Friday, September 30, 2011

Under the 'hero's' cape

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. " 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 or borrow it from Holland Bloorview's library (416-425-6220, ext. 3713).


Great review Louise.. I'm adding this book to my reading list. I love how honest she was about augmentative communication .

Thankyou for the review. I will definitely be buying the book. Not just for me. But for the professionals that I work with. Some of them need this kind of an eye opener.

I just ordered my copy. Thanks for a wonderful review --

@Louise - thank you for reviewing my book! I have found it a humbling (and nerve-wracking!) experience, releasing it to the world...

I so appreciate seeing it through your eyes. Thank you.

Dearest Jennifer,

Your love for your son, Owen, has long captured my heart and opened my mind. For, although I will always be an advocate of accommodation and intervention for those children whom will surely benefit, I do not doubt that I will forever remain much like yourself: "A passionate outsider, who does not fear standing alone, in an attempt to guide and assist others." Hence, I too, can understand the value of letting a child with a complex or most severe disability live free of expectation, allowing them to experience the riches of life in their own way.

Moreover, I would also humbly suggest that We are both far from perfect, as we have learned from our mistakes and lament over a few regrets. However, "You now move forward not only with an enlightened sense of purpose, and an illuminatingly clear vision, but in the name of love --Owen's love.

I have every confidence that you will never waver, grow tired or lose heart, as you'll infinitely remain who you were meant to be: "A mother to Owen and Angus, two beautiful boys."

I will be grabbing a copy of your book, and hopefully talking to you again.


With all I have to give,

Matt Kamaratakis

Thank you Matt, for your kind words and support... I will respond to you directly so we don't clog up the comments :)

Thank you also for letting me know that my PayPal link was broken! I have fixed it and look forward to sending you a book. J.

Actually, one thing I do want to comment on here: I reached my own conclusions after years of fruitless effort and hope. But I couldn't have reached those conclusions without the pursuit - which means I can better trust my decisions and have fewer regrets. The pursuit itself could surely have looked different and not burned me out... but for the sake of our collective humanity, I think we shouldn't discount potential and opportunity for development in anyone. (@Matt - I know that's not what you're suggesting :) Just want to clarify my own thoughts.)

Hi Jen -- Question. How could the pursuit have looked different?

I think parents are put in an almost impossible position of having to be superhuman. Because the child's needs are so complex, and therapies are required for all types of different things, plus your sleepless nights and surgeries and illnesses, etc, how could a person do it without burning out? Is that possible?

Do you know of a parent whose done that?

Just thinking out loud! Louise

woops -- just thought of an answer to my question -- maybe if you have unlimited funds, it makes it somewhat easier because you can purchase all the help you need.

Good question, and probably different for each person. (To clarify - I mean pursuit of finding optimal ways of being in the world, especially for a child whose boundaries are so undefined...) I'll attempt an answer: I would have had a healthier/happier time of things if I wasn't attached to outcomes. And if I'd felt a welcome place to voice the futility I was feeling. The constant praise and encouragement felt like a trap, although I didn't feel it at the time. I don't think there's anything wrong with working on things, trying to find a good path, making things accessible. But of course most of us are way off the mark in terms of expectations, balance, limits.

I assumed there was one right answer and I just had to keep fighting to find it. And everywhere I turned someone had a 'good idea' that I should try. I know in hindsight I wasn't selective enough and I let the enthusiasm of every new young therapist sway my better judgement of what would 'work' and what wouldn't. It's hard to say no with so much can-do going around.

I would suggest that money doesn't do it either - especially in my married suburban life there was no lack of resources and it didn't prevent me from overworking. In fact, because I wasn't working in a paid career job it was even more important to prove to myself and everyone that I was still doing something worthwhile and productive.

Jennifer, I am looking forward to reading your book.
I left a note on your blog regarding picking up a few copies if you are still at the same address.
I really relate to your perspective and feel so much more assured of or path. I get very, very annoyed with myself when I fall for the 'can-do' attitudes. life for our family is getting better as I learn to say no without doubting myself. What has been particularly helpful is that when I reluctantly say yes, I find I should have said no. this makes it easer to say no the next time.