"I have good days and bad days," says 14-year-old Crystal Richardson, in a soft high-pitched voice, one sounding at least two years younger than her tall frame suggests. She stands in a cramped-but-cozy living room toying with a trio of pet parakeets that repeatedly bounce from her shoulders to an outstretched index finger. The top half of a large keloid scar protrudes from her V-necked blouse.
Today appears to be a good day for the high-school freshman. She spent a full day at nearby Fike High in Wilson. Once home, the aspiring fashion designer sketched some clothing concepts on a large pad, played with a visiting cousin and sang along to a number of pre-programmed tunes from the keyboard her mother recently bought her.
Unfortunately, last Friday was a different story. That day, Crystal--who suffers from epilepsy, chronic fatigue syndrome and a congenital heart defect that required open heart surgery in 1998--missed school, spending the majority of the day in bed.
"Sometimes I feel real tired and weak," she says, her large eyes consumed with the birds fluttering about her. Last year, her ongoing symptoms caused her to either miss or be tardy a total of 43 days at Toisnot Middle School in Wilson.
Because of Crystal's disabilities, her mother, Charlene Falls, is currently meeting with representatives from Fike and Wilson County Schools to craft an Individualized Education Plan (IEP)--a document developed by parents and school administrators that identifies curricular modifications and limitations, while targeting appropriate objectives for students with special needs over a given period. Falls fears the consequences of not having an appropriate IEP in place for her daughter's high-school years.
"One day I just might go over to the school and find my daughter lying there dead," she says.
Falls fears the toll such everyday activities as climbing stairs to get to class, or jostling about on a hot day, can take on Crystal. She worries about how her daughter can appear fine one day and then, after exerting herself, collapse or go into seizure the next. "And that scares me to death," her mother says.
But while Falls is fearful over what could happen to her daughter at Fike, she remains upset over what did happen to Crystal at Toisnot. So upset that two months ago, she filed a complaint with the federal Office of Civil Rights against the middle school and the Wilson County school system for what she believes is a violation of her daughter's right to an appropriate education under the federal Individuals with Disabilities Education Act (IDEA).
Under the act, public agencies must "ensure that all services set forth in a child's IEP are provided, consistent with the child's needs as identified in the IEP." Falls charges that the Wilson schools failed to do so during her daughter's time at Toisnot.
Initiated in August of 1998, just two months after her surgery to repair a leaking heart valve, Crystal's middle-school IEP stated that the school was to provide home tutoring when needed, abbreviated coursework and extended time for all tests--measures that were deemed appropriate, given the ongoing seizures, fatigue and fainting spells commonly associated with her conditions. During the first two years at Toisnot, says Falls, things went "pretty much according to plans."
However, when her daughter reached eighth grade, the process broke down. First, the school failed to provide a home tutor for Crystal for a five-month period between August of 2000 and January of this year, despite her mother's repeated requests for officials to do so. During that period, Crystal wracked up frequent absences and late days.
Second, Crystal's science teacher gave her "E"s--the equivalent of a failing grade --for not coming to class and completing in-class assignments. Initially, this resulted in the school denying Crystal a promotion to the ninth grade. She was eventually allowed to move on to high school after completing summer make-up work.
Falls, who is a registered nurse, says school administrators "knowingly and willingly put my child at risk." She goes on to point out that Toisnot Principal Dalphine Perry, members of her staff and special education representatives from Wilson County Schools, were not only aware of her daughter's documented needs, but were part of the team that developed her IEP in the first place.
"Her needs have been the same since she got to Toisnot," Falls says. "I don't know what the hell they were thinking. It was like, all of a sudden, no one could comprehend the information that was given on the IEP."
She struggles with whether or not her daughter's situation at Toisnot represents an unfortunate breakdown in the delivery of special education services or some kind of personal vendetta on the part of Toisnot administrators against her daughter or herself.
According to the state Office of Administrative Hearings, 48 special education suits were filed in North Carolina from July 1, 2000, to July 1, 2001. During the same period, 64 special education complaints were filed with the state Department of Public Instruction (DPI). The state does not keep statistics on the number of additional complaints that are resolved via mediation. "Ninety percent of our (special education) cases are resolved without filing complaints with DPI or with the Office of Administrative Hearings," says Deborah Greenblatt, an attorney with the nonprofit Carolina Legal Assistance in Raleigh. Greenblatt, who is frequently called in to IEP meetings by concerned parents, points out that this type of mediation is commonly done at the local level. The number of suits, she continues, is further held down by the "terrible shortage of lawyers" in the state with expertise in this area.
A vendetta against Falls seems unlikely given that, one year ago, Perry presented her with a plaque of appreciation for her generous commitment to the school's art programs. The Arts Outreach program which Falls created--a home-based nonprofit aimed at helping children, the disabled and associated organizations get financial support for activities that enrich their lives--has channeled more than $45,000 in art supplies and other support to Toisnot.
In addition, her name is enshrined on a large banner at the entrance to the school in honor of the institution's major supporters.
"It's crazy," says Falls. "Maybe I could understand it more if we had been unkind to them in some way, but we haven't."
Unfortunately, life hasn't been kind to Falls or her daughter. The origins of Crystal's illness can be traced back to the misfortunes of her mother. Two years prior to her daughter's birth, the elder Falls--who had spent six months in the National Guard prior to transferring to active army duty--went for a run with her unit while stationed at Fort Dix, N.J. A former standout on the track team at Beddingfield High School in Wilson, Falls was accustomed to training in the 95-degree heat that stifled the base that June afternoon. But her training wouldn't prepare her for what happened next.
"I fell out," says Falls, recalling how lightheaded and nauseous she felt. Her staff sergeant, assuming her spell was heat-related, instructed the groggy 19-year-old to sit to the side for a brief rest. Still feeling sick, Falls resumed training with her unit and struggled to complete the day's remaining exercises.
Two days later, Falls participated in rifle training with her unit in similar heat. She collapsed again and was taken to the base's infirmary. After examining her, doctors at the base found excess protein in her urine and subsequently recognized that one of her kidneys was failing. She was sent to Walter Reed Medical Center in Washington DC. There, the medical staff ultimately determined that the filtration system for Falls' kidneys had shut down as a result of numerous immunizations she'd received upon entering the military.
The shots had proven toxic to her system. "A nurse told me there was a good chance I was going to die," says Falls, with a humorless chuckle. "I was hysterical."
She didn't die, but her road to recovery was far from easy. Over the next year, while remaining hospitalized, Falls underwent a variety of taxing treatments--including one steroid-based regimen that caused her to gain over 20 pounds in 30 days--in an attempt to stop the toxins that were destroying her kidneys. None were successful, and her progressing renal failure eventually caused her to lose her eyesight. Her vision would eventually return after a 1992 kidney transplant.
"I was getting sicker and sicker," says Falls, who describes herself then as "an emotional wreck." Though Falls had a large family back in Wilson, she says that at the time, "they didn't know how to help me. They had never experienced anything like my condition and didn't know what to do."
Arlene Woodard, Falls' mom, says family members were confused. "I didn't know what was going on until I got there," she says. The Wilson resident remembers being told by doctors "there was something seriously wrong with her kidneys. We ended up going back and forth to D.C. about every month."
Twenty years old and legally blind, Falls began receiving dialysis to aid the filtration process of her kidneys. About the same time, in between treatments in D.C., she began dating a childhood acquaintance from Wilson. Their relationship was brief, and Falls eventually returned to Wilson for treatment, but not before becoming pregnant.
Crystal was born on March 3, 1987. The delivery was anything but smooth. During a three-day attempt to induce labor, Falls went into cardiac arrest. An emergency Caesarean section was performed to save both mother and child.
"I could have easily given up and died," says Falls, who instead, says she "willed myself to live for Crystal."
Though the procedure proved successful, Falls' fragile condition took its toll on her daughter. The six-pound baby was born with chronic epilepsy, extreme nearsightedness and an enlarged heart. At the time, doctors were unaware of the extent of Crystal's congenital defect.
Despite her illnesses, Crystal's childhood was a fairly normal and active one. "She would rip and run like a wild gazelle," laughs Falls, recalling her daughter's passion for bicycles and dancing. The latter included years of formal training in ballet, tap and jazz. But the laughter stops as Falls describes how Crystal often felt after participating in these activities.
"She would get real tired and her eyes would swell," she says, adding that it wasn't uncommon for her daughter to go into seizure or "pass out, wake up minutes later and not remember a thing."
Falls will never forget what happened on June 29,1998, a month before Crystal entered Toisnot as a sixth-grader. The then 11-year-old was admitted to Pitt County Memorial Hospital after a routine chest X-ray revealed, according to the discharge summary written five days later, a "cardiac silhouette that was quite enlarged."
Crystal underwent six hours of open-heart surgery to correct a leaking heart valve. "It was a bad situation," says Falls, recalling how lifeless and pale her daughter looked when they rolled her out of surgery. "I lived in a hospital chair for five days."
While the surgery would significantly improve Crystal's heart function, it fell short of correcting her congenital defect. So, with input from Falls and Crystal's doctors, Toisnot and Wilson County Schools arranged an IEP to accommodate her special needs.
Two years later, those needs remained. In a note from pediatric cardiologist David Hannon to Falls dated Aug. 1, 2000, the East Carolina University physician wrote that the rising eighth-grader would continue to suffer from "chronic fatigue and exercise intolerance due to orthostatic intolerance and her tricuspid valve abnormality." Orthostatic intolerance is a condition where a person is prone to faint upon standing erect.
In November, after Falls' repeated requests to Perry and the school system for a home tutor, a conference was called to discuss Crystal's needs by Brenda Purvis, an exceptional children's program specialist for Wilson County. On Nov. 15, with Falls, Purvis and Perry among those in attendance, it was determined via an updated IEP that Crystal's needs remained justified, and that a home tutor was to be provided at least twice a week. In addition, Purvis noted on the side of the IEP form, "homebound services (home tutoring) will increase if Crystal has any extended absences."
Finally, in January, Crystal received her tutor. But her problems were far from over. Her science teacher, Shelby Boykin, consistently gave Crystal failing grades for not coming to class and failing to complete the same assignments as her peers. According to Falls, Boykin told her those grades would change once he could grade the work he passed on to Crystal via the home tutor now in place.
In compliance with the IEP, Crystal submitted her completed assignments via her home tutor to Boykin by year's end. On May 23, a proud Falls watched an excited Crystal participate in her graduation ceremonies at Toisnot. But five days later, Falls received a letter from Perry stating that her daughter was being held back as a result of her failing grades in science. The letter further recommended that Crystal enroll in summer school if she was to have any chance at moving on to the next grade.
"I was floored," says Falls, noting how Crystal cried over the letter. "I had no clue that he was going to fail her for the year." In her subsequent June complaint, Falls charges that Boykin "refused to grade Crystal's work that the homebound teacher turned in" and held her responsible for missed in-class assignments, even though her IEP maintains that "she is not to be held liable for work she is not there to receive."
Unfortunately, Boykin, Purvis and Perry did not return repeated phone calls from The Independent, even though Falls offered to give permission to any teacher or administrator who wished to talk publicly about her daughter's experience at Toisnot. In response to the paper's calls to the Exceptional Children's division of Wilson County Schools, a public relations representative said merely that "there are no circumstances under which we would comment on a case being investigated by the Office of Civil Rights."
Although he is not familiar with the details of this particular case or Falls' complaint, David Mills, a chief consultant in exceptionality for DPI, echoes the gist of Falls' arguments.
"A student cannot be graded on work he or she is not there to receive," he says, especially "if a homebound teacher has not been appropriately provided."
Connie Hawkins, executive director of the Exceptional Children's Assistance Center, a Davidson-based advocacy group for children with special needs, agrees.
"Once something is put on an IEP, no one can legally ignore it," she says. Hawkins describes the development and implementation of IEPs as "a team sport," where the IEP team and all school staffers are legally bound. No one, she says, can decide to ignore or revise any part of an IEP without it being amended by the team. "The laws governing special education make it very clear that there are no one-person decisions."
Furthermore, Hawkins says, the school is obligated to enforce the IEP, while the state is obligated to ensure that its schools are effectively serving all North Carolina's students. But since those who enforce the laws can't check on every IEP, adds Hawkins, "it often boils down to good faith efforts on the part of the schools."
Falls' efforts at pushing Toisnot to make good on the services they promised her daughter were faithful. When the school failed to provide Crystal a home tutor last fall, Falls repeatedly asked the principal to do so. When the principal failed to do so in a timely fashion, she then contacted the county's exceptional children's division.
Mills says parents who take responsibility for making sure an IEP is followed should be able to have confidence that their vigilance will pay off.
"Those who know of a problem with an IEP must bring it to the attention of those who are supposed to implement it," he says. "Once a problem is recognized, it should not linger."
Falls is currently considering getting legal help for her complaint against Wilson County schools. However, even if she does secure representation and subsequently decides to sue in court, the chances of ultimately receiving monetary damages--something she has expressed an interest in--are slim to none.
"We have a very conservative federal court," says New Bern attorney Stacey Bawtinhimer, who handles mostly special education cases. The Fourth Circuit courts, she explains, have determined that you can't get damages under claims like the one Falls is considering filing. "The courts are just not as sympathetic to emotional damage as much as they are to physical," Bawtinhimer adds.
While she feels monetary damages are appropriate, since the school system "put us through the ringer last year," Falls would also be content with having an IEP in place that effectively meets all of her daughter's needs.
Given what they've been through in their lives, Falls and her daughter are certainly not intimidated by the prospect of yet another battle. "We're both fighters and survivors," she says. "And that's all we know how to be."