Adapting to the Possibilities of Life

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http://www.npr.org/templates/story/story.php?storyId=89920017

Adapting to the Possibilities of Life

by Rosenstein

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Dr. Rosenstein is the clinical director of the National Institute of

Mental Health, specializing in psychiatric care of the medically ill. His

16-year-old son, Koby, has autism.

Photo courtesy of Rosenstein

" That Koby has autism is old news at this point. We've grieved, survived and

adapted. We've learned to be more patient, to celebrate more modest victories,

and to connect with Koby whenever and however we can. "

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Koby is " a sweet and beautiful boy, " Rosenstein says, " and together we've been

on a journey into frightening and unknown territory. " Rosenstein and his family

live in Bethesda, Md. Photo courtesy of Rosenstein

Questions or Comments?

a.. Contact This I Believe

Weekend Edition Sunday, April 27, 2008 · I believe in adaptation — that is, the

same stimulus does not invariably elicit the same response over time.

The first time I saw my son flap his arms, I nearly threw up.

My son Koby was 2 at the time, and he and my wife and I were at an evening luau

in Hawaii. Dancers emerged from the dark twirling torches to loud, rhythmic

drumbeats. I thought it was exciting and so did Koby. He began to flap his arms

— slowly, at first, and then with an intensity that mirrored the movement of the

dancers.

In an instant, I was overwhelmed. I knew just enough about arm-flapping to know

that it was characteristic of autism. I was confused, panicked and strangely

preoccupied with the fear that I would never play tennis with my son as I had

with my father. That one movement took on immediate, powerful and symbolic

meaning: Something was terribly wrong with my boy.

Koby is 16 years old now. He lost his language, developed epilepsy and has

struggled profoundly. We've all struggled, including Koby's little sister, Emma.

But we've also adapted. Koby still flaps his arms and he's got the thick,

muscular upper body one would expect after 14 years of isometric exercise. He's

a sweet and beautiful boy, and together we've been on a journey into frightening

and unknown territory. Like any fellow travelers, we've learned from each other

and grown.

Koby's arm-flapping means something different to me now. It means that he's

interested, tuned in and present in the moment.

That Koby has autism is old news at this point. We've grieved, survived and

adapted. We've learned to be more patient, to celebrate more modest victories,

and to connect with Koby whenever and however we can. Now, when Koby flaps, I'm

happy for him and what it means about his engagement, not sickened by what it

might mean for his and our futures.

Same stimulus, different response.

I believe that this lesson in adaptation has been one of Koby's greatest gifts

to me, to our whole family. I've seen it as Emma's embarrassment over her

brother's condition has faded and been replaced with compassion for those who

struggle. And I've seen the influence of Koby's lesson in my own work, helping

patients cope with illness and tragedy in their lives — like my patient who can

finally celebrate her father's memory after years of debilitating grief that

came with every anniversary of his death.

Last summer, Koby had a delirious romp in the ocean alongside Emma. Koby flapped

his arms wildly in anticipation of each coming wave. Not quite the family beach

day we had once envisioned, but a spectacular moment nonetheless.

Old heartbreak, new appreciation.

I believe that " reframing a problem " can help to overcome it. But adaptation is

not the same as becoming tolerant of or inured to something. Adaptation allows

for creative possibilities. Koby has adapted to us and we to him, and through

this process our family has discovered deep and meaningful connections with each

other — connections we never thought possible.

Independently produced for Weekend Edition Sunday by Jay and Dan Gediman

with and Viki Merrick.