Distance grows between them

By BARBARA WALSH, Staff Writer

Copyright © 2002 Blethen Maine Newspapers Inc.

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	Staff photo by John Ewing Susan Walker tries to coax her son, Allan, to talk to her during a walk on the grounds of Bradley Hospital in Providence, R.I. Walker and her husband make weekly trips to see their son from their home in Bath.
	Staff photo by John Ewing Allan Walker enjoys the swing set on the grounds of Bradley Hospital in Providence, R.I., while he visits with his mother, Susan Walker.
	CASTAWAY CHILDREN: Maine's Most Vulnerable Kids Follow this three-part series on the plight of Maine children with mental illness and get more information including where to find help, a glossary of terms and how to voice your opinion, here. To top of story

Susan Walker begins the journey again.

It is a trip that stirs anxiety and guilt, anticipation and hope.

On this warm March morning, she will travel 200 miles to see her son, Allan, a boy who lives in a psychiatric hospital three states away from his home in Bath.

A flurry of emotions swell in Walker's chest as she heads south.

She is eager to see her son, rub his back, caress his brown hair. Yet she worries how he will react to her. Will he be angry and resentful for being left behind? Will he hug her, speak to her or remain mute, staring vacantly at her hopeful face?

It has been a year and a half since an ambulance transported Allan to Bradley Hospital, a Providence, R.I., institution surrounded by acres of woods and trails.

Since that December day, Susan Walker and her husband drive twice each month to the red-brick hospital, where their son receives 24-hour care for his mental retardation and mental illnesses.

The trip has become routine, the monotonous four hours of turnpike travel a necessary journey to keep them linked to their son. Yet the ritual renews an angst.

"We feel so disconnected from him," Walker says. "We go down, and then there's no response or reaction from him. As time goes by, he's becoming more distant. I feel like he's growing further and further away from us."

Saying goodbye to their son is never easy. Sometimes, hospital workers have to restrain Allan when his parents leave the hospital.

"Just after Christmas, he tried to push his way out the door to go home with us," Walker says. "It rips your heart out."

Yet, Walker knows there is no other option.

Her son needs the 24-hour specialty care Bradley offers.

Before he came to Bradley, Allan checked in and out of a half-dozen Maine emergency rooms, intensive care units and psychiatric wards. None of the hospitals was able to treat a youth like Allan, who can be difficult to control and communicate with when he's aggressive.

Allan grew sicker. He stopped talking, eating and nearly died in the emergency room from a severe reaction to his medication.

"He just got worse and worse," Susan Walker says. "Doctors kept medicating him until he turned into a zombie. We were in and out of emergency rooms, and there was nowhere to turn to help him."

The sun glimmers on the Piscataqua River as Susan Walker heads over the bridge connecting Maine to New Hampshire. She passes the historic homes and tugboats hugging the shore of Portsmouth, one of the many familiar scenes on her four-hour journey to see her son.

Walker fidgets with the cap of her bottled water and shares memories of Allan before he became unsteady, angry, violent. Born mentally disabled, Allan was slower than his peers and easily distracted. But he was happy, she says. A boy who never defied his parents. He "talked their ear off," laughed at silly jokes. He hiked and fished with his father, David.

In the fall of 1999, Allan became more moody. He was 15 years old. "He'd cry about anything and just be angry all the time," Walker says. "He started yelling and breaking or throwing things. If there was a book on the table, he'd pick it up and rip it to pieces."

He began pushing his mother into walls. He'd choke her, hit her in the head, scream for her to leave.

One evening, he pinned his mother to the bed, pummeling her repeatedly in the head.

"I saw blue flashes of light," Walker says.

Other times, he pushed his mother to the wall, kicking her, screaming, "I'm going to kill you."

"There were many times I thought this is it. This is going to be my last breath," Walker says.

Over the year, Walker and her husband rushed their son to the emergency room a half-dozen times. Police came to their home, too. Twice, they helped Walker restrain her son and take him to the ER.

But the trips to the hospital did little good. On Oct. 24, state crisis workers called the five psychiatric hospitals and 10 crisis programs in Maine. None had empty beds. The ER doctors sent Allan home with a prescription for Atavan, a powerful drug that helps control anger. The drug made Allan vomit and didn't help calm him.

The next day, Allan was placed in a substance abuse bed at Maine General in Waterville for a week because there were no other options.

There, a psychiatrist who specializes in substance abuse evaluated Allan. He prescribed Risperadol, a powerful drug to control Allan's violent outbursts, and sent him home. Over the next few months, the psychiatrist continued to increase the dosage when Allan had outbursts.

"Every time we'd go back to the psychiatrist he'd increase the medication," Walker says. "Allan became like a zombie. He started developing Parkinson symptoms. He shook and became stiff."

The psychiatrist put Allan on another drug, Cogentin, to counter the side effects, but Allan grew more listless.

"When I told his psychiatrist, Allan's turning into a zombie, he said isn't this the effect we wanted? We don't want him being aggressive, do we?' " Walker says.

Eventually, Allan stopped eating. He lost control of his bladder and bowel. On March 11, 2000, Allan began sticking his fist down his throat like he was trying to rip something out.

"I tried to stop him for three hours," Walker says. "And then I took him to the ER."

When an ER doctor called Allan's psychiatrist, Walker says the psychiatrist advised the ER staff to increase the Cogentin to 6 milligrams.

"The ER doctor said that dosage was very high and unheard of," Walker says. "He suggested taking Allan off all of the medications to get it out of his system."

Walker took her son home and withheld his medications. Allan still kept jamming his fist in his mouth. He stopped eating and talking. Two days later, Walker took her son to the ER. The crisis workers again could not find Allan a psychiatric bed or a crisis program.

After 12 hours in the ER, Walker took her son home, where he continued to get worse.

"It got to the point, he was so lethargic he could barely hold his head off his chest," Walker says. "He wasn't eating or drinking. I was afraid he was going to die of starvation."

Over the next few months, Allan saw a new psychiatrist and a neurologist. Neither knew what to do for Allan. He spent a month in Maine Medical Center's adult psychiatric ward, where he stabilized and slowly began to talk more.

Within four weeks of his discharge from Maine Med, Allan was rushed back to the ER.

"He got out of control again," Walker says. "He ripped the door off and ran around in the rain, breaking windows off cars."

Walker called the sheriff, who took Allan to Midcoast Medical Hospital's ER. There, Allan screamed and pounded walls. The hospital put him in a locked security room for 30 hours while mental health crisis workers called 47 hospitals in New England. "No one would take him," Walker says.

Doctors gave Allan Risperadol to calm him. At 6 a.m., the hospital admitted him to the intensive care unit, where Allan's muscles stiffened. His body temperature and heart rate spiked.

"He was in extreme agony, like he was trying to jump out of his skin," Walker says. ''He was screaming, 'Help me. Help me, Mom.' "

An adult psychiatrist evaluated Allan and discovered he had neuroleptic malignant syndrome, a potentially lethal reaction to medication — in this case, the Risperadol.

"Allan was basically dying," Walker says.

Allan spent a week at the hospital recovering before he was transferred back to Maine Medical Center's adult psychiatric ward.

There, he waited two months while his caseworker tried to find him a psychiatric hospital. While the caseworker searched, Maine mental health workers tried to persuade Walker to take her son home, she says.

Because her son was declared disabled by his illness, Allan became eligible for Medicaid funding, which paid for two-thirds of his treatment. Maine was responsible to cover Allan's remaining treatment, along with his room and board.

When an opening became available at Bradley, Maine mental health workers said they could not send Allan. The cost of treating him there was $1,000 a day.

"It was cheaper for them to ship Allan home with us," Walker says. "They didn't agree to send him to Bradley until I called the governor, my senator's office and threatened to go to media and get a lawyer."

On Dec. 6, 2000, Allan was transferred to Bradley in an ambulance.

On this warm March morning, the red-brick mills of Pawtucket, R.I., loom over the turnpike as Walker pulls a photo from her wallet of her son, Allan, and his two sisters.

Walker stares at the photo of her son and removes her eyeglasses to wipe away tears. The photograph was taken before Allan's mental illnesses emerged. The picture captures Allan in the middle of a laugh.

Staff photo by John Ewing

Susan Walker and her son, Allan, walk back to the entrance of Bradley Hospital near the end of her visit.

"How bad does it have to be before your kid gets help?" Walker asks. "Does he have to try to kill somebody? Does he have to nearly die?

"One of my biggest fears was that if Allan didn't get into Bradley and came home something horrible was going to happen," Walker says. "If he killed me or hurt me, then I knew he'd be sent to the youth center or jail. And I can't imagine Allan there. I just can't imagine it."

Walker falls silent and places her son's photograph back in her wallet. Her voice rises when she speaks again.

"People think if you have a mental illness you have behavior problems and you deserve to be punished," Walker says. "But Allan's brain doesn't work right, and he shouldn't be punished for that."

Walker puts back on her glasses and speaks again in a tone that is barely above a whisper.

"As a mother, when your kid is sick you want to make him better, make it right," Walker says. "When you can't, it just kills you."

Walker eyes Providence's gold dome statehouse, the glass and brick skyscrapers framing the city's skyline, the strip malls, burger joints and gas stations on the city's outskirts that lead to her son's hospital. She straightens in her seat, anxious, nervous about how Allan will react to her today.

When her son first arrived at the Providence hospital, Walker lay awake at night, crying, worrying about Allan. "Is he scared? Confused? Does he think we just brought him there and we're never coming back?"

Last Christmas, Walker and her husband took Allan home for a visit. They were happy to have their son back in their Bath house, but the visit helped them realize they can't care for him without professional help. Allan refused to eat or drink.

Ever since the December trip, Allan has grown more sullen, sad. "Allan really doesn't know what's going on, why he's way down there and why we leave him," Walker says. "He doesn't understand why he can't come home."

On this spring day, Walker is also concerned about a new complication in her son's story: Maine officials say they are not going to pay for Allan's treatment at Bradley.

"I don't know what game they're playing now," Walker says. "Allan's been here a year and a half and they've never said a word about the money."

The 100-year-old white columns of Bradley Hospital come into view, and Walker eagerly grabs her purse.

She parks and glances at a one-story white building, set off to the left of the parking lot. "That's where Allan lives," she says.

Walker heads into the hospital's visitor check-in and is eventually led to an office to meet with Allan's doctors.

They welcome her and greet her with good news. Arthur Mercurio, the hospital's assistant director of developmental disabilities program, says that Maine has backed down and agreed to pay for Allan's treatment.

Their decision came after Mercurio said he reminded Maine mental health officials that they authorized Allan's admission to Bradley.

"Allan is a complex kid with complex psychiatric needs," Mercurio says as he sits next to Walker. "He clearly needs to be here. You can't just treat Allan like a kid with psychiatric illness. He is mentally disabled and his brain works differently. He learns differently."

While at Bradley, Allan receives special education and psychiatric counseling, which teaches Allan to live with his depression and moods that suddenly become intensely happy or sad. Allan takes four different medications to help keep him stable, and he is under constant watch.

"Releasing him to his home is not realistic," says Dr. Margaret Klitzke, Allan's psychiatrist. "Maine has said, 'What about having in-home support for Allan?' But it's not reliable. Allan has bipolar disorder and he's profoundly depressed at times. He depends on staff to eat and go to the bathroom. He has no awareness of danger."

Allan also is highly sensitive to medications, and it takes months to manage and figure out the correct and safe dosage for him, Klitzke says.

"The biggest dilemma is what to do with Allan," Mercurio says. "We want him to eventually be released, but Maine can't sustain the kind of treatment he needs. We have monthly calls with Maine caseworkers on where Allan is going to go. The state has been trying to create programs for kids like Allan, but it's taking a long, long time."

Susan Walker listens to Mercurio and asks: "How many Allans does Maine need before they create programs? I know he can't stay in the hospital forever, but I don't want to end up in a situation where I take him home and have to call the police on him or bring him to the emergency room."

Susan Walker timidly opens the door to Allan's white dorm.

She walks around the corner to find her brown-haired boy sitting at a table eating pizza. A male staff worker sits across from him.

Allan looks up at his mother and laughs. Then he quickly falls quiet. His head drops to his chest.

Susan Walker is cheerful: "Pepperoni pizza, that's your favorite." She rubs his back "How's it going?"

Allan stares blankly at his mom and chews his pizza slowly. He stares at his shoes and does not speak. "Pretty nice down here today, Allan. Just like summertime."

Allan's head drops further down his chest.

"You doing OK?" Walker asks sitting in a chair across from her son.

Allan's head slides further down his chest. Walker rubs his back, kisses him on the cheek. He is dressed neatly in gray pants and a gray sweatshirt.

"Allan, you want to go outside, buddy?" Allan stares at his sneakers. "Allan, C'mon. What's the matter, buddy? Can't you get up?

She pulls his hand and he jerks it away. "You tired? You don't feel good?"

Eventually, Walker persuades her son to go for a walk. A hospital staff worker washes Allan's face and then unlocks the dorm door.

Outside, Allan shuffles along slowly, his arms hanging loosely at his sides. His mother walks by his side as they circle a path that wends around the back of the hospital. His mother asks him questions. He is silent.

They stop and sit on a bench together in the shade of fir trees. Allan sits with his chin in hand, listening to the laughter and voices of children in a nearby gated playground. They sing: "Who wants ice cream? Who wants ice cream?" Their voices draw Allan's attention, his brown eyes mesmerized by the dreamy lilt of the unseen children.

His mother rubs his back and leans toward him, dropping her head to his. "I love you, you know." Allan offers no reaction. "Are you sad today?

Walker gets up and kneels in front of her son, nudging her face against his face. "C'mon, you coming for another walk? Allan rocks back and forth, his forehead buried in his hand. "C'mon, buddy. C'mon, Allan. You want to walk with Mommy?"

Susan is quiet, too, then she teases her son: "I'm stuck like this now. How am I going to get up? The things I do for you."

Allan smiles, snickers, and soon his shoulders are shaking with laughter.

"C'mon if I can get up you can get up," his mother says, smiling. He gets up and continues to laugh as he walks with his mother. Walker smiles, too.

They walk to a swing set, where Allan and his mother swing side by side. Allan laughs loudly. "You want me to push you?" He smiles. "Oops," he says, covering his mouth.

Later, they walk back to his dorm; he holds his mothers hand, and again: "Oops."

A lime-green Kermit the Frog sits on his bed in the small room. A card on his bulletin board reads: "I believe in amazing grace and miracles. Things happen where we least expect them."

In the dorm lounge, Allan and his mother sit on a couch. A 100-piece puzzle covers the scuffed wooden table before them. Allan holds his mother's hand.

"Can I get a kiss?" she asks, patting his hand. He kisses her hand and giggles: "Oops."

She smiles, too. "What other words do you like?

He stares out the window. "Allan, what are you looking at?" He says nothing. She tickles him in the ribs. He continues to stare out into the parking lot.

"Hey, wake up," she tells him. He laughs loudly.

She puts the puzzle pieces back in the box. "So much for the puzzle," she says.

"Well, buddy, mom's going to have to get going."

His brown eyes stare at her face. The laughter and his smile disappear. His lips press together tightly. The two of them walk to the door. "I'll see you in a week," she tells him. He pats her back. "Do I get a hug?"

He holds her hand and wiggles his fingers. As the two of them walk outside, he places his hand on his mother's shoulder and laughs.

Once inside the main hospital, Allan glances at his mother one last time before walking away with his social worker.

Susan Walker is quiet. Her eyes follow her child as he disappears down the butter-colored hallway.

When she speaks, her eyes are focused on an empty hall.

"I wish I could communicate with him better," she says. "I wish he understood why we can't bring him home."

Walker falls silent again and walks slowly down the hospital steps, the two glass doors closing behind her.

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