Able to Be Included at School

SANTA ANA — Pulling out a $1 bill from his canvas backpack pocket, Johnny Palacio proudly proclaims that he intends to buy lunch for his friend Raymond.

For Johnny, this seemingly insignificant act is one of the highlights of the day--it tells the other students at Santa Ana High School that he is just like them, that he too has friends.

But Johnny, 15, is different.

He is blazing a trail for Down syndrome children by being the first to be fully “included” into the school, and one of few in the county to be able to attend a regular school.

Johnny’s passage from a special-education environment to an integrated setting also presented a challenge to his parents, John and Sonia Palacio, unlike any they had faced in their many years as social and political activists.

They wondered, would Johnny be teased? Would he be able to find his way around the enormous campus? Would he be lost in the sea of 2,400 students? Most of all, would he be happy?

His first months at Santa Ana High were not easy for anyone.

Johnny often had disruptive episodes where he would suddenly bolt away from aides guiding him to class through the maze of hallways, or security guards would be called in to lift him from school corridors when he didn’t feel like getting up, or his special-education teachers would be called en masse to coax him out of the swimming pool when class ended.

But as the year passed, Johnny began controlling his behavior and learning new skills.

Johnny’s success is largely the result of cooperation among school staff, his parents and his classmates. That cooperation, his parents said, can shed some light on the inclusion (also called mainstreaming) debate that has divided many school districts around the county and the state.

“[The inclusion debate] has forced parents like ourselves to take ownership and responsibility to make sure that [our child] is given that kind of opportunity that will help him reach his full potential,” said John Palacio, 43, who heads the Orange County Mexican American Legal Defense and Educational Fund.

“How do we know what potential they could reach if we don’t give them the opportunity?” he said. “Twenty years ago, people [with Down syndrome] were institutionalized.”

Born on May 28, 1980, Johnny was the Palacios’ first child. The couple understood that Johnny’s condition was simply a fluke of nature, a circumstance they could not control. Down syndrome, a condition that causes mental retardation due to an extra chromosome, affects nearly one in every 650 babies nationwide.

Sonia Palacio, 44, a clinical social worker at UCI Medical Center, said she was profoundly saddened thinking of the challenges her son would face in an often cruel world. She said her first thoughts upon giving birth were what would happen to him after she died.

The Palacios were adamant about providing their son with the most normal life possible so he could survive without them.

“Children with special needs are apt to learn more from children without disabilities,” Sonia Palacio said. “People with special needs live in the community and have to interact with the community and the community has to interact with them.”

Despite his learning disability (he has an IQ of about 50--with 70 being the cutoff point for mental retardation), Johnny was blessed with a vivacious and gentle personality that endears him to most people.

He is quick to hug people and say, “I like you!” with a bright smile that shows his shiny braces and their green and red bands.

Eager to show off his nascent facial hair, he announces he is growing a beard and mustache.

He is popular at school, greeting students along the hallways and the students wave back, saying, “Hi, Johnny.” He has a passion for spaghetti with meat sauce, is an enthusiastic follower of “I Love Lucy” reruns and loves the Beach Boys.

“I like the oldies. ‘Surfin’ U.S.A.’ is the best,” Johnny said.

In addition to being a Golden Oldies fan, Johnny is an avid baseball player and bowler.

Johnny plays baseball in the Challenger Leagues, a special league for disabled children. Along with his younger brother Steven, 13, who does not have Down syndrome, and his dad, Johnny bowls every month as a member of a bowling league for the disabled.

But, Johnny had always been in an environment that provided a safety net, surrounded by other special-education students and their teachers. The first big jump Sonia and John Palacio took into full inclusion, was enrolling him in Santa Ana High School.

It was not an easy decision, although the Palacios were encouraged by Santa Ana High teachers and administrators.

“I told them, ‘He is a mischief-maker. He loves to be the center of attention. He is the class clown. I don’t know if your staff can handle it,’ ” Sonia Palacio said. “They said to me, ‘Let us try. Take the risk. Give him this opportunity.’ So how could I say no? I was so frightened. But you know what? He is doing wonderfully.”

In Santa Ana, district officials consider inclusion a priority.

Santa Ana is representative of school districts in which inclusion efforts with the collaboration of parents are successful, said Lucinda Hundley, head of the Santa Ana School District special-education program.

This approach to special education is different from other cases in Orange County school districts in which parents have been involved in legal battles to increase special-education inclusion.

One of the most controversial cases involves 7-year-old Jimmy Peters of Huntington Beach, who Ocean View School District officials tried unsuccessfully in 1994 to transfer from general education to a class for disabled students. School administrators said the boy was constantly disruptive and had several violent outbursts.

Jimmy was returned to regular classes in September 1995 after more than a year of legal wrangling. Other parents with disabled children enrolled in several Orange County school districts have created grass-roots networks to lobby on behalf of thousands of children with disabilities.

Statewide, it is not known how many children with Down syndrome, who are classified as severely disabled, are fully included in public education, officials said.

At Santa Ana High, teachers and administrators aggressively seek to place children in special education with the rest of the student population.

“We have an inclusive philosophy,” said Deborah Misservile, chairwoman of the special-education department at Santa Ana High. “We have a philosophy that we have a shared responsibility. The belief is that this is not a special ed kid, this is not your kid, but our kid. “

More than 100 special-education students are enrolled at the high school, according to Misservile. Johnny is the only one with Down syndrome. All of the students are with the general student population for most of the day with seven special-education aides to help regular-education teachers out in the classroom.

Each child’s needs must be independently evaluated according to his or her progress, officials said. In Johnny’s case, rather than focusing on academic skills, his teachers emphasize social skills.

Johnny’s year at the high school has given teachers and administrators a kind of road map for successfully integrating severely disabled children. They have found that the most successful approach is patience and flexibility.

Johnny has tried their patience many times.

He was initially enrolled in a full day of class--nearly six hours.

But they found that a full school day was too long for him. They adjusted his schedule to four periods from 8 a.m. to 1 p.m.

As a freshman in the fall, Johnny had an aide walk him to and from class. But his parents and teachers said that he hated it and rebelled.

Without warning, Johnny would run away from the aide, causing a minor upheaval on campus. After several episodes, his teachers realized he didn’t like feeling apart from the other students. They could get to class alone--why couldn’t he? As a result, they left him to navigate his way through the campus alone. Johnny now gets to class on time.

Johnny’s physical education class activities also posed a challenge for teachers.

Before enrolling at Santa Ana High School, Johnny had never set foot near a swimming pool, never mind actually go in the water for a swim. With gentle coaxing and patience, his physical education teacher Honor Smith taught him to swim.

He loved it so much that getting him out turned into a huge problem.

“We had some hilarious moments trying to persuade him to get out,” Smith said.

But he eventually learned that he had to leave the pool when all the other students got out. By May of this year, Johnny was out of the pool as soon as Smith’s whistle rang, indicating an end of class.

Academically, though, teachers have come to understand that Johnny’s improvements can be painfully slow.

“You think he is learning something and then you discover that he hasn’t,” said Wendy Laine, Johnny’s special-education teacher aide in science. “You see the progress in terms of a long, long period of time. You don’t see it day to day.”

Johnny’s behavioral lapses have been occurring less frequently, according to his teachers. When he does “act up,” he is punished by being placed in isolation for a day, meaning he is placed alone in a corner with a teacher who will not speak to him. There is nothing Johnny hates more than being away from people.

“He is so people-oriented . . . [isolation] is torture,” Sonia Palacio said. “He is a social butterfly.”

But he is also rewarded for good behavior and a good report card, which he receives every day, with a second lunch of nachos at La Chiquita, Johnny’s favorite restaurant in Santa Ana.

Those lunches with his dad, who picks Johnny up at school every day, have become increasingly frequent since Johnny has adapted himself so well to the school environment.

Not only have Johnny’s teachers contributed to his success, but so have many of his classmates.

Jose Tapia, a senior at the school, has taken Johnny under his wing. Jose helps Johnny open his locker during physical education class and looks out for him, making sure the bullies don’t pick on him.

“I do worry about [Johnny],” Jose said. “I saw a lot of the kids make fun of him and taunt him. They teach him bad words and try to make him look stupid.”

Jose said that he and the other students are learning about Johnny’s disability.

“I’ve developed respect for [kids with Down syndrome],” Jose said. “No matter what the disability, they are just like you and me except they have a setback.”

Mauricio Vazquez, a sophomore, said Johnny is a welcome addition to the high school campus.

“He’s fun to be with,” Mauricio said. “Everybody knows him. He’s a pretty cool guy.”

Other students seem a little frustrated with the amount of attention Johnny receives in the classroom.

“I think [inclusion] is a good way for us to see what it’s like to have a disability,” said Cony Rolon, a senior, who is enrolled in drama class with Johnny. “But in another way, it takes a lot of attention from our teacher. It annoys me when my teacher has to tell him to stop it.”

John Palacio maintains that what has been good for Johnny has been good for the other students.

John Palacio said he hopes more children like Johnny will become a part of the high school community in the near future.

“Right now, Johnny may be an oddity. He is the pioneer, so to speak,” John Palacio said. “But I think in four or five years, this will be more common.”

Johnny is not aware of the bigger issues surrounding his enrollment at Santa Ana High School. He is perfectly content with keeping things the way they are.

“I like math and I like to do homework. I like P.E. where I can swim. I go to lunch and me and Raymond sit at a table and talk with my friends,” he said happily.