Haines Falls, New York: Missing autistic teen, Ryan Barrett, found dead

Ryan Barrett, age 14

Posted: Aug 14, 2009 10:07 AM EDT

HAINES FALLS -- Officials in Greene County believe they have found the body of a 14-year-old autistic teen that went missing from a campground Thursday. The teen, Ryan Barrett of Lindenhurst in Long Island, was staying with family at the North South Lake Campground in Haines Falls, ten miles from Hunter Mountain.

Witnesses say the boy was found dead in one of the two lakes nearby. Police suspect no foul play, so it is likely Barrett drowned.

His family reported him missing around 7:30pm, shortly after they arrived at the campground. Less than 24 hours later, his body was found.

With two lakes and dozens of trails, State Police had a lot of terrain to search on foot and by helicopter, but it was State Police Divers who found him in a lake.

Sources tell NEWS10 that Barrett wandered away from his campground, a behavior that is typical of people with autism.

"A lot of autistic children like to wander," said Cindy Hermann with the Autism Society of America, "The child's there one minute happily playing and the next minute you look around and they're gone."

Hermann, herself, has an autistic son and says whether it's a campground or a neighborhood, it takes a community to look after an afflicted child because they often lack fear, especially around busy streets or water.

"They just have a fearlessness about them, which can be scary," Hermann told NEWS10.

Barrett's body is now at Saint Peter's Hospital in Albany, where an autopsy is expected to be performed.

Huntington, West Virginia: Christopher Cline dies after untreated head injury

Father blames Autism Services Center for son's death
12/21/2010 12:55 PM By Kyla Asbury -Cabell Bureau

HUNTINGTON -- A man is suing Autism Services Center after he claims it is responsible for his son's death.

Christopher J. Cline had autism and moderate mental retardation and lived with his parents until his death on July 31, 2009, according to a complaint filed Nov. 22 in Cabell Circuit Court.

On July 31, 2009, Autism Services Center assigned Christopher Cline's day services to its employee Joey Cutler. Cutler picked Christopher Cline up at his home and drove him to the Cabell County Public Library, according to the suit.

Daryl Cline, Christopher Cline's father, claims while Cutler and his son were at the library, his son went to the men's restroom, which meant he was out of Cutler's eyesight when Cutler heard Christopher Cline "fall hard and let out a loud bellow."

Cutler assisted Christopher Cline in getting up from the floor and realized that he was disoriented and took longer than usual to be able to get up from the floor, according to the suit.

Daryl Cline claims immediately following the fall, Cutler decided not to seek medical attention for his son and instead drove him to Barboursville Park in order to walk around the track.

While at Barboursville Park, Christopher Cline and Cutler walked around the track several times until Christopher Cline "fell again and let out another loud bellow," according to the suit. Cutler, again, chose not to seek medical attention and decided to drive Christopher Cline to the Huntington Mall.

Daryl Cline claims while Cutler's car was in route to the mall, Christopher Cline began to vomit profusely for several minutes, so Cutler pulled his car over and helped him change his shirt, but did not seek medical attention.

Upon arriving at the mall, Cutler "described a 'gasping, gurgling sound' from Chris in the back seat, who had then become unresponsive, with eyes closed," according to the suit.

Daryl Cline claims upon arrival of EMS personnel, Cutler was asked if Christopher Cline had any recent injuries and "apparently responded that he was 'not sure of any recent injuries.'"

Christopher Cline's patient care record does not reveal that Cutler "informed the responding EMS personnel of either fall Chris had suffered earlier that morning or that Chris had been profusely vomiting shortly before EMS arrived," according to the suit.

Testing revealed the Christopher Cline had suffered a shallow bleed on both sides of his brain, but because he had then reached the neurological stage of fixed and dilated pupils, simple evacuation of the shallow subdural hematomas had been eliminated as a surgical option, according to the suit.

Daryl Cline is seeking compensatory damages with pre- and post-judgment interest. He is being represented by Chad S. Lovejoy.

The case has been assigned to Circuit Judge F. Jane Hustead.

Kent: Ohio: Sky Walker 19, kills his mother Trudy Steuernagel, and continues to ask for her from jail

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.

AUDIO

trudy.mp3">

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.'"

Naussau, Bahamas: John Travolta's son, Jett Travolta, dies after a seizure

Jett Travolta, age 16

NASSAU (Reuters) – The teenage son of actor John Travolta died suddenly on Friday during a family vacation in the Bahamas, according to the family's lawyer.

Jett Travolta, 16, suffered a seizure at his family's vacation home at the Old Bahama Bay Hotel on Grand Bahama Island, attorney Michael Ossi said.

Attempts were made to revive him, but he died at the scene, Ossi said.

Jett, who had a history of seizures, was the eldest child of Travolta and his wife, actress Kelly Preston. They also have a daughter, Ella Blue, who was born in 2000.

Wellington, Florida: Kaitlin Bacile drowned in canal blocks from her home

Kaitlin Bacile, age 5

WSVN -- It is a parent's worst nightmare. Five-year-old Kaitlin Bacile
slipped out of her Wellington home last September.

Jay Bacile: "She was gone probably two minutes at the most, at the absolute most before we realized she was not in the house."

The autistic little girl was found the next morning drowned in this canal just blocks from her home.

Jay Basile: "The shadow of Kaitlin's death reaches into places that none of us like to go."

Autistic children are fascinated with water and because of that, drowning is one of the leading causes of death. Parents of autistic children worry about it everyday.

Richard Nardiello: "My son loves water but has no fear of the water."

Three-year-old Christopher Muniz ended up in a Broward pond last April. He died four days later.

Cindy Anderson: "We need safety nets for our kids. We need them quickly. I need it now."

But the problem is, unlike the Amber Alert system for children who are abducted, programs designed to help missing autistic children are not being used consistently. The "Take Me Home" program supplies police with pictures and information of at-risk kids.

But of the 271 law enforcement agencies in Florida, only 41 use it. "A Child is Missing" is a national emergency system which can put out 1000 alert calls in one minute to a neighborhood where a child has gone missing.

Claudia Corrigan, ACIM: "It's important to get these calls out there immediately, and we can do it. You have a small window of time, it's a two to three hour, and even then, if there's water nearby, it's very, very tough."

The service is free to police, but they don't always use it. Finally, only 37 police departments in Florida have picked up a program called Project Lifesaver.

Wristbands allow rescuers to track the person wearing it, but it puts the burden on parents to pay for a $300 bracelet, and most autistic children have sensory issues and won't wear them.

Tina Brea: "This is a child that cannot communicate, that cannot understand the simple commands that others their age can, so any attention that can be brought to this the better."

Parents say a more unified alert system, like the Amber Alert is needed. Florida is looking into the issue.

Ven Sequenzia: "Something will be addressed in the recommendations to the governor. Again, I can't say what that will be at this point. The report's not due until the end of March."

And parents of these children say they hope something is resolved soon. While it's too late for Kaitlin, her parents hope some good can come from their tragedy.

Jay Bacile: "We want Kaitlin's life not to go in vain. At the very minimum we want to raise awareness. We just want her memory to live on and do good because that's what Kaitlin was pure goodness."

It's estimated that one in every 150 kids are diagnosed with autism spectrum disorder, and it occurs more often in boys than in girls.

Brunswick, Maine: Ashley Brock 2002-2008

Today is a day full of grief in our home, in our small town and in our biomed community. Ashley Brock, one of our own and one of Chandler’s classmates, passed away last night.

It is the story we read practically every month. A child with autism gets away from their family, drawn to the water that they love so much, and drowns.

Barry and Michele Brock invited over three friends to cook out on the back porch yesterday. The adults grilled while Ashley, her typical twin sister Alexis and two other children played in the grass.

And then came that moment that we have all experienced too many times.

“Where’s Ashley?”

Everyone scattered around the house calling her name, and immediately they looked over the fence at the neighbor’s back yard. Because the neighbors had filled up their pool the day before and Ashley had seen their children swimming.

And Ashley loved the water.

But when they looked, they didn’t see her and fanned out into the woods behind the house and into the street. A few more neighbors came out of their houses when they heard her name being called to help look for her.

That is when another neighbor checked the pool again... from another angle. He saw Ashley was at the bottom and dove in to pull her out.

Her mother performed CPR on her and a doctor who lived in the neighborhood was quickly called, the paramedics worked on her and the hospital staff continued to work on her for almost an hour and a half.

And they thought they were getting her back… but they didn’t.

Michele and Barry are devastated, and we are heart broken.

It is very hard for me to really believe that Ashley is gone. She was a child full of life and energy. She was always doing. Riding her bike or scooter or swinging. And not just any swing. Last week when the family was going to see their friends across the street, Ashley dug through the garage and brought her own swing over to use at their house.

She was a strong spirit. What she wanted, she wanted, and if you wanted to keep something from her, she made you work to keep it from her. Once Michele had begun teacher her ‘first_____, then _____’, Ashley turned it around on her and began to use it as a negotiating tactic.

“Ashley, time for supper.”

“Mommy, first supper, then cookie, then bike, ok”.

And if she thought you were mad at her, she would ask you for tickles. The girl was smart.

She knew all three names of every major composer. Her favorite was “Wolfgang Amadeus Mozart” and would sometimes play his music at 3 AM for everyone in the house to enjoy.

Ashley Brock, age 6

She loved books (wouldn't get on the school bus without one), and dogs, and did great animal impressions and carried her flashcards everywhere. And she loved bubbles and she loved to paint and she loved red and she loved stacking things.

And she was great at basketball. They bought her a full sized basketball hoop and she owned it.

And Ashley was loved.

Her parents changed their whole world around for her, giving up jobs and friends and family to come to a place that would be good for her. Barry was a loving, care giver dad and Michele was an autism mom like few others. Her advocacy for autistic child puts mine to shame, challenging school system bureaucrats head on when they weren’t working in interests of her child, but in the interests of their bottom line; searching out the doctors that could heal her child; and letting nothing get in her way.

And what she did for Ashley’s health… let’s just say I could only follow about two thirds of what Michele was saying when she talked about her daughter’s complicated medical picture. Again… her knowledge showed me how much more I had to learn.

And the Brock’s home security is much better than our own. Ashley was an escape artist who climbed out her second story window on the first day they moved into their house. So her windows didn’t open after that.

Which is why Ashley’s death doesn’t just grieve me, it scares me. The Brocks were so much more on top of things that Scott and I are, so if they can loose Ashley in just five minutes when she was only 50 feet away from them…. well…

Last fall I was sitting at my desk paying bills and Scott was upstairs in his office working when the police came to our door with Chandler who had been found three blocks away by a Verizon employee driving by. While we thought he was in the playroom, he left the house apparently to look for his brother who was at school. We never even knew he was gone.

Chandler knows his name and his phone number and his address, but all the police could get out of him was “Webster”. So we have upped our security, and bought a bracelet and even have a tracking system now.

But Ashley was only 50 feet away from them and they didn’t know she was in trouble.

There is not a family among us that doesn’t know in their bones that this could have been any of us. And still could.

This morning Michele all but begged me to get swimming lessons for Chandler. They had just signed Ashley up for them. Again… to my shame… I have not made this a priority, but I will correct that. She is urging us all to make it a priority for our children.

A small correction to what has been in the local coverage. It was reported that the police are investigating Ashley’s death. That does not seem to be accurate.

Last night the police were very respectful and kind to the Brocks and when they left the home they said that they had everything they needed, so even if there is still any formal inquiry going on, or paper work ‘open’, it is probably a formality.

The Brocks are getting good support from their friends and family, and from the community, and many people are asking what they can do to help. But they don’t really know yet. They are still reeling right now.

Michele did say that if any one would like to do something that she would like it if they would make a donation to the National Autism Association’s Helping Hands program that pays for biomedical treatment for struggling families, or to 4 Paws for Ability, who trains autism service dogs for our kids and never turns down a request from an autism family.

For those of you who were on the lists with Michele, she has signed off of all of them. I am sure you could imagine how painful it would be to see those emails coming in. If you want to leave messages for her and Barry here, please feel free.

Ashley Brock, age 6

UPDATE: The Ashley Brock Memorial Fund

A fund has been established to assist the Brock family during this difficult time.

Donations can be made to any Bank of America branch across the country in the name of Ashley Brock Memorial or mailed to
Marina Curtis
5 Balsam Ave
Brunswick, Maine 04011

or via pay pal:

UPDATE: There is a video tribute to Ashley on the Bracket Funeral Home web site.

UPDATE:

Ashley's Obituary with information on funeral services and memorial fund:

Brackett Funeral Home
29 Federal Street
Brunswick, Maine 04011
207 725-5511

Brunswick, ME—Ashley Elaine Brock, age 6, died Sunday, May 18, 2008 as a result of a drowning accident.

Ashley, a daughter of Barry Edward and Michele Sporkman Brock, was born in Lexington, KY on February 7, 2002. She was in Kindergarten at Jordan Acres School in Brunswick, ME.

Ashley was a free spirit in every sense of the word and had an umlimited supply of energy. She enjoyed playing outdoors, the beach, swinging, jump roping, riding her bike or scooter, and shooting basketball on her regulation hoop. She loved bubbles, books, balloons, music, umbrellas, red wagons and painting. She regularly woke her parents in the night with the sounds of reading her dictionary or playing her Mozart cd. Ashley was never without her wildlife flash cards or a favorite book and loved all animals, especially dogs. She was a precious gift from God and the world is a better place because she was in it.

Ashley is survived by her parents, Barry and Michele Brock of Brunswick; her twin sister, Alexis Brock of Brunswick; her grandparents, Glenn and Mabel Brock of Berea, KY, Donald and Elaine Sporkman of West Point, IA; two uncles, Robert Brock and his wife Patricia of Berea, KY, Mike Sporkman and his wife Brenda of West Point, IA; an aunt, Sandra Hammonds of Berea, KY; and several cousins.

Friends and family may visit from 5:30-8 PM on Friday, May 23, 2008 at the Brackett Funeral Home, 29 Federal Street, Brunswick. A Mass of the Angels will be held 10 AM Saturday at St. Charles Borromeo Church, McKeen Street, Brunswick. Memorial contributions can be made to the National Autism Association, Helping Hands Program, 1330 W. Schatz Lane, Nixa, MO 65714, 4 Paws For Ability, Inc. 253 Dayton Ave. Xenia, Ohio 45385, or the Ashley Brock Memorial Fund at the Bank of America.

UPDATE: Yesterday was Ashley's funeral and the outpouring of love for her was beautiful. I want to share three very moving tributes that were given during the service. A letter from her mother:

While we gather here today to mourn the loss of one of our special daughters, Ashley Brock, I would like us to focus on celebrating the truly unique and special individual she was. She would be asking for big hugs or tickles right now if she thought we were upset or crying.

As I struggled to find meaning in this tragedy, it occurred to me that while her time on earth was brief, I believe that she had a purpose. I have been overwhelmed by the support and generosity from the community, our family, friends, neighbors and even total strangers. I have also found comfort in the numerous individuals who have indicated that Ashley may have prevented a tragedy in their home by encouraging them to either enroll their child in swimming lessons or increase security. I believe Ashley would find solace if another family could be spared the pain that we are going through.

Ashley also taught me to be more patient, compassionate, and empathetic and to enjoy the simple pleasures in life. My dear friends, if I have learned one thing in my journey with Ashley it is this – take nothing for granted. Appreciate what you have instead of focusing on what you think you want. Look at what you have right in front of you and cherish it – every smile, every hug and yes, even every trying moment. Practice patience when you think you have none left for harsh words can never be unspoken. Celebrate today versus yearning for tomorrow. Live life with no regrets and seize every opportunity to find all that is good in the world.

Ashley was truly a gift from God. While I feel so honored to have had Ashley in my life for six wonderful, yet challenging, years, I know that I am equally blessed to have her beautiful twin sister, Alexis. Alexis, while at times I may be sad because I miss Ashley, I promise to thank God each and every day because we have you. You too are a gift from God and I am so lucky to be your mommy. Mommy & daddy love you very much.

A poem written by her neighbor:

Fly, Spirit, Fly
To a place where every day is warm and sunny, and every beach is Popham.

Fly, Spirit, Fly
To a place where bouncing balls stretch out as far as the eye can see, and there’s a dog to chase every one.

Fly, Spirit, Fly
To a place where bubbles fill the air, monkey bars replace sidewalks, and there’s a bounce house on every corner.

Fly, Spirit, Fly
To a place where bike rides last forever, and you can run and never tire.

Fly, Spirit, Fly
To a place where words and hugs and kisses come easily.

And back here, when it’s time, and the time will come, although the journey will be difficult,

When it’s time to begin replacing sorrow with peace,

Aching with comfort,

And emptiness with fond memories,

We will understand that the flight is not

away

from us,
But instead is over us and around us,
Embracing us and whispering in our ears

“Thank you for everything.

All these things that bring me joy I know because of you.

This place is just like home.”

- Dave Aust

The eulogy given by her speech therapist Cathy Burgess:

Good Morning.

I am Miss Cathy, one of Ashley’s many speech therapists. When Michelle and Barry asked me to speak today, I knew immediately, that if there was ever a moment in time when I wanted to be present, it would be here, right now, in this moment. I am not exactly sure why, except to say that in all my years as a speech therapist, if there was ever a moment in time to give a voice to one of my precious children it is now.

For more than two and a half years Ashley would grace my doorstep promptly at 4:00 on Wednesday afternoon. She was a charmer. With those magnificent dark brown eyes, engaging cheshire grin, and an incredibly inquisitive mind, she stole my heart immediately and melted it into a million little pieces.

Teaching her to talk and communicate effectively was my charge, and as a seasoned therapist I was confident that I could meet that challenge. So with my agenda and materials in hand we would set off for the therapy room where I would begin my lesson. With a secure and authoritative voice I would tell her what the plans were for the day. Well, I think that if there was ever anything that could make Ashley laugh, it would be when you told her YOUR plans. She would look at me as if to say, “girl, its time for you to eat some humble pie.”

I learned quickly that I was not there to teach her, but rather she was there to teach me. And while she could not always say it in words, her message was clear…She didn’t just ask, she demanded, that I Listen, Watch and Learn.

Her first request was always the same. “I want pink and white ball please.” Mind you, it was not the blue and yellow one, or the red and yellow one, but the pink and white one…and God help me if I couldn’t find it. She would place it in a simple maze and watch with delight as it traversed down its winding path. Doing something once however, was never enough. While I might have interpreted this simple game as repetitive and monotonous, she found it fascinating and delightful. So I watched and I learned, and found myself becoming a master at how to find a zillion ways to teach a multitude of a skills with just one simple pink and white ball.

Next, came one of her passions. And there were many. She loved music and singing. Whether it was chanting songs that she had learned at school or playing her little piano, music was part of her captivating spirit. She made it clear though, that there were no rules about singing or playing music. As a matter of fact, it was obvious to her that one should sing absolutely everything and anything any time of the day or night. And as Michelle and Barry will attest to, the more Mozart you put in your life between the hours of 3 and 5 am, the more delightful your day will be, that is if you remember to play the same song 87 times at full volume. Who needs sleep? Mom always said that sleep was over rated anyway.

Colors intrigued her and when she learned what painting was all about, she would set out to create masterpieces. And, as any great artist knows, there are a multitude of canvases from which to choose from that can display your inner most creativity. There are one’s hands, one’s shirt, one’s pant’s, ones’ belly……

Her fascination for letters, words and the alphabet opened up the world of reading to her by the time she was three. Words helped her to say and practice all the wondrous things she saw in her world. Her language blossomed. Each week, brought new and exciting ways for me to understand and reach her. Looking back I recognize how tolerant she was of my stupidity. It was really as simple as knowing your ABCs.


A is for Ashley, athletics and activity.

B is for Bubbles, Books, Baby Einstein, Bikes, and Basketball.

C is for cards, cards, and more cards.

Yes, cards. She loved them. She had cards for every category of life. She carried them everywhere and recited them faithfully. There were cards for animals, toys, foods, and clothing. We had cards for letters, numbers, shapes, verbs and adjectives. Well, I thought, at least I got the cards right. But she told me this week loud and clear that there was one category of cards I failed to give her. I didn’t think to make Ashley her “I love you” cards. So I will do it now.

The first card would say on the front,

“I love you Mom and Dad”

And on the back,
Thank you for your abundant love, commitment, patience and dedication to ensuring that my days with you were the best that any child could wish for. I am so very lucky to have two parents who demonstrated their incredible courage, strength, persistence and unconditional love every day.

“I love you Lexi”
Thank you for being the beautiful, kind and loving sister that you are. Thank you for your hugs, your guidance and for being my teacher and my friend.

“I love You Grandma and Grandpa, nanny and papaw, and all my wonderful aunts and uncles and cousins.”
Thank you for accepting me for who I am and embracing my challenges with love and support. Thank you for being there for me and for helping mom and dad through many challenging times.

“I love you special neighbors and friends”
Thank you for playing with me, accepting me into your lives, and for providing comfort, protection, support, laughter and friendship to our whole family.

“I Love you all, my wonderful teachers”
Thank you for filling my days at Merrymeeting, The Bath Y, Jordan Acres and Longfellow with fun, excitement and learning. Your dedication and commitment to me was incomparable. Thank you for cherishing me, recognizing my gifts, and believing in my potential.

Knowing Ashley, I am sure, that she would add more cards to the stack every week. I am also sure that as I continue to work with children in the years to come, they will all have I Love You cards.

Yes, Ashley had many glorious gifts, but like most children she had her challenges too. Did I mention that she also had Autism? While I refuse to define any child by the parameters of a disability, I am haunted by the fact that like Ashley, too many children in our community, state, nation and world are afflicted with a disorder that in my mind is as senseless and tragic as Ashley’s passing. Autism is a disorder that now affects 1 in every 150 children and there is no cure. For those of you here, who are in the trenches along with me in fighting this insidious disorder we must ensure that Ashley’s voice not be silenced. I implore you to allow this incredible child’s journey to speak through your heart and your voice. Be persistent. We must be vigilant in our efforts to increase autism awareness, educate our communities, and advocate for services so that we can ensure the safety and future of all these children. If we are able to use this tragedy to save just one life, then Ashley’s death will have not been in vain. We can make a difference. We do make a difference, and if there is ever moment when you doubt this for even a second, just repeat it 87 times until the doubt fades away.

I will miss you dear Ashley. While my Wednesdays will no longer be the same, I know for certain that your voice, your gifts, your lessons and your challenges will forever be a part of my life. I know I have many more lessons to learn. But yours are really simple to learn if we just remember what is truly important in our lives.

1. Celebrate the love, the joy and the magic in even the simplest of things.

2. Find your passions and embrace them with each new dawn.

3. Sing with sheer abandonment even if it is a Christmas Carol on a warm spring day and wear your fire hat if you feel like it.

4. Use your voice. Say “no” when you need to, even if it’s not what others want to hear.

5. Remember to Practice saying your “I Love You cards” everyday, even if someone else forgets to say theirs to you.

6. And never, ever forget, that as we journey through this life, no matter what the challenge, remember always


“Where there is a will…
there is a way.”





Rest in Peace, My Sweet Ashley.

Jean-sur-Richelieu, Quebec: Gabriel Poirier, 9, suffocated while being restrained at school

Gabriel Poirier, age 9

A coroner's report released today revealed suffocation as the probable cause of the death of a nine-year-old autistic boy.

By The Gazette June 19, 2008

A coroner's report released today revealed suffocation as the probable cause of the death of a nine-year-old autistic boy.

The boy's parents described the reports findings as a “shock” because the school told them he had passed away “naturally and calmly.”

The boy, Gabriel Poirier, attended a specialized school in Saint-Jean-sur-Richelieu, in the Montérégie region of Quebec.

On April 17, Gabriel began to disturb his class with loud sounds. After being told repeatedly to calm down by a teacher, he was rolled in a weighted blanket. With his arms by his side, he was left on his stomach for over 20 minutes with only his toes exposed.

When the teacher went to check on him, he was “listless and blue in the face,” the Coroner's report said. The teacher called 911 but the boy was already in a deep coma and passed away the next day in the Sainte-Justine hospital.

“He was a very gentle boy. Sometimes he was loud, but he was never aggressive or violent,” Gilles Poirier, the boy's father, said today.

The parents' lawyer, Jean-Pierre Ménard, said vulnerable children like Gabriel need better protection.

“We're asking Minister Courchesne to implement a legal framework to regulate how these children are handled,” Ménard said.

Weighted blankets are custom-made blankets filled with a specific material that gives the blanket added weight. They are considered an effective tool for helping calm down high-energy children, especially autistic children who respond well to sensory therapy.

“They have a therapeutic use and can be relaxing,” said Kathleen Provost, executive director of the Autism Society of Canada.

But occupational therapists have developed a set of rules and protocols that must be followed when using a weighted blanket, Provost said.

bbundale@thegazette.canwest.com