It could have been Devan. After reading about the tragic death of a 5-year-old autistic boy who wandered from a relative’s east Allentown home on New Year’s Eve, Erik Weiner turned to his young daughter, who has Down syndrome, and recalled all the times she wandered from his care and hid.
She’s safe thanks to the grace of God, the 40-year-old Quakertown father knew. In the absence of divine intervention, he thought, there must be more the community can do to protect kids like Devan and Jayliel Vega Batista, whose body was found Jan. 2 in the Lehigh Canal.
So Weiner started an online petition last week, calling on elected officials to set up a community alert for special needs children that is similar to the amber alert, which is activated when children are abducted. This one would be used when children with autism, Down syndrome or other physical or developmental disabilities go missing. Weiner’s petition on change.org struck a chord, racking up more than 1,400 signatures in four days.
“I think this type of an alert system could help,” he said. “What happened in Allentown was a tragic situation. The family and the city of Allentown did everything they could. It was just bad timing.”
Hundreds of volunteers and emergency crews searched for Jayliel for 40 hours after he wandered without shoes or coat from a holiday party. Authorities believe he died soon after disappearing.
Parents such as Weiner know too well the terror that comes when they lose sight of their autistic children. Some children leave their homes, unlocking doors along the way. They stray not only from parents but caretakers at schools and day cares.
“These kids are finding themselves in harm’s way within minutes,” said Lindsay Naeder, director of the Autism Response Team and Safety at the Autism Speaks advocacy group. “Two minutes is too long for a child with autism.”
She lauded petitions such as Weiner’s because they create a starting point for a community conversation on autism, which raises awareness. But she said any alert system for autistic kids would have to be structured differently than amber alerts, which go out statewide, and if necessary, across the country.
An alarm for a missing child with autism must be hyper-local and immediate, she said. The message has to get to neighbors, schools and other community members within minutes. And those who get the message have to act. Neighbors need to be walking to their doorstep or to the end of their driveway when they get the message.
That can be done through reverse 911 calls, where authorities use public directories to alert people in a certain geographic area. Allentown police used that alert, which went to all landlines in the area and the cellphones of people who registered for the program, for Jayliel on Jan. 1 and 2. It was the first time the system was used for a major incident in Allentown.
Weiner’s efforts follow those taken in other communities where special needs children have met tragic deaths.
In 2014, New York City Mayor Bill DeBlasio signed Avonte’s Law, named for a Queens teen with autism who died in 2013 after walking out of school when an outside door was left ajar. The law requires the state Department of Education to evaluate whether school doors should be hooked up with alarms to prevent a student from wandering.
A federal Avonte’s bill, proposed by U.S. Sen. Chuck Schumer, D-N.Y., would make GPS tracking devices available to parents who choose to use them for children with a tendency to bolt.
In 2010, when Sheila Medlam was at work and her 5-year-old autistic son, Mason, was left in the care of a family member, the boy bolted out of the house and was found dead in a pond. The Kansas woman, who has been following Jayliel’s story online, has tried to interest elected officials there in considering a special alert system such as the one Weiner is proposing or to expand the use of existing systems. But her efforts have not led to legislation.
“My goal is to have a year of zero deaths,” said Medlam, adding that too many autistic children die accidentally every year.
Pennsylvania, which has 55,000 people with autism receiving services, doesn’t have an alert system that specifically targets children with special needs, but it does use the Missing Endangered Persons Alert System to let local media know when someone is missing and is at high risk for harm.
It’s been used for autistic children and people with dementia. In Lancaster County last month, authorities used the alert and within five hours found a man with dementia who had driven away in a car.
In Jayliel’s case, police didn’t use the system because the local media were already alerted and other agencies had responded to the city’s call for help, sending canine officers and a helicopter.
Weiner’s petition has gotten some state officials talking while the Legislature is not in session.
Rep. Michael Schlossberg, D-Lehigh, said he’s open to considering Weiner’s suggestion and learning whether there are other safeguards the state can implement.
“This petition is a very human response to such a tragedy,” he said.
Sen. Lisa Boscola, D-Northampton, said she would consider tweaking the Missing Endangered Persons Alert System because she thinks it is underused. She said a catchier name might remind law enforcement officials to use it. She said the state also needs to get emergency messages to more cellphones and to secure money for tracking devices for children with autism.
“We need more education, continued training,” she said. “We have to improve the system.”
But legislative remedies alone won’t stop other vulnerable children from tragedy, Naeder said. The effort has to be multi-faceted and include training for first responders and community education.
Officers need to question family members about where the missing child’s favorite places are, their interests and obsessions, she said. Some children are attracted to water and others to bright objects such as streetlights. They need to know that the child may not respond to his or her name or to verbal commands.
“It’s an important conversation to have,” Naeder said. “One child losing his or her life is too many.”
‘Always unique’
It’s not unusual for autistic children to wander, even to get past the most vigilant parent.
A 2012 autism study published in the journal Pediatrics found half the parents surveyed reported that their child with autistic spectrum disorder wandered away from caregivers at least once after the age of 4. Twenty-six percent were missing long enough to cause concern. Of those missing, 24 percent were in danger of drowning and 65 percent were in danger of traffic injury.
The National Autism Association reported, based on media accounts, there were 22 deaths of children with autism who wandered away from the safety of their family between 2009 and 2011. All but two drowned. One child was wearing a tracking device, which did not emit a signal underwater, according to the association.
Some who leave a safe environment do so to get to water, train tracks or some other place they find interesting or are obsessed with, the association says on its website. Other times they are confused or want to get away from something they are uncomfortable with, such as loud noises or too much stimulation.
When Medlam’s son went missing, she frantically told police to look near the pond, which was among the most dangerous spots near her home. Only later did she realize she wasn’t specific enough. She suggested that parents keep a list of places their children are most likely to go to, including landmarks and other cues that could help rescuers find the places.
Shortly after Jayliel was found in the canal, his father said the boy was fond of water.
Jayliel’s story was familiar to Kimberly Heinrich, one of the many parents of autistic children heartbroken over his death. She said that by the time her now-adult son was 5, he had wandered off about eight times. It happened when the boy was being watched by her, his father, a grandparent and day care workers.
An escape artist, her son unlatched the chain lock above his head once to get out. Another time, Heinrich, of Lower Macungie Township, found him hiding in a neighbor’s garage. He got lost in the mall and on the way home from watching fireworks.
“These kids are in their own world, their own head,” she said. “They’re not playing by the rules of the rest of society. He didn’t understand. He saw something, followed it. … He wasn’t thinking about danger, not fearing anything. Some of these kids don’t feel cold, don’t feel the temperature go way down like we do. They go out unprepared.”
Autism Speaks gives parents lots of tips for keeping tabs on children, though none is foolproof. The group suggests parents consider securing homes with special locks or alarms on doors and fences. Because many children with autism are drawn to water, swimming lessons can be valuable.
Bracelets with tracking devices such as those connected with Project Lifesaver, which operates in Allentown and Bethlehem, offer another layer of security. Allentown police Chief Keith Morris said Friday he is looking into how Project Lifesaver, a tracking program that uses wristbands, may be expanded to more people who are at risk of wandering into danger.
One of the most important things a parent can do, according to Autism Speaks, is make the community aware of their child — get to know neighbors and tell them of a child’s propensity to wander. First responders also should be notified of children at risk and what may trigger them to run or become agitated. For example, Jayliel was wary of strangers, so police, in their alerts, asked the public not to call the boy’s name if they came upon him.
Jayliel’s story touched many in and beyond the autism community.
At the child’s funeral Friday, his father, Gilberto Vega, said he was grateful for the community’s support. Noting he has another son with autism, he said he would support anything that could prevent a similar tragedy.
Many at the funeral wore T-shirts that read: Autism: Always Unique Totally Interesting Sometimes Mysterious. The shirts were being sold to raise money for autism awareness.
Weiner and others are hoping that awareness remains high and that communal grief will morph into action as a tribute to Jayliel.
Twitter @McallBethlehem
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Reporter Manuel Gamiz Jr. contributed to this story.
GETTING INVOLVED
To sign Erik Weiner’s petition: search “Weiner” on change.org.
To register your cellphone for emergency alerts: In Lehigh County, lehigh.alertpa.org; in Northampton County, notifync.org
