One of my favorite gym songs is Suit and Jacket by Judah & The Lion. I love the way it begins quietly but builds to a crashing crescendo. By the end, the refrain pulses frantically and the singer is nearly screaming. I always find myself running just a little bit faster and wishing I had enough breath left to sing along.
One thing I don’t love about the song, though, is the lyrics. They are about rejecting the world of suits, jackets, and steady jobs in favor of doing something you love (or at least buying yourself time to figure out what you want to do). The band’s singer, Judah Akers, was twenty-six when this album was released, and I can’t help but feel every year of difference between us. Easy for you to say, I always think as I listen to him scream/sing. You don’t have a kid who needs special shoe inserts, a gait trainer, a medical-grade stroller, and liquid thickener that costs seventy-three dollars a bottle.
I feel both bitter and a little wistful as I take in the youthful idealism of the song because it’s so seductive and dangerous to think like this. When you forgo the world of corporate jobs, you miss out on a lot of stress and drudgery. But, all too often, you’re also giving up on things like medical insurance, retirement investments, and paid time off. What you’re doing is gambling. You’re saying that nothing is more important than following your passion. But when you have a child, they are always more important than anything else—passions included. Your child is your ultimate responsibility. And when your child has special needs, that responsibility has a very high price tag.
I think I’m so torn by the “follow your passion” narrative our culture seems bent on selling us because I did follow my passion, and it didn’t turn out as well as they promised. I spent six years in graduate school earning a doctorate in French and another six working as a writing specialist at a university. It was a job I loved but that paid abysmally. I put twelve years of my life into my field of choice, but it only took a couple of months for it to fall apart. My daughter’s Rett Syndrome kicked in when she turned two. She underwent the initial regression that is a hallmark of the disease and began biting herself bloody, screaming for hours every day. Daycare was no longer an option, and my boss lost patience with me working from home while we waited for a spot to open up in a behavioral therapy clinic. It was a stressful, unmanageable situation with no good solution. So, in the end, I resigned and became a statistic—one of the forty percent of special needs parents who leave the workforce to care for their child.
My husband and I had to make the dreaded choice many parents like us must: Do you keep both incomes and all the stress of two working parents, or does one parent drop out of the workforce to manage your child’s medical and emotional needs? My husband and I chose to sacrifice my career because it was much less stable than his. He enjoys all the perks of the world the singer was disparaging: steady work, flexible schedule, ample vacation time, good salary, and a retirement fund.
The choice to leave the workforce and the job I loved was a heart-breaking one, but it’s important to remember that not all people have it. Many parents must keep their jobs and simply squeeze in therapies, appointments, school meetings, and surgeries around their work schedule. They join the sixty percent of parents making workplace accommodations for their disabled child. They are doing what they have to because they need the extra income, the insurance, or both.
For those of us who have the luxury of dropping out of the workforce, though, it often doesn’t feel like one. Instead, it can seem more like a prison, an erasure, or a failure. For years, we were told that we are what we do and that we must do what we love. But life catches up with all of us. We are all hit with something: a cancer diagnosis, a loved one’s illness, the collapse of a financial sector, the failure of a business, or a child with expensive life-long medical needs. If, like me, we have tied our sense of self and worth to our career, we risk losing those things as soon as we lose our career.
So what should we do? Always choose a path that has a 401K and pension at the end of it? Or, if we don’t have these things and choose our passion instead, should we forgo having kids? Should we gamble that life won’t catch up with us? I don’t have the answers to any of these questions. All I know is that the formula of passion + career = identity is a particularly dangerous and difficult one for special needs parents to follow.
Most parents are familiar with the feeling of being torn between work and family responsibilities. Since everything about special needs parenting is real life multiplied by a factor of a thousand, the tug between these two spheres is extremely powerful. If you drop out of the workforce, you can cart your kid to all the appointments and therapies they need, but your sense of identity and worth can fade with every passing day. And if you continue on with your job, you are gnawed by mom guilt. But this guilt isn’t of the are-they-eating-their-vegetables-and-seeing-enough-of-me variety. Instead, you’re wondering about things like what important life skills your child might be missing out on because they’re not getting enough hours of therapy.
I can’t speak to the dilemmas of working special needs parents because I am not one. I admire the people who can/must follow this path, as it is a particularly tough one. I see the struggles every day in parenting forums and on Facebook posts by friends. If I tried to describe these struggles, though, I know I wouldn’t get it right. So I will let those of you who have stayed in the workforce speak for yourselves. I would love to hear about how you view yourselves and how you feel as a working special needs parent.
Instead, I have experience with leaving the workforce to stay at home with a special needs child. So much of my identity was tied up with my job that when I had to give it up, it felt like a hole had been ripped right through the center of my life. Several years later, I still don’t think I’ve quite filled it. When I worked, I had a title. I had credentials after my name. I had things like business cards, a work laptop, and an office with a door that closed. But, more than that, I had clear tasks, performance reviews, goals, and deadlines. I knew what needed to be done and how to do it. If there was a problem, I knew how to get to the root of it and, ultimately, how to solve it. I had the working person’s trifecta: competence, validation, and respect. I felt I was good at my job, that it was important, and that people respected me for doing it.
I don’t feel this way when I parent my youngest daughter. I flounder all the time. Most parents have moments when they don’t know what they’re doing, but the stakes are particularly high for those of us with disabled children. It can also be extremely disheartening. While I feel that I’m doing something useful, I don’t always get great results. Fighting against a powerful disease can feel like trying to push back the tide. I can put in an A+ effort and still get an F because my daughter is in the grip of something much stronger than a single person. Despite my best efforts, she can still suffer, regress, get sick, need surgery, or simply have a very bad day. So much for feeling competent.
And as for respect? I think all stay-at-home parents have strong feelings about this. Many of us feel a sense of erasure, of losing our individuality only to have it replaced by our connection to our children. I’m often just “Mom” to JJ’s medical professionals. One of her therapists simply addresses me as “Hey there!” in all of his emails to me. I can’t count the number of times I have answered an unknown phone number to be asked, “Am I speaking to the parent or guardian of JJ?” It’s normal for people to make connections like this, but it’s also frustrating to be reduced to “parent” when our roles are truly much broader than this. At various (often unplanned) times we also fulfill the duties of home health worker, nurse, pharmacist, therapist, counselor, night nurse, special education teacher, and patient advocate. These are significant, high stakes, high stress jobs, and we haven’t been trained to do any of them. That doesn’t matter, though. Our child still needs us to do them to the very best of our ability.
I realize it is not just special needs parents who feel erased or undervalued. There is a universe of self-help books, parenting blogs, Facebook pages, forums, playdate groups, and meetups to help parents—particularly stay-at-home parents—feel empowered and less lonely. But I’m going to state an uncomfortable truth here: I don’t feel like special needs parents always belong in this universe. Many parents of healthy neurotypical kids have built their stay-at-home identities around values, struggles, and conversations that don’t quite fit us. There’s often a chirpy, harried feeling that I never connect to—an I’m-tearing-my-hair-out-as-I-try-to-cook-mac-and-cheese-for-my-tantruming-two-year-old vibe. There are so many blogs about parenting that encapsulate this feeling. They all have names like Peanut Butter and Three Peas in A Pod or Cracker Crumbs and Craziness (why is there always so much alliteration?) and talk about things like dealing with toddler meltdowns, quick DIY projects for rainy days, and carving out “me” time.
I’m not trying to belittle this universe. It is quite difficult to be a parent these days, and it can feel extremely comforting to find a place that fits us. It’s what so many of us are searching for. But I can’t say that I need DIY projects for rainy days or that I’m tearing out my hair because of my toddler’s tantrums or my husband’s reluctance to help with the dishes. Instead, I’m dealing with heavy emotions, deep grief, profound fear and, sometimes, even life and death situations. Where are the blogs and books about your three-year-old’s brain surgery? About potty training someone who can’t walk on her own? About balancing your child’s need for multiple therapies and your own need to stay sane? There are some places where parents talk about this, but not so many that it’s easy to build your identity around them. Instead, we remain a small sector of a population that is already gently mocked and grossly undervalued. That’s really not much to hang your hat on.
Identity, work, and special needs parenting are such a messy, complex combination that I can’t come up with any neat conclusions or simple advice to finish up this post. Parenting is already hard. Special needs parenting is even harder. Parents (especially women) already struggle with their identities, both when they work and when they step out of the workforce. Special needs parents struggle with this even more. We’re trapped not only by the juggling act of career and family, but forever tangled up in a web of insurance claims, doctor visits, therapy sessions, and medical equipment. We deal with all of this on little sleep and wracked by gut-wrenching fears about the future.
You have to be a strong person to navigate all of this and come out the other side. So that’s what I’m choosing as my takeaway. I am a special needs parent who has made my beautiful complicated daughter my job. I am part of a small world of hard-working, loving, tenacious people who have made their beautiful complicated children their jobs too. It’s a difficult career, but one that is filled with meaning, purpose, and love. We get to meet dozens of kind, caring people. We’re able to discover what we’re capable of. We’re allowed to watch as someone we love intensely pushes limits, smashes barriers, and surprises everyone around them. It’s a job many of us don’t ask for and never envisioned, but it can also be a transformative, life-altering experience. Special needs parenting can act as a crucible, turning us into the best, strongest, most efficient version of ourselves.
And we don’t even have to wear a suit and jacket to do it.
What is your work situation? Why did you choose it? How does it affect your sense of self, identity, and worth?