child has asthma or is autistic, many people dismiss our child’s health journey as we fight to get personalized care in health and education systems. We balance this existential need to be seen with the counterweight of fending off stereotypes and finger pointing. The mountain of bias and non-stop advocacy is even harder to climb if a parent or child is a person of color.
We balance this existential need to be seen with the counterweight of fending off stereotypes and finger pointing. The mountain of bias and non-stop advocacy is even harder to climb if a parent or child is a person of color.
Each family of a child with special healthcare needs is unique, but one thing feels similar: our daily worries and deep joys both go unrecognized. We are lonely. And yet, we are everywhere. Twenty percent of American children have an ongoing health issue related to physiology, development, behavior, and/or mental health. This percentage is rising.
The obvious example of our invisibility is in the workplace. I made the (privileged) decision to leave my job as an education executive in 2018 after I felt like I had to choose between my daughter’s health and my career. The system wasn’t built for me to do both; pre-COVID, only 53% of employers offered flexible hours and paid sick days, and those benefits are available mainly to employees who work full-time. My work hours overlapped with urgent tasks, such as finding specialists, commuting to appointments, and battling with health insurance.
The Family Medical and Leave Act (FMLA) gave me a few weeks off but it felt better designed for easily managed health situations, not complex, ongoing ones. While never explicit, the water cooler culture in New York makes it more acceptable to “humble-brag” about our kids rather than share their challenges. It’s no surprise then that most caregivers do not divulge their care-taking responsibilities with their direct managers.
I became part of the 40% of parents – mostly mothers – who leave careers in order to take care of their child with special healthcare needs. This translates to an immense loss of income with ripple effects across family dynamics and caregiver health, particularly for single mothers. The financial impact also varies across health situations. A study found that mothers of autistic children earn 56% less than mothers of children with no health limitations and 35% less than mothers of children with another health condition. (Incidentally, the study found no difference in incomes of fathers across the same three groups.)
Some mothers, like me, try to return to work. It’s difficult. Ongoing conditions require ongoing care, even while slipping in a “Third Shift” from 11pm to 2am to do things like consult Dr. Google and sort paperwork. I pursued two job offers, but reluctantly declined both. Seeking constant permission (even from the most understanding bosses) for every pediatric appointment hurt my pride. I had already dealt with the psychological blow of losing my professional identity – I couldn’t return to the workplace only to compromise my integrity as a mother.
Seeking constant permission (even from the most understanding bosses) for every pediatric appointment hurt my pride. I had already dealt with the psychological blow of losing my professional identity – I couldn’t return to the workplace only to compromise my integrity as a mother.
My story takes a bit of a turn. I decided to start a company called Sleuth to help parents of children with special healthcare needs. I have a set of supercharged skills that make me want to run my own schedule andmy own company. I’m better at a lot of things now: cutting deals, playing the long game, and pivoting with minimal mental friction. As another special needs mom attests, parenting atypical children is “excellent leadership training in disguise.”
For moms who are balancing the herculean effort of home, work, and caregiving a child with special healthcare needs, here are some tips that were shared with me along the way:
- Find an ally: Use close colleagues and relevant Employee Resource Groups (i.e.: Bank of America has one called the Disability Advocacy Network) to connect with people who also have atypical caregiving responsibilities. My co-worker’s child had a serious medical condition and she gave me insider tips on who to talk to in HR, how to message my situation to my boss, and how to master the organizational culture so that I felt seen but not pitied.
- If you’re re-entering the workforce, own what you’ve done and learned: You jumped hurdles to secure treatment for your child that meets your high standards. What you’ve been through is likely harder than any work-related obstacle you have faced, but it’s hard to remember that. Getting what you need (i.e. answers/treatments/insurance coverage), coordinating different stakeholders (doctors/educators/specialists), and balancing too many things at once are directly transferable to your job. Most importantly, remember to use them to advocate for yourself and what you want. Standing up for myself, even now with my investors, makes it easier and faster to get things done.
- Prioritize your mental health: Try to squeeze in time for a 45-minute (remote) therapy session at least once a week. If you can’t find a good therapist who accepts medical insurance, reach out to your local research university or mental health institute to see if they can connect you with one who offers a sliding payment scale. Caregiver anxiety is veryreal. Among other things, I suffered decision fatigue. By the time I was done making high stakes decisions about my child’s health, I had no mental juice left to figure out what to do about me. Therapy helps unwind the mind and reflect back on the patterns of thinking that help for some situations but not for others. After all, if I couldn’t see myself how could I get others to?
Balancing work and caregiving is hard in the best of times. For mothers of children with special healthcare needs, it’s harder because the systems on which we rely don’t support us. The first step? For them to know we’re all here.
Sehreen Noor Aliis the Co-CEO of Sleuth, a guide for early childhood health that marries the “wisdom of the crowd” with a proprietary data platform so parents get better help. She is an award-winning growth strategist who started her career at the U.S. Department of State as a public servant and diplomat, helping execute President Obama’s initiatives in entrepreneurship, education, and innovation in the Middle East and South Asia.She is a startup advisor, founder of EdTechWomxn, on the Advisory Board for SXSWedu, and not least, a mom to two little girls. She can be found @sehreennoorali and @hellosleuth.