The Spirit Catches You and You Fall Down by Anne Fadiman
Once a child is removed from parental custody, Child Protective Services must file an explanatory petition within two days, and a detention hearing is usually scheduled for the day after the petition is filed. Nao Kao Lee appeared in court on June 28, 1985, accompanied by a public defender. No one remembers whether an interpreter was there as well. The judge approved CPS’s petition to detain Lia; Nao Kao, who was unaware that it was permissible to object, is recorded as assenting. The plan detailed in the Disposition of Case #15270 called for Lia to remain in foster care for six months, the minimum time that Neil estimated would be needed to stabilize her seizure disorder. Her parents would be permitted weekly visits, though these did not start until she had been away from home for more than a month. In fact, following a policy, common at the time, that was intended to prevent distraught parents from immediately retrieving their children, CPS did not inform Foua and Nao Kao of their daughter’s whereabouts for several weeks. According to Nao Kao, “After one month, I went to my cousin who speaks English and asked him to call the police and ask where Lia is because my wife was missing Lia too much and she was going crazy.” Lia was to be reunited with her family after six months only if the court was persuaded that her parents would comply with her medication regimen. Child Protective Services was to work with them to increase that likelihood. If the court did not decide within a year that Lia could safely return to her family, the Lees would permanently lose custody.
It was the responsibility of CPS to find Lia an appropriate foster home. Her caseworker filled out a form for “Specialized Foster Care”—that is, care for a child with unusual medical or behavioral problems. Among the “Behavior Problems of Child” that she circled were: “Has had one or more violent episodes, causing minor physical injury within the last year.” “Has caused minor [property] damage on six or more occasions within the past year.” “Displays self-injurious behavior (biting, scratching) at least once a month.” “Becomes aggressive or hostile when frustrated.” “Does not participate in social activities.” “Does not participate in group projects.” “Is hyperactive in all environments.” “Is resistive in all situations.” “Has temper tantrums daily.” The caseworker was to add up the points and rank the cumulative severity of the problem behavior on a scale from 40 (the best) to 70 (the worst). At 81, Lia’s score was off the scale. The only categories in which she received favorable—indeed, perfect—scores were “No evidence of depressive behavior,” “Responds to affection appropriately,” and “Gives affection appropriately.”
A day or two before Lia was removed from her home, Dee and Tom Korda, a couple living twenty-five miles northwest of Merced who had recently been certified as foster parents, received a call from CPS. “We’ve got a two-year-old Hmong girl with epilepsy,” said the social worker. “Can you handle it?” At the time, Dee Korda had never heard the word “Hmong,” had four children of her own, was pregnant with her fifth, and was taking care of another foster child, her first. “Sure,” she said. Dee told me several years later, “I was so eager I would have taken anything they offered.”
I was curious to meet the Kordas, because when I called Dee, the first thing she had said was, “How are Foua and Nao Kao? Don’t you just love them?” Since at that point I had never heard an American say a good word about the Lees, and since I subscribed to the conventional wisdom that biological parents and foster parents are natural enemies, her question threw me somewhat off balance. When I arrived at the Kordas’ rambling one-story house, which was in a dairy community dotted with peach and almond orchards, I was greeted by several large dogs that Dee and Tom, with the help of the five biological and six foster children, most of them retarded or emotionally disturbed, who were living with them at the time, were raising as canine guides for the blind. As we sat in the living room, Dee simultaneously showed me a small scrapbook full of pictures of Lia (she keeps one for every child she has cared for) and dispensed hugs to children of various sizes and races who wandered in and out.
After Lia arrived in the Korda house, she cried continuously for ten days. “Lia was the only child I’ve ever heard who could cry while inhaling and exhaling,” said Dee. “In and out, loud and abrasive, on and on and on. I know she was crying for them, for her mom and dad, even though she didn’t know the words to tell me. I’d find her curled in the bathtub, her face real worried and troubled and confused and sad. Sometimes she would pound at the door like a caged animal and shout, ‘Na! Na! Na! Na!’ Now I know that means daddy in Hmong.” (In fact, Lia was probably saying niam—pronounced “nya”—which means mother; the word for father is txiv.) Because the Kordas spoke no Hmong, they had no way of comforting Lia verbally. The only thing that seemed to help was constant physical contact. During the day, Dee simultaneously carried Lia in a backpack and her own youngest child, who was nine months old when Lia arrived, in a frontpack. At night, Lia usually slept in the Kordas’ bed, which was ten and a half feet wide, large enough to accommodate a substantial fraction of the household. When Lia was inconsolable, Dee, guessing correctly that she had never been weaned, breastfed her alongside her own baby. “If there was ever going to be a way, it was Lia’s way,” she told me. “That’s what she was used to. Her family let her rule the roost at home because she was the special child, the princess. Oh, Lia could be ornery and strong-willed, but she was a sweetie too. She’d crawl on your lap. She was so beautiful. We didn’t mean nothing to her at first, but she learned to love us. She knew how to love and how to let people love her. We were blessed to have Lia.”
Jeanine Hilt, the CPS caseworker, frequently visited the Kordas during this period and kept a Welfare Services Contact Record that gives some idea of what the Kordas’ less blessed days with Lia were like. Some of the entries:
Lia’s problems are very behavioral. Cries constantly. Real disruptive, real anger. Will cry non-stop 2–5 a.m.—kicking. Won’t give in. Family is on edge.
Tantruming. Withholds food. Looks at Dee, takes off her panties and pees.
Pooping on floor now.
Bit herself on lip.
Lia crying 4 days straight. Smearing feces.
Intense crying again. Stripped herself, peed on the floor, went on a wave of destruction. Had to sedate her.
Noting that Lia had “inflicted numerous injuries on other children ranging from bruises to cuts requiring stitches” that she required constant supervision to keep her from “activities that she has previously experienced as harmful or dangerous, i.e., hot water, bathtubs, high places, swimming pool, etc.” and that the Kordas were providing an “extremely high level of care,” Jeanine Hilt successfully petitioned the Department of Human Resources to pay Dee and Tom the unusually high fee of $1,000 a month for taking care of Lia. (The Lees had supported themselves and the seven of their nine surviving children who were living at home, including Lia, on $790 a month in welfare payments plus $84 that Lia, whose epilepsy had qualified her for disability funding, received as Supplemental Security Income.)
In her letter to the Department of Human Resources, Jeanine Hilt also noted that Dee Korda was taking Lia to between two and five doctors’ appointments a week. Despite the fact that Dee followed the anticonvulsant prescriptions to the letter (a task that sometimes required holding Lia down and repeating the doses after she spat them all over Dee’s clothes), Lia was still seizing. In fact, she seized more frequently at the Kordas’ than she had when she was living with her own family. She was hospitalized four times at Emanuel Medical Center in Turlock, the town nearest the Kordas’ home, and on one occasion was transferred from Emanuel to MCMC, which did not make a favorable impression on Dee. “The MCMC nurses wouldn’t talk to her nice and soft,” she told me. “When she soiled her bed, it wasn’t Oh honey, it was My god what a mess. They’d tie both arms and both legs with cloth, like nursing homes use on old people. It was degrading.” Lia’s new doctors in Turlock changed her prescription several times, eliminating first the phenobarbital and then the Tegretol and substituting various combinat
After they found out where their daughter had been taken, Lia’s family visited her whenever their nephew, who owned a car, could give them a ride. The first time they visited, Dee showed them how she carried Lia on her back, just the way Foua did, and how Lia slept in the family bed. The Korda children lent the Lee children bathing suits, and they all swam together in the backyard pool. Pang crawled on the lawn with Dee’s baby. Eventually, the Lees’ twelve-year-old daughter May became friends with the Kordas’ ten-year-old daughter Wendy, and once spent a whole week at their house. Foua embroidered a nyias, a Hmong baby carrier, for Dee. After a few months went by, Dee started leaving her own baby with Foua when she took Lia to medical appointments—perhaps the first instance in the history of Child Protective Services that a foster mother has asked a legally abusive parent to baby-sit for her. It did not take the Kordas long to decide that CPS had made a mistake in taking Lia away from her family (though CPS, when Dee told them so, did not agree). “I was attached to Lia, but she really needed to be at home,” said Dee. “Foua and Nao Kao were so warm, so caring, and they loved that child so much. I’m bitter. They never should have been in the system.” By the time I met Dee, she had taken care of a total of thirty-five foster children, most of whom had been severely battered or sexually abused by their parents. Lia was the only one for whom she had ever recommended reunification.
At the end of each of the Lees’ visits to the Kordas’ house, Lia tried to get in the car with them and screamed with panic when they drove away without her. Nao Kao told me, “The family really took care of Lia and really cared for her too, but maybe she missed us too much and that is why she got sicker. We missed her too. I do not know how to describe how we missed her.” Foua said, “Our bed was empty without her. I loved her a lot and I had always held her during the night and didn’t let her sleep by herself. I cried every night when I got in the bed and she was not there.” Two months after Lia had been taken from her family, Nao Kao told the caseworker that he wanted to commit suicide if Lia did not come home. Four months after that, Nao Kao came home to find Foua pointing a knife at herself. He took the knife away. A month later, Jeanine Hilt’s case log noted that Foua was hysterical and threatening suicide again. Child Protective Services considered placing the entire family in a psychiatric hospital, but decided against it.
Lia did not return home after six months, as the Lees had expected her to. On December 18, 1985, at the Six-Month Reunification Hearing, the court ruled that Foua and Nao Kao had failed to demonstrate their ability to comply with their daughter’s medical regimen. First, they had refused to sign a Social Services Plan that had been presented to them in August, which stated, among other things, that in order for reunification eventually to take place, the Lees must agree to “make and meet medical appointments for our child, including appointments for routine care and illness, and learn how to properly administer her medication.” A CPS worker wrote on the Plan, “Their feeling is that Lia should be returned to their care at once; consequently they declined to sign the agreement.” Second, when Lia had been permitted a week-long home visit in September as a test of her parents’ compliance, they had failed miserably. The CPS petition against reunification noted:
The parents were again instructed, via interpreter, on the proper method of administering the medications. Color coded graphics were also utilized to reinforce the instructions. The parents stated they understood and indicated that they would follow through immediately. During this visit the parents were allowed to have the minor treated by a Shamin [sic] from the Hmong culture. Home calls by social workers were completed during the time the minor was at home and the medications were checked and it appeared as though the medications were being administered. The parents report no seizures. Lia was returned to the foster home on September 9, 1985 and was hospitalized later that day. Blood level checks revealed that no traces of any medications were found in the minor’s blood. Dr. Goel [Lia’s pediatrician at Emanuel Medical Center] stated that the parents did not give Lia any medicine as the medication remains in the body for at least ten days. The medication vials were returned empty by the parents.
Jeanine Hilt wrote in her case log that when Lia returned to the Kordas, her chest was covered with coin-rubbing lesions. Foua and Nao Kao had obviously opted for traditional healing techniques and, as Jeanine noted, “trashed the meds.” Four days after this home visit, Lia had three grand mal seizures and six petit mal seizures, after which her developmental deficits became far more pronounced. The petition stated that
language delays were noted, her motor skills regressed, she would not eat or maintain eye contact, and she engaged in repeated head-banging behavior. Lia also became encopretic [fecally incontinent], engaged in a variety of self-abusive behaviors such as scratching and biting, could not sleep, was abusive to other children, and lost all ability to recognize safe situations. These regressions were all related to the parents’ failure to administer the medication while Lia was in their care. These regressive behaviors have continued.
Despite these setbacks, Jeanine Hilt was determined to try to continue to educate the Lees about Lia’s medications so that they could regain custody before twelve months elapsed and they legally lost her for good. Jeanine spent dozens of hours working with Foua. Her task was aided by the fact that Lia’s drug regimen was radically simplified in February of 1986. Dee had taken Lia to Valley Children’s Hospital in Fresno for extensive neurological testing, where Terry Hutchison, a pediatric neurologist, reached a tentative diagnosis of Lennox-Gastaut Syndrome, a rare form of epilepsy characterized by mental retardation and several forms of hard-to-control seizures. Dr. Hutchison decided that Depakene, used alone, was the drug of choice. (Neil and Peggy had considered Depakene but had decided against it because it can cause liver failure; once Lia was started on it, they wished they had prescribed it themselves.) Pediatric Depakene is a liquid that tastes pleasantly of cherries, and it was far easier to administer than the complicated combinations of bitter ground-up pills Lia had previously been taking. Jeanine showed Foua how to use a plastic syringe to squirt the liquid into Lia’s mouth, placing a piece of masking tape at the 8-cc mark because Foua couldn’t read numbers. Foua practiced with water until she was proficient, then graduated to Depakene.
Jeanine felt that Foua was slowly learning to trust her and was making good progress. She did not develop a similarly intimate relationship with Nao Kao, who continued to fear that Lia would never come home. He was wary of Jeanine, but he was not angry at her. His rage was reserved for Sue Xiong, the interpreter who had accompanied the CPS workers on the day of Lia’s original detention. Sue Xiong, a sophisticated, well-educated Hmong woman who had married an American, was not a popular figure in Merced’s traditional Hmong community. Intermarriage is rare among the Hmong. According to Jeanine Hilt, “Culturally Sue was pretty white, and she dressed real cute and was not at home having babies and sustaining the Hmong culture very well, so a lot of Hmong really saw her as selling out.” Sue Xiong once told Nao Kao that she had informed CPS she did not think he should get his daughter back. In February of 1986, when Lia was at Valley Children’s Hospital in Fresno, Nao Kao says Sue Xiong scolded him, and he became convinced that she was not accurately translating his statements to the doctors. The next day, back in Merced, Jeanine Hilt, Sue Xiong, and a CPS supervisor came to the Lee house. Nao Kao told me, “I was outside and Sue came inside and she called me and said, Come in here, you come in here. At that time, I was ready to hit Sue, and I got a baseball bat right there. My son-in-law was with me, and he grabbed me and told me not to do it.
It is a credit to Jeanine Hilt’s faith in the Lees that Sue Xiong’s near encounter with Nao Kao’s baseball bat did not permanently disqualify them from regaining custody of their daughter. The way Jeanine saw it, Nao Kao had plenty of reasons to be angry, and as long as he didn’t take out his anger in the form of medical noncompliance, it should not interfere with the reunification of his family. Starting on February 18, 1986, the Lees were permitted to keep Lia for a series of overnight visits under Jeanine’s supervision. Blood tests showed they had administered adequate levels of Depakene. In the petition CPS filed at Lia’s Twelve-Month Reunification Hearing, Jeanine Hilt wrote: