I coped with my son’s special needs by throwing myself into my job

If I could pinpoint the exact moment when I realized that the years of complicated special-needs parenting finally struck their toughest, most irreparable blow—when everything changed and the walls came crashing down—it was the sad scene in which I sat, sandwiched between two file boxes in the backseat of a taxi, unexpectedly on my way home at 10 a.m. on a Monday.

I’d been let go from my job. Me. I’d never been let go from any job before.

Despite 10 years of loyalty and hard work—I hadn’t even taken proper mat leaves—I’d been dismissed from my job as a clerk at a large law firm. In tears and stung by shock, I removed the thumb tacks from the corners of about 100 pictures of my two kids affixed to a bulletin board, in what had been my office. An HR rep watched me pack up the books, the cards from clients, a wall calendar, and the framed photos and certificates that would become artifacts of my time there. A decade of my life was crammed into two boxes and two reusable bags. They asked me whether or not I’d driven to work that day. “No,” I said, “I ran to work like I usually do.” They escorted me to a cab so I could get everything home.

The office had been the place I could always go—the place I would literally run to—when things were tough and felt out of my control. I was 34, and I had two little boys, including a profoundly disabled five year old with a rare disease. I was also in the trenches of a divorce. It was a very unique and intense set of stressors on an already busy life. If I didn’t have my office to run to, where would I go?

I had worked there since I was 25—basically a baby myself. This place had been my most consistent constant for ten years—through the wedding, the two babies, and the divorce. When everything else felt like it was spiralling out of control, I could always put more effort into my work. Work would always be there.

By the time I reached my house, carefully hauling those boxes up steps covered in a layer of January ice, I had a bunch of notifications on my phone: e-mails, text messages, LinkedIn messages. What happened?

I dropped the boxes by my doorstep and sat down at my computer. Short of my resumé, which I hadn’t updated in years, there was only one other place that represented the culmination of my time at the firm: Google. It was a repository of things I had written, courses I had taken, positive reviews on professional websites, along with an overly-photoshopped headshot of me, staring intently into the camera, as if to tell you I wasn’t the kind of person to be messed with. But when I clicked on my name and headshot expectantly, it now lead to an error: page not found. Just like that, in the blink of an eye, my time at the firm had already been erased from the company web site.

I had given that place my all, and in my most intense time of personal need, it had closed its doors on me. I stood in the eerie and unfamiliar daytime quiet of my hallway, where there were no arms to take me in, and sobbed.

When my first son was born, he was very sick, and we didn’t know what was wrong. After multiple days in hospital, blood draws, meetings with specialists, and several grief-stricken moments of pleading with gods I didn’t believe in, we had a diagnosis: galactosemia, a rare disease with the potential for life-long adverse conditions, including developmental and intellectual delays. It felt like a parenting life-sentence. We would have to be on the lookout for things like seizures and tremors and signs of liver failure.

I was so naïve. Instead of leaning into my son’s disease and researching everything there was to learn about it—the special diet, the complications, the odds—I leaned into the two things I did best: I worked, and I ran. I ran to work.

In fact, just three weeks after my son was born I was back to working, mostly from home, but full-time, cradling a baby in one arm. I felt useful; superhuman. I did good work, and I received the accolades for doing that work that made me feel a little less hopeless. My son’s health issues were a black hole of “what ifs” that led me to a place I wasn’t comfortable being, one where I didn’t have the answers. Not being able to help the situation was a foreign feeling I didn’t do well with.

But disabilities are interesting. They are, often, a game of hurry up and wait. Wait and see. React or standby. The years that would follow his initial diagnosis brought with them more work, more running, and more diagnoses. We weren’t just dealing with a rare disease anymore—that was old news. Now we were dealing with global developmental delay, Autism Spectrum Disorder and an intellectual disability. My days became eaten up by doctor’s appointments, assessments, testing, internet research and, much of the time, tremendous grief that, in hindsight, I started to wear like some kind of cloak.

My husband and I had very different perspectives. For me, the diagnoses were the end of the world. There was no good news. For him, dealing with disease was just going to be one part of our son’s story. But our son’s condition was inarguably consuming, and when he was five and our younger son was two, we separated.

But I rose each day for work, still taking great pride in my “deliverables.” I worked on evenings and weekends to make sure things were done, and felt a sense of guilt for the time I had to take away from my desk—some kind of frozen-in-time shrine to the old, pre-kids me—to care for my son. It’s only now that I recognize how incredibly backwards that was.

When I found myself deleted from the firm’s website that day, it showed me how much the job had meant to me and how little I had meant to the employer. It distilled how replaceable and easily erasable I was, despite my efforts and the permanence I had thought was implied.

The next few weeks were a jumble of calls with lawyers and bad sleep. What was I going to do next? Where was I going to go? And, the biggest question mark: Who was I now?

I didn’t know. But I did know I could no longer pretend my son’s needs weren’t as complicated and demanding as they were. I knew I no longer had the capacity to travel from that doctor’s appointment to the work conference call, then to his Applied Behavioural Analysis (ABA) therapy session followed by a speech and language group, and then back to work.

I was also constantly writing letters and petitions to the school board for the accommodations my son was entitled to, but that we never seemed to get. I was becoming an activist and organizing fundraisers. I was clocking 60-hour work weeks and accepting, without flinching, a 9 a.m. next-day deadline for a project assigned to me at 5 p.m., despite the demands of having two young kids at home.

People often commended me for doing so much. When they said they had no idea how I “did it all,” my response was, “I just don’t sleep.” And they’d laugh while I sheepishly shrugged. In fact, I’d set an alarm clock for ungodly hours— sometimes 4 a.m.—to go on a run, come home, get a head-start on work, and then really start the day with the kids.

I had always been the “doer” and to surrender to anything less felt like giving up. But the truth was that I was experiencing a slow unravelling, and my home life was peppered with question marks. When I walked in the door each night, I didn’t know how my son would be doing. And I couldn’t survive forever on five hours of sleep a night in an effort to cram everything into a day. It was an obsessive pattern that signalled a need to slow down.

I now know that the odds were stacked against me every which way. Parents of children like mine have a divorce rate of some 95 per cent. Women are three times more likely to leave their jobs to care for children with disabilities than their male counterparts. Many mothers of kids with special needs work less hours than they’d like; feel forced to switch to part-time jobs; or are unable to work entirely due to inadequate supports for their children (and the need to assume that role). My ex-husband and I were also carrying the burden of huge expenses (a special diet, speech therapy, occupational therapy, intensive child care) and there were very few opportunities for him to press “pause” on his career, too. He needed to work to keep us afloat.

In the 12 months preceding my firing, the galactosemia experts treating my son were now saying things like, “literacy is no longer a goal for him” and “his ceiling may be that of a seven year old, with hard work.” He was five, but he had the intellectual capacity of a 12 to 18 month old. I tried to keep all the balls in the air, but as it turns out, I couldn’t.

In hindsight, I think that the working world would rather not have to “deal” with employees like me—moms of children with special needs. Despite all the laws and human rights codes and advocacy, and the pleasant platitudes touted by human resources, I needed the flexibility to work from home and accommodations for all the medical appointments and therapy sessions. We did have an agreement, but it was informal, and I was afraid of the message my absences ultimately sent—I thought I would be viewed as “less than” in the workplace. I was overwrought with fear about surrendering my career in favour of caring for my boy, even though I was the best person for this job.

In the end, supporting and advancing me—an employee facing personal and family adversity—was not a priority for my employer. I was replaceable. I had been replaced. Actually, I had been deleted.

But here’s the silver lining of losing my job: I learned that it was OK to take a break (even a forced one), and that this artificial bar I had set for myself didn’t always have to be set so high. I finally gave myself the tools to work through and alongside my grief: part-time work, therapy, and time with friends and family that wasn’t centred around my career or my disabled son. It’s something I should have done a long time ago.

I learned that all the while, I had possessed an unending capacity to care for my son’s needs, and for my other child as well.

These days I continue to work part-time as a law clerk and a fitness instructor. It is still a struggle—mentally, emotionally, and financially. The always-says-yes me wants desperately to take on more and to feel more “useful,” but the logical me knows how that ends. It wasn’t pretty the first time.

I am re-partnered, somewhat magically, with someone who seems unfazed by the needs of my eldest son, now eight. Our family has grown bigger: we now have a new baby, just five months old, and I lucked into a nine-year-old stepdaughter, as well. Our home is a domestic tornado most days, but rooting my identity in that tornado, instead of trying to be defined only by what I produce at work, has been transformative.

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