It’s still unclear to me exactly when I realized Alex wasn’t going to stop running before he entered the street. For months and months he’s been excellent about this trick of survival in the streets of Manhattan, running running running right up the edge of the curb, then halting and holding out his hand for me to take when we cross the street.

Image: Sonja's 07 photostream, Flickr.com

This time, no. He sideslipped the police barricade and weaved right out into the middle of the intersection of 5th Avenue and East 96th Street. Cars were turning onto Fifth out of Central Park. Alex was laughing and laughing while while we screamed his name behind him. The wind on his cheek must’ve felt like the freedom of being a big grown-up boy until the arms of the traffic cop cocooned him.

“Sorry, officer,” I mumbled, snagging his arm. What else could I say? The guy had to get back to his turning traffic.

“We - are - going - HOME!” I snapped to Jill, Ned, and especially Alex. Jill and Ned continued on their way down Fifth Avenue while Alex and I walked home — fast and dad-mad. “You did something bad!” I kept saying. “You do NOT EVER do that!!”

“Something bad,” Alex kept repeating. “Something bad. Something bad. Bite.” He pretended to bite his arm. I’ve found the best response to this is to pretend to bite my own arm, and showing him how silly it looks. This often works; figuring out that it works took a bit of time and a bit of knowing Alex.

So does explaining why he suddenly ran into the street. For 10 blocks we’d been walking down the center of Fifth Avenue, which was closed to traffic for an early-evening festival on Museum Mile. So Alex, who knows full well you don’t walk down the middle of the street normally, had been doing so with great enjoyment — running circles, literally, around Jill at one point — and perhaps he saw no clear reason this freedom should just end at E. 96th Street. At that street, police had erected barriers across Fifth Avenue to control pedestrian traffic. But I have never thought to teach Alex what police barriers mean.

Perhaps I was too far back, perhaps I was careless. Perhaps we all were, forgetting for just one second that Alex, often sensible and willing to learn to obey, does not know all the meanings of all the possible warnings in this world.

“Did that cop say anything to you?” I asked Jill later, when she came home with Ned.

She looked at me. “What’s he gonna say?” she replied.

***

Virtual reality apps are helping autistic children learn about street safety.

Am off to visit the cemetery where my grandfather, Yeh Yeh, great-grandmother, Bak Bak, great aunt, another great grandmother, a very good friend of the family, and many other great relatives are, and then out to lunch in Chinatown with cousins, aunts, uncles and (hopefully, if she’s up to it), my grandmother, Ngin Ngin, who’s 104. It’s always good to be with family—today’s St. Petersburg Times describes the bond between 12-year-old twins, Anthony and Ryan Moran. Ryan is autistic and Anthony is his constant companion:

Most of the time it’s good having a twin, Anthony insists. You always have someone to talk to, even if the other person can’t really talk back.

Ryan understands everything. “Only sometimes he doesn’t care what you’re saying, so he walks away.” And he can speak “when he wants to,” Anthony said. “One time when we were in the bathtub he said the whole pledge to the flag.”

Ryan will catch a ball, but he won’t throw it back. He’ll rebound your basketball but won’t shoot it. In Little League Challenger baseball, he’ll run the bases — but only if Anthony runs with him. “He’s always thinking about other things, so he can’t concentrate,” Anthony said. “It must be weird to be in his world.”

“Weird” maybe, but these are two brothers who are very clearly connected, however much one speaks and one is not able to.

A sad sad story from New York—7-year-old Chelsea Maldonado fell from a fifth-story window of her parents’ Bronx apartment on Christmas Eve, the New York Daily News reports—-reminds me of what I’m grateful for. Chelsea was autistic, blind in one eye, and bound to a wheelchair. Thinking of her family, and many families—-the Morans in Florida and many many more—-hope you’re all warm and safe and together today.

Very sad and sobering news to hear in this holiday season: On March 17th, 5-year-old Lily Breen swallowed a balloon and was found unconscious by her parents in their home in Desborough, Northants. As reported in today’s Telegraph, the death of Lily, who was autistic, has been ruled an accident. Lily’s mother, Angela, a registered nurse, tried to resuscitate her daughter before rushing her to the hospital, where she died.

The inquest heard Lily was very tactile and liked to play with things, and had a high pain threshold, often touching hot radiators with her hand or tongue.

Mrs Breen said she had found Lily with the balloon earlier that day and had thought to dispose of it as it was a risk, but had not got round to doing it, and had not noticed it again that day.

In her statement, she said: “I didn’t see the balloon following this and thought nothing more about this. We have since thought about it, I really don’t know where she got it from.

“I am absolutely devastated by the loss of my little girl and I am trying to come to terms with it.”
She said her daughter was a “loving and active young girl” who was very energetic.

Will be thinking of Lily and her family in this season, and after.

15-year-old Christophr Transue has been missing since yesterday, KOLD news reports. He was last seen around noon at Catalina High School in Tucson, AZ, and has autism and diabetes.

Another teenager, 11-year-old Jack Engalade, who has autism, went missing from Sunday till Wednesday night, WWLtv in New Orleans reported.

Hope good news about Christopher Transue can be heard soon, too.

For all the concern and criticism about the use of restraints in public schools on disabled students, sometimes it seems there’s no end to hearing about yet another school district that has improperly restrained a child. Yesterday’s McDowell News reports that a 14-year-old autistic student was restrained using a “belt-like device”—-a belt used to help students using wheelchairs in and our of their chairs. Jeremiah’s mother, Ann Watson, said that the school did not inform her about restraining her son and in this way.

She further said the system has purged documents that reflect poorly on the school system’s handling of special needs students.

Last month she began noticing that Jeremiah was nervous, unable to sleep at night, and unusually upset. He began having incidents at school, including wetting his pants. Then earlier in this month, she got a call from the mother of a student at East. According to Watson, the caller said her daughter was upset about seeing Jeremiah tethered and being led on a leash at school.

Jeremiah is diagnosed as suffering from autism, she said. She homeschooled him for a number of years after an earlier conflict with administrators over speech therapy and other services for her son, she explained.

Marion Police Lieutenant Scott Spratt confirmed there was a complaint on file, although his ability to comment was limited, due to it being “a juvenile matter.”

He said last week the incident “has been investigated and currently being followed up on.”
Associate Superintendent Mike Murray said last Wednesday that the accusation was frustrating.
“We don’t have devices,” he insisted. “We don’t use any torture apparatus or anything of the sort.”

A school employee who spoke on condition of anonymity told the McDowell News that an “inexperienced assistant in the class had used a belt to tether Jeremiah on as many as three occasions.” Sounds like someone with experience needed to step in?

Just as there is the Amber Alert for abducted children, should there be an “Autism Alert” when an autistic child is missing? The parents of Kaitlyn Bacile—-who, in September, was found drowned in a canal near her home —-think so, as reported in today’s WSVN (Florida):

While it’s too late for Kaitlyn, her parents hope some good can come from their tragedy.

Jay Bacile: “We want Kaitlyn’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 Kaitlyn was, was pure goodness.

WSVN notes that current programs designed to report that autistic children are missing 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 goes 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.”

What would be the best way to spread the word, as quickly as possible, that a child is missing?

20-year-old Alvin Troub and his 8-year-old brother, Michael Runyon, have been missing since Sunday, when they went fishing along the Willamette River near Independence, Oregon, KTVB reports. The river is reported to be running “very high” and there are concerns about the boys’ safety—-hope they are all right and found soon.

Earlier this month, 27-year-old Joshua Polak darted into traffic while leaving his job training center in Omaha and was in a minor traffic accident, MSCBC news reports.

Developmental Services of Nebraska’s Roger Stortenbecker said Polak’s safety is the center’s No. 1 priority. But Polak isn’t a prisoner, Stortenbecker said, and Polak’s growth and development will inherently involve a certain amount of risk in society.

“Is the expectation that we protect people from all the community so that there’s no chance of anything bad happening?” he said. “Or do we at least give people the dignity of being in the community with the support they need and the best assurance nothing bad will happen?”

Stortenbecker said the last thing he wants is a return to the primitive procedures used in the past when mentally ill people were locked in institutions.

Polak’s parents agree, but want their son to have more supervision.

Polak’s now at a different facility away from busy streets, and is being evaluated for one-on-one supervision. But how to balance freedom and safety?

A three-year-old autistic boy died after being strangled by his seatbelt on a schoolbus this past Sunday, the Jerusalem Post reports. An aide has been arrested:

During a police investigation into the incident, the boy’s mother said that she realized he was unconscious when she boarded the school bus to help him off after it arrived at her house.

Police later began to suspect that the incident was a result of the boy being improperly secured into his seat, a suspicion that led to the arrest of his aide

Many, many thoughts with the boy’s family. Many.

I’ve met more and more parents who’ve gotten a tattoo of a puzzle ribbon or of the Autism Speaks pale blue puzzle piece. How about putting a tattoo on your child—ok, a temporary one? Safety Tat offers a full selection of “temporary tats” that can be quickly applied. One says “I have autism” and another “I have non-verbal autism” (which isn’t technically a diagnostic label, of course, but I see the point, I think), while others have medical or allergy alerts; you can have your phone number printed on the tattoo. There’s also quick-stick waterproof write-on tattoos.

According to Cool Mom Picks, even a conservative MIL could love these tattoos.

In Charlie’s case, I suspect he would peel a tattoo right off, or try to— he’s learning to carry an ID card with him and to show it when asked.