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Becoming A Patient Advocate: It’s a Family Affair

December 2015 Vol 1 No 6

Many patient advocates arrive in their role the same way, an undertaking thrust on them by a pressing need for themselves or a family member. Most advocates are not formally trained, many have little knowledge of the condition, and none is born an advocate. All patient advocates know they must take control to ensure that the specific needs of their loved one are served.

After their son was diagnosed with regressive (late-start) autism, Ron and Cornelia Suskind found the need to be advocates for Owen, but they learned the process was not easy and took time.

“We don’t use the word ‘perfect’ in our family anymore,” said Ron Suskind, an award-winning journalist and best-selling author, relating the decision of his family to go public with their 30-year struggle. “What was happening behind the curtains was what was shaping everything” in their lives, he said.

Ron felt that shining a light on their struggle could encourage others to become an advocate for their loved one. He shared Owen’s story at the Second Annual Patient Advocacy Summit held October 27, 2015, in Cambridge, MA.

We Moved to DC, But Where Did Owen Go?

When Owen was nearly 3 and Walter was 5, the family moved to Washington, DC. Ron had a new job as a reporter at the Wall Street Journal, and Walter had a new school. But, where did Owen go? Cornelia noticed that Owen stopped talking and was no longer making eye contact. “Owen went silent,” said Ron, going from a vocabulary of about 100 words to just 1: juice.

Cornelia took Owen to the doctor and then to a specialist, who said Owen had regressive autism. The movie “Rain Man” was the only thing Ron knew about autism. “You’re saying my son is like Dustin Hoffman?” he asked. About 1 in 68 children have autism in the United States, and about 33% of them have regressive autism.

It's a Family Struggle

Life quickly became centered on learning about autism, strategies to help Owen, appointments with specialists of every type, exhaustion, and financial debt. Most of the costs were not covered by insurance; it quickly became clear that the care for Owen would cost more than Ron’s salary. Cornelia left her career to care for Owen full time. Ron’s job became “making lots of money,” he said.

After 3 years in his first school with 4 teachers and 3 kids, Owen was still mostly murmuring gibberish but advanced to saying “I want juice.” Despite all the help, Owen remained separate.

Walter was selfless, telling his parents he was okay and didn’t need anything. Even on his first day of school, he told his mother to just drop him off and keep going, because Owen was in the car. He was a protective big brother, and his relationship with Owen was 2-way, each changing the other.

But all was not fine: everyone was exhausted and frustrated. Owen’s motor skills regressed, and he was back to using a sippy cup. But he was able to use his thumb for the rewind button to watch Disney movies.

Owen watched “The Little Mermaid” and “Aladdin” endlessly. “He was joyful and comforted when he was watching Disney movies,” which he did whenever he wasn’t in therapy, said Ron. Watching Owen repeatedly rewinding 1 phrase from Ariel made Ron realize that Owen was actually repeating Ariel’s phrase, and that he wasn’t speaking gibberish. The doctor said he was probably just repeating the sound and did not understand its meaning.

Listen to the Patient

In utter frustration, hopeless of ever being able to communicate or connect with his son, Ron picked up a puppet of Iago, one of Owen’s favorite characters from “Aladdin” and began talking with his son through the puppet: it opened a new channel to Owen.

Owen began to tell his father that he was lonely, and he didn’t have any friends. Thus began the basement sessions, with the family watching Disney movies and performing different parts every night.

“I was a working guy by day and an animated character by night,” Ron said. Owen had memorized the dialogue of 50 Disney movies. Although Owen ad-libbed lines at times, it wasn’t clear if he knew what he was saying. The last lines in one of Owen’s favorite songs sung by Belle in “Beauty and the Beast” are, “For once it might be grand to have someone understand. I want so much more than they’ve got planned.” Like Owen and so many patients who have been discarded, this song says to remember the patients, that they have value.

“Owen got his speech back when I started talking with him using the voice of Iago,” said Ron. He also learned to read through Disney movies. “We listened to the patient,” Ron said, and Owen taught us what he liked, and how to meet him where he was.

Ron advises to see the world through the eyes of the patient. “We must get outside of our certainty, our knowingness,” he said, and follow patients to understand their needs. As an advocate, trust that the patient will guide you to what he or she needs.

Often the science follows. Now there is neuroscience research, known as affinity research, at top institutions in the United States, for example, that supports using a passion as a pathway and as a code breaker to reach the patient.

The Heart of Patient Advocacy

Now an adult, Owen has written his own story titled “The Land of the Lost Sidekicks.” In this story, a 3-year-old boy becomes lost in the forest during a stormy night. The boy remains with the other lost sidekicks who have no purpose. With time, they learn they are heroes, not sidekicks.

Ron contends that the patient advocate is a sidekick, whose job is to help someone else become their best. This is the heart of the patient advocacy mission. “Owen’s story tells us heroism is a choice,” Ron noted. As a patient advocate, this choice is made every morning, because there is no choice. We must do this for our patient, whoever he or she is, whatever their need may be. We must think differently, ask questions, and look through their eyes, said Ron, to help them be their best.

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