The Ones Left Behind

How do our governments and workplaces support, or fail to support, those of us who care for vulnerable children?
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I composed my resignation letter slowly and tearfully. After two years at a job I loved, I was forced to resign. I had chosen my employer carefully: I worked for a children’s hospital that served families who had children just like mine. I had given my whole heart to my job, but in the end, had received little in return.

The official word is that I left because of my son, Aaron, who has Down syndrome. The unofficial – and truer – reason is more complicated than that.

I left paid work because my son is 13 and now too old for daycare. He can’t be left home alone, never mind find his way back and forth to school like most 13-year-old kids. While there are rare childcare spots for youth with disabilities, they can be only accessed by meeting narrow criteria at the Ministry of Child and Family Development. But my son doesn’t have the right diagnosis to secure one of those coveted spots.

Add to that, the school day in special education in high school is shortened – meaning fewer work hours are available between drop off and pick up time. I also need to be visible at school – to build relationships with teachers, to attend meetings and to respond to the occasional phone calls to pick him up early. My son also has medical appointments and therapies that are all scheduled during the workday.

These are all system problems, not Aaron problems. There is a distinct lack of support from our government for parents of children with disabilities. This gap makes it difficult to contribute to the paid workforce. Many ministries willingly contribute to the problem: Education, Child and Family Development and Health.

“There is a distinct lack of support from our government for parents of children with disabilities.”

Earlier this year, I asked my employer for a more flexible work environment so I could be available for my son. I wrote a proposal asking to be converted to contract, where I’d be onsite for meetings, but would work outside of the constraints of typical office hours. I was told no –- Human Resources would not allow this arrangement. This was an ego-shattering conversation, as it was clear that accommodations would not be made for me.

Workplaces that are neither family-friendly nor flexible are also not Aaron’s fault. This is an issue that affects mostly women, who statistically make less money than their male partners and are the ones in a relationship who typically have to drop out of paid work. This is a feminist issue.

I’ve been asking my community of moms who have children with disabilities what they do about paid work. Many moms do work when their kids are young – this is when daycare spots for kids with disabilities are more plentiful – if they can get to the top of the long wait lists. Other moms have teenagers and have been forced to opt out of paid work. And some have flexible employers – although these types of employers are sadly the exception. Yet others piece together a freelancing life, picking up work here and there, like I do now.

Many families slowly inch their way towards poverty. We bleed money every month. Ironically we need a higher income even more than we did with any of our other kids. We pay for our son’s therapies out of pocket and we need to save for his adulthood because of the abysmal government rates of disability assistance that loom in his future.

“I left my job I had for 20 years when my son started high school, too,” one mom told me last week over coffee. When he was younger, they had cobbled together care with grandparents, but their son’s needs became more pronounced when he hit adolescence and the grandparents inevitably aged – the arrangement no longer worked. So the mom had to resign.

“While I was employed, I didn’t think about the single moms or the families teetering on the brink of poverty because the system made it impossible for one parent to work.”

Other moms have left established careers to become Educational Assistants in the school system -– low-paying, but at least the work hours paralleled their children’s school hours. One nurse left her profession to be a part-time receptionist. Other moms have to opt of the paid workforce entirely to concentrate on homeschooling, unpaid advocacy or caregiving work instead.

We make work literally work, somehow. While I was employed, I didn’t think about the single moms or the families teetering on the brink of poverty because the system made it impossible for one parent to work. But I’m thinking about it now, a lot, having been soundly humbled and sitting here in my (relative) place of privilege.

As with many of the issues in the disability world that are not okay, the lack of support to allow women who have children with disabilities to work is also not okay. This is an equity issue. Women with typically-developing children have fought for many years to have choice – to choose to stay at home or to choose to work. This choice is automatically taken away from women who have children with extra needs.

Ellen K. Scott from the University of Oregon wrote an excellent paper called “I Feel As If I’m the One Who is Disabled: The emotional impact of changed employment trajectories of mothers caring for children with disabilities.” In it, she says:

“…mothers mourned an identity transformed and the loss of an essential part of themselves. They blamed the lack of alternative care, the inflexibility of the employers, and their child’s (or in some cases children’s) extraordinary needs, which required extensive direct and advocacy care.”

Our kids’ needs are only one part of this formula. How do our governments and workplaces support – or fail to support – those of us who care for vulnerable children? This is an important equity and economic question. We are the mothers who feminism – and the world – has left behind.

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