Two days ago Jennifer Johannesen brought me a copy of her book. It was a shiny paperback called No Ordinary Boy, about her life with son Owen, who had multiple disabilities and died almost a year ago at age 12.
Today, my copy's cover springs open, the pages are dog-eared and there are traces of food and bath water dispersed throughout.
No Ordinary Boy explores themes that will resonate with parents of children with severe disabilities and educate professionals and those who have never lived this reality.
It will enable readers to understand how parents can experience their child as magical, yet struggle with a crushing hopelessness when years of rehab efforts don't yield results and therapists (and a 'you can do it!' culture) don't let up.
"What if I know we'll never get there," she writes of efforts to find a communication system that works for Owen. "What if I'm certain? Who would I dare tell? Who would listen? And who would dare agree? Are we all supposed to die trying? And why do we always have to be working on something? Is 'hope' the only thing that matters?"
We hear about the herculean efforts Jennifer goes to to feed Owen, who is at risk of aspiration, orally: "Food and thickened fluid had to be given slowly and methodically. At the last assessment before I finally threw in the towel, the instruction was to feed 1/4 teaspoon of food every 30 seconds. I calculated how long it would take to feed Owen his recommended calories and fluids: about five hours a day."
Elaborate, drawn-out feeding sessions rule the day, to the point that Jennifer's younger toddler Angus protests when he sees the equipment come out. "...at that moment, I felt helpless," she writes. "And hopeless. I was frustrated that I couldn't provide for either of my children properly."
There are years of relentless attemps to get Owen -- who is profoundly deaf, unable to use his hands and struggles with uncontrolled movement -- to express himself.
"The discussions always went around and around. I was offered options at every turn but they felt futile. I knew what I was up against. Every year, a new suggestion, a new hope.
When Owen was three: "He can use a voice-output device to communicate."
But he can't hear.
When Owen was four: "He needs to first learn cause-and-effect; learn how to use switches."
Yes, learn. Goals, checklists, spreadsheets, Time of Day/Number of Opportunities/Number of Successes. The expensive adapted toys. The battery-interrupter to adapt regular toys. The computer arranged through the Assistive Devices Program specifically for Owen's training...We tried. We really did.
When Owen was five: "It's okay if he can't hear. He just needs to know that if he pushes the button, someone will respond."
But his caregivers can't hear. I hire only deaf people. They're the only ones who sign well enough. They're the only ones who can offer consistent language input.
When Owen was six: "Then we'll attach a light signal to the switch, so they can see when he wants something."
But Owen can't see it. His head is always craned around, his chair always tilted back.
When Owen was seven. "Then we'll attach a buzzer, so he can feel when he's pushed the button."
It was enough to drive a sane woman mad.
One of the most moving and insightful parts of the book -- to me -- is a letter Jennifer writes to a trusted speech therapist, explaining why she's given up on augmentative communication. "My apparent abandonment of AAC has nothing to do with my acceptance of Owen himself -- it's more about my exhaustion and what I'm seeing as futility," she says. "I do wish he could communicate and I wish I could give that to him -- but at what cost?"
Jennifer connects the goal-setting of rehab professionals to a workplace phenomenon called Fake Work. "Fake, because it creates the illusion of productivity when the activities actually don't contribute to the production of anything real or meaningful....Institutions and therapists like disabled kids and their families to be working on stuff, to be improving, to have goals and accomplishments. To be all they can be! This persistent striving can create an environment where Fake Work is prevalent and even encouraged."
It's painful -- and somewhat humorous -- to read the lengths to which this parent goes to have her son participate (I'm sure our readers will relate). At one of Owen's birthdays, Jennifer hooks up a hairdryer to a switch box so he can 'blow' out his candles by hitting the switch with his foot. Only things don't go as planned!
There are so many places in this book where I said: "Yes. She gets it. She had the same feelings, the same thoughts."
An example is when she visits a segregated school for Owen, the only schooling option she's given. "I can't describe exactly what was wrong or why throughout the whole tour I was holding back tears" she writes. "...Beyond the buzz, I sensed an environment devoid of connection, authenticity and learning. The place looked like a school but it didn't feel like one; it felt like a facility in which employees looked after disabled kids, more institutional and soulless than any other place Owen and I had been."
And although I've known Jennifer for at least eight years, I wondered: "Why didn't I know?"
To therapists (and I assume even other parents, like me) "I would always wear my shining-hero cape," she writes.
We get the sense that putting on this front of supermom who 'has it all together' is expected of us -- by professionals, family, friends. Certainly we, as parents, don't want people to interpret our lives as tragic. "There's nowhere to go with the reality of hopelessness," Jennifer told me this morning.
Jennifer covers all the bases in her book. She talks about the impact of a child's disability on marriage.
We hear about how she spent her nights ensuring Owen had the continual pressure his body needed to calm itself. "I found a way to keep him tucked into a ball without having to sit up: spooning." This allowed Owen some sleep, but not his mother, who was occupied in a psueudo-game of Twister that left her with chronic pain.
There are surgeries, a baclofen pump implanted to reduce spasticity that's recalled, a meeting with Holland Bloorview's bioethicist about decision-making for someone so vulnerable and dependent.
When Jennifer and her husband choose not to pursue deep-brain stimulation, which is held out as a way of calming Owen's uncontrolled movements, Jennifer feels a sense of exhiliration. "There was nothing left to hold out for, no more straws at which to grasp, no more hope for improvement, no theories to explore, no further experiments, no more trials. Finally, Owen was free to just be."
At the end of the day No Ordinary Boy is a love story --- to Owen, and to brother Angus, to whom the book is dedicated, and to all of us families out here struggling to run what feels like a parenting marathon.
It is candid, thoughtful, philosophical, important. Jennifer weaves her narrative around excerpts from hospital and rehab reports that juxtapose Owen's 'clinical' picture with that of his mother's lens.
You can buy No Ordinary Boy at http://noordinaryboy.com/buy/ or borrow it from Holland Bloorview's library (416-425-6220, ext. 3713).