San Francisco, interview, book review

So I’ve decided to add a San Francisco leg to my California trip this year and I’m hoping to have one or two speaking engagements sorted out shortly. Meriah Hudson Nichols, a blogger in Berkeley (near SF) who is active in the Down syndrome community (her daughter has Ds), reprinted my Fake Work article from Bloom. She posted it on several forums and it activated much discussion, which led to a conversation about having me come and talk. As luck would have it, I had planned to be in Los Angeles in August anyway, and I have family and friends in San Francisco. I’m excited with the possibilities of meeting a new community and offering my story to the vast pool of stories already swirling around out there.

I am reprinting Meriah’s interview and book review below. If you live in Canada or the US and want to participate in her book giveaway of No Ordinary Boy, please leave a comment HERE ON THIS POST. Thanks Meriah, for the wonderful support!

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Meriah’s Book Review

No Ordinary Boy is a relatively slim tome, only 144 pages long. It was written by Jennifer Johannesen not long after her son Owen died. It is about his life – from the very beginning of it when he was still inside her – to the very end, some 12 years later. It is also the story, told in a remarkably neutral, candid and articulate voice, of a mother who is far from ordinary.

Jennifer had absolutely no experience with disability when she chose to keep her son Owen, and when she embarked upon a path less traveled – that of parenting a child with multiple – and severe – disabilities. In her book, she doesn’t write of that so much as the gradual unfolding of each step, incline and bend along the way and how those twists and turns were perceived then navigated. First, it was his in-utero hydrops. Then his premature birth. Then his months-long stay in the NICU. Each unfolding, as it happens, is beautifully described and analyzed by her, then a solution reached.

What struck me in this was her pure positivity. Don’t get me wrong – not a unicorns-and-rainbows perkily ‘positive’. Rather, it’s that pragmatic (dare I say…Canadian?!) positivity that weaves its way tightly throughout her story and her recounting of her son’s life. It’s the type of positivity that comes from someone with an inherently positive outlook on life yet who is deeply practical, industrious . Who is essentially fair minded and thinks for herself – a strong woman with strong instincts who isn’t easily swayed.

Take, for example, his hearing. Owen was deaf – and Jennifer and her husband were urged to give Owen a cochlear implant. She did not find his hearing loss depressing at all until she bombarded with “cheerful” information about cochlear implants (which she is startled to learn is a very invasive surgery) and the “fairy tale” of another young boy who, after receiving the implant, is able to hear crickets. She writes, “…my instinct was to reject the implant procedures. And besides, I was so grateful Owen was alive it didn’t occur to me to be upset that he was deaf.”

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Jennifer’s clear and authentic voice coupled with her intelligence show a mother in motion with her children, a mother who is asking the hard questions that people tend to shy away from – “How exactly are they friends, I wondered, if they are just sitting side-by-side at snack time? What does it mean, “Owen demonstrated leadership?”

She pokes around in her feelings regarding Special Education – and the grouping of children with severe disabilities together in the school her son attended She writes, “…maybe it’s too much to ask that a school for severely disabled children should be set up in a dignified, inclusive and genuinely meaningful way; maybe it’s wrong to criticize a system that makes up for poor execution with good intentions.

But I don’t think so. “

She made choices that ran counter to what the medical system advised – choices like learning to sign rather than trying to make Owen learn to hear – and choices that embraced her son as a person who was worthy of a life of experience and joy, not a person who was essentially broken and in need of fixing. This perspective – and the story of how she gained it – is worth reading by all parents, perhaps especially by parents of children with disabilities, as we are the ones that continue to feel the same type of pressure to engage in unending therapy and to treat our children as broken bits of human flesh.

I loved No Ordinary Boy, treasured Owen and Jennifer’s story. I am grateful she wrote it.

I cannot recommend this book highly enough.

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Meriah’s Interview with Me

1. You have written a book about your son Owen who was born with multiple disabilities. Why did you feel the need to write his story?

I realized shortly after Owen’s death–after his equipment was donated and his clothing was packed up and his medications disposed of—that there was very little of him left behind. While he was alive he hadn’t done anything that left a trail of evidence, like artwork or letters or things he made. All I had was my own experience of him and the stories of others. As well, his brother (Angus) was 10 years old at the time Owen died. I realized that his memory of his brother would fade over time, and that my own memory would shift and revise itself. So my intention was really to capture a side of his life that few people saw and that I may struggle to recount later–to create a monument to a boy whose legacy might not live beyond my own lifetime.

I started out writing his story with this intention but as I continued along I realized that a different sort of narrative was forming—one that had more commentary and subtext than I began with. And honestly, I think I ultimately wrote a story about my own journey too, not only his.

2. What do you hope readers will gain from your book and your perspective?

I have completely let go of hopes or expectations of what readers will get out of it! I continue to be surprised by the layers of connection that resonate with some readers. Some see it as a disability story, others see reflections of parenting, relationships, or broader ‘meaning of life’ sorts of queries. I didn’t have a particular audience in mind and I’m very pleased to see that both parents and healthcare workers can relate to the story.

I suppose I can answer the question this way: I hope for two things. 1-that people who have little exposure to the more private aspects of caring for a child with disabilities will feel that they’ve had a peek into a world they wouldn’t otherwise see, and 2-parents or clinicians who have had nagging doubts about their decisions will see that they’re not alone!

3. What was the most challenging aspect of telling your story?

I was very insecure while writing the book, wondering why anyone would care, who would want to read my little story, how I would market it… I had to force myself to move through that, because despite the insecurities I had a sense that this was important work.

4. If you had to write it all over again, would you change what you said in your book? If so, what would that be?

I would spell a couple of names correctly! Really kicking myself over that.

But overall, I can honestly say I would change nothing. I am proud of the book and the story it captures. I even get goosebumps when I do readings! I often experience the book as something someone else wrote, and it takes me a moment to remember that it was me. I think readers will find it vivid.

5. How did you come up with the title of your book and how do you think it reflects on the story’s overall message?

The title actually came from Angus – I can’t remember the context exactly but we were discussing ‘what ifs’ about Owen, something like “I wonder what Owen would think if he could…” Angus chimed in with, “Well that might be true if Owen were just an ordinary boy, but he’s not.”

That really stuck with me, because it was one of the few times I’d heard a description of Owen acknowledging how different he was, but without the usual drippy sentiment. It was kind of perfect! I toyed with Not an Ordinary Boy but that didn’t have the same ring.

6. What was your favorite part in your book?

My favourite part is where I reveal our decision about whether or not to get the deep brain stimulation surgery that we had been discussing. A large part of the narrative in the book is centered around these sorts of medical decisions, and I think throughout our journey the reader witnesses me agonizing over these choices and questioning everything on a pretty foundational level. I think that long journey of endless decision-making, experienced over many years, culminates in that one ultimate decision. It was quite a liberating moment to live first hand, and cathartic and validating to write about.

7. If there was one overall message that you’d like your reader to come away from No Ordinary Boy with, what would it be?

I would enjoy knowing that readers came away from the book with a sense of confidence in themselves – not that they will always make perfect and right decisions, but that they can trust they will make the best decisions they can at the time, knowing what they know at the time. I developed this confidence over time, but how great it would have been to start earlier!

8. What projects are you currently engaged in? Any new books from you on the horizon?

I am working on Book Two, as yet unnamed. A collection of essays, some of which appear in my blog, which expand upon the experiences I wrote about in No Ordinary Boy. The first book was a work of narrative non-fiction – a true story told as though it were a novel. There was a bit of reflection and analysis, but not much. This second book will discuss some of the themes that have arisen from No Ordinary Boy, like the idea that we ought to preserve childhood instead of sending children through endless therapies, or that much of the healthcare experience, from the parent’s perspective, remains unquestioned and unscrutinized. I aim to hold a lens up to the system and expose some of the holes that families can fall through.

This next book will also challenge parents and caregivers to honour and dignify their children with an unflinching and honest gaze, to see their children as they are—to do this first, before they try to mold them into someone or something else.

9. What question have you always wanted to be asked in an interview? How would you answer that question?

Well, there is a question that I have in fact been asked before but I haven’t answered very well, because so far I have avoided giving advice or opinions. This will change in my new book! So I will re-ask myself here:

What advice do you have for parents? And what advice do you have for healthcare?

The answer is the same for both: seek out stories and testimony from people who have walked this path before –not just the parents! If you are considering giving or recommending a cochlear implant, go meet someone who has one, and then go meet a deaf person who doesn’t have one. If you are wondering about quality of life for a person with Down syndrome, meet a teen or adult with Ds instead of just other parents. (Interestingly, studies have shown (http://bloom-parentingkidswithdisabilities.blogspot.ca/2011/12/costs-quality-of-life-assumptions-put.html) that people with disabilities rate their own quality of life higher than those without disabilities would assume.)

It’s so common in diseases like cancer and diabetes for the patients to connect with each other. When it comes to pediatric decisions though, it’s all up to the parents and physicians—none of whom who have likely experienced the specific conditions. Sure, parents are often connected—but at most, they can only really talk about the experience of parenting. To properly advocate for a child, I think we need to move beyond our own filters and perspectives, and try to place ourselves in their shoes. I want to emphasize: this isn’t about getting advice –it’s about gaining perspective, and adding to the resources upon which we base our decisions.

10. Do you have any questions for the reader?

Yes! I am so pleased that this dialogue is happening in the Down syndrome community. You know that weird segmentation in the disability world, where one syndrome or condition is better or worse than the other? Really our children are ALL so different, regardless of disability, but our joys and anxieties as parents are often quite similar.

So I would love to hear from your readership about how they feel about the interventions and therapies their children receive—especially the degree to which they feel pressure or support from the professionals.

And on the flipside, I would be interested to hear about the pressures we parents put on ourselves. I know sometimes my own burdens were self-inflicted, because I was holding myself up to an impossible parenting standard. I imagine this is pretty universal.