Saturday, April 9, 2016

Learning to Kiss

The Triumphant Journey of a Nonverbal Autistic Child into an Adult With An Ability To Communicate That Knows No Bounds
Eve Megargel is a true hero. She is the author of the new memoir Learning to Kiss (Infinity, May 17, 2016) and the mother of a 25 year old man, Billy, who is nonverbal, has severe autism and suffers from a litany of medical issues.Learning to Kiss is a raw and honest account of Eve’s life with Billy as they struggle to identify successful modes of communication he can use in everyday life.

Eve is dedicated to helping transform the image of people who have autism and nonverbal or limited verbal abilities. Her memoir is a testament to the fact that even if a person cannot communicate with spoken language, they still have the ability to share and learn and live a productive, happy life.

Eve and her husband, Matt, were told to institutionalize Billy when he was two. They refused and began a program, Voicecolors, that has helped him and other autistic individuals with limited verbal skills learn to express themselves and achieve meaningful social connections. When we consider those with limited speech as thinking, complex individuals, they can contribute to society in astonishing ways.

Billy first started to express himself through paintings and has grown into an amazing artist, talented gymnast, and yogi. Today, Billy’s work is in a number of galleries and installed at Massachusetts General Hospital’s Lurie Center for Autism. Billy uses an electronic device to “speak.” He also uses other means of non-verbal communication that allow him to fully participate in his life. 

One of the biggest issues autistic individuals and their parents or caregivers face is communicating with medical staff. Beginning in his teens, Billy often visited hospitals for testing and medical procedures. There, the staff prohibited Billy’s parents from accompanying him beyond the waiting room, despite their insistence. As a result, Billy became angry and ripped the IV out of his arm. He refused to cooperate simply because he didn’t understand what was going on and was not provided with a way to communicate that was right for him.  Often, those who are nonverbal, or have low verbal ability are never given a chance to make their own decisions about healthcare, or anything else. Driven by these experiences, even among compassionate medical professionals, Eve created a questionnaire to be given to autistic patients during hospital admission, which has improved communication between medical staff and autistic patients.

Praise for Learning to Kiss:

Over the 20 years I have known Billy, he has learned to be a spontaneous, competent communicator who is able to say so much without speaking a single word.”
-Sue Constable, Autism Coordinator, Rhode Island Technical Assistance Project

This book is an account of the times we fail our patients in medicine but offers guidance on how to do better. It is an account of the failings of education for children and adults with autism but offers observations on different solutions. It is an account of how families and friends often think of individuals with disabilities. It shows us ways we are insensitive but moves us to become more sensitive.”
-Dr. Timothy Buie, Massachusetts General Hospital – Lurie Center for Autism

Excerpts from Learning to Kiss:

Young Billy Disappears on a Cold Winter Night:
“Billy has no shoes on. He is in his red-and-white striped cotton pajamas. I am aware of the lapse of time. I cannot control the effect of time or frostbite. My senses are in overdrive. My eyes strain to penetrate the black night. My voice howls. But the only noise that blares back into my ears is the sound of the oversized boots crunching in the snow. ’Billy!’ I wail. But even if Billy responds to my outpour, he is forever silent. Billy cannot say, ‘I’m here, Mom.’”

Billy “Speaks” for the First Time:
“In a male computerized voice, Billy says, ‘I don’t like this.’ For the record, Billy stated the terms of his disagreement with the song selection and proceeded to navigate flawlessly back to the original page. Billy stared straight ahead as if no one had heard what he had just communicated. The teacher’s jaw dropped and the scales fell from her wide-open eyes. That afternoon the teacher relayed the ‘astonishing’ story. I heard him loud and clear. The teacher heard him loud and clear. It is a game changer. Billy is a nonverbal communicator.”

Billy’s Health Deteriorates:
“When Billy was seventeen, his body began to fail. He could no longer endure the physical pain. The intensity of his pain coincided with self-harm; he hit his face repeatedly. A year later, he began to get seizures. His communication of pain was alarming, dangerous, and with no known source. Billy may have been suffering through pain all his life. We don’t know, and probably never will.”

Billy Embraces Life:
“Billy has gained weight and muscle mass. His skin coloring casts a ruddy glow. All glaring remnants of self-inflicted wounds have healed. The scars form seizure-related incidents fade. His eyes are clear. His body movements are precise and coordinated. His stature exudes confidence. Whoever Billy meets, he extends his hand and looks them in the eye. He is not afraid. Billy knows what suffering means. Chronic conditions remain. The memories and the medical realities are part of his make-up. Yet whenever possible, Billy embraces life."

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