No easy answers

Twenty-five years ago seriously impaired children were kept at home or placed in an institution. Today they attend public school.

Joseph Colao, left, watches his fellow students go to class at West Hernando Middle School. Joseph, who is autistic and visually impaired, uses an adapted bicycle that helps him get around.

Story by ROBERT KING • Photos by KEVIN WHITE

© St. Petersburg Times, published May 20, 2001

Kelton Robinson is lying on his back, trying to roll over.

Courtney Cuesta is sitting contentedly in a highchair, gumming a chew toy.

Josh Gilbert, seated upright on the floor, is pulling a stuffed animal from a barrel. And Nicole Maxwell is sleeping peacefully in a swing at the back of the room.

Wendy Thomas, a teacher's aide at West Hernando Middle, tells Edwina Maxwell how good it feels to see her smile.

If these children were infants and toddlers, it could pass for a church nursery on Sunday morning. Or a day care any day of the week. But this is a special education classroom at West Hernando Middle School. The youngest kid in the class is 12; the oldest turns 20 in June.

It is a classroom of teenagers. But most wear diapers, eat only soft foods and drink from sippy cups. It is a classroom with no textbooks and a chalkboard that's little used.

Two of the students suffered brain damage as babies at the hands of abusive parents. One was shaken; another was thrown against a wall. Had the injuries not occurred, they might have been athletes or cheerleaders or even candidates for valedictorian.

Instead, both are fed through a tube that funnels liquids directly into their stomachs. One of them is in such fragile health that her adoptive parents signed a "do not resuscitate" order, which, in the event of an emergency, stops medical personnel from using heroic measures.

Educators call most of these children "profoundly handicapped." One or two might be a notch higher on the ability scale, putting them at the low end of students who are "trainable."

Aside from the kids with brain injuries, it is a class that's home to students with autism, cerebral palsy and Down's syndrome. Their disabilities are so great, some people question why these children even have a place in school.

Until 1975, when Congress said public schools must serve all disabled children, they didn't. These kids might never have left home. Like prisoners forgotten in some gulag, the severely disabled child of a generation ago might have lived out his existence in bed, or hidden away in some institution where good care was not always a guarantee.

Today, these students have art classes where they finger-paint. They have physical education, where they play games with the help of able-bodied students who push their wheelchairs.

They attend school assemblies and take class trips to Homosassa Springs and Sea World, or even local grocery stores. Sometimes, they sit in on technology or graphic arts classes that are taught to regular students across the hall.

Far from being isolated, children with severe disabilities have quietly become part of the larger school mosaic. But it's happened so gradually that many people outside the schools do not realize that kids with such profound disabilities even attend school.

Courtney Cuesta, in the wheelchair, plays a game of "Duck, Duck, Goose" with the help of seventh-grader Ebony Warren during a physical education class.

Those that do know, have questions.

Why bother trying to teach kids who can't learn? Why spend money on these children when schools are crowded and there aren't enough textbooks for every child to take one home? And why is it so expensive?

They are questions heard by Susan Moglia, who teaches the profoundly mentally handicapped at West Hernando; by West Hernando's principal, Ken Pritz; by exceptional student education director Liz Weber; and by district Superintendent John Sanders.

Their answers have a lot to do with human rights and human dignity. With making kids as independent as possible. And the "minuscule baby steps" it takes to get there.

But their answers also have to do with the idea that able-bodied students can learn things from being around profoundly disabled kids that they might not learn anywhere else. Perspective, for one. Tolerance for another.

Daily life can be major challenge

There are 17,000 children in the Hernando County schools. Only about 2,750 are considered "handicapped." And just a small slice of those are considered profoundly handicapped. In fact, the bulk of special education students work out of regular classrooms.

Only three schools -- Moton Elementary, Deltona Elementary and West Hernando Middle -- serve students who are profoundly handicapped.

Of those, the kids in Susan Moglia's class at West Hernando may face the most severe challenges of any students in the county. But they enjoy a classroom setting that was unheard of 25 years ago.

For the 11 students on the roll, there is a teacher and three teacher's aides.

There are expensive tricycles, swings and toys that are geared toward strengthening fragile limbs and increasing mobility.

For those with the capability, there are even home appliances -- a washer and dryer, a refrigerator and a stove -- to practice the skills of daily living.

Academically, these students will never study the causes of the Civil War or the fundamentals of algebra. Some may never be able to live without full-time assistance. For them, learning to eat with a fork is a major challenge.

But one or two will someday hold simple jobs, such as sorting materials at a recycling center. And they will live with some measure of independence, probably in a group home.

Joseph Colao, an animated 12-year-old who is autistic and visually impaired, is learning to be patient enough during meals to avoid choking on his food.

"Hey, no more in your mouth," Moglia growls when Joseph bites off more than he can chew. "You need some milk?" she asks. "Chew."

Joseph already has learned to perform a long list of tasks. But his mind is such that he will not begin the tasks without some prompting. That is why Moglia outlines his daily chores with a series of picture symbols she sticks on his desk with Velcro.

Whenever he finishes art, Joseph pulls a laminated picture of art supplies from the Velcro strip. That reveals the next card on the strip -- a picture of a toilet. It means it's time for him to go to the bathroom.

Once in the bathroom, he sees symbols on the wall above the toilet that -- from zipper to flush -- walk him through every step of the process. Aside from washing hands at the end, it's a routine he's pretty much mastered.

For each child, the ultimate classroom goal is to gain as much independence as possible. The more they learn, the less they will depend on others throughout their lives.

If they can feed themselves, that's one less thing their parents will have to do for them. If, after their parents die, they can live in a group home, it will cost society less than if they must have a one-on-one aide.

Progress toward independence is sometimes hard to perceive.

But Moglia sees it in Courtney, a pretty 14-year-old who wears gold earrings but learned to speak only five years ago. Now, Courtney calls people by name when they enter the room. She sings to teacher's aide Wendy Thomas about the beauty of her child. "Athena's precious," Courtney says, albeit with some difficulty.

She sees it in Devin Chirazi, a 13-year-old autistic boy who cannot speak.

As a consequence, Devin has had trouble with relationships. And when he first arrived at West Hernando, he threw tantrums, even digging his nails into the arms of teachers. Over time, he has learned to control his behavior.

Phoung Nguyen, left, sorts silverware while classmate Joseph Colao uses a pencil to connect the dots.

'We don't sit and babysit all day'

A quarter century after Congress acted on the behalf of the most severely disabled children, some people still question why the children should have a place in the public schools.

After breaking their backs at school all day, Moglia and her staff hear people asking those questions in public. The teachers are accused of being glorified babysitters.

"We don't sit and babysit all day," Moglia said. "I can't stand when people tell me that. I hate when they tell me that."

Wendy Thomas, the teacher's aide, who aspires to become a teacher herself, says the folks who believe that money spent on the profoundly disabled is wasted are people who never visit their classroom.

"Every child deserves a free education. And there is a chance for them to learn," Thomas said. "Our kids are not going to be rocket scientists or presidents. But maybe they can do things for themselves. We should never close the door on kids. They can learn."

Debates aside, there is no question that educating the profoundly handicapped is costly.

In a regular class at West Hernando, one teacher serves 28 to 32 students.

In Moglia's class, one teacher and three full-time aides are assigned to just 11 students. And that doesn't count the regular lineup of visitors to the room: a speech therapist, a physical therapist, an occupational therapist and a behavior analyst, among others.

Moglia's class is also a warehouse of expensive tools.

The tricycle that Josh Gilbert uses to strengthen his legs has a list price of $1,000. Moglia found one for the bargain price of $650. A device called a dynamic stander, which operates like a wheelchair except that it allows its occupant to stand, lists for $1,300.

Even chairs can cost $500. Why? Because they must come with innumerable straps and adjustable supports to keep immobile torsos and lifeless limbs in place.

The needs are so great that the state Department of Education had to develop a formula to determine how much money districts should get to help these kids.

An average, healthy student in a regular education class costs the state about $3,400 a year.

Under the special formula, most of the students in Moglia's class can cost more than $13,000 a year. It is possible for the tab to run as high as $19,000 per child. It is a cost that no private school in Hernando County chooses to bear.

The need to devote such vast resources in money, space and staff makes School Board member Sandra Nicholson wonder if public schools are the best place to serve such children.

Nicholson grew up with a sister who was mentally handicapped. She watched her mother start a workshop that served disabled kids who are trainable. She has served on the board of Arc Nature Coast, an agency that provides services to mentally handicapped people. She is not unfamiliar with severely disabled children.

"What they need is medical care. And that is what we have to provide, and quality-of-life care," Nicholson said. "Is that the job of public school? . . . I don't think so."

While she understands that the "institutions" of decades ago were not always pleasant, Nicholson say maybe the institutions should have been fixed, not done away with.

"I don't see a great benefit to that student that we can provide," she said. "It's quality of life -- keep them clean, dry and no bedsores."

'You can't teach her anything'

Indeed, advocates for disabled students, parents and teachers are hard-pressed to describe what schools can do to help some of the most severely handicapped children.

One such student is 16-year-old Nicole Maxwell.

Shaken as a baby, Nicole is 75 percent deaf and 75 percent blind. She can't walk. She is fed through a tube in her stomach and wears diapers that Moglia's staff must change periodically throughout the day.

Nicole's school day consists largely of sleeping in the back of the room on a pallet of beanbags. Sometimes, an aide will open an outside door near her nest and turn on a radio. It allows her to hear the music and to feel the breeze on her face.

Occasionally, a student from a regular class will read to her.

Through the day, Moglia and her staff will move her from one place to another. They strap her into a chair. They lay her down in an adult-size swing, which is equipped with a mobile toy (a red M&M) that hangs inches above her face.

Part of this routine is a simple change of scenery. Part of it is to make sure Nicole does not develop bedsores and to reposition her joints, in case she's uncomfortable.

"She can't do anything," says Nicole's adoptive mother, Paula Maxwell. "You can't teach her anything." Still, she believes school for students like Nicole serves a good purpose.

"It gives your parents a break," Maxwell said. "You can get your hair done. You can get a cup of coffee with somebody. It gives you a chance to give the child better care when they come home."

And even for students such as Nicole, school adds to the quality of life, according to her mother.

Instead of being shut in all day, they have to be readied for school. They must leave the house and ride a bus. They see people and others see them. It's much more preferable, Maxwell says, than letting the children lie "there waiting to die."

"You still don't know how much a child can comprehend," Maxwell said, and school is probably the highlight of their lives. "The children didn't ask to be this way. The least we can do is to take care of them."

And as Superintendent John Sanders sees it, schools are the best place to deliver those services.

"We think every child is worthy of our attempt to give them a quality education. There isn't anyone (else) out there that can do that. There isn't anyone out there who can do it as good as we can," Sanders said.

"How would you like to be a parent and have someone tell you we can't do anything for your child and that you have to take them home and put them in a box.

". . . That may be done in some places, but not in America."

Lessons in compassion

Aside from what school offers these profoundly disabled students, many people at West Hernando believe the students have something to give in return.

If they were kept in isolation, they might be grist for ridicule. Generations of children have pecked away at these kids, calling them retards, speds (short for special ed) and droolers.

Class clowns, comedians and -- more than we care to admit -- much of the able-bodied population have mimicked their atrophied limbs, their curled fingers or their rolling eyes.

But at West Hernando Middle, where Moglia and her staff take great pains to keep the students visible, that type of behavior is rarely seen.

That begins at Moglia's door, which is always open.

Practically speaking, Moglia says the open door gives her security in case a child has a seizure and she needs to call for more help. More than that, it invites people into her class.

Able-bodied students who complete tests early or finish their classwork trickle into Moglia's room to offer a hand. They run errands. They cut out shamrocks for St. Patrick's Day. They build block towers with Moglia's kids.

Beyond that, West Hernando has established a buddy system.

In the morning, able-bodied students are at the bus stop to help wheel the disabled students inside. In the afternoon, another crew wheels them out. If a fire alarm sounds, kids and teachers from other rooms rush to Moglia's class to help with the complex task of evacuating the helpless.

"They learn that there are other people less fortunate than them," said Roger Palmer, a technology education teacher with a classroom down the hall from Moglia's. "It gives them a compassion that is missing today. It brings out the better side of them."

Moglia and Thomas like to tell the story of "the princess," an impeccably dressed girl who was nudged into the buddy program by a mom who was concerned that she lacked compassion.

After she finished the program, the girl's mother wrote Moglia a note to say her daughter, having met children whose lives were so difficult, had become a changed person.

The princess had grown a heart.

Among the most eager visitors to Moglia's classroom are students from Brian Lomio's class of students who are classified as severely emotionally disturbed. His students struggle to handle social situations. Their biggest problem is managing their anger.

Under Moglia's watchful eye, they step into help kids that, like them, have been tagged with cumbersome labels and who are somewhat stigmatized in society.

"They come in here and they get a sense of self-worth," Lomio said.

Gayle Lovelace, who teaches the same type of students, agrees. "My kids love to go there. I think it gives them a purpose in life. They are helping somebody else instead of somebody helping them."

'Everyone has something to offer'

Ultimately, conversations about the purpose of educating profoundly handicapped children touch on discussions about the value of human life.

Some advocates contend that children who live in silence or who appear to be helpless may be much more conscious of the world around them than we give them credit for. To them, talking in terms of a cost-benefit analysis seems cynical.

"I think it's really sad when humans start trying to evaluate when it's not worth serving a needy human because of the cost," said Larissa Cummings, a spokeswoman with the Disability Rights Education and Defense Fund, based in Berkeley, Calif.

Even though almost one in five Americans has some type of disability, many able-bodied people do not grasp the significance of programs that serve them, said Lynda Van Kuren, a spokeswoman for the Council for Exceptional Children in Arlington, Va.

She says it's shortsighted, too, when you consider that nearly every person who does not die young will eventually become disabled. There's a story among American Indians, she said, of a hunchbacked woman who became a valued breadmaker because she was the perfect height to pull bread from the oven.

"As a society, we should want to learn to be accepting of other differences," Van Kuren said. "Everyone has something to offer."

In Moglia's classroom, meeting the kids startles some visitors. Some find it difficult to watch their struggles. At first, they cannot see personalities. But, like stars at dusk, they gradually come into view.

Autism, which affects a child's ability to communicate and understand things, does not keep Joseph from being a class clown. He quotes lines from Disney movies and mimics their characters with great precision. When he found a hair in his lunch plate recently, he didn't grimace. He held it over his lip and said, "Look, whiskers. Like a tiger."

Kelton's crippled body is so stiff in the morning that he appears to be frozen when the adults pull him from his wheelchair. But within minutes, he begins crawling around on the floor trying to untie the shoelaces of visitors. He loves jokes. And if a teacher's aide gets her feet tangled up and trips, Kelton is likely to cackle joyfully.

Perhaps the most captivating personality in the room is a 19-year-old girl who lives under the "do not resuscitate" order. She has an infectious smile and a boisterous laugh. When male visitors enter the room, she becomes an incurable flirt.

"It makes you feel guilty when you come in in a bad mood when you see someone like her who is always happy," said Thomas, the teacher's aide.

Van Kuren, with the Council for Exceptional Children, said it is that spirit that people should not dismiss. A woman on her staff has both an uncle and a son with Down's syndrome.

The uncle lived in the era before Congress, in 1975, enacted what has evolved into the Individuals with Disabilities Education Act. He never left the family home.

Meanwhile, her son, living in an era where Down's children can go to school, has learned two languages and how to play a musical instrument.

"I am a former special education teacher," Van Kuren said. "I would never put limits on what a child is able to achieve because I think children break that over and over again."

That idea is what drives Liz Weber, who oversees exceptional student education in Hernando County. She also wonders what miracles medical science might bring to the profoundly handicapped kids who now live largely in silence.

"What happens three years from now if something comes up that could change that for a child?" she said. Children who have been in school, who have not been forgotten in some darkened room, will already have their bearings. They won't be lost.

And if that miracle never comes?

"It is my true belief," Weber said, "that we can make every child more independent and that we can give them some dignity in life."

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