In 1978, Noah Greenfield was 12. He could not speak and had been diagnosed as brain-damaged and autistic. His father, Josh Greenfeld, wrote several candid books about life with his son. At that time, many children like Noah were institutionalized. But the Greenfields wanted to raise him at home. Was this a mistake? Perhaps.
Dan Rather reports on a family struggling with often-insoluble problems.
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As a 12-year-old, Noah seemed only partly connected to the world. His attention seemed to be turned inward, toward a private world. Generally he seemed withdrawn but aware, present yet absent, elusive yet obtrusive.
In 1975, his brother Karl, 13, wrote a poem about Noah:
"Noah, Noah everywhere
It goes around just like air
And when you hear his sacred tune
You'll know he'll come around the room
And when he comes to stay
He'll only stay his way."
The poem hangs as an emblem on the door to Noah's room. Noah does not speak and seems unable to learn. His future seems bleak.
Noah's features show no mark of his disabilities. His mother, Foumi Greenfeld, came to America from Japan to pursue a career as an artist. She and Josh were in their late 30s when they decided to have children. Twelve years later, they are still caught up with the complete care of a child.
His parents say that Noah is better off with them than in an institution. Foumi Greenfeld thinks that Noah "would be lost" without them.
But Noah can make family life difficult. Because Noah is so hard to handle, his parents expect more from Karl. "I'm sure I've expected him to be more normal because Noah's less normal," Josh Greenfeld says. "It's very tough to act like a normal family of three when you are four."
Karl admits that he wishes her brother were more like other children. "We (could) take trips if he was normal," Karl says. "We could do things a normal family could do. But right now we have to center our lives completely around him. If he (were) normal, we wouldn't have to do that."
Josh Greenfeld worries that one day Karl will have to take care of his brother. Caring for Noah can be very trying; he sometimes screams.
And Josh Greenfeld admits that he has hit Noah and even considered murder.
"I've often thought about killing him," Josh Greenfield says. "One of the reasons I wrote the second book was to say these things so that once I've said them, I can't do it.There's no way for me to beg a plea. I can't take Noah out and have an accident with him now."
"We're always on that edge of violence when we're on that edge of intense concer and intense love or intense - whatever word you want to use," says Josh Greenfeld. "And with Noah I think you (are) in a highly emotional area more."
Caring for Noah is not all frustration, though, his parents say. "There's nothing like the smile of a baby; there's nothing like the smile of a 12-year-old kid," Josh Greenfeld continues. "There's nothing like the look of love he can give you - not love, but the look of need - need, that's the word. And knowing that he needs you makes today sweeter, it makes me better, because I know as long as I'm taking care of Noah, I know I'm doing something good."
In 1984, when Noah turned 18, the Greenfelds made a difficult decision: They sent their son to an institution. Josh Greenfeld had developed health problems, and Noah had just become too much to handle. First they tried group homes, without success.
Then they put their son into a state institution. That's where Noah, 33, lives today. Josh Greenfeld is now in his 70s; Foumi Greenfeld is 69. Noah is still a big part of their lives. The Greenfelds visit Noah every week - and they make certain he's being well taken care of.
"The look on his face, when he sees us sometimes, it makes driving out there for an hour - it makes it all worthwhile," Josh Greenfeld says.
At first glance Noah resembles a normal adult male. Yet he's still entrenched in a world that his parents don't really understand. He still communicates much as a baby would.
Over the years, the Greenfields have reset their expectations. "At first, you just hoped he'd be normal," Josh Greenfeld says. "Then you just hoped he could talk. And then you just hoped he could communicate a little more or understand. And then finally, you reached the point where you just hope he can be well fed, well taken care of - be happy, not feel pain. You become very, very basic."
The Greenfields have come to the conclusion that they shouldn't have kept their son at home for as long as they did.
"It was a mistake - and it wasn't a mistake," Josh Greenfield says. "It was a mistake because - the longer you keep somebody at home, the more you become attached. And the more you become attached, then the harder it is to separate - the harder it is to accept."
"I would tell anyone who has a child like Noah, as soon as you find out about him, get him out of the house," he adds. "However, having said that, you have to dream the future of your child. You don't give up. So we did the wrong thing. But it was the only thing we could do."
Noah's brother Karl is now a writer for Time magazine. In one sense, he thinks of himself as an only child.
"I'm an only child with a brother," he says. "Noah was a huge part of my childhood - adolescence growing up. And when my parents pass, Noah will then again be a big pat of my life, because the burden of Noah will fall to me. So inevitably my journey will take me back to Noah."
With Noah in an institution, the Greenfield have tried to carve out a normal life for themselves. Foumi Greenfield has gone on to become an accomplished writer and, like her husband, has even written about the struggles of raising Noah. The Greenfields say that even today they find themselves still hoping for a miracle for Noah - something they know is unlikely.
Instead they pin their hopes on another event. Says Josh Greenfield: "A fellow parent who had a developmentally disabled - I don't know what word to use anymore - child (told me) that we're the only parents in the world who somehow wish and pray fervently for our offspring to pre-decease us. And there's truth in that. Because if he's gone, then it's easier for us to go psychologically."
Is there a moral to the Greenfields' story? To Josh Greenfield, there is: "If you have a child, really appreciate normalcy."