Interview with Jennifer Johnnesen, Author of "No Ordinary Boy" and "Fake Work" + Book Giveaway

Jennifer Johannesen is the the author of the article, "Fake Work" which was re-posted on this blog last week, stimulating much conversation within the Down syndrome community.

She is also the author of No Ordinary Boy, the candid and deeply beautiful story of her son's life. I posted my review of No Ordinary Boy here yesterday.

I am deeply honoured to have Jennifer on this blog today for an interview, discussing her book. To participate in the book giveaway, please answer her question for you at the end of the interview – one winner (residing in US/Canada) will be chosen on July 24th through random.org and will receive a signed copy.

Thank you, Jennifer.

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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.

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Thank you, Jennifer!
 
To participate in the giveaway, just answer Jennifer's question – either below (comments) or on the blog facebook page (under this post, so that I can find it!), or via email (withalittlemoxie AT gmail.com). Many of you have written blog posts on this – please feel free to link your posts as a response.
 
 
Winner will be emailed on July 25th, comments close on midnight July 24th. Winner must reside in US/Canada. All comments will be forwarded to Jennifer, winner will be selected by random.org.
 
 

THANK YOU!

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Connect with Jennifer:

 

Blog: Yes/No (which includes social media connections)

Book Site: No Ordinary Boy

Meriah
is a deaf blogger, global nomad, tech-junkie, cat-lover, Trekkie, Celto-Teutonic-peasant-handed mom of 3 (one with Down syndrome and one gifted 2E).
She likes her coffee black and hot.
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11 Comments

  • We are THRILLED with my daughter’s therapies. She gets about 2 hours a week, which is manageable, and much of it works into play time when we work with her at home. It helps that we have amazing therapists who want Ellie to have a childhood, not just a bunch of therapies.

  • We are pleased with Dax’s therapies. The PT and DT come once a month and we recently added ST which is currently once a week because we are working through the “It Takes Two To Talk” program. We can add as much as we would like, but we are comfortable incorporating what the therapists show us in our day to day and they are all accessible by phone/email/texting. I feel we got lucky with our team because our philosophies mesh. I truly believe that Dax will walk when he is ready and no amount of therapy is going to make that happen faster. In my view, the therapists are there to guide Dax and our family not push us like we are on an Olympic gymnastics team. That’s not to say our way works for every family…I know it does not. I also personally know parents who have been made to feel less than for not having weekly therapy.One size does not fit all. Thanks to you both, Meriah and Jennifer!

  • Jennifer’s comments about therapies really moved me. My daughter, now 19, has cerebral palsy. Our health plan, a large HMO, has a pediatric orthopedist who advocates for ‘birthday surgeries’ for kids with cp. Each year he “releases” (i.e. cuts) their tendons – ankles, knees, hips. He accused me of failing to care about my child when I didn’t let him cut her. After talking with numerous adults with cp who did and didn’t have those surgeries, I saw no advantage for my daughter so I declined his approach. In fact, based on the outcomes I saw in adults, I found his approach barbaric and impairing.
    For me, the biggest challenge was trying to asses what therapies were worth our limited time and energies (as well as financial resources) and which would not really change her functional level. That was always my guiding principle – would the therapy give her a new functional level? It was hard to resist the constant ‘promises’ of each approach. I know that each higher functional level would give her increased independence and self-choice. But, in the end, the cp always wins. And it took me a while to realize that and stop chasing therapies that ‘might’ make things better.
    The other big decision I made was to intentionally transition her from ‘therapy’ to ‘life’. So if she liked swimming, we did a disability-based aquatic therapy until she was age 10 then we took what she liked best, floating in water, and just went to the pool and floated around. We also looked at sports that she can do – like power soccer and boccia. Playing sports gives her community with other disabled people. So ‘life’ became the goal and we used the therapies that worked best for her to develop the skills – and learn the adaptations that worked best.
    She’s been extraordinarily lucky because her school district hired an Adaptive Physical Education teacher who’s spouse is a disabled athlete. So she focuses the APE program on helping the kids build healthy lifestyles in the community. She brings in a professional dance troupe of disabled dancers every year and also has bowling and swimming in the neighborhood.
    As she aged, I trusted my daughter’s decisions about what therapies were worth her time and energy and which ones to stop. I figured that teaching her to trust her instincts and to make informed decisions was the best preparation for dealing with adulthood, and especially the health care system.

  • @Megan and @Shugie–it encourages me to hear stories about parents who have found a way to balance family life and therapies! So important for everyone.
    @Corbett–your story captivated me because it reminds me not only of my own experiences, but of many of my friends whose children have severe physical disabilities. Your experience is particularly upsetting in terms of the recommended surgeries–I agree the physician’s approach is barbaric, Often though (and I’m guessing you’ve experienced this too), the criticism and pressure is so subtle and hard to pinpoint. Enough to drive a parent crazy! Or worse, to make decisions they’re uncomfortable with. Maybe it’s good he was so overtly unsympathetic to your daughter because it probably made the decision easier…
    Thanks everyone, for participating here. Hope to hear more stories!

  • My daughter is 2 and we do very little to no therapy any more. I ask questions for the DS team when I have them, and then do what works for me and my daughter. I decided a while ago that I wanted to focus on family life and teaching typical age-appropriate things, like building independence and working on self-help skills. We do lots of learning apps on the ipad and go to a play gym with typical kids to work on gross motor. If the DS community wants to promote “more alike than different” then I think we should actually BE more alike than different, and for us, that means working ‘therapy’ into daily life and play. And our DS team is really supportive of what we are doing with P, in fact they are very complimentary and think we are doing a fabulous job of building capacity and anticipating the next steps of where P needs to go.

  • It’s hard for me to answer your questions because I’m not a parent of a kid with disabilities – I’m a person with disabilities myself, one who isn’t a parent. I was pretty much able-bodied through my own childhood too, but I know for many of my disabled friends their childhoods were very much taken up with therapies and many of them seem to have been of little use. With physically disabled kids it seems to me that one of the biggest issues is always getting them to walk, and it seems that this is done even if the child is pretty much destined to never have a very useful level of walking. From what I hear from my friends, almost all of them have ended up as perfectly happy wheelchair or scooter users as adults – one thing I’d like to say to parents is that walking isn’t actually that important to your quality of life! It’s handy to be able to stand, at least momentarily, and being able to take a step or two helps a lot for independent transfers … but honestly the difference in quality of life above that level seems to be minimal.

    For me I can usually walk around my home but I need a wheelchair whenever I’m outside, and on really bad days I need it inside too. And it’s fine, it really is! I’m not less happy or less fulfilled or less … anything, as far as I can tell. Sometimes there are places I can’t get into and that’s a pain, but almost always I can grab a passer-by and get them to find me the shop attendant and they’ll help me anyway! Or if it really matters I can go find a similar shop that *is* accessible, or I can shop online or by phone or … there are always ways.

    I’d really recommend to parents who have kids with disabilities when it’s relevant, if you possibly can, find an adult with similar impairments and get to know them! Firstly it’s a great experience for a disabled kid to realise there are adults out there like them – most disabled kids see other disabled kids but only able-bodied adults. But also I think it would be good for parents too, to realise that there are adults like this and they have good lives 🙂

  • I earned a BA and then an MA in special education and psychology in 1970 and then taught, assessed, and supervised the education of many handicapped kids during the next 15 years. I’ve found that every decade since getting those degrees at least ten percent of what I learned proved to be irrelevant or simply wrong. I’m quite sure that will continue. Yet I feel I did the best I possibly could at the time. If I’d change anything it would be to involve the child in every significant decision about their education, therapy, medical treatment, and life in general, and listen carefully to their assessment of its value. There is nothing that hurts one’s self-estimation more than to be treated as a collection of symptoms rather than as a thinking human being. My advice to both teachers and parents is to treat each child as they wish to be treated, not as you imagine you would wish to be treated. Ask them and listen to what they say.

  • I’m happy with the therapies and the amount of therapies my son receives. He gets 4 therapies of 1/2 an hour each every week and they’re done trough play except for feeding were he just has to eat 😉 I have times when I question my decisions about his therapies and I wonder: what if we did more? Would he be “better”? What if we added this or that? Would he show more progress? And I beat myself for not doing more. It’s hard! Most of the times I’m fine and at peace with my decisions and I try to focus on making my son happy, giving him what makes him happy and if he’s learning a bit while doing the therapies I’m fine with that.

  • Thanks Meriah, for letting me hijack your comments 🙂 Really appreciated reading the stories. Some take-aways for me: include the child, pay attention to how the child is responding, be reasonable with hopes and expectations, find therapists who ‘mesh’ with your perspective, meet people with disabilities (love this last one!).

    Great dialogue – thank you for including me, and thanks for posting.

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