Seeing the Child, Not the Disability

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DENNIS ROSEN, M.D. New York Times- It had been several months since I had last seen my patient, and even longer since I’d seen his mother. He was 3 and unable to walk or talk, and when I caught his eye, his face broke open into a huge smile, accompanied by the grunting and rhythmic thrusting of his torso and arms that he uses to express himself.

Shortly after he was born, he was found to have a genetic variance about which, unfortunately, little is known. My patient has an unusually small head, widely spaced eyes, seizures, feeding and digestive problems, and a wide range of developmental delays. He also has obstructive sleep apnea, which is why I had first become involved in his care when he was only a couple months old.

About a year ago, his mother told me that she was planning to go back to school to become a medical clinical assistant. And since then, his grandmother had accompanied him to his last few appointments so his mother would not have to miss class.

I asked the mother if she had finished her coursework.

“My classes, yes,” she replied. “But I still haven’t taken the certifying exam.”

“Why not?” I asked, guessing what the answer was even before I had finished the question. “Are you nervous about passing?”

“Yes,” she said, half-smiling to herself before looking up at me.

We talked about how her year had gone. She told me that she had found the classwork quite easy because of her experience in caring for her own child with special needs. “All of the pumps and suction machines and nebulizers, I knew all that from him,” she said, bouncing a finger lightly off the tip of her son’s nose and eliciting a giggle.

I encouraged her to push ahead. “I’m sure you’ll do fine on the exam, and it will be great for you to start doing something you’re good at and being in regular contact with other adults.”

“Yeah, you’re right,” she said. “I like the people in health care. People in health care, they don’t stare at my son like he’s some kind of freak, you know? They see him for who he is.”

She took a deep breath and continued. “It’s different when I’m around other people. Either they make faces because they think he is too big to be in a stroller, or when he starts making his sounds and throwing his body around, they just stand there and stare. I feel like they don’t want either of us around and just wish we would go away.”

I started my pediatric residency 18 years ago this summer, two months after my oldest was born. Over the years, I have cared for thousands of children with all sorts of conditions, and I try to connect with each and every one of them in a special way. With some, I talk about what they’re reading, the sports they’re doing, the instruments they’re playing, their dreams or their fears. With others, the communication is nonverbal, whether they are babies who haven’t yet learned to speak, or their development is delayed. I have yet to meet a child who fails to kindle my compassion or to bring out in me the most basic desire to try to help.

Perhaps this is why I was so shaken by what I had just heard, about mother and son being shunned by others who were unable to see the son she loves as a child instead of as a condition or disease. I couldn’t help recognize the cruel irony of these strangers withdrawing from this child because of the very sounds and movements that he uses to try and interact with them, undeniable expressions of his humanity.

Faced with such a child in the park or at a restaurant, too many of us just stand there and stare. Instead, notice the twinkle in the child’s eyes, even if they are half-hidden behind smudged, thick-lensed glasses. Return the smile, even if it twists unusually or is wetter than what you’re used to. Wave back at him when he jerks his arms toward you, and say hello, even if it’s hard to understand exactly what she’s saying.

These children, and their families, will notice, and feel welcomed.

Dennis Rosen is a pediatric pulmonologist practicing in Boston, and the author of “Vital Conversations: Improving Communication Between Doctors and Patients,” to be published by Columbia University Press in September.

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