Christine Czaja’s autistic son, Bode Taylor, was 3 when he wandered away from home for the first time.
“We were outside on the deck. There are gates everywhere that we installed for Bode. There is a gate on the outside deck. My daughter had come in the house real fast, and she left the gate open, and he wandered right to the front of the house,” said Czaja, 41, of Upper Township.
There was a line of traffic backed up in front of her house. Czaja thought the worst.
“We were like ‘Oh my God,’” said Czaja.
But the family was lucky. Someone had seen the child in the road, stopped and picked him up and carried the boy home.
Czaja remained vigiliant in the years that followed, but it wasn’t enough.
Bode’s wandering turned deadly when the boy left his gated backyard play area, maneuvered past the pool gate and accidently drowned. He was one month shy of his fifth birthday.
One in 68 children is identified with autism spectrum disorder. It’s estimated to affect more than 2 million people in the U.S. While autism is gaining more attention, the tendency for children with the condition to wander away from home or bolt is little known to the general public. Children with autism often have an extreme attraction to water and busy streets, which is made even more dangerous by them having little to no concept of danger. Drowning is the leading cause of death for children with autism.
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“The worst thing you can imagine is losing a child, and when it happens, it is the worst thing that can happen to you,” Czaja said. “If you think your kids are safe, just think twice. If there is something more you think you can do, and you maybe pushed it aside, do it.”
Last year, the issue received widespread news coverage when Avonte Oquendo wandered away from his school in Queens, N.Y. Surveillance video showed the boy skipping out a door. His remains were found in January. More recently, Jesse Perez, 16, of San Antonio, who had autism, died after being hit during the early morning of June 2 by several vehicles on an interstate highway in San Antonio. Perez was reported missing overnight June 1.
“They may not answer to a name, call out for help, approach a trusted person for help or respond to verbal commands. They may also hide from police, have an atypical response to search aids and K9s, and be at increased risk of secondary dangers, such as restraint,” said Wendy Fournier, president of the National Autism Association.
Compounding the problem is the fact that autism often makes it difficult for the children, when found, to tell authorities who they are or where they are from.
Alyssa Caban, of Absecon, has three children with autism who have each wandered at some point. She believes one of the best ways for parents to deal with wandering is to try to communicate to their children in their learning style. If they understand better through pictures, give them illustrations. If they have the skills to understand simple language, speak to them that way, Caban said. When all else fails, there are such things as the Big Red Safety Box sold by the National Autism Association for $35, which includes a red safety alert wristband and two door/window alarms with batteries.
Czaja said Bode was a little bit cautious, but he also was adventurous. His goal wasn’t to run away. Bode wanted to see what could be seen seen, Czaja said.
Besides placing alarms on all the doors in her home and adjusting her gates after Bode wandered the first time, Czaja also contacted the Cape May County Sheriff’s Office and had a Project Lifesaver tracking device put on her son’s ankle. Bode had only wandered one other time — he never left the house during the second incident — between his first time and his death, Czaja said.
Czaja said she had no worries about Bode wandering away from his school, Ocean Academy in Cape May Court House, because he had a one-on-one aide there.
“The loss is so profound because Bode was special needs. ... I know that sounds weird, but Bode was so much work, but he was never a burden, and I think that loss is felt tenfold because you are not doing all that extra stuff that you did,” Czaja said.
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Wandering comes up very often in the monthly support group meetings of FACES 4 Autism, which has 500 southern New Jersey families in its membership, said Isabelle Mosca, executive director of the group.
“People who may be new or are experiencing it for the first time bring it up. What’s nice is to have that peer discussion with parents who have those issues. You can compare notes and talk about safeguards,” said Mosca, founder of the Ventnor-based organization, whose son, Kyle, has wandered away. “A parent can’t even leave the house if they have more than one child (with autism) at a time because the one child will wander into the street.”
Mosca said she would apply for a grant in March from a Swimming and Water Safety Scholarship Fund from Autism Speaks to create a Bode Taylor Swim Scholarship, so southern New Jersey autistic children can learn how to swim.
The first time Caban experienced one of her autistic children wandering away happened four years ago on the Ocean City Boardwalk when her oldest son, Marquez Campbell, was 5.
“We stopped to get pizza. We were with friends, and he was sitting at the table eating his pizza. I peeked into a shop, a picture shop that does old-time pictures, and when I turned my head back around, he was gone,” said Caban, 27.
Caban’s friends had been sitting with her son, but they thought he had stood up to walk to her.
“Everybody had come out of Gillian’s Pier. I didn’t know if he ran to the ocean. I didn’t know if somebody took him. I didn’t know which direction to go, so I was freaking out. I called the police right away, and my friends went to go look for him,” Caban said.
Marquez was found by the boyfriend of one of Caban’s girlfriends. Marquez was trying to play an arcade shooting game on the Boardwalk.
“It was traumatizing to me. I remember being so mad at myself and being mad at my friend. ‘How could you let him get up from the table?’ but she had no clue. That was the only time he ever wandered away from me. He’s tried, but I have always kept my eye on him since then,” Caban said.
Caban has two other children — twin 7-year-old girls Marissa and Madisen Campbell — who also have an autism diagnosis. Both have wandered away.
“It’s nerve-wracking every time it happens. Madisen is still my problem with wandering. Both of the girls, they get thoughts in their head that they want to go to a certain place. They want to go somewhere, and sometimes, they just start walking off,” said Caban, who added that her girls have had the Project Lifesaver bracelets, but they are smart enough to use scissors to cut them off. “Madisen, over the summer, went through a phase of trying to leave the house every day in August. It was pretty bad. The month of August was pretty rough for us.”
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