December 7, 2009

The Story of Trudy Steuernagel and Her Death at the Hand of Her Son Sky Walker, Who Loved Her

Many thanks to Joanna Conners for her thoughtful and heart wrenching telling of the Sky Walker story. She has answered many pressing questions that our community had about the death of his mother Trudy Steuernagel at his hand and what has happened to him since.

At hearing bits and pieces about his treatment, we have been angry at what seemed to be callous treatment at the hands of authorities, but seems that they were doing the best they could given the circumstances and the limited options for children like Sky. It highlights the question, if a proper placement for Sky, which was the daily priority of the police department for the two months he was with them, could not be found, with all the resources at their disposal, what choices do families with children like Sky have now?

And what will it look like when the Autism Tsunami hits? Sky was born in 1990, a year or so before the swell began.

From the descriptions of his food obsessions and Sky's diet, MacDonalds and ice cream every night, goldfish crackers to sooth his aggression, it is clear that he was not on any biomed protocol, and probably needed to be. (Chandler's one and only aggressive outburst was when he was 2 and we had put him back on gluten for a month to see if he could handle it... no dice. He viciously bit another child. None what so ever in the five years since then.) When doctors like the much derided Max Wiznitzer, who was interviewed in this article, poo poo dietary intervention for lack of large epidemiological studies as proof of efficacy, does he even realize that he is likely channeling children into a life of violence and disconnection from the world like Sky Walker? Does his ego even let him entertain the idea that reams of documentation on GI disorders in children with autistic symptoms and clinical examples of behavioral improvements on dietary intervention might make it a really, really bad idea to feed crap to violent children like Sky? Doesn't seem to be the case.

I am reposting the article in its entirety, to ensure that it does not drop off the web. This is an article that every one of us needs to read. It is a very hard read, and I had to take several cry breaks to get through it, so be forewarned. But read it.

And if anyone ever, ever says to me that I need to look at autism as a blessing, or focus on the bright side, or that medical treatment for some strange reason means I don't accept or love my child for who he is, I will simply refer them to this post.

For Ashley Brock, Elias Tembennis, Sky Walker and his loving and dedicated mother, Trudy Steuernagel, autism was a deadly disease. And now as well for James Delorey. Sky clearly loved his mother, and still does, yet his love still could not stop him from killing her.

And distressingly, Trudy saw her own murder likely coming, and wrote to defend her son in case it happened.

Kent State professor Trudy Steuernagel's fierce protection of her autistic son, Sky Walker, costs her life: Sheltering Sky
By Joanna Connors, The Plain Dealer
December 06, 2009, 8:42AM

"To Whom it May Concern: If this letter has been opened and is being read, it is because I have been seriously injured or killed by my son, Sky Walker."

No one knows for sure when Trudy Steuernagel wrote that letter.

She read it to her ex-husband, Scott Walker, in the spring of 2008, when their autistic son, Sky, had grown so violent she sometimes had to barricade herself in a closet.

By then, Trudy's life had begun to feel a lot like that closet. Small. Dark. Isolated. Her ex-husband was gone, living in Wisconsin with his new wife and stepson. Many of her friends were gone, too, lost to the demands she faced caring for Sky.

Sky remained. But in a way, Sky was gone, too. Over the years, he had slipped away from her, retreating into the shadows of autism. The smart little boy who stole hearts with his smiles and hugs had disappeared. Left behind was a 200-pound teenager who overwhelmed her with his constant needs and his unpredictable, terrible anger.

Trudy spent her days teaching political science at Kent State University, where she was a popular professor. She went home to Sky and long evenings of his ever more rigid routines, girding herself for his next meltdown, and hoping the next medication would bring Sky back.

That spring, as Sky's violence increased, Trudy told Scott she had locked the letter in her home safe, in case the worst happened. Less than a year later, it did.

On Jan. 29, 2009, sheriff's deputies found Trudy on the floor of her kitchen, unconscious and struggling to breathe. They found Sky in the basement, blood on his pajamas and feet.

The next day, Trudy's brother, Bill Steuernagel, found the safe in Trudy's closet. The letter, a single folded page, loose in the pile of papers inside, would have been easy to overlook. Trudy's words were not. Shot through with sorrow and regret, they bore witness to her fierce love for her child.

Trudy Steuernagel died eight days after the beating, at age 60.

Sky, legally an adult at 18 but functionally a child, was charged with her murder and held at Portage County Jail while lawyers, social service agencies and the court tried to figure out what to do with him.

As the months went on, the story of the profoundly disabled son who unintentionally killed his mother unfolded like a Greek tragedy. Sky's life and Trudy's death exposed some of the darkest mysteries of autism - from the puzzle of why a smart, capable woman sacrificed her own safety to keep her son at home to the larger legal and social issues presented by the perplexing, often hidden strain of violence in a neurological disorder that, more than 60 years after it was first described, continues to confound scientists.

"The nursery is finally finished. Today, Nov. 9, 1990, was supposed to be your birthday. Where are you, Sky Abbott Walker? About your name. We both wanted a gender neutral name. Pater loves all things to do with flying and I like nature names. I hope you like it, Sky." - Trudy Steuernagel, in Sky Walker's Baby Book

Sky Abbott Walker was born Nov. 15, 1990. Trudy was 42 and smitten. She had been married just a year to Scott Walker, a former student of hers who was nine years younger.

Scott remembers Trudy showing off her smiling, blue-eyed boy, who flirted with strangers and hit developmental marks ahead of the curve. He walked at 9 months, and at 10 months he spoke individual words, knew the alphabet and could read letters. Before his first birthday, he learned numbers and could add, subtract and count. But then he stopped. At 18 months, he still did not put two words together, and by 24 months, he had stopped acquiring new words. When a doctor told Trudy and Scott that their son might have autism, they disagreed. Didn't autism mean a lack of emotion and a resistance to touching? That was not Sky.

"He loved to hug not only his mom and me but his toddler friends and teachers," Scott Walker remembers. "So we said, 'There's no failure to form attachments, he's doing well.'"

By the time he was 3, they stopped fighting the diagnosis. Sky was still not speaking in phrases or sentences, and he was losing words at a steady pace. His early strides with reading letters and numbers turned out to be hyperlexia -- a red flag for autism.

"Except for the speech delay, you would never have suspected he had autism," Scott says. "It was easier to explain his poor performance on tests by saying he was autistic. We felt he was clearly intelligent. He just had no interest in demonstrating for adults what he knew or could do."

If Trudy grieved or felt frightened for Sky, she did not show it. The Internet was still primitive at the time, but she joined autism mailing lists and searched for resources and services.

She also became more protective. After the diagnosis, Scott noticed that Trudy turned inward with Sky; where she once carried him facing out to the wide world, she now held him facing her heart.

Scott and Trudy enrolled him in Kent's special-needs preschool when he turned 4. At the end of that year, his teacher reported that he showed many of the signs of autism: His play was solitary, his speech delayed, and he avoided eye contact. She also noted that he had a problem with aggression but was learning to handle his frustration. Trudy and Scott worried anew. Was aggression another symptom of autism? Or was it just a symptom of childhood? Why was the sweet boy who once hugged everyone now hitting?

Frustration and aggression

Information on rates of aggressive behavior in people with autism is scarce and inconclusive. A roundup of autism research published last month in the British medical journal The Lancet cited a 2008 study that found "disruptive, irritable or aggressive behavior" in 8 percent to 32 percent of children with autism. It did not explain the wide statistical spread, nor did it offer comparison figures for children without autism.

Doctors and teachers in Cleveland who deal with autism begin discussions of aggression with a caveat: Autism does not automatically lead to aggression. No one wants autistic people to suffer the sort of horror-movie stigma that has plagued the mentally ill for so long. But they do not deny the aggressive tendency exists.

"Aggression has always been part of autism," said Leslie Sinclair, the head of the Cleveland Clinic's Lerner School for Autism. "Not in all [autistic] children, of course."

Dr. Max Wiznitzer, a pediatric neurologist and director of the Rainbow Autism Center at University Hospitals, says there are many reasons for the aggression.

"They might also have anxiety disorders, attention deficit hyperactive disorder, mood disorders, cognitive impairment," he says.

Sinclair and others return inexorably to the frustrations that emerge not just from the struggle to speak, but also from overwhelming sensory stimulation and the need to adhere to set rituals and routines. For some children with autism, even a tiny deviation can lead to a violent episode.

"It is never malicious," she says.

Scott Walker tells this story about Sky to describe his frustrations. He was 5 or 6 and playing alone, in another room, when Trudy and Scott heard a big bang, like something had fallen or broken. They found Sky sobbing uncontrollably.

"What happened, Sky?" They asked. "What's wrong?"

Sky sobbed and heaved, struggling to speak. Finally he managed to say:

"I. Don't. Have. Words."

They never did figure out what had made the noise.

Behavior becomes disruptive

As Sky made his way through the elementary years, Trudy and Scott battled the Kent public school system to get the services he needed and to keep him in mainstream classes, where they felt he did better academically and socially. But to remain there, he required a full-time aide.

"It was adversarial," Scott says. "They were professionals. But they were also fully cognizant that we were asking them to dig deep in their budget for our son. There was always a sense of, 'Gosh, what if there were 10 other autistic kids wanting these services, too?'"

Soon enough there were, and more. In 1994-95, just after Sky was diagnosed, Ohio reported fewer than 100 cases of autism out of almost 1.8 million students. Last year, Ohio reported 12,640 cases out of 1.9 million students.

The Kent City Schools superintendent, Joseph Giancola, declined to talk about Sky, citing confidentiality laws. But voluminous school records in the Portage County prosecutor's files include positive reports from elementary school, when he spent part of the day mainstreamed with an aide.
Around the Web

Centers for Disease Control and Prevention National Center on Birth Defects and Developmental Disabilities

Autism Society of America,

Autism Society of Ohio,

Cure Autism Now,

National Institute of Child Health & Human Development

Cleveland Clinic Center for Autism,

University Hospitals Autism Center,

In first grade, his teachers wrote: "Sky is very sweet and has a nice sense of humor." In third grade, his special-education teachers wrote: "What a joy it has been to be Sky's teachers for 3 wonderful years!"

As he grew older, and his life at home changed, behavior problems entered the picture.

A move from mainstream

Trudy and Scott separated when Sky was 9. Scott did not want to talk about the reasons for the separation, but he did say Sky was not one of them. "I'm sure our disagreements over him were an added stress, though," he says.

That year, Scott moved to Cleveland to start medical school at Case Western Reserve University. He says he saw Sky three times a week, at home in Kent and when Trudy brought him to Cleveland.

He knew Sky missed him. "To the extent that Sky could choose things to talk about, what he would talk about was the next time he would see me," Scott says.

When Sky was 10, a teacher's assessment found him "severely autistic." He avoided eye contact, followed ritualistic patterns, spoke in stressful situations with meaningless one- or two-word phrases ("tater tots," "top grunge"), splayed his hands close to his face and rocked with exaggerated rhythms.

He also angered easily. "When forced to look or interact, [he] may become agitated, cry or have a temper tantrum," the teacher wrote. "Reaction to pain such as a fall or bump of elbow is extreme anger. Reaction to change [in routine] can be extreme with excessive tantrums."

Sky had tantrums with his parents, too. "They were very few in number, but they were very disruptive and certainly caught our attention," Scott says. "Because he was smaller, we weren't afraid of escalation. We used some physical restraint until we were at a safe place."

Puberty often brings a spike in aggression, particularly with boys, who account for three out of four autism diagnoses. Sky was no different. At the beginning of seventh grade, when he was 13, the school removed him from mainstream classes.

"Sky has continued to make progress in the academic realm," his teacher reported, "but has started to have difficulty with appropriate school behavior."

In October of 2003, his aggression became such a problem that the school decided to send him home two hours early every day. Trudy went on part-time leave from KSU; Sky did not return to school full time until the middle of April.

That school year, Irene Barnett, one of Trudy's closest friends, found out that Sky was hurting his mother.

"Trudy forbade me to say anything," Barnett says. "I knew that if I had not respected her wishes, that would have been the end of our friendship. Her loyalty was 100 percent to Sky."

Trudy told Barnett that Sky was getting good medical care and his doctor was trying new psychoactive medications. Using medication to control aggression in autistic patients is a common practice, says Sinclair of the Cleveland Clinic's autism school.

"Some of our kids can be very obsessive compulsive, which is evidenced in rigid adherence to routines," she says. "And [if] you interrupt that, they can become aggressive. If we can target that behavior with a particular medication that takes the edge off the need to fulfill these routines, then aggression comes down."

Health privacy laws prevent authorities from saying which drugs were ordered for Sky, but photographs in the sheriff's investigative files show medicine cabinets and kitchen shelves in the home laden with bottles of prescription antidepressants, anti-anxiety drugs and tranquilizers.

"Trudy believed that eventually they would get the right cocktail, and his hormones would stop surging, and it would take care of the aggression," Barnett says. "She did not want him in any institution. She said there was a lot of abuse in institutions, and because Sky was not verbal he could be easily victimized."

At about this time, Scott remembers, he began urging Trudy to consider a residential placement. "That was a real conversation stopper," he says.

Experience led to apprehension

Bill Steuernagel thinks Trudy formed her negative view of institutions working at Ebensburg State School and Hospital in Pennsylvania, an institution for children then diagnosed as "hyperactive mentally retarded [and] trainable." Their father, William Steuernagel, was an administrator, and all three of his children - Marybeth, Trudy and Bill - had summer jobs there as teenagers in the 1960s.

"We took care of the patients, took them out for walks, to the pool," says Bill. "A lot of them were drugged. They were considered mentally retarded, but I'm sure some of those kids were autistic."

Autism was first recognized as a distinct disorder in 1943, but it took decades to emerge as a standard diagnosis. It did not enter the Diagnostic and Statistical Manual of Mental Disorders, the standard for psychiatric diagnosis in America, until 1980.

"Back then, if you had a child and you couldn't take care of him, you'd put him in a state home," Bill says, referring to the 1960s and Ebensburg. "My sister cringed at that."
Disney.jpgTrudy Steuernagel wrote about her life with her autistic son, Sky Walker, in several essays and letters. The audio excerpts here were narrated by Plain Dealer Features Editor Debbie Van Tassell.



The truth comes out

In 2004, Scott Walker moved to a small town in Wisconsin for his residency in family medicine. Sky was 14. Two years later, Scott and Trudy divorced.

They maintained joint custody; Sky spent five weeks every summer with Scott and visited some weekends. The rest of the year, Trudy was alone with Sky.

"Trudy was now a single parent of a child with significant needs," Barnett says. "But she was not a complainer. She always used to say, 'You know, you deal with it.'"

Trudy dealt with it by complying with Sky's elaborate system of rituals, which ruled their days from the time she woke up until Sky went to bed. Trudy usually slept for about four hours, then got up to exercise. Sky woke, took the sheets and blankets off both their beds, piled them on the floor, and crawled in to sleep.

He always dressed in the same outfit: blue T-shirt, dark blue shorts, sneakers. Trudy ordered them in multiples from Lands' End. The outfit made him look like a 6-year-old with a man's body, a visual metaphor for the childish tantrums that turned dangerous when he grew to over 6 feet tall and 200 pounds.

He loved children's food, too. After school, they always drove 20 miles to the same McDonald's, where Sky ordered a Happy Meal of Chicken McNuggets and fries, followed by a vanilla ice cream cone. Then they crossed the street to Arby's where he ate another meal of chicken and fries. When they got home, he watched "The Price Is Right" over and over again.

Every night, he tore paper into confetti and scattered it around the house. Before he went to bed, he got his medicine and an M&M ice cream cone.

He said certain phrases when he felt agitated, like "Ride the roller coaster" and "Wheels on the bus." Trudy responded by sending him to his safe room in the basement, a small room crammed with unused games, a foosball table and Trudy's exercise bike and mini-trampoline. In the middle of the clutter, Sky would lie on his mattress and calm himself with his comfort foods, barbecue potato chips and Goldfish crackers.

If Trudy caught the signs too late and the agitation escalated, she calmed him with a warm bath and his favorite snack food. When the calming rituals did not work, Sky lost control and sometimes attacked her.

Barnett thinks she was one of the few people who knew just how bad Sky's aggression was. Trudy's friends did not know each other well, and she parceled out her disclosures. A few friends and family members saw the bruises and black eyes, but Trudy always had an explanation. "I hit my head swimming," she told Bill once.

In the spring of 2008, though, Sky's attacks grew much worse, and Trudy decided to reveal - in part - what was going on. She surprised everyone with the way she did it: In a public essay for the student newspaper, The Kent Stater.

In "Just a Conversation," published March 27, 2008, she wrote: "Life with Sky these past few years has been very isolating for the two of us. We can't go out and do the things we used to like to do because Sky gets so overwhelmed. Much of the time, we're here in the house. ... My life was dominated by trying to teach my classes, trying to run a household, trying to fit everything into the few hours he was at school. On bad days, those few hours could turn into a few minutes. I couldn't be a friend to anyone because I physically and emotionally could not be there for them. I had no patience with good and decent colleagues who told me how busy they were. Busy? Try spending an evening sitting in a closet with your back to the door, trying to hold it shut while your child kicks it in."

Her colleagues were stunned. "We had no idea," said Steve Hook, the department chair.

Molly Merriman, a KSU faculty member, tried to convince Trudy she was living with domestic violence, one of Merriman's academic interests. But Trudy still believed Sky would change.

Later that spring of 2008, Sky went into a steep spiral. He had been in special-education classes for five years, and at 16 had begun community work-experience classes, mostly doing custodial work. He especially liked sweeping.

Even with that outlet, his tantrums and violent episodes became more frequent and intense. Records show teachers and aides had to apply physical restraint seven times in April and May, and called Trudy to take Sky home. They requested that she never travel more than 20 minutes away when he was at school.

On May 2, 2008, Sky's violence was bad enough for the school to call the police and EMS. At one point, a Kent police officer reached for his Taser. Sky's aide and Trudy both rushed to stop him. Later, the officer saw Sky hit Trudy in the head from the back seat of her car.

"She was reluctant to admit there are outbursts at home in which she is assaulted, but made reference to a 'safe room' she has in their home," he reported.

The school called Trudy for meeting to discuss an intervention plan. Afterward, she wrote a two-page letter that praised Sky's teacher but objected to much of what the school administrators said. "On many occasions the school's solution when Sky was in meltdown was to call me to transport him home," she wrote. "I have always responded and done so, even while making the argument that this was reinforcing Sky's behavior and getting him what he wanted."

To go home with Momma.

Mother rejects hospitalization

Every summer, when Sky's school was out, Scott took Sky for five weeks while Trudy taught. Their visits always started with a week at Disney World, Sky's favorite place.

In June 2008, Scott took his new wife and his stepson along. Despite this disruption of his routine, Sky did well, Scott says. He liked his stepbrother, who was 10, and enjoyed the long days at the park and long nights at the fireworks. He had no episodes the whole week. Until the final night.

Sky did not want to leave the next morning and became enraged. Scott sent his wife and son from the room to call hotel security. Sky started breaking furniture and mirrors, and then turned on Scott. "It was the first time I got beat up by him," Scott says. "We were all scared."

They ended up at an emergency room, where a dose of the sedative Ativan subdued Sky. The next morning, armed with more Ativan, Scott got on a plane with his son and brought him to University Hospitals' autism unit. He asked them to find a residential placement for Sky. They came up with a facility in the Cleveland area, Scott says, where they had experience dealing with autistic adults with aggression.

"But his mother did not hold the same view as I did," Scott says. "She came and took him out of the hospital, and it didn't happen. She was angry, but that was nothing new."

Scott went back to Wisconsin without Sky. Trudy's brother, Bill, drove up from his home in North Carolina to help with Sky for the remaining three weeks of Scott's custody.

Fear and denial

Sky's senior year started with seven official reports of aggressive episodes and use of physical restraints and police calls. His food obsession, a common factor in autism, had gone out of control.

Trudy told Barnett that she hid food from Sky in the garage. On Thanksgiving Day, Bill heard fear in Trudy's voice for the first time. She told him she had to hide in a closet from Sky, which was news to Bill. He asked her if she was fearful. "I can handle it,"
she said.

But when Christmas approached, Bill sensed she needed help and came to visit. He took Sky to the movies a couple of times and to see the fountain at Tower City. Sky was in great spirits - until Christmas Day.

Trudy gave him an iPod and a digital camera. Bill gave him "The Price Is Right" game for his Wii. It was all too much stimulation and change from his daily routine. "Throughout the day, he had some meltdowns," Bill says.

After dinner, even though it felt awkward to bring it up and Trudy might get angry, Bill again asked about the violence. "Are you safe?" he asked.

"Yes, it's fine," she said, and changed the subject.
sheriffjail.jpgLisa DeJong, The Plain DealerPortage County Sheriff David Doak did not think Sky Walker would be safe with the general population in the county jail, so he kept the autistic teenager in this booking cell for the two months he was incarcerated. He brought in a TV so Sky could watch The Price Is Right, and allowed his family to visit him in the booking area.

A son's disability, a mother's death

Trudy did not make it through the first month of the new year.

On Jan. 29, 2009, just before noon, a KSU administrator called the sheriff's office to report that Trudy did not show up for work. It was the first time in 33 years that she had missed a class without calling. That morning, she missed two. She did not answer her phone.

A dispatcher sent three deputies to Trudy's house in Kent. Inside, they found her on the kitchen floor, her face battered and covered with dried blood, her eyes swollen shut. Her head rested in fresh blood. Blood tracks led from her body toward the basement, where they found Sky huddled on a mattress.

As deputies handcuffed Sky, he screamed and thrashed so hard they had to subdue him with pepper spray. Minutes later, he reared back and kicked a deputy in the head, hard. The other deputies pushed him to the floor and bound his ankles and wrists together behind his back.

"Boo-boo," he said, when a detective asked him what happened to his mother. "Band-Aid." "Tummy hurt." Then he sprayed the detective with spit.

Emergency workers took Trudy, still unconscious, to Akron City Hospital. She had massive trauma to her head, broken ribs, a collapsed lung, a damaged eye socket, and bite marks on her face, arms and upper legs.

The deputies took Sky to Portage County Jail, where they locked him in a suicide-watch cell. They wrestled him into orange prisoner's clothes; he tore them off. They tried again; he tore them off again. They gave him a blanket. Sitting in his cell naked, with the blanket around his shoulders like a superhero cape, Sky screamed, a high-pitched wail that sounded like keening grief.

"Hurt Momma," he said. "Sad."

David Doak had been sheriff for less than a month when Sky landed in his jail. That evening, when Sky had calmed down, Doak went to see him. He was asking Sky questions through the food slot when Sky suddenly reached through the small opening, grabbed Doak's trousers and pulled.

"He put me off balance, almost off my feet," Doak says. "I mean, he was big, and he was really strong. When his adrenaline is running, he's a pretty tough guy."

Doak, a man with the laid-back demeanor of a pilot flying through turbulence, had never dealt with a prisoner like Sky before. He'd seen plenty of wild people during his career in law enforcement, people on alcohol and drugs - or, far worse, and increasingly common in police work, mentally ill people who had gone off the medications that kept them stable.

But Sky was different. Doak didn't know much about autism, but he could see that Sky Walker would be a high-maintenance prisoner. He hoped Sky would not be in the Portage County jail very long.

That afternoon Doak's deputies contacted Trudy's family, who drove to Ohio right away. It took longer to find a number for Scott Walker in Wisconsin. They reached him that night.

"I was horrified," Scott says. He couldn't believe Sky was being held in a jail cell. "Of course, my response was to try to find some way to get him alternatively placed pending arrangements for trial."

Scott and Trudy's family had not spoken after the couple divorced, though they had been on good terms when Sky was a child. After the deputy called, Scott exchanged text messages with Trudy's niece, but says he did not speak with any of the family or feel welcome to come to Ohio. He did not visit Sky during the two months he was in the county jail.

"The reason I didn't come out is, one, there was nothing I could do, and I wasn't even going to be allowed to see Sky at that point," he says. "Trudy was in intensive care, and there were a number of her friends and colleagues there with her. And I had responsibilities here."

Attention on a dark secret

Trudy Steuernagel died without regaining consciousness. Her Feb. 13 memorial service at KSU drew hundreds of mourners.

Thousands more read of the tragedy on autism Web sites and blogs, in newspapers and in the pages of People magazine. Trudy's death focused national attention on what her brother, Bill Steuernagel, calls the dark secret of autism: the violence that sometimes emerges with puberty, especially in boys.

Bill wondered why he had not heard much about aggression in autism before Trudy's death. Then he decided the autism community feared stigmatizing the disorder. In some ways, he understood.

But good intentions can have unintended consequences, and in this case the public silence had a tragic one: Many parents who endure violent outbursts from their autistic children feel very much alone.

Trudy's death spurred some to break their silence. Ann Bauer, known for her writing on autism, described the horrific violence her once-sweet son unleashed on her and others in an online essay titled "The Monster Inside My Son." On news Web sites, including The Plain Dealer's, stories about Sky and Trudy brought responses from parents who said they feared the same thing could happen to them.

"My son is 22 and has autism, mental retardation and is non-verbal," wrote one mother. "He has gotten quite violent with me in the past, severely and repeatedly slamming my head into the floor or head butting me until I was able to escape. I have been lucky and I know it. He doesn't mean to hurt me and he attacks without warnings. I am currently looking into residential placement for my son, but it is a heart-wrenching decision."

A case of murder

Two weeks after Trudy died, a Portage County grand jury indicted Sky on two counts of murder. Trudy's family hired Ravenna attorney Errol Can and also brought in Gian De Caris and Mark Stanton, Cleveland defense lawyers who specialize in mental health cases.

De Caris had never had an autistic client and wasn't sure what to expect. "After five minutes, it was clear that he was on the severe end of the spectrum and had no idea what was going on," De Caris says.

The prosecutor's office also recognized this, but an unnatural death had occurred and the law required certain steps.

First, a psychologist had to evaluate Sky to determine competency. Could he understand his legal situation and assist his lawyers in his own defense? His first court appearance, via video from the jail, offered a preliminary answer. Sky, upset by the unfamiliar proceeding, started flailing and spitting, until deputies strapped him into a restraint chair and put a spit mask over his head.

The photo in the next day's local newspaper made Sky look like Hannibal Lecter in "The Silence of the Lambs." It brought a new wave of national media and Internet attention. On autism Web sites, writers repeated the same outraged questions. Why did a low-functioning autistic boy have to go through the legal process when he clearly had no idea what he had done? And why was Sheriff Doak holding him in a jail cell?

Doak had the same concerns, but there was nowhere else for Sky to go at that point. "We knew he didn't belong in a jail cell more than anybody," he says.

For the two months Sky remained in the jail, Doak kept him in a cell in the booking area because he didn't think Sky would be safe with the general population. "They wouldn't be too happy with the screaming and spitting," Doak says. "Sky wasn't a bad kid. I liked him. But he was a handful."

Sky's cell was the size of a small office cubicle, with half the space taken up by a toilet. To help keep him calm, Doak and his staff bent many rules. They allowed family to visit Sky outside the normal visitation area and times. They let Sky wear his usual outfit of blue shorts and T-shirts, and parked a TV outside his cell so he could watch DVDs of "The Price Is Right."

They put him on a tight routine to help him feel secure, and used picture cards to show him his schedule. When he grew agitated, they calmed him with barbecue chips and Ativan. They continued his other prescribed medications.

Doak and his staff worked with Bill Steuernagel, who took on the parental role in Scott's absence. Bill brought Sky McDonald's chicken and fries almost every day, and gave the sheriff two lists Trudy had written to explain Sky's rote phrases. She called it "Sky-speak."

"If Sky says the following," she wrote, "it means he is unhappy: Dairy Queen; Ride the Roller Coaster; 'Dr. Seuss's ABC'; DVD on, 'Cat in the Hat' on."

A second list meant he was happy: "Trolley school bus; Short neck giraffe; Sixteen J's; Four whammies, Eric."

At the bottom of the list, Bill added: "If he is unhappy, avoid eye contact and speaking to him. If communication is necessary, speak softly."

The corrections officers in the booking area began to develop a relationship with Sky. Sometimes, though, their precautions failed. The prosecutor's investigative file contains several reports detailing Sky's outbursts. "Sky would try at times to kick or strike officers while taking a shower," one reads. "Sky verbalized, 'No guts, no glory,' [and] spit a few times while [the] officer protected himself with a riot shield. Sky kept yelling and kicking."

Once, he attacked Bill when he took him to the shower and missed several signals that Sky was agitated. "It was the first time I had seen the violence," Bill says. "I thought about my sister, going through that."

Like Bill, Doak and the staff knew Sky didn't mean to hurt anyone. "I have no tolerance and no sympathy for people who murder," Doak says. "But there was no intent there."

Every morning, Doak went into work praying that someone had found a better place for Sky.
v "Everybody searched," says De Caris, Sky's lawyer. "The prosecutor's office, the county MRDD board. I used my local contacts, I did Internet searches, I called directors of facilities."

The search kept turning up empty. Because of the severity of the crime, they needed to find a locked unit in a facility for the developmentally disabled. "There were different places they would find, and it would look good, and then it would turn out they didn't have a lockdown. We're talking two or three beds in the entire state," Doak says.

Finally they found Northwest Ohio Developmental Center in Toledo, one of 10 facilities run by the state. On April 1, the Portage County Board of Developmental Disabilities sent a bus to the jail. The jail staff stood outside to say goodbye to Sky, some with tears in their eyes. Sky, giddy to be outside and going on a trip, rode happily with his Uncle Bill all the way to Toledo.

Finding a place for all the Skys

The two-month search for a place for Sky mirrored what many parents nationwide face as their severely autistic children become adults. Federally mandated educational services covered by public funding end at age 22.

"All of a sudden, the kids are growing up and the parents are saying, 'Now what do we do?'" says Rainbow Autism Center's Wiznitzer.

"Because autism is a spectrum, there's going to need to be a wide range of options for adult living," says Susan Ratner, assistant director for special projects at Bellefaire JCB in Shaker Heights, which is in the early stages of developing a small adult-residential facility.

When the Bellefaire staff looked for models around the country, however, they could not find many. "What has clearly come out is that there are big gaps in adult services," Ratner says.

The search process is even more complex and sensitive when violence is involved.

In 2001, the Autism Society of America sounded the alarm on what it called a national crisis: a critical shortage of services and facilities for adults with autism. In 2007, when not much had changed, it updated its call for action. Parts of the ASA's report read like an account of Trudy and Sky's lives.

"In a behavioral, out-of-control crisis, individuals with autism can be scary," it says. "Parents are desperate. Aging caretakers (often single mothers, often living alone with their middle-aged child), knowing how difficult it is to adequately care for an adult with autism, are often prisoners in their own homes."

De Caris came to the same conclusion. "This is more common than I ever imagined," he says. "The facilities are just not out there - not at the level that's going to be needed. What's going to happen to all these children as they get older, and their parents who are their primary caregivers disappear? Even at facilities that do exist, the cost is outrageous. If you're making a typical salary, how do you afford that?"

Trudy had known she could not care for Sky forever. She had planned to keep him in school as a full-time student as long as she could, so that her health insurance would cover him. But she wanted to retire within a few years and started to look for a place for Sky. It became clear how difficult that would be.

The only facility Trudy liked was a private one in Charlottesville, Va., near her sister and nieces. It charged an entry fee of almost $58,000, in addition to about $3,000 a month. That was one problem, but another was bigger, she told Bill: Sky's anger had to be under control before they would take him.

In the meantime, Trudy had also been planning for Sky's life beyond school. A caseworker with the Portage County Board of Developmental Disabilities had told her Sky could do well at their sheltered workshop, Portage Industries, perhaps doing the custodial work he enjoyed. They planned to ease Sky into it with a slow, three-year transition from school.

Trudy did not ask for help with finding Sky a residential placement, however.

The caseworker, George Paroz, says Medicaid and the county offer financial assistance for both in-home help and residential placement. These programs have waiting lists, some of them long, but if safety becomes an issue, families are moved to the top for an emergency placement.

"If she had said, 'He can't live here anymore, he's a danger to me,' that would have been an emergency placement," Paroz says. "And if it needs to be done, it gets done, and we find the money."

But Trudy had never said it. "Trudy was of the belief that she could handle him best," Paroz says.

The judge decides

Two psychologists reported to the court that Sky was not competent to stand trial and would never be restored to that level of competence. Both confirmed that Sky was autistic, and added a new diagnosis, that he was mentally retarded.

"Trudy would never have accepted that Sky was retarded," Bill says. "Eighty percent of the time, when he's in a good mood, the kid is very smart."

On Sept. 14, after listening to evidence that included a DNA match of Trudy's blood to the blood found on Sky's feet, Portage County Common Pleas Judge John Enlow ruled that Sky murdered his mother.

But, since Sky was not competent for trial, Enlow dismissed the charges and ordered him to remain at the Northwest Ohio Developmental Center. The commitment was, in essence, a life sentence, because it is unlikely the court will ever release him.

Medicaid pays $460 a day to shelter him at Northwest, a campus with spacious lawns, outdoor play equipment and nine cottages that can accommodate 162 residents. Sky occupies the one locked facility, sometimes sharing it with other residents. He has two aides on duty at all times. He continues to have violent episodes.

He also has occasional visitors. His father says he has visited several times. His cousins and aunt have been to see him. His uncle, Bill, has visited several times, bringing him his favorite McDonald's foods. When the judge allowed Sky outside the cottage, Bill began taking him for walks in the gym on campus.

The visits do n't last long. Bill usually watches Sky play his "Price Is Right" game. "He'll acknowledge you, he might like the chicken and fries," Bill says. "But there really is no communication."

Sometimes, Bill wonders if Sky knows what happened to his mom, or understands why she is no longer part of his life. The aides tell Bill that Sky has said, "Momma dead," several times, but no one knows where he heard those words.

Scott believes Sky understands what happened. On three visits, he says, Sky has said, "Don't hit Momma," or "Sky sorry hit Momma," each time in response to Scott's questions about his new rooms.

"And he's almost crying as he says these things," Scott says.

Scott is not sure Sky understands death, however. "The closest he came was when the family dog died," Scott says. "His summation of it was, well, she was with her puppies. I have no idea why he thought the puppies were synonymous with heaven, but he did, and there was an air of finality in the way he made that pronouncement."

On one visit, Sky said to Scott, "Want Momma." "And of course I told him, 'Momma loves you very much.'"
gravestone.jpgLisa DeJong, The Plain DealerTrudy Steuernagel's family buried her ashes in a plot overlooking the Cuyahoga River at Kents Standing Rock Cemetery. They left a place for Sky to join her one day.

A final resting place

Bill Steuernagel still has the letter Trudy wrote and locked in her safe. At first, Trudy's family decided not to reveal to outsiders what it said. One of Sky's lawyers told them it might give autism a black eye. Another said it might make Trudy look bad.

Recently, the family reconsidered. "I know my sister well enough that this just didn't come out of nowhere," Bill says. "She meant for it to be read."

So Bill read it aloud, stumbling as he focused through tears on his sister's words.

"To whom it may concern:

"If this letter has been opened and is being read, it is because I have been seriously injured or killed by my son, Sky Walker. I love Sky with my whole heart and soul and do not believe he has intentionally injured me. I have tried my best to get help for him and to end the pattern of violence that has developed in this home. I believe my best has not been good enough. That is my fault, not Sky's. Numerous people know about the violence and many have witnessed it. We have all failed Sky. I do not want him to be punished for actions for which he is not responsible.

"Trudy Steuernagel."

Bill and his family buried Trudy's ashes at Standing Rock Cemetery in Kent, in a plot overlooking the Cuyahoga River. Her headstone, carved to look like an open book with a dove hovering above, carries her inscription on the left-hand page: "Momma / Gertrude 'Trudy' Steuernagel / Aug. 25, 1948 / Feb. 6, 2009."

The facing page reads: "Son / Sky A. Walker / Nov. 15, 1990," with a blank space left for the time he joins her.


MySocratesNote said...

This article broke my heart, Ginger. I should learn better than to read things like this at work. My prayers go out to Sky and to all families like his (including mine) who are helpless to find a way to cope with severely autistic children.

I want to go home now and hug my little guy now.

Unknown said...

I just cried, real tears, a real heart-wrenching cry.
I remember hearing about this when it happened but had no idea about all of the details.
Thanks for sharing this, this story needs to be told.

dbcmom said...

What do we do to get the people who are in charge of this broken system to change it? I am scared. I am scared for my son to to be an adult. He is 6 now. I am frightened of the lack of help, supports and services. What can we do? This is a crisis, and it seems like no one is taking it seriously because its not about the cute little kids.

Unknown said...

Wow. I have no words for this story. It scares me to think about the amount of autistic adults that we have coming of age. But, the government doesn't care. Maybe when it's 1 in 10 something will be done.

SB said...

Sad. Need to keep these kids as close to normal environment and sensitize them to the normal behaviour, normal things etc. May be this will then change their view and get them as close to socially accepted behaviour.