Someone Waiting

[Sounds of crying]

[Background voice: You are a mess.]

Voiceover: Your sunrise is when the light goes on. Your day is when the light stays on. Your night is when the light goes off. Your view, most of the time, is a few square feet of ceiling. You can hear, but you really don't know what you hear. If you could, then you'd know what you heard was the sound of children crying.

Occasionally, you're aware of something moving, but you can't find out what it is because you can't move. Unless someone moves you.

Nurse: Well what a big boy.

Voiceover: When you do, you get a new view. A series of wooden bars, and maybe a corner of a pillow.

[Baby crying]

You live in the pretty little town of Glen Ellen, Sonoma County, in the State of California. Your home is Bed 17, Ward A, Corcoran Cottage, Sonoma State Hospital. Your name is Timothy Barry and you're eight years old. You are a severely retarded child. For some reason, Timothy Barry was born this way. No one really knows why. He was brought to Sonoma he couldn't talk, he couldn't move couldn't talk, he couldn't move, he couldn't understand. He was diagnosed as having extreme mental retardation as a result of a congenital birth defect. And he'll stay this way, pretty much, until he dies.

These are Timothy's neighbors here in Corcoran, children pretty much like him.

[People talking in the background]

This is Bobby, mentally retarded since birth. The cause unknown. He's nine, although he may not look it. That's fairly typical of severely retarded children.

Jody, the second child in the family with three children. Born prematurely, Jody didn't breathe normally for an hour after birth. Lack of oxygen left her with severe brain damage. She came to Corcoran about a year ago. She'll be here for the rest of her life.

Here's Rod, thirteen. Severe spastic quadriplegia. Involuntary muscular reactions make him appear to be smiling. He's not. He can't sit or turn over or hold a toy in his hands.

Karen. The poor physical condition that can accompany extreme mental retardation left her continually ill. She's not expected to live more than a few more months.

Larry may have been normal at birth, but four days later he developed what was thought to be cerebral hemorrhage, and he's been pretty much the same since.

Oh, and then there's Chris. Chris is the lucky kid on the block. He has Down syndrome, a mongoloid some people call him. Compared to Timothy and most of the other kids at the cottage, he's practically normal. He can feed himself. He will be able to dress himself and move around.

These are Timothy Barry's neighbors. There are seventy-seven of them in Corcoran Cottage and maybe a thousand times seventy-seven in other Corcoran Cottages in other places in the United States.

Voiceover: They're not too much. They don't talk except for a few. Only some can even move. Many are blind. Many are deaf. By almost any standard, they have nothing to contribute. Which brings up the question: Why bother?

Take Timothy. He is, to say the least, a pretty ugly kid. He has an IQ of at the most maybe 10. His muscles are atrophied. He'll never talk. He'll never work. He can't have a bicycle or go to the movies or play football. He has a life expectancy, if this can be called life, of maybe six, maybe eight, maybe ten more years. And no matter what's done, he's not going to change a lot, so why bother? What should you do for a child that can't feel or see or hear the things you feel and see and hear?

The law says the children must be kept alive until they die a natural death, if there is such a thing when you've never lived a natural life.

They are cared for, fed, and made as comfortable as possible. But is there anything more that should be done? These are questions people ask about the severely mentally retarded, and the questions aren't just asked by people outside the hospital but also by the people who care for the children inside.

Nurse Marie: When I came here, I thought I'd have to quit. I asked myself, "What are you doing? You're not doing anything." I'd never seen wall to wall cribs of children before, and the whole thing was just unbelievable. I came down to Corcoran …

Voiceover: Marie is a nurse at Corcoran.

Nurse Marie: To help out.

Voiceover: She wondered why bother too.

Nurse Marie: …taking care of the kids, like I was in a dark room. For one thing, when you haven't had previous experience in taking care of the retarded, it's like someone brought you in a room and it's just him and you. And you kind of get to the point where he doesn't have the capacity to talk to you, and you're limited to the point where you don't know what his limitations are. And it's frustrating. You can't believe the frustration of…

Another thing, you're scared of him to begin with. This is something completely different, something completely out of…out of your realm of reasoning, something you've never dealt with before.

Voiceover: There's not a lot known about the care of the severely mentally retarded. Extreme cases of mental retardation have usually been regarded as hopeless, as they in fact are.

Trained specialists are rare. There are only a few for the three thousand patients at Sonoma State Hospital, and their time has to be devoted to cases where there can be some improvement.

Nurse Marie: I guess maybe, you know, I should have known more. Um, but you have to realize, until about ten years ago the kids were put to bed to die, not because it was easier or anything, but because no one thought there was anything more you could do with them. But what you would do is you'd feed them, you'd change their diapers, you would turn them to prevent them getting bed sores. You'd go in and have a cup of coffee, you'd look at the clock, and then you'd have to go back right out and start the same thing all over again.

Voiceover: That's pretty much the way things were around Corcoran: Folding diapers, checking beds, turning bodies, and watching clocks.

The therapist would come once a week or so, work with the children as much as possible, and come back a week later.

The staff did what was needed, what had to be done, because there was no reason to do anything else.

Corcoran Cottage was all it had to be and no more. It wasn't much of a place for the patient, and it wasn't much of a place for staff either.

Every so often a child would die, or if he lived long enough, he would move to another part of the hospital, and new children came to take the place of those who were gone. It was all a part of the routine.

Nurse Marie: The kids weren't going anywhere, we weren't going anywhere, and that's the way it was. I was going to quit, Marge was talking about quitting. I guess, everyone was talking about quitting at one time or other.

Voiceover: In some ways, Corcoran Cottage was a far better place for its children than it was for its staff. The routine and the sadness of watching the children slowly die were enough, but here were other problems too – unyielding policies, lack of help, lack of knowledge, lack of funds. These were the things that made Corcoran Cottage what it was. But they were also the things that made it what it was to become.

Mainly the staff at Corcoran decided to make some changes because there was no other choice, except to leave. So they decided they would try to change things, and they would do it themselves, not because they really knew where it would go, but because doing something seemed at least a little more interesting than doing nothing.

Nurse Marie: We decided that nothing was going to happen if we just sat around waiting for it to happen, that we had to make it happen. So we—all of us—decided we're…we were going to change the lives of our patients.

Voiceover: They began to look for new ways to help the children.

Therapist Joan: So when a child that is more sensitive as soon as you touch, then you want to give a little firmer …

Voiceover: And they began to pay attention to others who'd been there all the time.

Therapist Joan: And you extend the wrist by pushing down on the back of the wrist. This puts pressure on the extensors, and, therefore, it's much easier to open the fingers. Instead of going…

Nurse Marie: When Joan came, everybody really started to pay attention to what she was doing and why, and we began to see a lot of things we really didn't think of much before.

Therapist Joan: Because when you pull, you'll increase their spasticity…

Voiceover: Joan Moore is a physical therapist, a specialist in working with children like those at Corcoran. She'd been to the cottage before, but her visits had just been part of the routine, like folding diapers and changing beds. Now, though, the nurses and the technicians began to take some interest in her work. They watched and they learned, and they began to wait for her visits so they could learn more.

Therapist Joan: Now when you're working around the mouth, you want not only just do the teeth, but you also want to go around the gums. With a diaper, um, children that have wide legs set apart, we twist it, where in many cases…

Voiceover: They learned that everything they'd thought had to be, the twisted spines, the atrophied muscles, the tube feeding wouldn't necessarily have to be at all. A lot could be done with a little care.

Nurse Marie: There was this kid with his arm up in the air, and you could see his armpits. And we'd never seen his armpits before. Really, I'm telling the absolute truth.

Voiceover: Funny to get excited about an armpit, but sometimes it may take someone who knows how to do what appeared to be the simplest things. Learning was what the staff at Corcoran was starting to do again. Bolstering, for instance, was one of the most important things that the staff at Corcoran learned: the system of bracing and supporting the body with cushions and pillows. By repositioning the body of the child—on his side, say—instead of allowing him to lie on his back or stomach, a lot could be done to prevent and even correct some of the deformities that had come from simply lying in bed.

For some children, too much damage had already been done in the past to hope for major improvements. But for others, the simple but skillful placement of pillows could mean that their bodies would retain a nearly normal structure, and along with it, the children would be more comfortable and would function more normally.

No one had to do this at Corcoran, but they did. And when they saw that finally there was something happening, they felt pretty good.

The Corcoran staff had started the daily program of special exercise for the children called the mat program. Beginning with trunk rotation, the program was designed to provide motor and sensory activity to bodies that would otherwise become stiff and immobile.

While all the children didn't have enough control to use to strengthen the activated muscles, some did. And children who could never have done so otherwise began, just barely, to be able to lift their heads.

But it wasn't just the program with new routines, it was now an ongoing thing where the recreation was no longer crossword puzzles but spending only a couple minutes each day of flexing a child's limb so the muscles could begin to rebuild themselves.

Then it got to be fun to figure out what else might add to the children's lives.

Because of these things instead of simply lying, staring at the ceiling, they began to feel and to respond. Word about what was happening on the inside of Corcoran Cottage, somehow got to the outside.

Girls from town volunteered to help.

Parents, grandparents, and relatives were encouraged to come and participate, simply to hold a child or to play if the child could. And life was better for the children and maybe just as important for Corcoran staff.

There weren't any miracles. No one got up and walked. No one talked that had never talked before. Nothing really astonishing happened. But a child who had been too weak to even hold up her head was beginning to be able to sit up.

Children who had previously been fed by a tube were able to eat. Bodies began to straighten themselves, not a lot, but a little at first.Bodily functions got better.

And crying stopped. Kids learned to respond to holding and to touch. It wasn't a lot, but a lot for them and for the staff too.

Because, for the first time, the nurses and technicians at Corcoran wanted to come to work.

Somebody: I can only see better things happening because, in fact one change is leading to another change, and it's going to continue getting better. There's so much potential there that nobody even knows about, and it's finally coming to the surface, and you cannot only see it, you can feel it.

Voiceover: That's what happened at Corcoran Cottage at Sonoma State Hospital. A few people who felt there was nothing to do got interested in a lot of people who had nothing to live for. The staff at Corcoran learned that an IQ doesn't mean very much when you're talking about a severely retarded child. You learn that a touch can be more important than a ride on a bicycle. You learn the comfort given by a few pillows can mean a lot more than an ice cream cone.

You learn that just being held can mean as much as any Sunday football game and that a little attention is more important than a movie could ever be.

Maybe they should have figured all that out before, but it wasn't so easy. It was pretty tough to come to the idea that things so insignificant, taken so much for granted by you, are those same things that can give a whole new life to a retarded child: Comfort, feel of grass, a touch from a familiar hand, the soft warmth of an animal's fur.

A new sound. These are small things but these are tiny children and these are their reasons for wanting to live. Even if they're not the same as everyone else's, they're just as important to them.

The staff at Corcoran Cottage found that out, and something else. That by making life better for the children, they made theirs better too.

[Song] I've kept you in my heart.
And ev'ry hour that we're apart.
The tears have shown rolled into years alone.
Alone I've come to be somebody waiting

Promise me as you travel each mile.
You'll think of me ev'ry once in a while
I feel the sunshine in the warmth of your smile.
'Til then remember me, somebody waiting

Without you nights are long.
No one to sing my bedtime song.
The times I've known counting the stars alone.
Alone I've come to be somebody waiting

Promise me as you travel each mile.
You'll think of me ev'ry once in a while.
I feel the sunshine in the warmth of your smile .
'Til then remember me, somebody waiting.

Promise me as you travel each mile.
You'll think of me ev'ry once in a while.
I feel the sunshine in the warmth of your smile.
'Til then remember me, somebody waiting.

Voiceover: We'll try to remember, Timothy Barry. We'll try not to forget.