It's early in July 1997, and Jack has just turned three. He doesn't talk. He doesn't respond to directions. He can't sit still for fifteen minutes. He shuns everyone around him, including his parents. On the rare occasion that his dad is able to make eye contact with him, Jack just stares back blankly; it's as though he's looking through glass.
Jack is wandering around his private preschool in Boulder, trying to get as far away from his classmates and teacher as he can. His teacher pursues him, hoping to get his attention. But Jack wants to be left alone. He finds a table and chair in another room and sits down with a book, flipping aimlessly through its pages. He likes chewing on paper and tearing pages to bits; by the time he leaves the preschool six weeks later, he will have destroyed about a dozen books. Jack has autism and Williams Syndrome, two developmental disabilities that rarely occur together.
Jack finds an easel and begins painting, leading his brush in a devil-may-care manner across the blank paper. His teacher sees this as an opportunity to interact with him and tries to help him hold the paintbrush correctly. But Jack crouches down and escapes through the arch that his teacher's arm has formed between her body and the easel. He walks away again to be by himself. This time his teacher doesn't follow.
August 21, 1997. Jack is sitting at a table in the basement of his house, his gaze never leaving the tutor beside him. She is teaching him to imitate her actions. She claps her hands together and tells him to do the same. He does. "Good job, Jack!" she cheers. He smiles, proud of himself. She tells him to put his hands to his ears. He does. She taps the desk and instructs him to do the same. He does. He laughs.
December 2, 1997. A baby's bottle, an Elmo figurine and a miniature Big Bird are lined up on the table in front of Jack. The tutor points to Elmo and says the toy's name. Jack repeats "Elmo" after her. She says "Big Bird," and he hands her the Sesame Street character. She replaces Elmo with a spoon and asks what is different now. He picks up the spoon. The tutor shows Jack a photo of his father. Jack turns to face the video camera, smiling at the man behind it. "Who is this?" the tutor asks. Jack tries, but he can't quite say "Daddy" yet.
Spring and summer, 1998. Vignettes of Jack's lessons are strung together in a triumphal last video. In the first few frames, Jack's tutor asks him to show her what he uses to drink. He picks up a cup from a table topped with assorted objects. "Drink," he says. His tutor gives him a high five, then picks up a plastic strawberry and asks what's missing from the table. Jack answers correctly. Another high five. On another day, Jack is learning prepositions and the relationship between objects. His tutor directs him to place the plastic strawberry between a cigar box and a cup. No problem. Another frame features Jack identifying the word "box" from a line of words and letters; later he places four marbles on a picture of the number four; in still another scene, Jack gladly retrieves a spoon after his tutor asks him to find one in the kitchen.
John Jones, who asked that his real name not be used, cries as he watches the tapes. He sheds tears of sorrow at the memory of the little boy who used to stare right through him and tears of joy for the man he now hopes Jack will become. Exactly what causes autism is still unknown, but it is the result of a neurological affliction and is just one in a series of pervasive developmental disorders ranging from Asperger's Syndrome, which is the least severe, to Rett's Disorder. People who are diagnosed with any one of the several autism spectrum disorders typically have little or no language skills, are socially withdrawn, do not respond when spoken to, and throw tantrums; most of the symptoms show themselves before the age of three. According to Jones, kids with such developmental disorders often can't learn to perform even the most elementary tasks without prompting. Jones and his wife are convinced that their son's progress is due entirely to a behavior-modification technique called Applied Behavior Analysis.
ABA is a broad term that includes a variety of methods for getting through to kids, but the particular kind that was used with Jack is called "discrete trial training." With this technique, a teacher gives a child an instruction ("Jack, put your arms down"), and the child then responds or doesn't; either Jack will keep his arms raised, or he will do as he is told. The third part of the discrete trial method involves the consequence of the child's response. If Jack fails to lower his arms, the teacher will repeat the instruction until he gets it right. When Jack understands, his correct response will be reinforced with a reward -- praise, a hug, a toy, a high five.
The Joneses also use another ABA method with Jack. Every skill that Jack does not naturally perform on his own -- from pouring cereal to tying his shoelaces -- is prompted by a cue and then broken down into small steps. When it is time for Jack to brush his teeth at night, his parents show him a small card with a picture of a toothbrush. Because he has brushed his teeth so many times before, he knows what is supposed to happen when he sees it. But first he must have each of the steps broken down for him: Get toothbrush, get toothpaste, get towel, unscrew toothpaste tube, turn on faucet, run toothbrush under water, squeeze toothpaste onto toothbrush, put toothbrush into mouth, brush teeth, spit toothpaste out into sink, rinse mouth, wipe mouth with towel, rinse toothbrush, turn off faucet, put toothbrush back in holder, put cap back on toothpaste, put toothpaste back in drawer, hang up towel. Jack must follow similar instructions for every single thing he does. The theory behind this technique is that as children grow accustomed to certain tasks, they no longer need such specific prompting; the ultimate goal is for the child to one day participate in normal social settings without being entirely dependent on others.
But ABA requires a lot of patience, a lot of time and, often, a lot of money. John Jones discovered these things the hard way. But it wasn't his own impatience that he struggled with; it was resistance from the Boulder Valley School District that cost him time, money and heartache.
John Jones knew something was wrong with his son from the very beginning. Jack wasn't following objects with his eyes like most babies, he wasn't rolling over in his crib at the right age, and he wasn't responding to his parents. When Jack was seven and a half months old, Jones and his wife took him to a doctor who diagnosed him with Williams Syndrome, a disorder that affects cognitive, behavioral and motor-skill development. The blood test that detects the birth defect was invented just six months before Jack's June 25, 1994, birth. Kids with Williams Syndrome typically have no fear of strangers, are very affectionate and outgoing, perform poorly at math and have a strong vocabulary. But not Jack. He shied away from strangers, wouldn't return his parents' embrace, and certainly didn't talk.
For the next couple of years, the Joneses researched every disorder they could in an effort to find out what else was wrong with their firstborn child (Jack now has a younger sister who does not have any disabilities). Jack's mother reviewed every Williams Syndrome Association newsletter that had been published in the past couple of years; the Spring 1994 issue contained an article about a little boy in Chicago who shared all of Jack's behavioral characteristics. Jack's mother called the other boy's family and learned that they were putting their son through a rigorous behavior-modification program that consumed up to forty hours a week. "We thought that was nuts," Jones says.
During the first three years of Jack's life, the Joneses tried every kind of therapy imaginable to bring their son out of the "box" in which he was trapped: speech, occupational, physical, holding, screaming and music. "The only thing we haven't done yet is dolphin therapy," Jones says. "By age three, when Jack still hadn't snapped out of it, we took him to a pediatrician."
The doctor concluded that in addition to Williams Syndrome, Jack had autism. After Jack failed to respond to any of the therapies the Joneses tried, they called the Chicago family back and asked what they were doing for their son, who also had both disorders. The boy's mother said she was using ABA and that her son was improving dramatically; she spent hours on the phone with Jack's mom explaining how it worked and recommending books on ABA. Shortly after Jack turned three, his parents hired an ABA tutor; she spent ten hours a week with Jack and used ABA to teach him to pay attention, to sit still, to make vowel and consonant sounds and to imitate simple physical actions such as raising and lowering his arms. The Joneses gradually increased the tutoring sessions until Jack was spending thirty hours a week on ABA. Four weeks into the new program, Jack was able to pay attention for fifteen minutes at a time, to focus on learning how to differentiate between objects and to match colors and shapes. "The difference in Jack was unbelievable," Jones says.
Around the same time, the Joneses were getting ready to enroll Jack in a public preschool in Boulder. When they contacted the school district for the first time, shortly before Jack's third birthday, the special-education coordinators assigned to him suggested that he begin his schooling at the Tiny Tim Developmental Preschool, a private school in nearby Longmont that serves children with autism and other disabilities. If a public school district cannot find an appropriate program for a special-needs child within the school system, it can place the student somewhere else at the district's cost, even if that somewhere else is a private school. Federal law requires school districts to provide transportation for students, but according to Jones, the Boulder Valley School District refused to bus Jack to and from Longmont. District officials say they routinely provide busing for special-needs kids, but they couldn't comment on Jack's case.
Jack's working parents -- John is a video producer and his wife is a financial consultant -- didn't have time to drive Jack back and forth from a program that's offered only ten hours a week. And there was another problem with the district's proposal to enroll Jack at Tiny Tim: Because Jack has a variety of medical problems, including a chronic bronchial condition, he can't be exposed to other children in a classroom setting. When he attended the summer preschool program, he caught other kids' colds. Instead of recovering after a few days, the viruses made their way into his lungs, and Jack became so ill that he refused to eat or drink; he had to be hospitalized and treated for dehydration.
For kids with special needs, public school districts are required, under the federal Individuals With Disabilities Education Act, to put together an Individualized Education Plan (IEP). The law also requires that IEPs be a joint effort between parents and the school district. By the time special-education coordinators met with the Joneses on December 4, 1997, Jack had been making rapid progress with ABA, and the Joneses wanted the technique incorporated into his education plan. But the school district had its own ideas about how to educate Jack.
"They proposed experimenting on Jack until they found a program that worked. But we already found one that worked, and we had the videotapes to prove it," Jones says. "The school district reluctantly agreed to home-schooling, but after three IEP meetings, it became clear that the district wasn't interested in pursuing ABA and that they weren't offering a program that would work. They never clarified what they planned to do. They proposed a mishmash of things: occupational, physical, speech, floor therapy -- all the things we tried for three years that didn't work. And when we asked for data showing the success of those programs, they couldn't show it to us."
The book Behavioral Intervention for Young Children With Autism, considered a must-have by ABA proponents, outlines the steps parents can take when they find themselves in a standoff with their school district. Mark Williamson, one of the contributing authors to the book and an attorney who settled his case with an East Coast school district over funding for his son's behavioral program, explains in the book that the Individuals With Disabilities Education Act requires school districts "to provide children with a free and 'appropriate' public education... There has been much dispute about what the term 'appropriate' means. Generally, the district is not required to 'maximize' your child's potential, but to provide your child with an educational program that confers a 'meaningful' level of educational benefit.
"To use an analogy, the school district is not required to provide your child with a Cadillac of an education, but only a Chevy. The good news is that if your school district cannot provide your child with a Chevy, you can go buy the Cadillac and receive reimbursement for the cost," Williamson writes. "Your job is to convince the decision makers and/or hearing officer that what the school district wants to provide doesn't even have wheels."
That's what the Joneses set out to do.
ABA works best when well-trained teachers work one-on-one with a child. But that kind of personalized attention can cost up to $30,000 a year, according to autism experts. The school district, John Jones says, never cited cost as a reason for denying Jack ABA -- and by law, cost is not allowed to factor into an IEP -- but he remains convinced that expense was the real sticking point.
When it became clear that the school district wasn't going to cooperate with him, Jones hired Yael Cohen, who has worked in the field of special education for 25 years. While studying for her master's degree in the field, Cohen received training in how to run IEP meetings for school districts; for the past twelve years, she has served as an advocate for children with special needs throughout metro Denver. When parents hire her to help them resolve disagreements with a school district, Cohen educates them about their rights and makes sure those rights are protected at IEP meetings. But she also acts as a de facto peacemaker. "I go in to meetings very often where everyone hates each other and there's no communication. I have to establish trust, get communication going and get both sides to focus on the child," she says.
Disagreements between parents and school districts over special education are not unique to Boulder, Cohen says. She knows of 27 disputes in the Jefferson County School District -- which is three times the size of the Boulder Valley School District -- that had to be resolved in due process hearings last year. In a due-process hearing, a hearing officer -- usually a lawyer agreed on by both sides -- listens to the evidence and decides in favor of one party. "But in most of the districts, you can find someone to talk to if you go up the ladder," Cohen says. "That's become increasingly harder in the last few years in Boulder."
Before a new director was named to oversee the special-education department of the Littleton Public School District last year, the schools there were not nearly as open to parents, according to Cohen. Now, she says, parents are having a much easier time resolving disagreements with special-education teachers. "All special-education advocates in the area feel that when there's a problem, they can go to [Littleton Public Schools Special Education Director] Lucinda Hundley, and she'll get things done. That doesn't mean parents never have problems, but Lucinda makes an absolute effort to help," Cohen says, adding that special-education administrators in the Jefferson County and Cherry Creek school districts are also open to working with families.
The Centers for Disease Control and Prevention estimate that between 1 in 1,000 and 1 in 500 children and young adults in America have some form of autism. That means that between 3,800 and 7,600 children and young adults in Colorado are autistic, according to Carol Meredith, executive director of The Arc of Arapahoe and Douglas Counties (formerly known as the Association for Retarded Citizens). That estimate, Meredith says, represents a 120-percent increase in the number of kids who have been identified as autistic over a recent four-year period. No one knows exactly why there are more autistic children in Colorado these days -- it could be due to the state's population boom, or it could be that diagnoses are better now -- but the increase is posing a challenge to educators statewide.
Approximately 27,000 students attend schools in the Boulder Valley School District, which spans eastward from the mountain town of Nederland to bustling Broomfield. More than 3,400 students in the district have special needs; 36 of those children are considered autistic.
Cohen says the Joneses' case was "one of the first I'd ever seen where the school-district people came in and defined themselves as the experts. But when we asked for their resumés and the credentials they had to prove their expertise, they refused to supply them. They refused to look at the research we brought them, and they refused to look at the data on Jack's progress. They admitted at the third IEP meeting that they hadn't looked at it. I had called other districts that were offering ABA and asked their special-education directors how they were providing ABA without breaking their budgets. I got lots of information and handed the district those names and numbers, and no one ever called them.
"When they proposed what they wanted to do, I asked them what their rationale was, and they wouldn't cite any research. Over and over again, they said, 'It's our professional opinion.' Well, I have a master's degree in special education, and I have a professional opinion, too. And when I'm asked why I support something, I can tell you."
In March 1998, after several months of bickering over educational approaches, the two sides sat down with a mediator. Still, they could not agree. When school officials arranged for their fourth and final IEP meeting, they told John Jones that they would be accompanied by legal counsel. Jones was prepared to be accompanied by his. At the April 1, 1998, meeting, Jones and the district agreed to disagree; the next step would be a due-process hearing in which both sides would collect affidavits from special-education experts to present to a hearing officer.
Meanwhile, Jack was continuing his education at home, at his parents' expense. But their home was becoming a madhouse, with between 20 and 35 people coming and going each week. Jones jokes that he is president and CEO of Jack, Inc., and he often wears a navy-blue baseball cap with the words "Team Jack" etched on the front. He ordered the same hat for all of the people who care for Jack: five tutors who take turns administering ABA, two program consultants who design Jack's curriculum, various therapists and several nurses and doctors, including a cardiologist and an endocrinologist, who treat Jack's many ailments. "We are a team," Jones says. "Jack requires a team."
At 2 a.m. one morning, the Joneses' burglar alarm sounded. When Jones went downstairs to investigate, he found a door ajar. There was no sign of forced entry. "I know I had locked all the doors; it's my nightly routine," he says. Many times before that night, his wife had noticed that small items, such as rings, were missing, and she had torn apart the house looking for them. Their home no longer felt private. "We decided to call it quits then," Jones says. "We were going crazy."
So they rented a small house across the street from theirs and made it the new headquarters for Jack, Inc. The classroom in the "cottage," as Jones calls it, is equipped with a camera that's wired to the living-room television. Jones can tune in any time and observe his son's lessons without distracting him. Most of his tutors were and continue to be University of Colorado students majoring in psychology, speech therapy, kinesiology or early childhood education.
Jack's parents and tutors make a point of taking him out into the community at least once a day. Sometimes they go to a nearby playground where Jack no longer is afraid to meet other children; sometimes they go to the library, where he no longer tears apart books or throws screaming fits; and sometimes they just go on errands.
At the time the cottage was set up, Jack was receiving forty hours of ABA per week, but a member of the school district's IEP team said that "forty hours a week of ABA was too much for a four-year-old -- that it's inhumane," Jones says. "It's not inhumane; it's the one thing that will allow Jack to be human instead of a caged animal."
ABA in some form has been around for more than fifty years and has evolved with research. But it has been criticized for being a form of conditioning; by repeatedly prompting tasks, opponents charge, kids are being turned into little robots who can't think for themselves. And early researchers not only reinforced proper behavior with rewards, they punished improper behavior.
In 1974, UCLA researcher Ivar Lovaas studied the effects of ABA on three groups of autistic children: One group received no ABA; one received ten hours of ABA per week and the other received forty hours per week. The latter group made the most progress in developing social and academic skills. But at the time, Lovaas used a system of punishments. For instance, some of the children in his study who were prone to chewing on their wrists were deterred by having Tabasco sauce rubbed on their skin. After much criticism, Lovaas repeated his study in 1987 without using the punishments. Again, the results favored intensive ABA.
There are hundreds of treatment methods for people with autism. "Until recently, however, none of those treatments has offered any solid, realistic basis for changing the view that autism is a permanent disability," according to the editors of Behavioral Intervention for Young Children With Autism. "Several studies have now shown that one treatment approach -- early, intensive instruction using the methods of Applied Behavior Analysis -- can result in dramatic improvements for children with autism: successful integration in regular schools for many, completely normal functioning for some. In fact, there is abundant scientific evidence that Applied Behavior Analysis methods can produce comprehensive and lasting improvements in many important skill areas for people with autism, regardless of their age. No other treatment for autism offers comparable evidence of effectiveness."
The Joneses presented this evidence, as well as binders full of other journal articles documenting ABA's success, testimony submitted by national experts on behalf of ABA, reports charting Jack's progress, hours of videotapes and even Jack himself -- but special-education administrators refused to consider the technique, Jones says. "The school district never proposed a program based on replicable research or one that even had some semblance of yielding a promising outcome." Jones also claims the school district's attorneys tried to discredit him. "They accused me of doctoring the videos to leave out parts where he regressed. Let's be honest: Of course I edited them. If they wanted to sit through sixteen hours of tape, they were welcome to, and they would have seen no instances of regression."
Stu Stuller, an attorney representing the BVSD, says the Family Education Rights and Privacy Act prevents him and school district officials from commenting on any of these claims or any other aspect of the case.
The special-education director, assistant director and coordinator who worked on Jones's case all have resigned in the last year and have been replaced by new administrators. But Scott Schwartz, the special-education consultant who helped evaluate programs for Jack, is still with the district. "There are two sides to every story," he stresses. "Clearly, someone's coming at you with an agenda. There are many different methodologies for children with autism, and they generally have the same success rate. There is nothing inherently wrong with discrete trial training if it's done in a developmentally appropriate manner and if skills can generalize."
By that, Schwartz means that Jones's brand of ABA can work well when a child is seated at a desk working one-on-one with a tutor, but that the skills a child learns in such a setting don't always translate into the real world. For instance, he says, if a child is taught how to make change during a tutoring session but can't call on those skills once he's at a cash register, the lesson doesn't mean much. "ABA is very seductive," Schwartz warns, "but it's clearly challenged in academia."
Nationwide, says Yael Cohen, a lot of school districts now offer ABA, but they usually do so only after a parent has sued. Locally, ABA is fairly new, but schools in Durango and Colorado Springs recently approved ABA services. The Jefferson County School District, however, is doing more than any metro-area district in providing ABA to autistic students. Kay Cessna, executive director of interventions for Jeffco schools, says there is a network of parents committed to ABA who are finding each other on the Internet. The increasing demand for ABA, coupled with the growing number of autistic kids in Colorado, prompted the district to come up with a teaching model for autistic kids two years ago. The district chose four teachers to receive intensive training on several of the teaching techniques and to talk to several local experts before coming up with their own teaching method.
"We now have a program that combines the best elements of several programs but has a heavy component of ABA," Cessna says. "There is a growing faction of parents across the country and the state who want ABA, and there have been a lot of lawsuits against school districts for this. So we wanted to get in front of the curve."
The Cherry Creek School District, which is overwhelmed with parents seeking its services, uses TEACCH, a very structured method of teaching that relies on visual aids. "With ABA, you're sitting across from a kid at a table. But what is the kid going to do when he gets up from the table? TEACCH teaches kids how to transition from place to place," says Dixie Periman, a learning coordinator in Cherry Creek's special-education department. Cards with words or pictures are used to show the child what will happen next -- like the picture Jones shows Jack when it's time to brush his teeth -- and the child adheres to a rigid schedule so he will remain focused and not get confused.
"With TEACCH, kids apply what they learn at their desk to other environments. They're learning without being led around by the hand so that they can become independent," Periman says. But just because Cherry Creek uses the TEACCH method as its foundation doesn't mean it refuses to allow parents to also use ABA or other programs that have worked for their child. "If someone moves into our district and is using ABA, we say, 'Great, let's add to it some methods that we've found to be effective,'" says Periman, who knows of Jack's case from working with John Jones on an autism task force. "We certainly don't say the word 'no' a lot in our district. Not that we haven't had due-process cases, but most disputes get resolved in mediation. I think Boulder got into trouble by saying no."
The impartial hearing officer assigned to Jones's case dismissed it without hearing the evidence, basing her decision on a former case in which an administrative law judge found that the Individuals With Disabilities Education Act doesn't require school districts to provide special education services to kids who are home-schooled. Jones appealed the dismissal and won. But before the case could be heard again, the school district settled.
The threat of going to court was too much for the school district to risk, according to Jones, because if he won, his case would have set a precedent. And a precedent-setting case could open a floodgate of other parents requesting costly programs. BVSD spokeswoman Barbara Taylor agrees that Jones's case would have set a precedent, but says the district settled because if it had lost, "it would have forced us to accept this one clinical solution [ABA]."
Jones admits he was asking a lot of the district: He wanted it to fund an ABA program for his son for at least three years, at an annual cost of $30,000. "It's not that I didn't understand that it would cost a lot, but they were so concerned about not having to provide for other kids that they never considered Jack's needs. I gave them every possible out, and they didn't take it. I even offered to run this program for them and allow them to take credit for its success," he says. "I know what I was asking for would have been a drain on taxpayers. But most people with autism end up in institutions or on the streets. That's a much bigger cost to society."
That's why Jones is appalled at how much money the school district spent to fight him. The district's lawyers say they can't find the dollar amount that was spent on Jones's case; they say only that the district's legal fees for special education for the 1998-99 school year totaled $37,000. Apparently, however, the district can also use money from its insurance reserve fund. When Cohen requested information on the money the district spent on recent special-education legal battles -- there have been five in the last three years -- she received an outline of expenditures from the insurance reserve fund. The documents show that the district spent $253,000 from that account in the 1998-99 school year.
In fact, Cohen believes that the district spent five times more than the $30,000 Jones did on the case -- not including the settlement amount, which is confidential -- and she wants to know where the money went and why no one seems to be able to account for it.
The BVSD has had memory problems in the past when it comes to accounting. In June the school district's financial officers discovered that the special-education department had overspent its budget in the last two years by $678,000. Surplus money from the school district that was supposed to pay for additional special-education teachers this year was used instead to balance the department's budget. Special education was the district's only department allowed to conduct its own accounting, but since the over-expenditure was discovered, the special-education budget has fallen back under the auspices of the district's financial-services office.
Even though the district settled with Jones, he had to fork over a lot of money up front in legal and educational fees. And that's something a lot of parents can't do. "I had to put my job on hold to fight the school district. My wife and I had to triple-mortgage our house," Jones says. "Parents who can't do that are shit out of luck."
hese days, plenty of parents in Boulder Valley are feeling the same way.
At a recent informational meeting about special education in the BVSD, administrators bemoaned the lack of funding for public schools. The BVSD has a shortage of para-educators, or teaching assistants, who provide a lot of support for special-education students; even after a recent wage increase, the BVSD can still afford to pay its assistants only $8.49 an hour. The special-education department has a $20 million budget, most of which goes toward salaries for its 200 special-education teachers and approximately 150 special-education para-professionals. BVSD special-education director Jean Riordan says Boulder's special-education budget is comparable to other districts' and that all districts in the state are "in very tough times in education, and in special education in particular."
With the school district going through such dire financial times, parents are wondering why administrators are making it difficult for them to send additional specialists to school with their kids at their own expense. On November 9, Riordan sent a memo to all special-education teachers informing them that because of "potential legal and financial liability" for the district, parents who wish to send additional educators to school with their children will now be required to sign a waiver releasing the district of all legal responsibility.
In the memo, Riordan explains that "parents may request permission to provide, at their own expense, additional services above and beyond what the IEP Team has determined necessary to provide the student with a free and appropriate public education," but that by accommodating such requests, "there is an implication that the district acknowledges that the services it is providing through its staff are not adequate to allow the child to benefit."
The waiver reads, in part: "I/We agree to release and forever discharge the School District, its officers, agents, employees and representatives from any and all manner of claims, demands, damages, attorneys' fees, costs, expenses, actions, causes of actions, or suits..." In addition, the waiver asks parents to agree to the following: "I/We acknowledge that the School District currently is providing my/our child with a free appropriate public education under the applicable provisions of the Individuals With Disabilities Education Act."
"What I was trying to do with the waiver was to create a process so we know how many people are coming in the schools," Riordan says. "It wasn't an attempt to be rigid, but to be careful. It's for the safety of our students."
One parent of a nine-year-old girl with a form of autism known as Asperger's Syndrome says many parents feel like their hands are being tied by the district: They aren't happy with the education the district is providing, yet they can't seem to do anything about it. Academically, her daughter performs at grade level, but socially, she is behind other kids and often tries to flee the classroom or playground in order to get away from them. When the girl was in kindergarten, the school did not have enough para-educators, so the principal had to monitor her during recess. The girl's parents called the special-education office to request an assistant, but for several weeks, their calls went unanswered.
"My husband went to the special-education office and sat there until he could find someone to talk to," she says. "It took six weeks to get a para-educator."
After a slew of problems at the school -- her parents had to hire a private psychologist to diagnose their daughter because the school psychologist gave up on her after she refused to open up to him; later, she was put in a classroom with violent emotionally disturbed kids who frightened her -- they enrolled their daughter in another school, where she was placed in a class for kids with severely limited intellectual capacity.
At a meeting at the new school before the start of the year, teachers asked parents of special-needs students to keep their kids home on the first day of school because they weren't ready for them; they hadn't yet hired all of their para-professionals, nor did they have their scheduling arranged. "We reluctantly agreed in hopes that they'd be ready the next day," says the mother, "but she was kept in that room completely for two weeks while they arranged their schedule. During that time, she only did one assignment, which was kindergarten-level work."
The class turned out to be more like daycare than school. The kids just colored and watched television and movies all day; the little girl came home reciting lines from Barney and The Little Mermaid, according to the mother.
"She spent all of first grade and half of second grade in that class, and we had to fight hard to get her out," her mother says, adding that some of the girl's teachers and therapists told her that she was too difficult to work with because she wouldn't talk to them. So her parents hired their own private teacher to attend school with her. After a year of working with the private tutor, the little girl scored above grade level in reading. Now she's in a regular third-grade classroom for most of the day.
The girl's mom is irate that the district is requiring parents to sign the waiver. "I will not sign it. I'm still having my consultant go in. It's against everything special-education laws are trying to prevent," she says. "It asks us to sign a statement saying our kids are getting a free and appropriate public education. Why would parents pay $60 to $100 an hour for a private educator if their kids are getting a free and appropriate public education?"
That mother is not alone. Boulder Valley parents have banded together in the last couple of months to form Parent Action Group for Special Education, or PAGE. The group is keeping the number of members and their identities a secret because they say they fear retribution from the school district. Their mission is to find out how many other parents have had similar difficulties with the district's special-education department.
A PAGE member who wanted to be identified only as Jennifer says her greatest frustration with the BVSD is its practice of separating special-needs students from other students. Jennifer has been struggling to keep her autistic son in a normal classroom so that he can learn from kids who do not share his behavior problems. "He is very bright, but because of his behavior, they feel he needs to be in a different setting. How are they supposed to teach social skills to kids when they are in a class with other kids who have problems with social skills? They're just learning bad behavior from one another," she says.
When Jennifer attended a parent-teacher conference earlier this year, the teachers asked her for suggestions on dealing with his behavior problems. Her son has a habit of getting into food that is not supposed to be eaten until snack time; when the teachers tell him he can't eat his snack until later, he throws a tantrum. So Jennifer asked the teachers to keep the food in a cabinet until snack time. "They said 'No, we can't do that,'" she recalls. When she suggested they keep supplies for art projects involving marshmallows and other candy on a shelf, they told her they couldn't do that, either. "They turned down all of my suggestions and said I should consider other programs for him." According to her, that was their way of getting him out of a regular classroom and into a special-education class. "Then they gave me a sheet with the district's guidelines for suspension and expulsion. They told me he can't succeed in a regular classroom, yet they refused to make any accommodations. And when I say I've got people who can come in and show him appropriate behaviors and give teachers suggestions on keeping him engaged, I get turned down."
Riordan says cases like Jennifer's are not the norm. "Boulder is a district that does a tremendous amount of inclusion. Most special-needs students are served in a general-education classroom. A very small percentage of students are pulled from regular-education classes," Riordan says. "Our society -- and our schools -- vary in how accommodating we want to be. It's very frustrating for parents when they find an attitude blocking their kid's education. Attitudes are the hardest things to change."
But Riordan says she's proud of what she's done for the special-education department since she took over as director last December. She has secured several state and federal grants for special education and formed the Parent Professional Partnership as a way to reach out to parents; the PPP sponsored the recent informational meeting between parents and special-education administrators. "I'm doing everything I can on every front I can. I think there's a small group of parents that's dissatisfied and don't seem to like those efforts," Riordan says, adding that those who complain rarely offer solutions to the problems they claim they're facing. "This door is open. We've tried hard to take input, but it's hard to have a conversation when both sides don't sit down and converse."
PAGE members are hoping that parents of special-needs students throughout the state will see some improvements now that the federal government is looking into Colorado's special-education departments. Every three years, the U.S. Department of Education audits special-education programs nationwide to make sure they are in compliance with federal special-education laws. For three weeks this month, federal education officials held focus groups across Colorado in which parents and educators provided input on the state's special-education programs. Several Boulder parents, including Jones, took part in the focus group for Front Range schools. Education-department officials will return in January to conduct a more in-depth look at individual school districts; sometime after that, they'll suggest how the Colorado Department of Education can improve things.
In a letter PAGE sent to special-education parents, its organizers wrote: "Over the past couple of years it has become clear that there is an increasing divergence of opinion regarding the quality, effectiveness and implementation of programs designed to meet the educational needs of our children. In large part, Boulder Valley [School District] seems satisfied while parents do not. To get to the bottom of this 'divergence of opinion,' the group PAGE was formed, to elucidate and clarify exactly what the nature of such a divergence may be."
At the recent meeting between parents and the school district, John Jones asked the special-education administrators to grade themselves on how they work with parents. They all gave themselves As and Bs.
John Jones tried to make a difference at the state level for children with autism by joining the Colorado Department of Education Autism Task Force when it was formed in October 1998. But he says the thirty-member group -- made up of parents, special-education advocates, teachers and autism experts -- has accomplished nothing since it began. The state education department formed the group in response to requests from teachers seeking guidance on how to work with the state's growing number of autistic students. By next summer, the task force plans to publish a manual of guidelines describing the different methods that can be used to educate children with autism. But Jones says the group's progress has been marred by disagreements over educational approaches.
Jones pressed for the CDE-appointed task force members to incorporate ABA into the educational guidelines, but he says they ignored his requests and failed to supply him with evidence that the educational programs they were considering were working. He accuses the autism experts on the task force of trying to advance their own programs.
Because he felt the task force was going nowhere, Jones stepped down. In his resignation letter, dated October 7, 1999, he wrote, "My call for hard evidence regarding reasonable educational benefit when considering programs and trainers has more than once been silenced by individual Task Force members who are employed by the Colorado Department of Education."
In the meantime, education experts and parents in New York were publishing a three-book series of guidelines for educating children with autism -- with ABA as the recommended method. CDE task force chair Robin Brewer, who is also the principal consultant in the CDE's special-education unit, says that because Colorado is a local-control state, the state education department is legally prohibited from mandating any one method. All it can do is recommend guidelines; individual school districts are free to choose which programs to offer.
The task force's primary goal is to produce the guidelines, which Brewer says will be available in schools next fall, but the task force members are also holding training sessions for teachers, and they hope to match specialists with schools to assist teachers in delivering new educational strategies. Last January the task force brought together national experts on various educational methods at a conference attended by 500 parents and educators. Brewer hopes the next conference, which will be held in February, will attract 750 people. "I would hope that changes have been made in programming for kids based on that conference," says Brewer, who admits she has not had time to follow up to see what, if any, improvements have been made since then.
Brewer says she's baffled by Jones's departure from the CDE task force. "The last time I spoke to him, he was going to bring the president of the ABA Association to be the keynote speaker at February's conference; the next communication I got was his resignation letter," she says. "We think ABA is a viable option. We considered that as much as any other method. There are some things I don't like about ABA, but there are also some aspects of TEACCH, in the Cherry Creek School District, that I don't like. We don't want only one technique; that's not what our job is. We want teachers to develop an eclectic methodology. We don't think one size fits all."
But Jones felt as though other members of the task force, including Phil Strain, a professor of educational psychology at the University of Colorado at Denver, were working against him. Strain served as a consultant for the Boulder Valley School District during Jones's legal battle and was paid by the district to recommend programs for Jack -- and ABA wasn't one of them.
Strain is the founder of LEAP (Learning Experiences -- An Alternative Program for Preschoolers and Parents), an education method that employs an ABA technique called incidental teaching. The strategy behind LEAP is to teach children when they are already engaged in something that interests them. "Once they are involved in an activity, that becomes an occasion for teaching. For instance, if a kid begins playing with paint on an easel, that becomes the context for teaching colors and shapes," says Strain, who has established LEAP preschools worldwide since 1981; the Douglas County LEAP preschool is the only one in Colorado.
Strain says the primary difference between his form of ABA and the one Jones uses is "who has the control over the instructional agenda. In a lot of teaching programs, adults decide what to teach and when; in our program, the notion is that we want to capitalize on kids' interests -- to look for those occasions when kids have initiated contact with people or objects and use those as opportunities to teach important skills."
Jones felt Strain's role as consultant for Boulder Valley conflicted with his role on the task force.
Because experts on the task force -- like Strain -- already favored certain teaching methods, Jones says his recommendations for ABA were never seriously considered. Instead, he says, he was regarded by fellow members as an extremist. "I was seen as a parent with an ax to grind," Jones says. "I didn't have an ax to grind; I had an investment in my son's education."
His investment seems to have paid off.
The television monitor in Jack's cottage is on, but the volume is turned down. John Jones is talking about how far Jack, now five, has come in the more than two years since he started ABA. Jack is now getting up to 45 hours of ABA per week and knows 300 nouns, three dozen verbs and all of the prepositions, and he can build short sentences. Someday, when his health improves and he's emotionally ready, Jones plans to enroll him in a regular public-school classroom.
The little boy's laughter can be heard from the next room while his muted, smiling mouth lights up the screen.
It's time for a break now. Jack comes in from the hallway and notices that the television is fixed on his empty classroom. He starts flipping channels, searching in vain for Teletubbies. His tutor has Jack's shoes and a cue card with a picture of a swing set. Jack takes a shoe from his tutor, rips off the Velcro strap and slides his foot in, all by himself. He knows he's going to go outside and play.
When he returns, he runs to greet his dad. Jones crouches down and asks him his name. "Jack," he answers. Jones asks him where he lives, and Jack immediately spouts out his address and says that it's in Boulder. Jones then asks what his phone number is. Jack is swift in his delivery. "He used to be completely unresponsive," Jones says. "Talking to him was like talking to a brick wall. Now he can express his needs and wants.
"This kid has been set free."
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