Jeanne Oberti speeds her family’s white minivan past a Gloucester Township school bus and then navigates a turn off the twisting two-lane road at a stand selling Jersey tomatoes. Eventually, she pulls up in front of Ambassador Christian Academy, a stucco building with three white crosses rising from the manicured grass, and there she unloads her four children. Her eldest, 11-year-old Rafael, heaves a backpack over his shoulder and walks down the hallway to Arlene Burnett’s 4th grade classroom. Rafael spends this Monday morning tracing his name in cursive and then slowly printing the numbers and letters that tell where he lives. A classroom aide reminds him to cross his t’s and dot his i’s.
Rafael has Down syndrome. When he started 1st grade here in 1992, he spent the first two weeks sitting in a chair, jacket on, clutching his backpack. The staff let him sit like that until he was ready. Now Rafael is doing pretty well in school, as his work this morning seems to indicate. Still, it’s not what Rafael’s parents had envisioned for their son. They had hoped he would attend the local public schools. But more than that, they wanted him enrolled in a regular classroom in the local public schools.
Jeanne and Carlos Oberti felt so strongly about this that they took the Clementon, N.J., public schools to court, hoping to force resistant district officials to comply with their wishes. In their suit, they asked a state administrative-law judge to order the district to educate Rafael in a regular classroom in their neighborhood school rather than in a special education classroom. That judge ruled against the Obertis, but then--to the astonishment of many--a U.S. District Court took their side. And a year later, the U.S. Court of Appeals for the 3rd Circuit concurred. “Inclusion is a right, not a privilege for a select few,” the District Court judge wrote. Those words--perhaps the strongest ever written by a judge in support of educating disabled children in regular classrooms--thrust the Obertis and the Clementon public schools into the national spotlight. The news media descended on the small town and its 500-student elementary school district. And advocates of inclusion adopted the judge’s words for their cause.
Throughout the legal battle, the school district argued that Rafael was too disabled and too disruptive to be taught in a regular classroom. The Obertis said the district never provided their son with the services and support he needed; Rafael’s classroom behavior--which the couple maintains the district grossly exaggerated--resulted from deficiencies in the educational program, they said, not from their son. The federal courts agreed. They ordered the district to develop a more inclusive plan for Rafael, but they did not explain exactly what that meant. By the time the family and district officials sat down to talk about what it might mean, the Obertis decided there was too much bad blood to negotiate and opted, instead, to keep Rafael at the Christian academy he’d been attending in the meantime.
Rafael’s story is emblematic of a larger national conflict between the staunch advocates of including children with severe disabilities in regular classrooms and those who question the wisdom and fairness of such a policy. The Oberti case unfolded as the disability-rights movement was gaining steam and as our national thinking about what children--and adults--with disabilities can and should be expected to do was beginning to evolve. It raises important questions about control and balance. Whose expectations should govern a child’s education? Do the rights of the many--in this case, an entire class of children--weigh more than the rights of one?
“For Sale’’ signs poke out of the front lawn of the Obertis’ two-story home, which sits on one of the biggest lots on the block. A wooden fence encircles the backyard, which, over the nine years the family has lived in the house, Carlos Oberti has filled with a mini-basketball court, above-ground swimming pool, and car park.
Since the Obertis began sending their children--Rafael; Christopher, age 9; Stephanie, 7; and Gabrielle, 6--to Ambassador Christian Academy a half-hour away in Glassboro, the family has retreated from life in Clementon. Not that they ever felt too comfortable there to begin with. “We live in Clementon, but we’re not of Clementon,” explains Jeanne, who is finishing a college degree in music education. Carlos, a native of Ecuador, markets licorice extract abroad for a company in nearby Camden. He describes Clementon, a working-class community of 5,600 residents, as “a small, nothing town.”
The Obertis are hoping to move to Glassboro to be closer to the children’s school. There isn’t much keeping them in Clementon. The children used to play organized sports in the community. But when the family received a notice suggesting that Rafael join a T-ball league for children with disabilities, instead of the one he was already playing in, they decided to drop out altogether. Family is the center of their lives. It’s where everything starts and finishes, Carlos says.
Rafael used to have his own bedroom in the Oberti house, but since Carlos’ parents came to live with them from Ecuador, he’s had to share a room with Christopher. They take turns sleeping on the top bunk. Among other things, Rafael is responsible for dressing himself, making his bed, helping set and clear the table, and checking little Gabrielle’s math homework with a calculator after doing his own. All the Oberti children are expected to look out for each other, particularly for Rafael. Which is why the Obertis are willing to pay roughly $8,000 a year for the four children to attend the same private school.
When Rafael smears cream cheese from his bagel on his face during breakfast, Christopher tells him: “Rafael, wipe your mouth off and eat right. Don’t tear off the food. Do it like this.” He bites gingerly into his bagel. Stephanie laces Rafael’s hiking boots for a trip to the corner convenience store. On the way back, Christopher and Stephanie race home. Rafael takes off behind them. When he wanders into the street, Stephanie tells him to move back. He does. Later, when the children come in from playing a game of touch football, Carlos asks Christopher if Rafael had his jacket on. Christopher admits that he doesn’t know. Carlos admonishes: “It’s your job to know; he’s your brother.”
Carlos had called the children in from the football game. He doesn’t much like them playing with the neighborhood kids. They have, on occasion, teased Rafael. Too many of their families, he says, don’t have “good values.” So, until the Obertis move, much of the children’s free time is spent inside the house or within the wooden fence in the backyard.
Jeanne describes her husband as tenacious. When he needs something, he refuses to take no for an answer. His standards are high. Before the children leave for school, he dabs their sweaters with tape to remove lint, smooths their hair, and wipes their hands and faces until they glow. When Rafael’s mouth falls slightly open, as it does from time to time, Carlos taps his son’s face lightly, and his jaw clamps shut. When Rafael sings in the junior choir at church, Carlos cues him from the pew, motioning for him to sing louder or pay attention to the director. Later, sitting next to his son on a pew, Carlos softly touches Rafael’s hands, a signal that he should clasp them in prayer.
Even though Rafael does not attend Clementon Elementary, the Obertis believe things have worked out for the best. They won the case, they say, for families following in their footsteps. “We did feel we were supporting ‘the cause,’ “Jeanne says. “There was some peer pressure from other parents of kids with disabilities to put Rafael back in Clementon. We wanted to finish what we’d started, but we came up against the realization that we had to put our child first. It’s a compromise. We’re not heroes.”
In one of the family’s many photo albums, sandwiched between shots of the children at the beach and Rafael reclining on a chaise lounge on a business trip to Latin America with his father, is a picture that takes up almost a page by itself. It shows the four smiling children in front of a large hand-lettered sign hanging from their front porch: “U.S. 3rd Circuit Court. Rafael Oberti vs. Clementon Elementary. We won . . . AGAIN.”
The Obertis are self-described idealists and risk-takers. From the time Rafael was born, when they were told they should put him up for adoption and try again, Carlos and Jeanne have been wary of outside opinions. Jeanne recalls a time, years ago, when a speech therapist suggested that Rafael learn to use a speech board, a device that allows nonverbal children to communicate by pressing letter keys. “I said, ‘Wait a minute. You’re supposed to work on articulation, not say my child won’t ever speak,’ ” Jeanne says. “It really put us on our toes. Low expectations are a very, very dangerous thing.” Later, they were told Rafael probably would never read, but he now does, albeit at the kindergarten-1st grade level.
Carlos tells “the bicycle story.” Rafael and his younger brother Christopher had training wheels on their bikes. When the time came, Carlos took Christopher’s training wheels off, and he rode away. But Carlos didn’t take the training wheels off Rafael’s bike. Then one day, months later, Rafael picked up his brother’s bike and took off. “I was worried that he wouldn’t do it,” Carlos says. “Then I realized, of course he’ll do it, just a little more slowly.”
None of this has been easy for the Obertis. When Rafael was born, Carlos struggled for three months to accept his son’s condition. “I couldn’t deal with it at all,” he says. “But I finally accepted it. And I made a promise to myself; I promised to help Rafael succeed at anything he decided to do.”
Court documents show that in 1989, when Rafael was 5 years old, he had limited speech skills and an IQ of about 59. As far as New Jersey was concerned, that made him EMR--"educable mentally retarded.” He had been in a variety of special education programs since infancy, but when the time came to enroll him in kindergarten, the Obertis asked the Clementon district to place him in a regular classroom.
The Obertis knew traditional special education was not going to take their son where they wanted him to go. They had seen other children like Rafael wind up in sheltered workshops or group homes. And they didn’t want any part of that. “I didn’t know at that point that inclusion was so new to the district,” Jeanne says. “I didn’t know the ramifications of what we were proposing. All I knew was that was the atmosphere I wanted my child in.”
The Obertis don’t put much stock in IQ or other standardized tests; they believe that special educators rely too heavily on such measures when it comes to placing children like Rafael in school. The federal Individuals with Disabilities Education Act, they point out, requires the development of individualized-education plans for each disabled student. Labels like “multiply handicapped,” they argue, simply allow educators to “ship children off to the nearest [multiply handicapped] program.”
At first, Clementon school officials complied with the Obertis’ wishes. Rafael was assigned to Melinda Reardon’s morning developmental kindergarten class, which was designed to help children lacking in skills prepare for standard kindergarten. Reardon and an aide taught Rafael and 11 other students in a classroom divided by a set of bookshelves from a regular kindergarten class. Rafael spent his afternoons in a special education class in a neighboring district. Reardon, who had been at the school 14 years, later testified in court that Rafael demanded too much of her time and that the other children suffered as a result. Rafael, she said, would throw pencils and crayons, crawl under desks, spit, scream, and cry. On the playground one day, the teacher said, Rafael choked another student.
Speech therapist Karen Lightman testified that Rafael slapped her and was often disruptive during their sessions. In her opinion, Rafael needed to be in a special education class where he could receive more extensive speech therapy than Clementon could offer. “He had difficulty following directions and expressing his wants and needs, and that was my big concern,” Lightman testified.
To complicate matters, Rafael was not fully toilet trained. On the first day of school, Reardon said she received a note from the Obertis asking her to take him to the bathroom every 15 minutes. “The parents [also] requested that I send home a page of every single assignment that I did, so they could reinforce it, which was not a reasonable request.” Reardon eventually got another aide to work with Rafael, but it didn’t seem to help much.
Peggy McDevit, Clementon’s special education coordinator and a school psychologist, testified that she didn’t oppose including disabled children in the regular classroom, but she felt that Rafael wasn’t prepared. “I feel strongly that at some point in time it might be a beneficial experience for him, but at this time it would not be,” she stated. McDevit thought Rafael was frustrated in Reardon’s class, even with the aide. “The frustration came because I think that the expectations of Mr. and Mrs. Oberti were clearly that he would be exposed to everything in the kindergarten program,” McDevit testified. “The frustration that I saw in Rafael was, perhaps, in his own perception that he was not able to do many of the things that were going on in the classroom.”
The Obertis blame the conflict on what they describe as the “mediocrity” of the Clementon schools. For their part, they were thrilled with Rafael’s progress in the class. He learned to recognize 16 letters of the alphabet. “Of course, the other kids knew all 26, but I said, ‘Look at the progress,’ where the school said, ‘Oh, we failed, so he’s not in the right place,’ ” Jeanne says. “They kept saying he’s not ready. In their minds, I don’t think Rafael would ever be ‘ready.’ ”
Based on Rafael’s year in Reardon’s class, Clementon proposed that he be placed in a special education kindergarten class for the 1990-91 school year. At the time, Clementon didn’t have a program geared for children classified as EMR. So district officials wanted to bus Rafael to such a program in another district. The Obertis rejected that idea because it was a separate special education classroom where most students stayed for four years.
In August 1990, the parents and district agreed that Rafael would be sent to a new program for children classified as multiply handicapped just starting up in the Winslow Township school district, 45 minutes away from the Obertis’ home. The agreement stipulated that Rafael would be mainstreamed with nondisabled students in some of his Winslow classes, including music. But the promised mainstreaming never materialized. Rafael sat in the cafeteria with students from regular classes, but he wasn’t allowed to leave his special education class’s table.
Winslow’s speech therapist later testified that Rafael had progressed from using just a few words at the beginning of the year to using three- and four-word sentences. But the Obertis said Rafael had started wetting his bed again and, for the first time, was saying he didn’t want to go to school. The experience sent the Obertis to lawyers Frank Laski and Penelope Boyd of the Public Interest Law Center in Philadelphia. By February of 1991, the couple and Clementon district officials were facing off before a state administrative-law judge in what would prove to be the first in a long series of courtroom battles.
Clementon won round one. “This is not to say that the time may not come when mainstreaming in Winslow Township and/or Clementon will not be called for,” Judge Joseph Lavery wrote in his March 1991 ruling. “The present record only discloses that now is not such a time.” That same day, the Obertis decided to take their case to the federal courts. It was at this point, Clementon superintendent Bill Sherman says, that he and the Obertis stopped talking, and the lawyers took over.
As the lawyers began to put together their arguments, the Obertis enrolled Rafael in Clementon’s summer program, open to all the town’s K-6 students. Karen Albanese taught a 38-student class with two aides. Albanese later testified in court that Rafael crawled under tables, kicked an aide, poked children with pencils, and lay in the middle of the classroom and cried. On a field trip to the Campbell Soup Museum in Camden, Albanese said, Rafael refused to stay with the group and she had to restrain him. “At one point, he literally pulled me across the room,” Albanese testified. “At that point, he broke away from me and then started to run around that section of the museum. . . . And I’m holding him and trying to describe the tureens to the children. After a point, I couldn’t hold him anymore. . . . I was sitting with Rafael in the chair, and he was kicking his legs and flailing his arms. I was trying to hold him and say, ‘Rafael I need you to calm down now.’ ”
After the museum trip, Albanese insisted that Jeanne Oberti accompany the class on outings.
In the fall of 1991, Clementon officials again recommended the program in Winslow for Rafael. Instead, the Obertis enrolled their son at a Catholic school in Stratford, N.J. Rafael spent roughly two months in Patricia Caponi’s class of nine learning-disabled students, also attending a few classes with nondisabled students. Caponi later testified in court that when he was frustrated, Rafael hit other students, yelled, and tried to run out of the school. By the end of October, the school had asked Rafael to leave. Jeanne Oberti spent the remainder of 1991 homeschooling her son.
By the time the Obertis’ lawyers were ready to argue their case in federal district court, they had enough depositions, evaluations, videotapes, and expert testimony to fill four drawers of a file cabinet in the law center’s office. For three days in May 1992, every detail of Rafael’s school life was scrutinized in a Camden courtroom. The Obertis’ lawyers flew in a nationally known inclusion expert from Wisconsin and called to the stand two other special educators--one from New Jersey, the other from Pennsylvania. The district’s lawyer, Thomas Murphy, offered up a special education professor from nearby Glassboro State College. Rafael, almost 8 years old then, spent most of his time during the trial quietly coloring in the courtroom’s front row.
On Aug. 17, Chief Judge John Gerry of the District Court ruled for the Obertis. The next day, superintendent Sherman’s phone started ringing off the hook. Overnight, the case had become national news. “It all got interpreted as some kind of mandate, pro or con inclusion,” Sherman says. “To me, it was never that. It was one child. It just took on a life of its own.”
Sherman believes that Clementon was singled out “to make a point,” in part because of its small size and relatively limited resources. (The district has a $2.9 million annual budget.) “I knew the judge couldn’t imagine our little school district of 500 kids,” the superintendent says, shaking his head. “I know they didn’t understand that.”
Sherman says the Obertis had “very high expectations” for Rafael and for the changes Clementon should have made to accommodate him. “I felt like they were asking for changes that were ahead of the game,” he says. And advocates for inclusion do not necessarily disagree. “All of this was really just beginning in New Jersey,” says Joanne McKeown, mother of a child with Down syndrome and an inclusion advocate who testified for the Obertis. “I think Clementon had the bad luck to choose the wrong family [to take on].”
On May 28, 1993, the federal appeals court affirmed the lower court’s ruling. The Oberti case showed up on the Today show. Rafael was featured in a U.S. News & World Report cover story on inclusion, titled “Separate and Unequal.”
Although the appellate ruling in Oberti vs. Board of Education of the Borough of Clementon School District did not create any new legal standard by which inclusion cases should be judged, legal experts say it did clarify some issues. Paramount among them is that school districts generally carry the burden to prove why a student should not be included in the regular classroom. The Individuals with Disabilities Education Act of 1975 requires school districts that accept federal money to provide a “free, appropriate public education” to children with disabilities in the “least restrictive environment.” The law also requires schools to educate children with disabilities to the “maximum extent appropriate” alongside their nondisabled peers.
As Perry Zirkel, professor of education law at Lehigh University in Bethlehem, Pa., describes it, the law presents “a steep and slippery slope” for school districts. “The words of the law are tilted heavily toward placing students in the regular classroom for a major portion of the day, but it’s slippery because the language--'maximum extent possible'--is imprecise.”
Thomas Murphy, Clementon’s lawyer, wanted to appeal the ruling to the U.S. Supreme Court. Sherman did not; the district had already spent some $214,000 on the case, and the superintendent had had enough. Today, Murphy accuses Sherman of selling out on his principles and giving in to “political correctness.” But Sherman says he realized the appellate ruling was a sound one, and, besides, he wanted the matter to end.
The summer after the final ruling, the Obertis briefly sat down with Clementon officials but found no common ground. The district wanted to reevaluate Rafael and offered to have a team outside Clementon do it. But ultimately, the Obertis decided that the long case had created too much hostility between the district and the family. Rafael was progressing at the Christian school he was then attending, so they decided to leave him there. They simply walked away from the district and haven’t returned since.
Ambassador Christian Academy decided to take a chance with Rafael. He is one of nine students in Arlene Burnett’s class there. An aide, Jeanie Cook, works primarily with Rafael and another disabled student. Depending on the subject, Rafael either sits at a desk with the other students--albeit in the back row--or at a small table pushed against the wall. A few times a week, he receives speech therapy and help in mathematics and reading from the Gloucester County Special School District, which provides itinerant teachers to serve students with disabilities in the county’s nonpublic schools.
On this particular day, while the other students practice spelling words like “successful” and “bargain” for an upcoming quiz, Rafael works on one of three functional words his teacher hopes he will learn this quarter. He will spend the next three or four weeks on today’s word, “exit.”
“What does that word mean? Show me the exit,” Burnett asks Rafael, while Cook floats among the other students. Rafael points to the classroom door. “What do we do when we exit? Show me,” the teacher says. Rafael walks out the door, then, at Burnett’s request, points to exit signs at either end of the hallway. “What do the signs say?” she asks. “Sign,” the boy says. “No,” Burnett says. “Exit.” “Oh yeah,” Rafael says. “Exit.” He grins. Rafael returns to the table to trace the word exit and print his own sentence: “Exit means to go out.” He quietly draws a picture of himself and an exit.
Things don’t always go so smoothly. During a math lesson, while other students stand at the chalkboard dividing 97 by 60 and 74 by 20, Rafael uses a calculator to add two-digit figures. At one point, he gets frustrated and lays his head on Cook’s shoulder. “It’s hard,” he complains. “Come on, Rafael, you can do it,” she says. He puts his head on the table. Burnett comes over. “Come on, Rafael. Easy as cake, right?” Rafael starts to cry. Cook brings over a box of tissues. After Rafael spends a few minutes playing with a tissue, Cook gets him to refocus on his math. After he does a problem correctly, he exclaims, “All right” and makes the thumbs-up sign. Rafael is a master of slang.
Some of the children in Rafael’s class have been with him now since 1st grade. Most are unfazed when he starts to hum in class or cry or play with his pens and pencils. A few, however, still find it hard to ignore. For now, Rafael’s language skills make it difficult for him to converse freely with his classmates. But during lunch break, several make room for him as they practice a dance step. Rafael follows, a half beat behind. Later, at recess in the tree-lined meadow behind the school, he hangs off to one side with a few other boys, while the girls commandeer a soccer ball.
With only 78 children in its pre-K through 6th grade program, the academy prides itself on its family environment and strong parental involvement. While there are other students in the school with learning problems, Rafael is the most severely disabled student the school has ever enrolled. “This wasn’t a crusade or a policy issue for us,” principal Wellington Watts says. “It was just, here’s a family with a need who came looking for help.” Watts says the academy accepted Rafael because he and others at the school knew the Obertis “would bend over backward to make this work.” The family has organized in-service training for Rafael’s teachers and put them in touch with a special education consultant who helps develop Rafael’s curriculum. For its part, the academy has given teachers release time to attend inclusion conferences and hired an aide. In addition, faculty members meet with the Obertis at least once a month to discuss Rafael’s program.
But even at Ambassador, some parents have expressed concern over Rafael’s behavior. One family pulled their daughter from the school because, as Watts puts it, “they didn’t feel Rafael had developed the social graces they wanted their child exposed to.” Another couple approached the principal because they were worried their son was not receiving enough attention in class. That worry, Watts says, has since diminished. He has had to call Rafael’s father twice. Once because Rafael refused to cooperate with the teacher. And again, recently, because he put his jacket on and threatened to leave the school. Carlos arrived, spanked Rafael, and that was the end of the problem.
Without exception, the teachers Rafael has had say he is a challenge in the classroom but a rewarding one. They tell how they’ve spent hours drawing up lesson plans just for him and how, at times, they have disagreed with the Obertis about what’s best for Rafael. “Sometimes, I just had to say to them flat out, ‘This isn’t going to work,’ ” says Sue Sawyer, who was Rafael’s 2nd grade teacher. “They started to trust me. So they let me take over.”
Still, the question remains: Is Rafael in the right place? Or would he be getting and learning more in a special education setting? “I don’t know if his skills would be higher,” Burnett, Rafael’s current teacher, says. “Some would say yes.” (Two of Burnett’s own children attend special education classes in public schools.) Sancha Hughes, a Gloucester County speech therapist who works with Rafael, wonders if the Obertis aren’t in some ways denying reality. “I know in their hearts they believe this is best for Rafael,” she says, “but I’m not sure that it is.”
For Watts, who used to teach in the public schools, the question about whether to place children like Rafael in a regular class environment all comes down to attitude. “Anytime something is mandated, people do it because they have to,” he says. “But for inclusion to work, it has to be because you want it, and you can’t mandate attitude.”
Most people in Clementon seem to have forgotten about the Oberti case, if they ever knew about it in the first place. On a blustery day this past fall, a group of parents gathered with their children outside the fire station for a Halloween parade. One mother said she’d heard of the case and thought that the family had won. Others had heard that the family had moved away some time ago.
But there are some locals who need no reminding. One such person is Barbara Cremean, mother of two girls, one of whom was in Rafael’s class at Clementon Elementary five years ago. “I just remember thinking, why is he here? He isn’t ready for this school,” she says. “And Clementon wasn’t ready for him, either.”
A number of area residents who are familiar with the case simply don’t want to talk about it. The local PTA president, the teachers’ union representative, and Rafael’s public school teachers all declined to be interviewed for this story, as did several school board members, past and present. Superintendent Sherman believes their reluctance to discuss the matter has more to do with a desire to put it behind them than anything else.
Murphy, the lawyer who argued the case for the district, is now out of the school-law business altogether. But he still argues that inclusion turns regular classrooms into special education classes for all the students. “I wouldn’t want my child in that class,” he says. “This is the guts of the whole issue, and judges don’t want to hear that. They want to see it as civil rights. Parents don’t want their children stigmatized, and they don’t want that stigma for themselves.”
For his part, Sherman insists that he never opposed inclusion outright. He says he believed then as he does now that the question of including disabled students in regular classrooms should be addressed on a case-by-case basis. “My fear is that some districts have implemented inclusionary programs out of a fear of litigation, and possibly those programs are not best for the child,” he says, smoothing the wrinkled and heavily highlighted copy of the appellate court ruling that he keeps at his desk. “Personally, I’ve never spent so much time on one student, one situation in my life. I don’t even know what winning means in this case anymore.”
To Stephen Leibrand, who left the Clementon school board last year after serving for nearly a decade, the case was about setting limits. “I saw this whole thing as maybe setting precedent for going too far,” he says. “School districts are afraid to say no. And we weren’t.”
It’s difficult to gauge what practical impact the Oberti case has had on the Clementon schools. A look at placement data from 1989 to 1995 shows that the special education students who have been educated within the walls of Clementon’s regular classrooms are overwhelmingly those with mild learning disabilities; students with more severe problems are still being placed in special classrooms outside of the district.
Though New Jersey ranks 48th in the nation when it comes to including disabled children in the regular classroom, some changes are afoot, sparked in part by the Oberti case. Last spring, the state board of education revamped its rules on inclusion to incorporate the ruling. And a state task force currently is looking to rebuild the state’s school-funding system, which gives districts fiscal incentives to ship students out rather than keep them in regular classes in their neighborhood schools.
Not all parents of disabled children are pleased by these developments. And some, like Terry Bair, whose 11-year-old daughter Eliza-beth has Down syndrome, even feel threatened. Bair’s number-one fear is that special classes and schools for the disabled will eventually be shut down as pressure mounts to mainstream such children. For three years, Elizabeth has attended Kingsway Learning Cen-ter, a private school in Haddonfield, N.J. Her local public school district pays her $21,000-a-year tuition. Bair believes the special attention and instruction Elizabeth receives at the center is just what she needs. She says her daughter would feel overwhelmed in a regular classroom in her neighborhood school.
Bair says she does not oppose inclusion; she just wants to make sure parents have choices. “I think most teachers are overwhelmed with the children they already have in their classrooms without special-needs children being added,” she says. “The bottom line to me is, are they going to be resentful that they are being asked to teach ‘these kids’?”
For now, Rafael is where his parents want him to be. Legally, if they decided tomorrow to send him back to the Clementon public schools, the district would be obligated to serve him in a regular classroom in their neighborhood school. But it won’t likely come to that.
Still, the Obertis will have to decide where they want Rafael to attend school once he reaches the 8th grade, the highest grade level at Ambassador Christian Academy. “I don’t know where the future will be for Rafael,” says Watts, the principal. “We’ve been constants in his life. I don’t know if there’s another school that would attempt what we’ve done. It’s going to be a big bridge to cross.”
The Obertis’ long-term vision for Rafael is that he be surrounded by a supportive circle of family and friends, not people merely paid to care for him. They would like to see him develop as an individual, maybe one day living on his own and starting a family. Or maybe he will live with his brother. It’s hard to say at this point. But there is one thing the Obertis are adamant about: They aren’t going to place any limits on Rafael. “Life can hold something much bigger than my hopes for him,” Carlos says.
Seated with his family at the Laurel Hill Bible Church, Rafael runs his hand across his father’s freshly shaved face, tracing the lines of his jaw and throat. He eventually lets it fall onto his father’s leg. Carlos grasps his son’s hand in his own, and with the other, he points out the words in the hymn book from which the congregation is singing. Rafael gently nudges his father’s hand aside and points to the words himself, his own voice, softly, half a beat behind, joining the others.
