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The Daily News (Longview, Wash.)
November 20, 2012 3:15 pm
By Amy M.E. Fischer
LONGVIEW, Wash. — Barbie Christopher sat on the couch in front of the TV at her caregiver’s home, her arms folded across her chest.
Hours passed, but the 36-year-old Longview woman, agitated unless medicated, didn’t speak or stir.
The next day, she was dead. An autopsy revealed the cause was deep vein thrombosis. A massive blood clot had formed in her leg, then dislodged and traveled to her lungs, killing her.
The date of her death was Oct. 1, 2012, but the real Barbie — vivacious, dramatic, headstrong — had been gone nearly a decade, locked in her own head. In her place was a silent madwoman who paced her parents’ Cascade Way home, ate plastic, makeup and paper, poured water on herself and flapped her hands.
Throughout the nightmare, her mother and stepfather, Cindy and Fred VanHoosen, never stopped believing their daughter could return to lucidity.
“We were really hopeful that if life could get calm enough for her so she could heal, she could come out,” said Margaret Lapic, a longtime local advocate for the disabled.
The old Barbie was in there somewhere, they knew — the Barbie who’d brought them so much surprise and joy before her light went out.
Twenty-year-old Barbie sat at a piano in her graduation gown at R.A. Long High School’s baccalaureate. From memory, she fluidly played two religious songs, “My Tribute” and “As the Deer.” Then the slender, brown-eyed blonde stood at the podium, her hands trembling as she read from note cards.
“I’m a little bit scared and nervous about what the world has in store for me,” Barbie said.
She quoted Joshua 1:9. “Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go.”
Despite her challenges, Barbie had led a remarkable life.
“Barbie was beautiful and articulate, but it would take you about three minutes to figure out she was on a completely different path,” her mother said. “She wouldn’t get the jokes, she wouldn’t get the drift.”
Born with a developmental disability that doctors of her youth couldn’t identify, Barbie finally was diagnosed with autism at age 32.
A tenacious young woman, Barbie taught herself to swim at age 2 in the family’s Los Angeles pool. As a pre-teen, she accompanied her mother, a flight attendant, on trips around the world. She was an authority on cats. She swam the 500-meter race for the high school swim team. She taught another girl to play piano for her senior project. She memorized the driver’s manual and passed the driving test on her 15th try. She could type 120 words a minute.
“Barbie was determined. She had determination like you never see,” said Cindy VanHoosen, a trim woman with a sleek blonde bob. “I learned to correct her as opposed to confront her.”
Wanting Barbie to be happy, her mother and stepfather, who was chief pilot for a major airline, threw their money and support behind her goals.
But sometimes, despite everyone’s best efforts, things don’t work out.
Born in Inglewood, Calif., in 1976, Barbie was a bright-eyed little girl who loved playing with dolls in her room. When a preschool teacher noticed she wasn’t socializing, Barbie was referred to a psychologist.
Experts said Barbie was developmentally delayed. She went to speech therapy. For years, Barbie’s test scores were “all over the place,” and doctors kept changing her diagnosis, VanHoosen said. Unlike today, autism wasn’t a common problem everyone knew about. But Barbie did well in a predictable, structured environment with teachers who understood her quirks and redirected her behavior.
The family moved to Longview in 1993, when Barbie was 16, and she entered the special education program at Mark Morris High before transferring to R.A. Long. After graduating in 1996, she attended Lower Columbia College for four years. She pushed for — and received — note takers and extra assistance to help her cope with her disabilities.
Thanks to her photographic memory, Barbie earned a medical transcription degree. But when it came time to convert doctors’ voice recordings into typed reports, she couldn’t apply her knowledge, particularly when a doctor spoke with a foreign accent, her mother said.
Then Barbie decided she wanted to be a teacher.
“She was magical with kids. She was like the Pied Piper with them,” Fred VanHoosen said.
With the help of a boyfriend, Barbie passed college algebra at LCC. At that point, she was teaching swimming at the YMCA, driving a car and advocating for herself. Barbie was ready to earn her bachelor’s degree.
She and her parents settled on Seattle Pacific University, a small Christian campus where Barbie was set up with a full-time counselor, a private tutor and a special computer reading program.
Things went well — at first. Barbie was driving in Seattle, riding the train and using the bus system. She had a 3.5 grade-point average. Her one-on-one practice teaching with a student with Down Syndrome was successful because “she thought like a child” and enjoyed working with mentally challenged people, her mother said.
Teaching a classroom of 30 mainstream second-grade children was a different matter: Barbie was overwhelmed. As a result, Barbie’s instructor doubted her ability to become a teacher and wanted her out of the program, VanHoosen said.
Already anxious and homesick, Barbie dropped out of college.
As she was preparing to leave campus, her special needs accommodations person asked, “Barbie, have you ever heard of Asperger’s Syndrome?”
No, she hadn’t. But in typical Barbie fashion, she researched it, and the power of suggestion took hold.
Her carefully knitted life began to unravel.
Back at her parents’ house, Barbie decided she had Asperger’s, a developmental disorder on the autism spectrum that affects the ability to socialize and communicate effectively. Then she began exhibiting Asperger’s characteristics she hadn’t displayed before.
Cindy VanHoosen remembers the time she and Barbie met with an Asperger’s specialist in Portland. Barbie was framing her own behavior in terms of Asperger’s.
“I was thinking, ‘You’re not like that, Barbie,'” VanHoosen recalled. “Barbie could act. … She did like to make people dance, so to speak.”
Meanwhile, Barbie was sinking into a deep depression. It was 2001, and she was 25. She’d gotten her job back at the YMCA but quit because she felt excluded by a clique of high school co-workers. She applied for a teacher’s aide job in Kelso and was thrilled she passed the test without any special help. But in the competitive job market, Barbie wasn’t hired.
She called suicide hot lines. A local psychiatrist prescribed her the antidepressant Zoloft. Noticing Barbie’s mood seemed to be worsening, her alarmed mother called the psychiatrist. Due to strict patient privacy laws, however, he didn’t return VanHoosen’s calls, and Barbie wouldn’t sign release forms allowing her doctors to discuss her case with her parents.
“There was a rebellious streak in Barbie, and she became very opinionated,” even when her facts weren’t straight, said her aunt, Debby LaRiviere.
Barbie went to the state Department of Social and Health Services and returned enthusiastic. They would train her and help her find a job of some sort, she told her mother. VanHoosen thought it was a valid option. To help Barbie feel more self-sufficient, she rented her a unit at Maple Terrace Apartments by Lower Columbia College in spring 2002, thinking perhaps Barbie would audit some classes.
At Maple Terrace, Barbie began hanging out with other tenants, one of whom was schizophrenic.
Barbie researched schizophrenia on her computer.
Into the psych ward
Her mother was on a plane when Barbie took a taxi to St. John Medical Center in August 2002. (Following the advice of an online Asperger’s expert who’d said driving was too stressful for her, Barbie had surrendered her car to her mother.)
The 26-year-old had learned a few key words in her schizophrenia and suicide research. When she uttered them at the hospital, Barbie found herself in the psychiatric ward.
“She was now entered into a world where there were very serious consequences,” Cindy VanHoosen said.
Instead of being treated as someone with a developmental disability, Barbie was a mental patient. The hospital kept her 10 days. She was put on a cocktail of medications, including antipsychotics and antidepressants.
When a patient is involuntarily detained, state laws kick in, according to Lapic, the disability advocate. Patients must abide by certain conditions upon their release — show up to counseling appointments, take medications as prescribed. If the patient violates the conditions, she is brought back to the hospital for a “tune up.”
And so a vicious cycle had begun. Under court order, Barbie was locked up in the hospital psych ward over and over.
“People in good faith were trying to help her and do the right thing for her, but she didn’t fit into the boxes and the labels they were putting on her,” Lapic said.
In the eyes of medical professionals, Barbie was an adult and therefore had the right to make her own choices. Due to patient privacy laws, her family was not allowed to participate in decisions about her care.
After years of being part of Barbie’s “team,” VanHoosen now was viewed by the mental health system as a neurotic, overbearing mother. Concerned that Barbie was being overmedicated, VanHoosen sought guardianship so she legally would have a voice in the matter. But the court denied her request because she was seen as “enmeshed” with Barbie, meaning they were too close and dependant on each other, Lapic said.
Barbie was in and out of the hospital for about three years. Each time, she came out worse. She began to shut down. She gained weight. She lay in bed all day petting her cat.
Initially, she kept her apartment at Maple Terrace. Then she lived with her court-appointed guardian. When the guardian moved to Phoenix and abruptly placed Barbie in a Vancouver adult family home, VanHoosen was told not to visit. VanHoosen called the state psychologist and said the system was killing her. The psychologist reassured VanHoosen everything would be fine and that Barbie would be taught job skills and incorporated into the community.
One night in spring 2005, just days after the move to Vancouver, Barbie, now 29, left the house. Her caregivers called for a crisis team, and she was taken to a Vancouver hospital’s psychiatric emergency department. Barbie was terrified. She was placed in four-point restraints and sedated. Her increasingly tenuous hold on reality snapped.
Her guardian brought her home to Longview a day or two later. The old Barbie had vanished.
“By then it was all over,” Cindy VanHoosen said. “I had raised a little girl that had done exceedingly well. She gets into the system and comes back absolutely crazy.”
Manic and mute, Barbie would shake, flap and run up and down the stairs all night at the VanHoosen’s home.
She ate everything in sight, food or not. She wouldn’t shower or let anyone bathe her for months, but she was obsessed with water, letting faucets run, flushing toilets repeatedly, wetting towels and flinging them around.
“There were times when we had a little gorilla loose in our house,” VanHoosen said. “There were times I was afraid.”
Fearing Barbie would electrocute herself, her parents shut off the water and the circuit breakers. They safe-proofed the house and put sharp objects, food and paperwork in the basement.
VanHoosen didn’t want to put Barbie in a psychiatric facility because “that was how she got here.” State developmental disability professionals from Olympia frequently visited, but Barbie didn’t calm down for nine terrible months. Once talkative, Barbie was mute for another year, and when she spoke, she would say just a few words.
“Go home, go home, go home,” Barbie would chant on car trips to Olympia to see her doctor.
Her parents hired caregivers. (After Barbie was released from the hospital, the state abruptly dropped all of her services, her mother said.) A believer in lots of exercise and no medication, VanHoosen saw to it that Barbie walked around Lake Sacajawea daily because it helped curb her agitation. Barbie was such a fast, aggressive walker that sometimes her chaperone had to follow her in a car.
For the next six years, her parents tried to get the old Barbie back as doctors willing to get involved in the case monitored the situation. Sometimes they’d try a new medication, but for the most part, nothing helped. Brain scans didn’t reveal the source of the problem — her brain was healthy, and her case remained a puzzle.
“If you hadn’t known Barbie before, it was very difficult to imagine she was this vibrant person,” said her aunt Debby LaRiviere, whom Barbie had once tutored for a math test she needed to pass to work for the Kelso School District.
Instead, Barbie presented as a “severely disabled retarded child,” LaRiviere said.
On several occasions, Barbie would briefly return to lucidity for a few precious minutes or as long as an hour. Her expression and posture would transform, and she could carry on a conversation. When VanHoosen questioned her, Barbie had no memory of what had happened. Once, Barbie asked who “he” was — the caregiver who had been at her side for months. Then she would withdraw into herself, unreachable again.
She would lie in her room listening to classical music, Christian songs or John Tesh’s talk show on the radio. When especially agitated, she’d switch the station to static.
‘Should never have happened’
During those difficult, isolated years, VanHoosen joined the National Alliance of Mental Illness and sought counseling “to make sure I wasn’t losing my mind.” She connected with Margaret Lapic, who was director of the Cowlitz Valley Association for Retarded Citizens (now ARC) for 18 years and formerly managed the county Human Services Department. With Lapic in her corner, VanHoosen had credibility and a voice. She finally won legal guardianship of Barbie in 2008.
“In many situations like this, advocacy is just critical,” Lapic said. “I wish I had known Cindy before. … Some of these things that had happened should never have happened.”
Now VanHoosen was able to get Barbie’s extensive medical records and test results organized and analyzed by a clinical psychologist. Dr. Lisa Hardebeck provided the answer Barbie’s family had sought for three decades: she was autistic. Barbie’s case with the state was re-categorized and funneled into a system for developmental disabilities rather than mental health. She became eligible for residential services and qualified to live in a “companion home,” in which one family takes in one client.
Lapic encouraged the move to another home because if something happened to her parents, Barbie wouldn’t have anyone to ease her transition to a new living situation. Cindy VanHoosen felt that after having Barbie home seven years, she and her husband had done all they could. Perhaps a new home environment would prove therapeutic for her.
In April 2012, Barbie was placed in a companion home in Woodland. Her mother visited often, meanwhile working on getting Barbie accepted at Oregon Health & Science University’s metabolic clinic for an in-depth evaluation. Maybe doctors there could figure out what was wrong with Barbie.
VanHoosen saw Barbie twice the day before she died. Barbie, who was taking Clonazepam, an anti-anxiety drug, Remeron, an antidepressant, and thyroid medication, was watching TV in a “catatonic state,” her mother said. VanHoosen left and returned several hours later to find Barbie in the exact same position. Her forehead was clammy, but VanHoosen, in a hurry because she was working a 3 a.m. flight, didn’t think much of it.
Barbie died at noon the next day.
As Barbie was dying in the ambulance, OHSU called her caregivers to say the metabolic clinic had agreed to take Barbie’s case.
A month-and-a-half later, Cindy VanHoosen is racked with grief and rage and guilt. In her mind, the missteps of herself and others replay in a constant loop.
“It never should have happened. There was hope for Barbie,” she said Thursday. “I feel I really let her down. … I’m not going to get over this. I’m not going to get through it. I’m not going to get better.”
Looking back at the struggle to get proper diagnosis and care for Barbie, VanHoosen said, “This happened to us and we have money. What happens to the families that don’t have money? … I’m a high-energy advocate, and I’ve got some very intelligent people working for me, and we’ve all been fighting and trying to work things out. And here we are.”
VanHoosen sits in Barbie’s bedroom decorated in white wicker furniture and dainty rose-patterned wallpaper. She turns on Barbie’s radio and pores over photo albums. A table in the living room is covered with snapshots. Albums are spread across the Oriental carpet.
Pictures of Barbie at Disney Land. Summer camp. Swim meets. Pre-teen Barbie and mom in flight attendants’ uniforms in an airplane galley. Teenage Barbie in red lipstick, elegant black dress and heels, smiling radiantly. Barbie carrying a breakfast tray of pancakes and a wrapped present to her mother.
Pictures of 30-something Barbie. She’s puffy, hunched over, hair in her face. The light in her pretty eyes is gone. She’s vulnerable, dependant, out of it.
“I miss both of them,” VanHoosen says, her eyes brimming with tears that don’t fall. “I don’t want to forget her.”