The Ones Left Behind
Guest post from our Writer-in-Residence, Ashley Bristowe:
I am extremely lucky and grateful to work with a private company and for a visionary CEO. We met last school year, waiting outside the kindergarten door day after day after day: our boys are in the same class. We “got” each other as mothers and peers. And at some point, the boss-lady in her looked at my skills, and she thought, “we can make this work and we can both benefit.” Not hard, right? But actually, this is revolutionary. Let me explain.
In this arrangement, I work very very flexibly as a writer and project manager for Shannon Lenstra with her company Kon-strux Developments. They are a Calgary-based residential and commercial renovator and design-build firm. They do gorgeous residential renovations and commercial custom work. I manage their award submissions, consult on marketing strategy, and help with writing that needs to be done — from client letters to ad copy.
My title is “Writer in Residence.” Shannon created the position for me so I could get out of my house and work on *whatever* I needed to work on, in her office – and consult or write for her when the need arose. From the start, Shannon put the photocopier and the boardroom and the contents of the stocked staff fridge all at my disposal. I’m included in the staff Christmas party (bowling!), and I get business cards. The office is a bit crowded right now (the company is growing), but when there’s desk space, I can claim it. A portion of my book has been banged out in the Kon-strux office between working on Houzz uploads and CHBA submissions. I invoice for my work, and they pay me. There’s free parking.
Ok, so lucky me. “Must be nice,” you think.
Yeah, you know what? It is.
But more importantly and disappointingly, it’s super rare. Hen’s tooth-type rare for parents, let alone for parents of special needs kids. I’ve worked in a few “regular” jobs since my son Alexander’s arrival, and they were all talking about being pro-women and pro-mother, but in truth, they were shitty in the way that every employer that chooses not to accommodate flexible schedules for parents is shitty. When we were going through the pre-kindergarten-entry advocacy and lobbying for classroom aides for Al a few years ago, my then-manager saw our home situation as an opportunity to paint me as uncommitted and distracted, and I was terminated (“without cause”). Because of no reasons, because I was doing my job just fine.
“…But maybe she might have complications and need more flexibility if that kindergarten situation doesn’t work out, so better get rid of her now, eh?” (That manager quit her job 6 weeks later, and I hear they went through 5 people in my old position over the next two years. When I was being hired the director framed the position as one, he wanted to fill with a person who could commit long term. “We want someone who can be in this job for at least three years,” he said. Sure thing, I said, and absolutely meant it. A dental plan and extended medical would help us enormously. I was good at the job. I liked working there. But special needs parents are scary, I guess. Our home lives are complicated, and employers don’t like complicated because it might bleed into the work, see? — even when it doesn’t.)
Now, all parents need flexibility because the fricken school day doesn’t match the fricken work day. Full stop, why do we do that? It’s stupid. Make a longer school lunch hour, have a shift change, make sure there’s phys ed every day and two recesses, and just keep em’ there longer. …And you’re welcome, and I’ll invoice my consulting fee to the Education ministry, shall I?
…OR, shorten the workday. Because honestly, the whole system is not working for kids or parents, and statistically, women bear the brunt of this discrepancy. We are not more productive just because our bums are in the chairs for an extra 1.5-2 hours than the school day. The contrary, I imagine.
There’s a lot of stuff to take care of as a parent of any stripe. The kids-sometimes-get-sick stuff, the can’t-find-the-library-books-just-as-the-bus-is-arriving ass pain, they won’t get out of effing bed/get dressed/eat their effing breakfast. Every child at some point gets a random nosebleed or barfs at school for no reason, and you have to pick them up early. Or grandparents come to visit, and you keep the kids home to greet them at the airport. There’s all of this regular stuff way more everyday monkey-wrench-into-the-schedule parenting stuff that just “is” about being a parent. You’re trying to raise well-adjusted humans. You’re trying to love them and nurture them. You’re doing your best. But other people have them for the majority of the day, and you don’t like it but there’s not really any reasonable other option, and that’s usually ok for most kids.
But now enter the special needs parents, whose kids have lists and lists of Needs.
These aren’t “doesn’t like spaghetti sauce” needs or even “has to get lots of sleep or will be a monster tomorrow” needs. I’m talking about challenges like “this kid may never walk” and “this kid may never be medically stable” and “this kid may never have friends”: relentless, perhaps never-grow-out-of-them hurdles and problems that require IEPs (Individualized Education Plans) and 1:1 aides and therapy appointments. These are kids whose complicated worlds must be intensively tended daily, weekly, monthly, and on other people’s during-the-usual-work-day schedules. Because it’s not like you can see an SLP at 7 pm or 6 am for a few hours. Those people work the same hours that everyone works. So you have to be there with your kid to see them during the workday – during their workday. For example, the EEG (during which the kid has to fall asleep) tests are scheduled between 8 am and 2 pm: because that’s the EEG technicians’ work day. It’s really about making it possible for the people who make their living from special needs kids to work during the day when other people make their living. Which means special needs parents either don’t work, or we work sporadically, or we hire people to take these kids to (sometimes scary, stressful) bloodwork and foot casting and specialist jaw/dental appointments.
Or, maybe 1/1000 of us? One in ten thousand of us? Finds a flexible job with an employer that gets it. And hi there. That’s me, right now, as Writer In Residence at Kon-strux. And yes, I am grateful.
Because? Because today from 11 am – 12:30 pm I was at Al’s consult with the OT specialist and two of Alexander’s aides. Tomorrow Al has a brain scan thing at Children’s at 8 am. Last week it was bloodwork, and the SLP consult, and another whole afternoon at ACH for Physiatry (rehab) and hip xrays. In the mornings and evenings, we run Alexander’s IAHP program. In the afternoons Alexander has Specialized Services and at any given point on any given day one of us has to be available to consult with the aides, help with the provincial therapies, sign invoices, work on toileting or fine motor backward chaining, go buy different outdoor shoes because the old ones won’t fit over the new AFOs, pick up chewing gum to augment the new anti-drooling protocols, fill out reimbursement paperwork in triplicate on carbon forms, do consult calls with our government case worker, lobby to keep our son’s (diminishing) therapy funding, lobby to increase his (inadequate) in-school funding, and so on and so on and so on.
So I work part-time, for this excellent home and commercial developer and renovation company, and I’m doing work I’m good at, and they’re making it work. It takes work for them to make it work! I’m not in the office every day (or even every week). I’m often finishing projects remotely and sometimes complete samples and documents in the middle of the night (don’t look at the time stamps on my emails. Just… don’t).
Am I making the same money I made before Al was born? No. Do I have the same kind of career or schedule that I could if Al was neurotypical? Hell no.
But do I make my own schedule? Yes.
Do I earn substantial money for the hours I do work? Yes.
Can I go to the work fridge and eat the rest of the hummus and a quarter wheel of brie and wash it down with gourmet pod coffee made on demand? Yes (though perhaps a quarter wheel is excessive brie consumption).
Do I contribute to the household finances? Barely, but yes. Finally.
And not least: Is this a rare situation? Yes. I’m sure there are weeks when my colleagues haven’t seen me in a while, and they’re like, “Does she even… work here… still?” And that’s when Shannon has my back. Yep, she’s still with us. Just email her. Text her. She’ll call you within ten minutes. She’s got this.
Guess what. That makes a whole world of difference: it’s everything in our society.
Thank you, Shannon.
P.s. The article is about how employers support (or don’t support) parents of special needs children are sad but excellent. I have been in those ranks, and it is excruciating. A recommended read.