Eve E. Megargel is the author of Learning to Kiss, a memoir that focuses on her son Billy Megargel, a nonverbal young man with autism who has dealt with a variety of health crises. The book's cover includes one of Billy's paintings. The Megargels live in Weston, Massachusetts.
Q: Why did you decide to write this book, and what do you
hope readers take away from it?
A: It’s multifaceted. When Billy got very ill and developed
all kinds of medical issues, it unfolded over five to six years. Toward the end
of that, I felt this incredible story of Billy’s courage and joy and the
different emotions he experienced and the communication he conveyed [should be
shared].
I wanted people who work with Billy--educators, the medical
community—if I wrote the book, perhaps they would reconsider how they think
about somebody like him, nonverbal with autism: What was it like for someone
with autism to experience pain? What was it like for their family?
Q: You recount many very painful and difficult moments. How
hard was it to write this book and relive many of those experiences?
A: I think it was both difficult and a source of strength
for me. By telling the story, all of us were regaining our voice on some level.
We had spent years—it’s unfathomable to someone in the world—in a private
situation.
Sometimes when I was writing, it struck me in such a way
that was [like an] emotional current. It was healing, sharing it with my
husband. We had lived it all, and now we got to reflect on it.
Q: Were you taking notes at the time of the events you
describe in the book?
A: I started taking notes. I would write in journal fashion
what had happened that day. I didn’t sit down and say, I’m going to write a
book. I felt the need to communicate, to write it down.
Q: How did you choose the book’s title and what does it
signify for you?
A: When Billy was about 2 years old, I realized he was never
going to speak. I sought other ways to develop our relationship. Billy was
experiencing low tone in the area of his mouth, and I thought, he needs the
time-honored, traditional good-night kiss.
The act of learning to kiss was a way for Billy to
experience what it means to have human interactions. I felt this lesson needed
to happen. Learning to kiss marked the beginning of his understanding of how to
be a communicator.
Q: What impact has art had on Billy’s life?
A: Art is never a subject provided, or an opportunity given,
to people like Billy in the educational system. I knew Billy was visual and
loved colors, and I tried to think about how to play on his strengths.
He started painting at home. During the years when he was
bedridden and could only come out, look at his schedule, and move over the tab
[indicating he was] finished, he would come down and paint.
It was an expression of color. I decided this was a way he
could express himself. I went to kitchen places, hardware stores, looking for
tools Billy might be interested in. His seeds of his art, his role as an
artist, began at the depths of a lot of pain. We just kept going with it.
Q: And the cover of the book—it’s an amazing painting.
A: It’s a 48 x 48 painting that sits in the homeschool here.
I thought, that’s got to be on the cover!
Q: How is Billy doing now?
A: Billy is much stronger. I have a program, Voice Colors, a
wellness and arts program, that helps individuals learn, develop, and cultivate
their own independent self-expression. A couple of peers come over…He’s doing
yoga, he paints still, he’s working on music, African drums.
He’s in a very good place, but he’s also fragile at the same
time. He has conditions that continue but are under control. I give Billy a lot
of credit—he may experience discomfort, but he wants to create, work, and care.
Q: Will you expand the Voice Colors program?
A: It’s the Voice Colors Communication Resource Model. I have
strategies in place--whatever an individual does, they are independent in
expressing themselves as much as possible in that activity. I want to cultivate
self-expression.
It’s expanding in the sense that we would bring in more
peers as part of the wellness and arts community here, and would be happy to
have people come in and observe.
Q: Are you going to write another book?
A: I don’t know yet--I just got this one finished! I’m going
on a six-city tour through the end of May and June, and then September to
October. I’m interested in sharing the message of how important communication
is.
Billy thinks of himself as an expressive communicator. It
makes a difference in his ability to go through all these medical things. Independently,
he walked several times into an ambulance. I explained to him why he needed to
do this. He trusted the relationship and went with it.
The medical and educational community needs to look at these
individuals as expressive communicators [and] respect them as expressive
communicators: What are their questions? I do need to explain things to this
person…
Q: Anything else we should know?
A: The individuals like Billy who are nonverbal with autism
or low speech—that’s a significant percentage of the population. If we view
them as communicators, everybody wins. What’s possible in terms of what they
can do is extraordinary. No one believed Billy could be an artist, use a communications
device…
It’s because the people around him believed and worked with
him to reach these goals. Communications-based [work] is paramount. The medical
world needs to find out information about an individual with autism—learn what
their language system is and become more flexible so they can have access to
medical care.
--Interview with Deborah Kalb
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