Monday, September 17, 2018

Why parents get hooked on 'normal'

By Louise Kinross

On Friday I did a narrative workshop with developmental pediatrician and psychology fellows at Holland Bloorview.

Something that emerged in the comics the fellows drew was how parents express their hope that their child will be “normal”—even years after receiving a disability diagnosis. 

It got me thinking about how the word normal is really a code word for 
“value.” In our culture, normal is valued, and disability is not. 

When my own son was a baby and toddler (but not toddling yet), I would always wait until our visit with the pediatrician was ending, before blurting out: “Will he lead a normal life?”

My son has a rare genetic condition, and the doctor had told me that 
he couldn’t answer that question. There were only 60 reported cases of his syndrome, and the children were affected in different ways. 

Yet I continued to ask the 
normal question—always at the end of the visit—knowing the doctor probably thought I was dippy, or hugely forgetful. Why?

It was years later, working at Holland Bloorview, when it hit me.

As a young mom with a child with disabilities, I didn’t want my son to be judged by others. 
When I was out and about, I felt I needed to put on a brave face to influence how other people saw him. It was only in the privacy of the pediatrician’s office that I let my guard down and shared my concern for my son’s future. That is the tremendous power that health-care workers hold.

Parents and patients honour doctors, and other therapists, by sharing their greatest fears and feelings of inadequacy.

So why did I repeatedly ask if my son would lead a normal life?

Because what I wanted to hear was that my son had value. I wanted to hear that I had a great son, and whether he led a normal life or not, that wouldn’t change. I wanted the doctor to affirm what I saw in my son. I wanted to hear it from an expert.
 But I didn’t know how to ask for that. 

A couple of years ago there was a story in The New York Times about these so-called doorknob moments. They occur at the end of a clinical visit, just as the doctor is putting his or her hand on the doorknob to leave. The parent, or patient, waits until the last second before they have the nerve to blurt out what is truly troubling them.

“Often, the most important service we provide a patient is not what we think it is,” wrote Dr. Adam Cifu in an opinion piece last month in The
 Journal of the American Medical Association. Dr. Cifu, who works in the department of medicine at the University of Chicago, suggests that the emotional support and space clinicians offer patients is as important as “clinical acumen or medical knowledge.” 

His piece
 reminds me of a finding of our Holland Bloorview study looking at whether a narrative group promoted empathy in inpatient nurses. 

Prior to the six-week group, participants described a tension in balancing “direct nursing”—their medical tasks, procedures and documentation—with providing emotional support. Given time pressures and the expectation to maintain professional detachment, the nurses prioritized medical tasks over emotional support, describing the latter as “outside my nursing hat.”

After reading, writing and drawing patient and clinical stories, the nurses elevated compassion, listening, being flexible and providing a safe space to families, as being on par with direct nursing tasks. For example, “Yes, we do the technical stuff but we feel like we’re so much more the emotion, the support, as well,” one said.
 And: “Really taking that time to sit down, as we were experiencing in the six-week [intervention], right? Give them a safe space.” 

Part of listening to parents is trying to hear the meaning or emotion 
behind their words (which is not always self-evident). 

Every parent wants to know their child has value and is valued by others.

Oftentimes, in the early days of a child’s diagnosis, parents pin their child’s worth on hopes for future change—that the child will walk when they’ve been told this is unlikely, or defy expectations in some other area.

The problem with hope is that it’s never now
—and it always hinges on the child better squeezing into what the culture deems normal.

What about the child we have right in front of us? The way we think about human value is a choice. Why not choose to see value in this child, right now, just as he or she is? Can't value be inherent in a child, simply because they're human? 

When a parent starts talking about their hopes for their child's future, don't forget to also ask about their child's value—now. If the child isn't able to communicate easily, ask parents what makes this child tick. 
What do they love? What do they hate? What kind of personality do they have? What does the parent most enjoy doing with their child? When are they most happy together? What does the parent most love about their child?

Don't forget to talk about the cool qualities in the little patient you see in front of you. Because every child has them. Don't forget to tell parents they have a great kid.

When parents get hooked on their child being 'normal,' what about sharing this idea that they can choose to see their child's value as inherent, as unchangeable, as their birthright? Your child has value—right now—is a powerful message.


"What about the child we have right in front of us? The way we think about human value is a choice. Why not choose to see value in this child, right now, just as he or she is? Can't value be inherent in a child, simply because they're human?"

Thank you for these poignant questions, Louise. It breaks my heart to see family, sometimes even parents, and friends shift in their delight over a child once they receive a diagnosis. Sometimes the child ceases to be the joy of their lives and becomes "less" than they once were. Yet the only thing that changed was a label; the child is still the same precious person they had been the day before that label was assigned. THAT is the child we need to celebrate and value.

Do you give up hope for helping our kids reach the highest potential they can obtain? Of course we don't. But being is our worth, not doing, so thank you for this reminder today. I am grateful to all those in my life who have demonstrated this appreciation for our worth simply because we are human.