Whenever 2-year-old Caleb McElreath was placed on the changing table at his day care center, he would tense his body into a taut arc and cry at a caregiver's touch. Trapped inside himself, he could not explain why the hum of an overhead fan, the drone of a distant airplane and the clamor of a preschool classroom ricocheted ferociously inside his head.
One of 500,000 children and adolescents in the United States diagnosed with autism, Caleb, now 6, leaps downstairs to greet a stranger, and easily bounces among several conversations, unfazed by clanking silverware and chairs scooting across the floor.
"Pizza?" his mother, Becky Stern, asks.
They agree on yogurt. While his parents eat pizza, Caleb spoons pink goop into his mouth, sings "Barbara Ann" and muses on his future: "I want to be a truck driver."
But Caleb's journey from withdrawn toddler to gregarious kindergartner nearly hit a dead end. His family pulled him from the Chapel Hill-Carrboro School District because, although he was "bursting with excitement" to go to kindergarten, he would have been placed in a classroom with children who couldn't speak.
Dozens of families with special-needs kids have moved to the small, affluent Chapel Hill-Carrboro School District—from New Jersey, Massachusetts, even Pakistan—because of its proximity to UNC's TEACCH program, a renowned instructional model for autistic children. Despite Chapel Hill-Carrboro's reputation as the highest-performing district in the Southeast, a growing number of parents claim those accolades don't translate to special education. While the district is not alone in its struggles to educate special-needs kids—nearly every school system faces similar challenges—the shortcomings are more glaring in Chapel Hill-Carrboro because of its wealth and access to resources.
"Chapel Hill has a disproportionate number of families with autism, but it's not necessarily better here," says Lee Marcus, clinical director of the Chapel Hill TEACCH Center. A clash between heightened expectations and reality creates "a lot of potential for conflict," says Marcus, also professor in the Department of Psychiatry at the UNC School of Medicine. "Advocacy has become more heated than in the past."
With a few exceptions, these parents, some of whom have since transferred their children to private or charter schools, blame not teachers, but the district for failing to appropriately educate their children and stonewalling their advocacy.
Marie Corwin has an autistic son, who she says didn't receive required reading or social skills trainingfor two years. "I had to make a stink, and then it started happening," she says, adding he's now flourishing in a higher-level class. "The fact that he lost more than a year of academics and social and language development due to his incorrect placement is something that I blame totally on the district."
The disagreements between parents and the district have escalated. Parents have e-mailed angry missives to one another, board members and administrators with subject lines such as "another distress call...please help." They've written letters to The Chapel Hill News. They've threatened to contact the U.S. Office of Civil Rights.
To talk with parents and teachers is to hear a litany of egregious examples:
The district contends these parents, many of whom are affluent and well-educated, want a level of education for their children that schools can't —and aren't legally required—to provide. Federal law says public schools must provide only a "free and appropriate" education that allows children to make "reasonable" progress, not one that maximizes their potential.
"A lot of conflicts center on expectations," says Mary LaCorte, assistant director of the Exceptional Children's Assistance Center, headquartered in Davidson. "Parents are striving for the best education for their child, the school system is trying, but when schools don't have the staff to meet their needs, or don't agree on what's needed, there can be a conflict. Very frequently the school isn't wrong and the parent isn't wrong."
"Parents want the very best for their child," says Margaret Blackwell, director of Exceptional Children's Services for the Chapel Hill-Carrboro School District. "But the very best isn't what they get. That doesn't mean the district wants to do the minimum; we go well beyond it. We hope to come to a place where everybody thinks this is a good, solid decision for the child. And sometimes you reach an impasse."
Many of these impasses remain unresolved, and parents are looking to the district's Special Needs Advisory Council to give them additional leverage in their children's education. Composed of parents, district staff, administrators and a school board member, SNAC is scheduled to release recommendations on several problem areas to Chapel Hill-Carrboro schools Superintendent Neil Pedersen this month; a consultant hired by the district, John Thomas, is expected to issue a report within a few weeks.
At stake is the welfare of special-needs kids, whose future, even more so than other children, hinges on incremental benchmarks: learning to say yes or no, to walk independently down the hall, to hold a pencil.
Rafael and Deanna Rodriguez's 7-year-old son, Rafi, has autism. They have long battled the district over Rafi's behavioral progress, which stalled after being placed in a restrictive classroom. His parents say Rafi behaves normally in his YMCA after-school class of 24 typical children. His aide there is a former Chapel Hill-Carrboro teacher. "There's a time clock ticking in every parent's head," says Rafael Rodriguez. "In 15 years, parents and educators alike will see if our children are productive contributors to our society or have become dependents of the government."
More than 1,100 special-needs children, about 10 percent of all students, are enrolled in Chapel Hill-Carrboro schools. The wide range of disabilities includes such conditions as mental retardation, hearing impairments and autism. Children with disabilities need enormous resources and often require aides, physical and occupational therapists, and special technology such as communication devices to learn.
While 20 years ago autism was rare—an estimated 4 in 10,000 people were diagnosed—the Centers for Disease Control and Prevention reported last month that 1 in 150 has some form of the disorder. Those drastic increases have been mirrored in Chapel Hill-Carrboro, which, like districts throughout the United States are besieged with growing numbers of exceptional children. In the district, there has been a 4,200 percent uptick in the number of autistic students since 1986-87, when autism was first recognized as a disorder. Then, just three students were diagnosed; in the 2005-06 school year, there were 129.
Not only must the district deal with the influx of children, but it also has to contend with their parents and byzantine special education law. Legally savvy, many parents have lodged complaints against the district for inappropriate placement, absent services, understaffed classes and poor communication. And the law is vague. The federal Individuals With Disabilities Education Act, which requires children receive a "free and appropriate" education from "highly qualified teachers," leaves its provisions open to interpretation. All public schools must comply with IDEA, which Congress reauthorized in 2004.
Parsing the law's language, such as defining the term "individualized" or "reasonable," has put parents at loggerheads with the district. "Parents don't have a right to demand a particular teaching method," says Jane Wettach, director of the Duke University Children's Education Law Clinic, which provides legal assistance to low-income families. "But they do have a right to demand reasonable progress. And reasonable is not defined."
Caleb's parents couldn't convince the district that it was reasonable to place him in a higher-level classroom. Nor was his class adequately staffed. When Caleb entered the pre-K program at Lincoln Center at age 3, he was placed in a self-contained autism classroom, a restrictive setting that serves children who need intensive services and cannot cope in blended or regular rooms.
"It was appropriate for him at that time," Stern says. With help from an excellent teacher, Caleb began emerging from his shell when he was 4. Despite letters from therapists and TEACCH and district staff vouching for Caleb's progress, Stern says the district wouldn't place him in a less-restrictive kindergarten classroom. "They said we tailor the program to meet the child's needs," says Stern, also a teacher. "That's not true. Margaret [Blackwell] wouldn't even consider it on a trial basis. There were no options."
After an unsuccessful mediation with the district, Caleb's parents enrolled him at the Little School in Hillsborough, where, with help from an aide, he has easily blended with his 19 classmates in a regular kindergarten class.
"I knew it was in him. I was panicking thinking my little boy would not have friends," Stern says. "If we had agreed with Margaret, he would have stagnated."
Although children might start the year in a self-contained classroom, they may be moved up later in the year, Blackwell says. "Very seldom has a transition team read it wrong. They are very vested in children and want to see the right thing happen."
Failure wasn't an option for Farzan Rahman and her husband, who moved to Chapel Hill from Pakistan for their son, Ahman, who is mildly autistic and has developmental delays. "There was no way of educating him in Pakistan," Rahman says. The district placed Ahman, then 12, in a basic life-skills program, even though Rahman says he was more advanced. "We had no idea he'd been demoted," Rahman says. She went to the district to request he be reassigned to an occupational track. While the district agreed, Rahman says her son's teacher "gave him a hard time" because his English was poor. Hindi is his native language. "This boy thrives on encouragement and recognition; he would study every day and put in a lot of effort," Rahman says. "The teacher kept leaving me messages saying he was difficult because he doesn't understand."
Rahman transferred Ahman, now 18, to Pace Academy, a charter school near Chapel Hill, where he's in the occupational skills program. "He's doing so well. I have never heard a complaint. He's so excited to be in school. It's a wonderful place."
Critical to a child's placement and progress is the Individualized Education Program (IEP). Legally binding documents, IEPs list a child's therapies, set goals and detail special services such as aides. Joan Kofodimos and Kyle Dover have a daughter with mild language and motor problems. Her IEP required that she have an aide. Yet for two months, she didn't, and her parents were never notified.
"No one called us," Kofodimos says. "Some people feel the lack of communication has been intentional."
"The IEP wasn't the problem, but getting it implemented," Dover adds. "We know there are challenges for the district. I don't expect miracles, but I expect them to try."
The district didn't notify the Rodriguezes when their son's teacher suddenly resigned. They say they found out only by calling the teacher on his cell phone.
Pedersen acknowledges that the district has a communication problem. A report sent from the Exceptional Children's Division to the board and Pedersen last May listed communication as "an area of need."
"Passionate parents run into a legalistic structure," Pedersen says. "That can come off as we're not as compassionate as we should be. We need to personalize services and communication as much as we can. Our teachers and staff truly care, but I don't think it always comes across."
A CD plays a simple song, "Our day is beginning, there's so much to do," in a colorful classroom at Ephesus Elementary, where Debbie Hill teaches nine developmentally disabled 5- to-8-year-olds.
There is much to accomplish. Each day's learning is crucial for these children, who speak very little, and when they do, generally repeat only what is said to them. When they turn 23 and no longer can attend public school, the skills they have learned must carry them through adulthood. Some will live in group homes. Others might live independently. All will likely outlive their parents and depend on social services and their own abilities to survive.
"You have to get them now," Hill says. "Otherwise, they'll always be behind."
Today's theme is farm animals. An aide cradles a boy's hands as she helps him cut paper sheep and pigs. Two girls play with plastic cows and horses at a short table. Hill and another aide work with three children on reading short sentences.
"Who's smart? You're all so smart," Hill says encouragingly.
Hill has taught special education for 29 years, nearly half of that time in the Chapel Hill-Carrboro schools. She is a favorite among parents, even those critical of the district. "She's a saint," one parent says.
"There is a whole lot involved that people don't realize," Hill says. The paperwork is overwhelming, yet she has no planning period. Every moment in the classroom is spent pouring herself into her students.
Unfortunately, Hill plans to retire next year, and the district will have to fill yet another position.
Since 1999, 36 of the district's 105 special education teachers have resigned or been fired, according to district documents; the average tenure is two years. For autistic kids, these disruptions, especially if teachers or aides leave mid-year, are disturbing because they depend on routine and continuity to cope. When Caleb was in pre-K, his class had just one aide, instead of the usual two, for nine high-maintenance students. A second aide was finally hired, but was chronically absent. The aide was fired in January 2005, the embattled teacher resigned the next month, and Caleb became "racked with anxiety," Stern says. However, with extra help at home, Caleb improved and was able to enter regular kindergarten the following fall.
Blackwell acknowledges the 33 percent turnover rate, typical for N.C. public schools, but attributes it in part to the nature of a university town. "Some people move on with their spouses," she says, adding the district's autism support and training program could help retain teachers. "Some go back home. Some burn out."
Teachers, especially special education teachers, are underpaid considering the importance and intensity of their work. In the 2005-06 school year, North Carolina teachers earned an average base salary of $38,000, 11 percent below the national mean. And for this wage, special education teachers in some classrooms are kicked, bitten and scratched by students with behavioral problems. Aides, too, have demanding jobs, yet earn as much as fast-food managers—a little more than $10 an hour.
Low pay and punishing work shrinks the pool of special education teacher and aide candidates. One hire in Chapel Hill-Carrboro left after just a week. That person was hired two days before the beginning of the extended school year, a summer program to help kids retain their skills; he quit a week later.
"We had to add a teacher and the candidate pool wasn't there," Blackwell says. "We made a hire, but sometimes it's not a good fit."
Or perhaps teachers are leaving out of frustration.
Several former district teachers declined to comment for this story for fear of retaliation, but one, who asked not to be named, said she resigned not because of burnout but out of despair. She now works in another public school. Unlike Debbie Hill's classroom, which is inside Ephesus, for several years this teacher taught significantly handicapped children in detached classrooms that had no bathrooms, sinks or running water. The children often had accidents in class; they couldn't wash their hands, an important skill in learning to care for themselves. "I had a child with seizure disorder and who was paralyzed on one side and we had to go out of the trailer to the bathroom," she said. "The computers had nicer rooms than we did."
Carol Barlow's daughter, Hannah, was in a classroom that burned through several teachers and assistants. The lack of continuity meant Hannah's instruction was at best disorganized. "No one could tell me what reading level my daughter was at," Barlow says. "They had no idea about her behavioral intervention plan."
The behavioral intervention plan proved to be critical one day last May, when the Rashkis principal called Barlow to notify her that Hannah, who cannot speak well, had escaped from a two-student classroom staffed by two teachers. She walked across a soccer field and through a wooded area to a nearby house. According to the school incident report, the woman at the house called the school and said, "I have one of your students here."
"The school didn't believe it," Barlow recalls the woman telling her. "She'd been gone at least 25 or 30 minutes and the teaching assistant hadn't notified the office, which didn't know to alert me."
Hannah was returned to school safely, and after several conversations between Barlow and the district, a small bell was placed on the door.
"She has a wonderful teacher this year," Barlow says. However, that teacher may leave next year for family reasons. "We'll be anxious all over again."
Transitions are one of the focus areas for the newly minted Special Needs Advisory Council, which replaced the district's ineffective predecessor, the Exceptional Children's Advisory Council. Intended as a forum to air and resolve complaints and inform parents, the ECAD, led by Blackwell, met only quarterly and did little to appease them.
"Margaret [Blackwell] was receptive to our opinions, but from a parent perspective, the outcome was uncertain," says Adela Van Name, SNAC chairwoman.
The SNAC is composed of 15 parents representing each school, plus staff, Blackwell and school board member Mike Kelley. "There was a lot of initial resistance on the district's part," Van Name says. "But we worked together to create a parent-led group. That's huge."
Blackwell denies she resisted parental leadership of the SNAC. She says the ECAD was in place when she arrived at the district several years ago and acknowledges its shortcomings. "The ECAD didn't have a game plan. Everybody was frustrated," she explains. "The SNAC is more transparent. It gives a voice to more people, not just those with the wherewithal to speak."
The SNAC is also concentrating on teacher training. One teacher in the district, who asked to remain anonymous, says that while she "had a good idea of how to educate my students, I also felt I had a lot to learn about the different instructional methodologies." Yet she has received that training only through her own initiative.
District instruction, she says, has been limited to a two-day institute led by veteran teachers and a required physical intervention training. The teacher says she asked to attend a week-long TEACCH seminar over the summer, but the district told her it wouldn't pay for it. She attended anyway.
"I have not been asked or required by the district to attend a single outside training. After I find a conference that I think could help me help my students, it is up to me to ask for funding, permission and time to go. Gladly, I can say that every such training request I since have made has been granted."
The legislature has taken an interest in special-education teacher training. House Bill 26 would require the State Board of Education and the UNC Board of Governors to study the effectiveness of special-education teaching programs. The bill is the result of a legislative study that concluded training is a statewide problem, says state Rep. Paul Luebke, among the bill's co-sponsors. At a Triangle-area mental health forum, Luebke says the training is "the most consistent criticism I heard, particularly about the Chapel Hill school system."
Many parents view SNAC as another district attempt to placate parents through a powerless advisory group. SNAC has had less than five months to generate its recommendations, and with the school year ending in May, says Joan Kofodimos, "the logistics and time frame ensures everything that is done is trivial."
"They think we're part of the bureaucracy, but I really feel that the staff has bought in and Margaret has bought in," counters Van Name. "My mantra to parents is 'What was, was.' A new day is dawning. And it's time to move forward."
Since next year's budget is set, big-ticket items couldn't be appropriated until the 2008-09 school year. However, Kelley says the board can act immediately on most recommendations except for course or scheduling requests, which would have to wait until next fall.
In three months, the semester ends. Another school year down. The clock is ticking for parents of special-needs kids.
Teacher Kate Kennedy has an 11-year-old son with severe autism. She also teaches gifted children in the district. "I know what it feels like to be the professional in the situation, and I also identify with the families."
Several years ago, Kennedy's son had been placed in a pre-K program that was too advanced. She says Blackwell helped reassign him to a different classroom and the district hired a teacher to work with him individually each day. In another instance, the district wanted her son to share therapy time with several other students. "At the time, he was very young and didn't work well with a group. His inability to focus was cutting his direct instruction time in half," Kennedy explains. Eventually, her son received individualized therapy.
"I'm proud of the hard work I've done with Margaret. We communicate and get to where we need to be," Kennedy says, adding this was true before she became a district teacher. "I know my rights and I don't roll over when it comes to advocating for my boy. I don't get everything I want, but I know I'm only one member of the decision-making team. It's very important to maintain positive relationships."
The needs of exceptional children vary so widely, yet the district has to care for every child. "That can wear people out," Kennedy says. "It's hard being an optimist and a realist."
Caleb's family is balancing those ideals. At The Little School, the litmus test for Caleb is the raucous Chinese New Year celebration. It could pull many of the triggers known to set him off, including loud noises and strange food textures. Yet Caleb brazenly dips his hands in food to prepare spring rolls, marches in the parade and unflinchingly allows a teacher's aide to paint his face.
"At one time, that would have been unimaginable," his father, Michael McElreath, says.
Next year, Caleb will face another challenge as he transitions to first grade in a new school. Despite their bad experiences with district administrators, Caleb's parents aren't ruling out enrolling him in Carrboro Elementary. "I never had any problem with the teachers, aides or therapists," Stern says. "If the district says he can be in a regular first-grade classroom with supports, he may go."
Although Caleb still receives one-on-one tutoring and would likely need similar help in public school, he no longer requires an aide to cope with a noisy classroom or navigate the tacit rules of the playground.
"He's fired her," Stern adds, laughing. "He wants to be like the other kids."