The Boy Who Loved Tornadoes: A Mother’s Story. By Randi Davenport. Algonquin Books, 372 pages, $23.95.

When Randi Davenport was a little girl, she set up shop in the attic with her father’s Royal typewriter and churned out books of poems and short stories. She typed title pages and copyright pages and wrapped each volume in a handmade cover. And for decades she kept writing, even after she’d had her first baby, a son she named Chase. A few years later, though, Davenport had to stop. There was no way to keep at it once everyone realized there was something wrong with Chase.

The diagnoses started rolling in just a year or so after he was born. His symptoms were all over the place, the doctors said. He missed his developmental milestones; he didn’t wave bye-bye or reach for the ball or say kitty when shown a picture of a cat. His doctors called it global developmental delay and watched him closely. As Chase got older and things got worse, Davenport saw new words appear on the doctors’ reports: Tourette syndrome, severe ADHD, seizure disorder, psychotic symptoms, atypical autism. But none of them exactly fit for Chase. A Yale specialist later said Chase’s disorder had “a population of one.”

When Chase started school, he complained that the other kids bothered him at recess, tried to take his toys, hit him, control his thoughts, make him do things. But his teachers never saw him play with anyone. After school, he sat — and sometimes thrashed and screamed — through MRIs and EEGs, trips to the pediatrician and the neurologist. Everyone agreed that something was wrong, but no one could put a name to it. If she had just known what to call his disease, Davenport says, it would have been some comfort.

When the family was still living in the Midwest and Chase was six, one of his doctors, a pediatric psychiatrist, came up with what may have been the most accurate diagnosis. But it was also the rarest and the most dismal, so he decided not to burden Chase’s parents with it. Privately, he’d written down the words true childhood schizophrenia.

Davenport says there were bright moments and flashes of normalcy in her son’s childhood, and these gave her hope. Chase won the science fair’s blue ribbon with his soda-bottle model of a tornado, complete with a tiny plastic cow that swirled through the twisting water. He loved music (when he reached his teens, Korn and Rage Against the Machine were his favorites). He rode his bike and swam for the swim team. He was sweet, funny, and endlessly curious. But from year to year, his symptoms only intensified.

In 1999, Davenport moved her family to Chapel Hill to find better services and treatment for Chase. The TEACHH program in UNC’s School of Medicine helped for a while, although there was only so much they could do for a kid like Chase.

As he approached his fifteenth birthday, Chase got scared. He thought his peers were plotting against him, following him, were gang members who planned to kill him. The gang members morphed into other enemies — an executioner, the Nailers (a roving squad whose objective was to nail people to chairs before killing them), FBI profilers, people trying to poison him, talking to him, hovering outside his bedroom window at night. The thread holding Chase to reality finally broke, and he sank into a deep psychosis.

Chase stayed in the psychiatric intensive care unit for adolescents at UNC Hospitals for more than seven months; he held the record for their longest stay. None of the medications prescribed by Dr. B. — the name Davenport gives the attending psychiatrist during Chase’s stay at UNC Hospitals — could pull Chase out of it, not even the most powerful antipsychotics on the market. In his most lucid moments, Chase believed he was being held in a concentration camp and that Davenport was an imposter, his real mother having been kidnapped by terrorists.

“I remember Chase’s case pretty clearly — it was unique,” Dr. B. says today. There was no way to diagnose him, Dr. B. says, “because there were no other patients like Chase.” For doctors, a diagnosis means having a group of patients with whom to compare the person being treated. Doctors can then treat the patient based on what’s worked for others in the same group. It also means having a concrete label to satisfy impatient insurance companies. But without a diagnosis, Dr. B. and his staff could only treat Chase’s symptoms by trying one drug after another. And they had to be quick about it — the longer a period of psychosis lasts, he says, the slimmer the chance of coming out of it.

But seven months after he was admitted to UNC Hospitals, Chase was skidding further and further out of reach. He still did not recognize his mother. Some days he believed he was the lead singer for Rage Against the Machine, other days the grim reaper or Jesus Christ. And his physical health was deteriorating. That’s when officials from the North Carolina State Health Plan decided that Chase no longer needed acute care and refused to pay for any more of his services.

Jarrett Barnhill, a UNC neuropsychiatrist, has been one of Chase’s doctors for the past twelve years, since Chase was ten. One of Barnhill’s specialties is treating people with autism, and he has some patients now in their sixties who’ve been under his care for over thirty years. He’s dedicated most of his career to treating patients who, like Chase, have a dual diagnosis — that is, both a developmental disability (such as autism spectrum disorder, cerebral palsy, or Down syndrome) and a mental disorder (such as schizophrenia, major depression, or obsessive-compulsive disorder). Chase had some of the most complicated symptoms Barnhill had ever seen.

Treating a patient with a dual diagnosis is tough, Barnhill says. Getting an accurate psychiatric diagnosis is tricky because these are usually based on self-report, which calls for a degree of self-perception that many patients with developmental disabilities don’t have. People with autism are also very sensitive to side effects and sometimes have unusual responses to medications, he says, so their doctors have to make careful treatment decisions.

But one of the hardest parts of treating a dual diagnosis: “These folks take a lot of time,” Barnhill says. “And the way the system operates, you’ve got seven or eight minutes you’re allowed to see a patient. You can’t take a lot of time. So in training for twenty-first-century psychiatry, you approach things as a medication problem.”

This sometimes leads to rampant overuse of medication. When one medication doesn’t work, Barnhill says, psychiatrists often add others without eliminating the previous, ineffective drugs. The drugs interact and sometimes interfere with one another and cause unexpected side effects. “You can end up on five, six, seven drugs, and no one knows what the drugs are doing at that point,” he says.

Barnhill worked with Chase to sort out the effects of his seizure disorder and the anti-seizure and psychiatric medications, and to understand his underlying metabolic problems. He says that it’s possible the combination of medications Chase was taking had something to do with his psychotic symptoms, although no one really knows what causes psychosis (or what can end it). There’s an old saying, Barnhill says: “‘All medicines are poisons with positive side effects.’ Some side effects can act like symptoms, and some actually produce psychosis themselves. Some can increase aggression, self injury, all the very things you put people in hospitals to try to correct.”

At UNC Hospitals, after every medication prescribed for Chase had failed, Dr. B. began to draw the same conclusions that Chase’s pediatric psychiatrist had come to years before. Most people with schizophrenia begin to show symptoms during their teen years, Dr. B. says. But childhood schizophrenia begins to show itself in early childhood. It’s resistant to almost all treatments. It’s often a hopeless prognosis. It was Dr. B.’s best guess for Chase, but it didn’t give him any better ideas about where to send the boy when Davenport lost insurance coverage.

Almost every facility in the state took one look at Chase’s file and concluded that he was too complicated, too expensive to take in. While North Carolina offers state services and treatment options for people who are mentally ill and for people who are developmentally disabled, there’s almost nowhere for patients who are both, Davenport says. The one place in North Carolina that had the services Chase needed and that had agreed to treat him — the BART unit of the Murdoch Developmental Center in Butner — had only twelve beds to serve the entire state, and no one was sure when a space would open up.

So Chase was moved instead to John Umstead Hospital in Butner. It was supposed to be temporary. State law stipulates that psychiatric hospitals aren’t allowed to care for people with developmental disabilities for any extended time. The doctors and staff at Umstead did the best they could, Davenport says, but their only real option was to ratchet up Chase’s medication. After five months, he was almost comatose. He’d lost too much weight and he spent the days drooling and nodding off, she says.

Friends suggested a lawsuit. But Davenport was terrified that Chase would waste away and die while the lawyers and hospitals and state officials battled things out. She’d called and written letters to everyone she could think of, asked for help from every official in the state’s Department of Health and Human Services (DHHS) that she could get on the phone. But eventually, when it became clear there was no easy fix for Chase, Davenport’s calls were stonewalled. One DHHS official even wrote to another in an email that Davenport “did not seem litigious, and so all was well.”

When Davenport had run out of options, she went to the only person in the state she thought could give her some advice. He happened to have an office right on UNC’s campus, not far from Davenport’s own. In her book The Boy Who Loved Tornadoes, she writes, “I knew that everyone said he was the most powerful man in the state, that three governors were indebted to him, that John Edwards had had to get his okay before he got into politics … I could not imagine that he would take an interest in me or in Chase.” But Bill Friday did take an interest.

“Randi came to me and told me what had happened,” says Friday, who served as UNC system president for over thirty years. “When I saw that I could do something about it, it was my duty then to respond. I made a few phone calls to help her get her boy the right kind of attention.”

After Friday made his phone calls, Chase suddenly had a room at the Murdoch Center. And, the staff assured Davenport, no one had had to lose services there for it to happen.

State dollars for mental health care in North Carolina have been dwindling for years, and funding for many services has already dried up completely. In 1998 the state government put into place the Community Assisted Care Program (CAP), a Medicaid-funded system that was supposed to ease the burden on state mental hospitals. In theory, CAP would allow hundreds of patients who lived in residential facilities to go home and live with their families, where experts would come to help care for them and administer treatments.

“But there are a small number of patients who are extraordinarily difficult to manage in the home setting,” Dr. B. says. “There are patients who need to be supervised twenty-four hours a day. Single parents can’t do that. Even for a large extended family, that’s an incredible burden.” So under the CAP program, the most severely disabled North Carolinians who cannot be treated at home must turn to expensive private facilities, which have the option to turn away complicated, unprofitable patients. When this happens, the patients are often left with nowhere to go. Many have ended up on the streets.

The CAP program helped Davenport’s family, at first. But the year before Chase’s psychotic break, the CAP worker assigned to care for him forgot to give him his anti-seizure medication. Chase had a seizure while brushing his teeth, fell, and broke his neck. He underwent four painful surgeries on his cervical spine before it healed. Barnhill says the trauma of these surgeries may have been the final insult that spurred Chase’s psychosis.

“Community-based care has failed in this state,” Davenport says. “Untrained, ill-prepared care providers are sent into homes to provide services, and we call that community-based care.”

Barnhill says, “I think community-based care could work. But the system has to be funded appropriately and you have to have enough people to provide the care. That’s one of the big struggles, trying to find enough people who can provide those services in the community.”

The Murdoch Center creates detailed treatment plans for each patient, including tailored drug regimens and rigorous behavioral therapy. Every hour of every day is meticulously planned, and the staff work one-to-one with each patient. Residents on Chase’s unit all live together, and when they’re ready, they start school there, go on outings, assume chores, shop for food, and cook meals. The goal is to teach the residents skills that will help them move toward independent living. And the system works. Little by little, as the staff worked with Chase and Barnhill adjusted his medication, he began to grasp who and where he was. It took time, but he eventually recognized his mom and his sister again.

Today, Chase delivers messages and balloon-o-grams around the Murdoch Center campus. He’s a six-foot-eight twenty-two-year-old who still loves music (new favorites include the Beatles, Pearl Jam, and U2). He visits home and watches movies with his family. His memories of that awful year are only of being jailed in a concentration camp, Davenport says, so they don’t talk about it much.

“We say that people with really severe mental illnesses are irretrievable, that the illness takes them and we can never get them back,” Davenport says. “We may never get the person they were before back, but with the right kinds of services and approaches, it’s astonishing what the individual is able to achieve. Chase has come a long way since he first came to Murdoch.”

Now Davenport is working with state officials to draft policy changes that will help people like Chase. North Carolina’s system is broken, she says. And although Chapel Hill has offered more help for her son than some other regions could, the stigma attached to mental illness is very much alive here.

“I’ve seen my share of letters to the editor of the Chapel Hill News written by people here in town,” Davenport says. “They’re outraged by the homeless people downtown and outraged by the fact that the mentally ill are among them. You can see the way in which people still view those who are sick, as if they’re somehow responsible for their own misery. I don’t know of any other disease where we take the sufferers and throw them out on the street and say, ‘It’s all your fault.’”

Friday says, “When the state made that decision to put people back out on the street some years ago, that was just wrong. And we’re now harvesting that decision. But the important thing now is to move ahead, and Randi’s son proves that it can happen. The state of North Carolina has got to regroup and pay attention to people like Randi Davenport.”

Chase’s story, The Boy Who Loved Tornadoes, is what brought Davenport back to writing, she says. It’s the first thing she’s written in more than ten years.

The first sentence had floated fully formed through her mind for some time: In my dreams, we are whole again. “So I sat down and I wrote it,” she says. “And I thought, ‘Okay, now what happens?’” The result is staggeringly beautiful, sometimes stark, never sentimental or self-pitying. Critics from the Los Angeles Times and Publishers Weekly gave it rave reviews, as have many readers who are parents and have lived through similar nightmares with their own children. The story is told entirely based on Davenport’s memories. “I didn’t keep notes when Chase was in the hospital,” she says. “I didn’t have a journal. I didn’t run around with a little pad of paper in my purse. It was the furthest thing from my mind.”

She intended at first to write a short op-ed piece about mental health care for a local paper, the Independent Weekly. After so many years in “survival mode,” Davenport says, she worried her writing was rusty and she didn’t know if she still had the skill to do it. But instead of writing a few paragraphs, she wrote a hundred pages. Then she cried a lot. The writing was excruciating, she says, and not just because she was reliving terrible memories; she was worried she wouldn’t do Chase’s story justice. After she had six hundred pages, she went to talk to her son.

Communication is still tough for Chase. He can’t always get his thoughts out in words. But she told him what she’d been doing and asked, “Is it okay for me to tell your story? So it’ll help other people?”

“Yes,” Chase said.

“I never planned to write this book,” Davenport says. “I never had any intention of writing a book about my son. But after I began, I felt very much called to do it. I think writers avoid those kinds of calls at their own peril. You don’t want to set aside a story that’s asking you to write it. You have to go where it takes you, no matter how terrifying.”

When The Boy Who Loved Tornadoes first came out in bound galleys, Davenport says, Chase held them in his hands “and he was just radiant.” The hardcover appeared in his Easter basket, and he still carries it around with him. “Above and beyond the diagnoses and the battle and the struggle,” she says, “The Boy Who Loved Tornadoes is a love story. I think it’s a book for anyone who’s ever loved anyone else, and wanted to do the best they could for them.”