Ashley Kisonak normally enjoys her Monday afternoon piano lessons. But her parents, Nancy and Rick Kisonak of South Burlington, can’t really describe much that happens in the life of their 17-year-old autistic daughter as “normal.” Every day is a crapshoot. Some go smoothly. Others are like today.
Ashley’s music lesson has just begun, but already she is restless and unwilling to sit at the piano. Her cheeks are flushed and streaked with tears as she struggles to express her emotions. She paces restlessly and repeats fragments of sentences spoken by others, in a high-pitched voice that trails off at the end, as though she were falling off a cliff.
“For some reason,” Nancy explains, “she’s really agitated today.”
“Really agitated today,” mimics Ashley.
“Usually, this is her happy hour,” Nancy adds.
“Happy hour,” Ashley answers, her arms outstretched toward her mother. For a moment, Ashley seems ready to strike Nancy, then checks herself. Mother and daughter embrace, forehead to forehead, as Nancy strokes her hair. Rick watches silently from one corner. His composure suggests he’s seen this behavior before.
“I’m sorry,” Nancy says calmly.
“I’m sorry,” Ashley repeats. “I’m crying. Why am I crying?”
“You’re upset,” her mother explains. “Maybe we can feel better.”
Echolalia, or “echo talk,” is a common symptom of autism, but Ashley’s is a relatively new development in the last few months. According to Mary Wilson, a renowned speech-language pathologist and professor emerita at the University of Vermont, Ashley’s language skills “plateaued” in 2007 and have “regressed a great deal” since.
Wilson, who’s worked with Ashley since 1997, can’t explain the backsliding, though it loosely coincided with a period when the girl began exhibiting what one psychiatrist identified as “catatonic freezing behaviors”: Essentially, Ashley became robotic and wouldn’t move, speak, blink or even swallow her saliva without being prompted.
A child-and-adolescent psychiatrist at the Vermont Department of Health traced Ashley’s behavioral deterioration to her instruction at South Burlington High School. “We can state with certainty that the current token system that has been developed and implemented for Ashley as part of her behavior plan has been ineffective and has led to a loss of her volitional responses,” Jeanne Greenblatt wrote in a 2008 psych evaluation. “I strongly feel at this time her behavioral and academic programming should be redesigned…”
Greenblatt’s words confirmed the Kisonaks’ suspicions about South Burlington and its special-ed program. They are one of a handful of families in the district who have complained bitterly about the quality of instruction their children receive there.
In fact, when school board chair Richard Cassidy is asked, “What is the biggest challenge the school board faces when it comes to providing special-ed services?” he doesn’t point to the growing number of students being diagnosed with autism-spectrum disorder, or the unfunded mandates from the federal government to “mainstream” kids in public schools, or the rising cost of providing intensive, wraparound services to high-needs kids.
“The leading challenge for us is what I would call ‘chronic parental unhappiness’ with the system,” Cassidy says. “We have a small number of parents who are very unhappy with the services that their kids receive and are very vocal about their unhappiness … And some of the very same parents who were chronically unhappy with us today were chronically unhappy with us 10 years ago.” Among them, he acknowledges, are the Kisonaks.
Wilson and Greenblatt aren’t the only outside experts the Kisonaks have consulted to address the developmental needs of their daughter. In addition to the district-funded team of clinical psychologists, behavioral consultants and special educators who work with Ashley, the Kisonaks have also shelled out tens of thousands of dollars of their own money on specialists to ensure their daughter reaches her full potential.
The Kisonaks and the district have also spent sizable sums on lawyers. To say that the couple has challenged the special-ed services their daughter receives in South Burlington is an understatement. So, too, is describing as dysfunctional the relationship between them and the district — in particular, its director of educational support systems, Joanne Godek. The situation became so toxic last fall that, for a time, the Kisonaks were banned from entering their daughter’s school altogether, under penalty of arrest for criminal trespass.
Little wonder that Greenblatt also writes, “I cannot emphasize strongly enough my concern about the current and ongoing level of conflict that is, and has been, occurring between Ashley’s parents and her school district.” Greenblatt recommended that Ashley be transferred to another district or a private setting for her own good.
Special-needs children can place enormous physical, psychological and financial stress on their families. That’s been especially true for the Kisonaks, whose personal and professional lives have been torn asunder by their years of full-time advocacy for Ashley. To an outside observer, it’s impossible to know whether the couple’s mental anguish is a cause of their woes or a product of them. The truth probably lies somewhere in between.
But South Burlington school administrators insist it isn’t accurate, or fair, to characterize the Kisonaks’ relationship with the district as typical of what other parents of special-needs children experience there. As SBSD superintendent John Everitt writes in an email, “I cannot remember a time when, as a Vermont special education administrator, principal or superintendent, every family was satisfied. Far and away, most families of children with disabilities are very satisfied with South Burlington special education.”
A more typical parent, they suggest, is Miriam Vega, whose 11-year-old son, Thomas, was diagnosed with autism when he was 18 months old. The Vegas moved to South Burlington from New York City because of what they had heard about the district’s special-ed program.
“Oh, my God. They’ve been amazing!” Vega says. “I can’t tell you how beyond satisfied I am. They bend over backward for us … If you have a child with special needs, the best place to go is South Burlington.”
In the world of public-education financing, special education is the elephant in the living room. In Vermont, a “neurotypical” child costs districts about $15,000 a year to educate. It’s not uncommon for the intensive needs of a student such as Ashley to cost $200,000 or more. Yet, by law, discussions of funding or cost may not enter the discussion, at least with parents.
With more than 230 school districts in Vermont, why shine a spotlight on South Burlington? By most objective measurements published on the Vermont Department of Education’s website, the district’s special-ed students neither overachieve nor underperform compared to statewide averages. Nor does the state designate South Burlington as an excessively high-spending or low-spending district when it comes to special ed.
Yet, when things have gone wrong in South Burlington’s special-ed program, they have gone very wrong. And the shortcomings cannot be blamed on lack of resources. In many respects, no district in the state is better positioned to provide special-ed services. South Burlington is in the middle of the most populous county in the state, in close proximity to numerous mental health, education and medical professionals and institutions. Its educators are among the highest paid in Vermont.
Demographically, South Burlington is predominantly white, affluent and well educated. Historically, its voters usually pass the school budget. Parents are generally supportive of, and participate in, the education and extracurricular activities of their children. This may also explain why some parents are particularly strident in their advocacy — they have the time, knowledge and resources to be.
That said, schools aren’t always receptive to parents challenging their special-ed recommendations. In fact, one unnamed consultant in Chittenden County suggests that the more affluent districts with the highest skill sets and resources are often the most resistant, under the guise that “they know best.”
Christine Kilpatrick is the family-support director at the Vermont Family Network, a statewide nonprofit that advocates for parents of children with special health and education needs. Kilpatrick won’t comment on a specific family or school, but says that even one bad experience in a district may be just the tip of the iceberg.
“If there’s one family that’s struggling, we don’t average that out,” says Kilpatrick, who, like everyone else working at the Vermont Family Network, is the parent of a special-needs child. “If there’s one school district that’s done a stellar job with 200 kids but there’s one child who is consistently blocked access to what they need, that’s a problem.”
To understand the Kisonaks’ fiery passion, it’s critical to know what lit the match. When Ashley was 5 years old and attending Orchard Elementary School, the couple learned of an instructional videotape that had been made of their daughter, which was to be used by behavioral consultants on her IEP team.
The IEP, or Individualized Education Program, is the basic tool of special education. It’s a legally binding, constantly evolving document that spells out in detail each student’s education goals and how the school plans to achieve them. Under the Individuals with Disabilities Education Act, all special-needs children are guaranteed a “free, appropriate public education” to prepare them for further education, employment and independent living as adults. When parents sue over their child’s special ed, it typically involves perceived shortcomings in the IEP.
When Nancy Kisonak asked to see the tape, she witnessed what she calls “horrific abuse” of her daughter during one of her tantrums. According to her account, the tape revealed staff dragging Ashley around the room, holding her down on the floor, sitting on her, slamming her into a metal chair and laughing as she soiled herself.
The Kisonaks filed a lawsuit against the district and several of its employees — including Joanne Godek, who at the time was Ashley’s case manager. The lawsuit accused the school staff of child abuse and the unlawful use of potentially lethal physical restraints.
The Kisonaks’ case took three years to settle out of court. The terms of the settlement are confidential, as is the videotape purportedly showing Ashley’s ordeal. However, a sworn deposition, by a clinical psychologist who watched the tape, William Halikias of Guilford, supports the Kisonaks’ description of events.
In the last 12 years, no further allegations of cruelty toward or improper restraint of Ashley have surfaced. Nevertheless, the Kisonaks have filed other grievances, both at the state and federal levels, against the school district. Many were based on what they charged were deficiencies in her IEP, as well as their belief that the district, and Godek, have retaliated against them for the lawsuit many years ago.
Notably, in 2005, the Kisonaks filed a complaint with the U.S. Department of Education’s Office for Civil Rights, claiming that their daughter was being denied a “fair, appropriate public education,” as guaranteed by federal law.
Federal OCR investigations are uncommon, and rulings in favor of parents even rarer. According to a U.S. DOE spokesperson, of the 114 complaints brought against Vermont school districts since 2001, only 10 have led to a determination that the district was out of compliance with federal law. Five of those 114 complaints that alleged disability discrimination were filed against the South Burlington School District. In only two of those — including the Kisonaks’ — did the parents prevail. In Ashley’s case, the South Burlington district was not in compliance with federal law.
The OCR identified five areas in which the district didn’t follow Ashley’s IEP. However, the 14-page ruling also found “insufficient evidence” to support the Kisonaks’ claim of retaliation.
For their part, SBSD’s administration, school board and staff have struggled for years to maintain a working relationship with the Kisonaks, as evidenced by emails and other communiqués between the district and the family. The situation became so adversarial last year that, in September, superintendent John Everitt issued a four-page memo to his staff spelling out specific guidelines for communicating with the couple.
Among other things, the Kisonaks were limited to three visits to Ashley’s school within a 30-school-day period and were required to give at least three school days’ advance notice of their intent to observe their daughter in school. Those visits were also limited to two hours and required constant staff supervision. As Everitt wrote in his memo:
“Given staff reports that they do not feel safe during observations and interactions with the Kisonaks, that staff feel that their own words, actions and motives are frequently misstated by the Kisonaks, and that staff feel that they are wrongly accused of wrongdoing by the parents, the school will assign a staff member to accompany the [Kisonaks] during all observations.”
In November, after someone at South Burlington High School accused the Kisonaks of violating their visitation policy, a South Burlington police officer issued the couple a “notice of trespass warning” that barred them from school grounds, under penalty of arrest. The Kisonaks vociferously objected, and the no-trespass order was later rescinded.
Today, Everitt won’t comment on the Kisonaks or other “confidential matters” related to their daughter. Nor will Godek, who now oversees all of SBSD’s special-ed services for five public schools and more than 200 students, including Ashley Kisonak.
For his part, Everitt describes Godek as “an excellent school administrator” and a “valuable leader in South Burlington” who has made “substantial improvements in the delivery of support services for children with disabilities” in the district.
School board chair Cassidy echoes that endorsement of Godek, saying the board has been “very pleased” with her performance, though he does acknowledge past points of friction.
“Before Joanne was promoted to her current position, I think there was a feeling that she was technically very strong but that she did not get along well with some of the parents,” Cassidy says. “But, she did some work to try and learn to deal more effectively with parents, and we feel that work has paid off. Not in all cases, obviously.”
Is the Kisonaks’ experience in South Burlington an aberration? Not according to Linda Luxenberg, whose severely autistic son, Travis, received special-ed services through SBSD earlier this decade.
In 2007, Luxenberg filed a federal complaint with the OCR, alleging her son had been denied a fair, appropriate public education. It was discovered that over the course of two years, 2003 and 2004, a speech-language pathologist billed SBSD more than $7000 for services Travis never got. The OCR awarded the family 250 hours of compensatory services. That was a front-page news story at the time.
Although Luxenberg’s experience appeared to be an isolated case of fraud, a report from the Vermont attorney general’s office criticized South Burlington’s “weak administration and poor oversight,” which “not only failed the individual student, but also negatively impacted the ability of the state to take further [legal] action.”
Luxenberg holds a master’s degree in special education and was an expert in autism even before her son was born — she recently published a book of essays by Vermonters called Speaking Out: Vermont Adults with Autism Spectrum Disorders, about shortcomings in the state’s approach to the disability. She says when parents become vocal advocates for their kids, they often feel as if they are under siege. It’s as though “you’re walking around with a bull’s eye on you if you dare to stand up for yourself,” she says.
For her part, Luxenberg has nothing positive to say about Godek, describing her as “antiparent.” She says she would “cheer on anyone who can assist in removing her influence.”
It’s not just parents of children with autism who express dissatisfaction. Nancy Osborne’s son, Chris, suffers from athetoid cerebral palsy, a debilitating condition that confines him to a wheelchair and makes it impossible for him to speak or write without a computerized device similar to the one used by physicist Stephen Hawking.
Chris, now 25, graduated from South Burlington High School three years ago. Although he has severe physical challenges and needs total assistance to be fed, dressed and transferred, he has a high IQ and, according to his mother, a wide range of interests.
Chris had a wonderful experience in elementary school, Osborne recalls, but she calls middle school a “disaster.” While Chris was still in the fifth grade, she remembers attending monthly meetings from January until June to discuss Chris’ upcoming transition to middle school. At the time, Osborne assumed all of her son’s specialized needs — laptop, wheelchair ramps, customized toilet — would be in place come September.
“I stopped by on my way to work his first day of middle school, and there was nothing set up. Nothing at all,” Osborne recalls. Despite frequent reassurances by the principal, “He didn’t have a toilet seat for four months.” Osborne says her son trained himself not to drink during school hours to avoid accidents.
High school was even worse, she says. “We were supposed to get all this help,” she recalls, “and little by little, it all went away.” At the time, Chris had a nurse who helped get him ready for school each morning. As Chris traveled the interstate to school, he would often ask his nurse to play a song that he says described his attitude about high school: AC/DC’s “Highway to Hell.”
Osborne also had problems with Chris’ IEP, and eventually discovered that tens of thousands of dollars were being billed to the district by an outside agency, “which will remain nameless,” in her son’s name for services he never received. She filed an administrative complaint against the district with the Vermont DOE. But even after the state ruled in her favor, Osborne claims that little changed.
“The guy down at the Department of Education in Montpelier who investigated said to me, ‘People think we’re like a shining knight on a white horse coming in to rescue them and everything is going to be better,’ and it’s not,” she says.
Osborne acknowledges the difficulties of providing for her son’s intensive needs, including a three-month learning curve by staff just to figure out how to deal with Chris’ many physical challenges. “Some teachers were just great,” she emphasizes. “Then there were others who didn’t even know he knew how to write.”
Today, Osborne still cannot understand why her dealings with the district were always so adversarial.
“I had high hopes for [Chris] being able to do more stuff as he got older,” she says, choking back tears. “But by the time we were done there, they didn’t want to talk to me or deal with me. It had become very antagonistic.
“The school system failed my son terribly.”
Without question, special education is often adversarial. As school board chair Cassidy, who is an attorney, explains, it was designed that way.
“That has a good side and a bad side,” he says. It’s a good thing because, when parents and educators are considering something as important as a child’s future, parents don’t have to blindly accept what they’re told by the school and “just stuff it,” he says.
“But, I also think it has a downside,” Cassidy continues, “because the message is communicated to parents that they’ll get more if they use the adversarial system. So, that encourages some people to be adversarial.”
After parents have exhausted their options at the local level, they can file for a “due process hearing,” which is like a minitrial. However, it can be very costly and time consuming, according to Hinesburg attorney Eileen Blackwood, one of only a few private lawyers in the state who handles such cases. Many parents simply cannot afford to go this route — nor can many lawyers afford to take on these cases, because they rarely result in cash settlements, according to Blackwood.
She explains, “Often what happens is, when they’re partly through it, if the district thinks it’s losing, it will offer a settlement. Meanwhile, the parents have expended tens of thousands of dollars that they can’t recover. They can’t get their attorney fees unless they go all the way through, and they can’t continue going through if the school district gives up.”
The Kisonaks say they’ve opted for mediation rather than rolling the dice on a due process hearing.
Blackwood says she personally sees more cases coming from South Burlington than elsewhere. But that may be a function of where she works, and word of mouth. “Once you handle one case,” she adds, “families spread your name around.”
Understandably, virtually all the special-ed consultants who were contacted for this story who work in South Burlington were unwilling to speak on the record for fear of compromising those relationships. But one local consultant summed up what was reported by two others: “South Burlington is known as one of the most difficult places to advocate in Chittenden County.”
In early March, the Vermont DOE completed its investigation of yet another administrative complaint the Kisonaks filed against the district. This one alleged the district was not adequately preparing Ashley for her transition to adulthood. A state investigator agreed, concluding that the district was “not in compliance with the relevant state and federal regulations and that corrective actions are needed.”
“I can absolutely promise you that we do not expect a cure for autism, and we do not expect anything unrealistic,” Nancy Kisonak emphasizes. “We’re not trying to dictate instruction. I really don’t care whether they use this reading method or that reading method, as long as it’s evidence based and it’s humane.”
Meanwhile, as Ashley wraps up her Monday afternoon music lesson, her teacher plays a CD that not only soothes the girl but gets her singing along and, eventually, smiling. The song is “Day by Day,” from the play Godspell.
For the Kisonaks — and other families with special-needs kids — it could be the theme song of their life.
Disclosure: Ashley Kisonak’s father, Rick, is a freelance film critic for Seven Days.