When I read Jennifer’s article in the Bloom Magazine (see below), I cried because it hit me so hard.
It was right at the time in which I was questioning all of the therapy that we were engaged in, the overall feeling that I was getting that we in the Down syndrome community were focusing so hard on “early intervention” as the end and the all. It was wonderful to hear Jennifer’s strong voice recounting her experiences and ultimately, her decision, which (not to be a spoiler) ran counter to popular opinion.
I am delighted that she consented to share her article here on this blog, so happy to introduce you to this fabulous writer, mother, advocate, (and web designer – she helped me through some critical issues in transferring my blog, for which I will always be grateful).
Here is Jennifer.
Fake Work, by Jennifer Johannesen
Fake work: ‘No matter how much I did, I felt the abyss of the bottomless pit’
My son, Owen, passed away in October 2010 at the age of 12. He was born with multiple severe disabilities, some of which were anticipated in utero, and all of which remained undiagnosed, even in his death.
Recently I’ve taken stock and written a book—No Ordinary Boy—about life with Owen. Writing offered no relief from my grief, but it did allow me to see the full arc of the narrative of his and my life for that 12-year period—a story, with a beginning, middle and end.
I can now recall events and moments and place them in time, in context, knowing where our lives were ultimately headed. What was once ‘just’ hard work, worry and gut-wrenching decision-making now has a poignancy—it exists as a precursor to whatever happened next.
This reflection has led me to new perspectives, reinterpreting history with a dispassionate eye and sometimes heavy heart. A prevalent theme has emerged—one I call ‘fake work.’
I borrow the term fake work from a business book of the same title, which outlines how work that gives off a vibe of productivity—but does little to achieve the company’s goals—has permeated corporate culture. Fake work has other names too, like busywork or make-work. I like ‘fake’ because it has more grit. And it suggests a kind of collusion between all parties involved.
Fake work, as I think it applies to raising a child with complex disabilities, could include:
- appointment summaries and paperwork that primarily serve to fill your child’s file and which no one will ever read
- elaborate applications for funding—forms that require parents to exaggerate or lie to game the system, at which caseworkers apologize for the complexity and requirement to grovel
- extreme measurement of goals, inputs and outputs, outlined in metrics that only an institution cares about and which in fact gets in the way of real parent engagement with the child
- intake after intake after intake, to accommodate the constant turn-over of staff
- spending as much time ‘cramming’ for follow-up appointments as doing the prescribed therapies (“We were supposed to be doing these exercises every day and now we have an appointment! In order to catch up, so the therapist doesn’t think she’s wasting her time, we have to do it three times a day for the next week!”).
I’m sure you can think of more. Fake work could be any activity where parents (and the child) are required to spin their wheels or run in place or paddle like crazy in order to give the system what it needs to keep chugging.
“But isn’t some of it necessary?” you may ask? Yes, for sure. But only if the system is serving you well and is a place where you want, and choose, to be. Many times, I didn’t think that what was on offer was a choice. Instead, I just thought, “This is what one does when raising a child with complex disabilities.” It was as necessary and logical as putting one foot in front of another.
Granted, in order to see progress we have to measure it, document it, chart it, apply what we’ve learned. This makes logical sense (although I question just how much is actually needed). So rather than just complaining about the work itself, perhaps a more useful exercise is for us, parents and clinicians alike, to back up a step, and look at why we do what we do (not just at what we do).
What if we wondered why progress in our children is so important? Part of what creates fake work is our willingness not only to go along with rehab advice without challenging it, but our desire to see our children continually improve, to achieve milestones, to be closer to ‘normal.’ In many cases, our desperate desire.
It may be reasonable to assume that all parents want what’s best for their child. But ‘best’ is a slippery concept, like ‘quality of life.’ It’s hard to define, yet we assume that we all agree on what it means. Because often our goals for our children are so undefined, we might expand fake work to include:
- working on something therapeutic that everyone, deep down, knows is futile
- doing therapies prescribed by clinicians but not really understanding why. Or simply assuming the clinician knows best.
And for me, the ones that hit closest to home:
- doing things that make my child appear as though he’s doing things similar to ‘normal’ kids, when we all know that he’s not
- keeping myself busy so that I feel like a good and worthy parent.
Parents of children with disabilities put plenty of pressure on themselves to do everything possible to help their kids and rarely does anyone question their motivations. After all, there’s nothing worse than imagining a disabled child without access to therapy or ways to improve their lot. And there’s something noble and courageous about a parent who wants their child to be all they can be, rather than just be all they are. These are deeply ingrained values in our Canadian society.
And all of this works out just fine for institutions, who by their very nature demand inputs and outputs, measurable goals and documentation, status reports and metrics.
So many good intentions, and yet many parents, like me, find themselves swimming in paperwork, expectations, cheerful insistence and constant scheduling tensions—and feeling immensely exhausted and alone.
I have often wondered, “Why is it culturally acceptable that I be snowed under in this way? What other parents are expected to work this hard?” Granted, I was thrown a curveball—assigned the huge responsibility of caring for a child who was difficult to care for. Indeed, there was much to learn and much to do. But no matter how much I did, I felt the abyss of the bottomless pit. The applause and the praise and the compliments about how I had it all together—from professionals, family and friends—were almost depressing, because I felt like there was no way I could stop.
“You’re doing great!” they’d say, always with a kernel of hope that maybe the hard work will lead somewhere. The enthusiasm drew me in—who doesn’t want their child to walk, eat by mouth, select a shirt, or show they know something? The idea was always to try to maximize Owen’s potential. But I often thought it was all just to get closer to the Holy Grail: a ‘normal’ child. Or at least, a socially acceptable child.
And regardless of anyone’s hopes and expectations, realistic or not, the activity of therapy itself was never in question. Working hard was never in question. Working much, much harder than other parents of typical children wasn’t in question. And comparing the child with disabilities to the child without, as a means of goal-setting, wasn’t in question.
Do we dare dissect this a little? Is there any way to interpret this that doesn’t require us to assume our children are indeed ‘less than,’ and that it is up to the parents and the system to somehow bring them up to par? Or to die trying?
After many years of going along, I divested. Some might say I gave up. It was a life-threatening health crisis that landed Owen in dire straits in intensive care for many weeks that made me change how I was doing things. I whispered a promise to his unconscious self that if he made it out alive, I would make things better. And by better I meant meaningful – to him and to those around him. I promised that I would provide him with experiences and interactions and environments that would help him connect with others and the world around him—and we would scrap the rest.
When he came home from the hospital, I withdrew him from school, cancelled his therapies, and stopped the lessons. Life became fun, meaningful, interesting. Instead of focusing on what Owen could learn, we planned activities around what he could experience. Caregivers were instructed to enjoy themselves, do things they love and share their enthusiasm. I asked them to involve Owen as best they could without thinking about who’s watching, or letting ‘appropriateness’ ruin the fun. They learned to interpret his cues and let their plans unfold naturally.
Days were filled with nature walks, markets, coffee with friends, even tattoo parlours (where one caregiver sometimes worked). Owen swam with Mark, baked with Jamie, enjoying community outings with Marjorie, and became a regular at the local Starbucks with Sallyanne.
I asked myself almost every night, “If this were his last day, would it have been good enough?” The answer was almost always yes. And I had no idea that he would die unexpectedly, less than two years later.
Now, I live with few regrets. But sometimes I wonder how that would be different, if Owen had died in the midst of all that trying.
My review of Jennifer’s book, No Ordinary Boy – along with a giveway – will be shortly forthcoming. You would not be amiss in going straight over to Amazon to buy it right now though. Not to be a spoiler (again), but it’s that good.
For more on Jennifer Johannesen:
Blog, Yes No
Through her blog you can:
– connect with Jennifer on facebook, twitter and more
– subscribe to her newsletter (which I have) and
– order her book through her website
Website: No Ordinary Boy
Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.