Twelve-year-old Owen Turney died on October 24th, 2010, of unknown causes. No Ordinary Boy: The Life and Death of Owen Turney is Jennifer Johannesen’s extraordinary story of her profoundly disabled son, his family, his caregivers and his doctors. It is a sharply evocative, sometimes humorous, never sentimental chronicle—not only of perpetual crisis management, crushing disappointments and dashed hopes, but also one of love, spiritual growth, self-understanding, acceptance and maturity.

Author

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No Ordinary Boy

Jennifer Johannesen is a speaker, author, blogger and patient advocate whose main themes include the challenges and ethics of substitute decision-making in healthcare. Her expertise was earned through experience: her 12 year old son, Owen, passed away in October 2010 after a lifetime of undiagnosed, severe multiple disabilities. 

Jennifer speaks to large and small audiences comprised of healthcare and education professionals, parents of children with disabilities and patient groups.  Her engagements include numerous talks for The Hospital for Sick Children, the University of Toronto and Holland Bloorview Kids Rehabilitation Hospital.

Her blog and book are available at NoOrdinaryBoy.com.

Disability Advocacy

Ethics

Parenting Children With Special Needs

Patient Advocacy

Jennifer's blog

Book, "No Ordinary Boy"

Media Reviews and Links

View recent talks on Youtube

Ethics in Healthcare Decision-making

Redefine success: Decide for yourself what really matters

Author Appearance and Conversation

CBC Blue Sky, featured guest interview and call-in show

CBC Alberta at Noon, featured guest interview and call-in show

CBC Ontario Today, featured guest interview and call-in show

Presenter, Medical Student Program

Negotiating the Gray Zone:  Ethical Issues in Health Care Decision Making

Panelist, Navigating Contentious Cases in the Public Eye: A Working Symposium

No Ordinary Boy author Jennifer Johannesen talks about society’s expectations for constant improvement, how this plays into therapy for children with disabilities, and how families can be left shouldering more burden than they want or can handle. Jennifer explores how institutions, clinicians and parents alike contribute to the increasing pressures placed on families and shares her experiences as she leads a discussion on ways to redefine ‘success.’

The over-administration of the lives of families with children with special needs not only threatens to completely snow them under with paperwork, but also creates an unnecessarily stressful environment of constant monitoring, surveillance, reporting, and goal-setting.  Jennifer presents theories as to why these conditions exist and shares how she opted for an alternate route for her family.

'Fake Work'

Ethics are often seen as an instrument to remedy conflict, but are in fact at play in every healthcare decision made in the pediatric healthcare setting. Jennifer discusses how all decision-makers and advisors, parents and clinicians alike, ought to consider more than just the clinical outcomes when making decisions - they should also identify personal motivations, family and cultural influences and other environmental factors--all lenses through which we filter and distort information.

Jennifer often speaks to new and experienced professionals in orientation, lunch-and-learn and professional development settings. Her 'Patient Perspective' talks are geared to the specific audience and healthcare or therapy-related discipline.  Themes include experiences in healthcare settings, receiving bad news, communication styles and decision-making.

A Patient/Parent Narrative and Perspective

Thom Ernst

TV Host, Saturday Night at the Movies

Dr. Golda Milo-Manson

Vice-President Medicine and Academic Affairs, Holland Bloorview Kids Rehabilitation Hospital Associate Professor, Department of Paediatrics, University of Toronto

Avis Favaro

On-camera reporter, CTV News

Author, speaker, blogger

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