Today, I want to shine a light on Avonte Oquendo, and ask him to shine a little light on me and my family.

I’m going to quote liberally and in italics from Robert Kolker’s recent article about him in New York:

The diagnosis came a few weeks later: Avonte was severely autistic. But Fontaine resisted the label severely from the start; she had seen children at Shriners who seemed so much worse than her son — children who hurt themselves, who were in anguish every waking moment, who could never form a word. Avonte, at least, was capable of sometimes uttering a word, though he had to be heavily prompted — told explicitly, several times, to sound it out — before he went ahead and did it. That was something, she thought. “He can say words, my son.”

Wifey and I felt the same way. When one doctor suggested “severe” we sort of talked him down to “moderate” because, as we said, look at his eye contact! And yes, “heavily prompted” pretty much describes every intelligible word he has ever said. Anyway, more about Avonte’s early life…

His classes always had a six-to-one student-teacher ratio, plus a paraprofessional (or teaching assistant) in attendance. Fontaine says she stepped in to advocate on Avonte’s behalf when necessary, resisting any change to his IEP that would have meant less supervision. “I would never let them put him in a class with 12 students,” she says. “I blocked it.”

Yep. Been there.

Avonte was not a problem at school. But he wasn’t learning much, either. He continued to struggle with his motor skills — he never tied his own shoes and couldn’t seem to bear down hard with a pencil. He couldn’t contemplate any game with complex rules, like baseball. He never wrote or did math or appeared to read a book.

Yep. Yep.

But the signs were always encouraging enough to keep the family optimistic. He could button and zip, eat on his own, throw his own garbage out.

Yep. Yep. Yep.

At times, if there was something Avonte couldn’t do, Fontaine chose to believe it was simply because he didn’t want to. Play catch? “He can do it, but he doesn’t really want to,” Fontaine says. A game that doesn’t require reading, like Candyland or Chutes and Ladders? “He had those games. He didn’t like them. I think he was bored.”

Dar gets into something for a few weeks, then tires of it. Just when we think we can leverage something into treatment, we find ourselves back at square one.

It was clear to his mother, at least, that Avonte had more ability than a lot of the worst cases. He was in there somewhere, she knew it. As he got older, he still wasn’t talking, but he understood everything around him. Do you want it? Do you not want it? Pick out what you want

We say these words to him EVERY DAY, and when we’re lucky he indicates a preference – but still doesn’t like to point. We don’t say with confidence that Dar understands everything around him. We’d like to believe it, but there’s just as much counter-evidence.

More important, Avonte recognized the people he loved — smiling, responding, nuzzling. “He wasn’t a kisser,” Fontaine says. “What he used to do is give me his forehead. You’d have to say, ‘Come on, can I hug you one time?’ He never gave me his cheek. Always gave me his forehead. So, you know, you go with what you can get.”

Dar takes the hand of one of us and just holds it to his mouth. There’s the risk of a bite, sure, but more often he just holds the hand close, smelling it, leaning his head on it. We go with what we can get.

Above all else, his favorite thing to do — more than browsing YouTube or playing music or eating candy — was to run. His daily life was regimented by necessity. His mother and brothers would walk him to and from the school bus. At school, his IEP consistently called for him to be closely supervised. And he chafed at confinement, seizing control any way he knew how and seeking out openings to forge out on his own: In 2011, his IEP singled out three behaviors: “grabbing at adults,” “going through other people’s personal belongings,” and “running in the hall.” He was described as running “all the time,” “throughout the day.” The following year, his IEP noted only some improvement: “Avonte transitions nicely from class to class. He does get excited at times and run[s] off.” 

Dar loves running. It’s the only time he’s really happy while inside our house. He “tee-tee-tees” (his noise) from room to room, giving himself a big windup so he can land on our couch. We allow it, of course. We are rather generous with any of the few things that put wide smiles on his face.

Kolker’s article describes Avonte’s transition to a new high school in Long Island City where most kids didn’t have special needs – quite similar to what the BUSD is currently recommending for us. The BUSD assures us that Dar would have an aide “at all times.”

The intermingling presented challenges for Avonte and, it would seem, for others. One day, another student bit Avonte on the arm. Fontaine remembers him coming home angry. When she called the school to see what happened, and asked why a child with an inclination to bite was with her child to begin with, the reply, Fontaine recalls, was that the school hadn’t looked at the other child’s IEP yet. Later on, she’d wonder if they’d missed Avonte’s IEP, too — if they knew about how he always liked to run. (Reports released last week by Richard Condon, the special commissioner of investigation for city schools, indicated that Avonte’s teacher may have told a paraprofessional that Avonte liked to run, but she hadn’t informed anyone who was with him the afternoon he actually did.)

What a nightmare. EVERY parent wants to find that balance of supervision and letting your kid find his own way. Every parent hopes their kid’s school will at least be aware of that precious balance. I think that’s why Avonte’s story has chilled so many people to the bone. Basically, he was coming back from lunch with a group of other freshmen, and he wandered off.

Seconds after he ran off the line, Avonte emerged on the first floor. One security video shows that he came out of the stairway and looked around, seemingly out of curiosity. In front of him was the building’s front security desk where a school-safety agent was seated. Others were there, too — a father and a daughter. The daughter ran behind the desk to give the guard a hug. Avonte walked past them nonchalantly, a hand in his pocket.

The guard came out from behind the desk and was standing, talking with the father and daughter. For the briefest of moments, she was facing away from Avonte. Which was when it happened. A camera on the exterior of the building picked up the image of Avonte darting out the side entrance of the school. The sun was shining, and the scaffolding around the school cast dark shadows. Across the street, Avonte could have seen the new waterfront park, a strip of green with a grid of sidewalks, walking paths, and bike lanes, all welcoming him.

He didn’t hesitate. He jogged down the sidewalk for a few yards underneath some scaffolding, then veered left along the crosswalk and towards the park entrance, dipping out of view when he jogged behind a small truck. This was the last confirmed sighting of Avonte Oquendo alive — bounding across the street, not looking back. 

The article goes on to describe missed opportunities and mixed messages. The guard, Bernadette Perez, may have been defensive about her job when, in the moment, she told administrators that Avonte had escaped up the stairs but not out of the school. This led to an hour of wasted time locking down and searching the school.

I’m done quoting the article. Kolker tells the rest of the story well – read it. To summarize, people looked everywhere, people combed the river, subway announcements blasted for days, missing signs went up all over New York, Mayor Bloomberg called the event “a tragedy,” Avonte’s family sued the city for $25 million, parents hugged their kids a little tighter, Senator Chuck Schumer advocated mandatory tracking bracelets for kids like Avonte, and 3 months after Avonte disappeared his corpse emerged out of the East River.

Sometimes I do wonder about my son’s metaphysical place in this civilization. Philosophers have asked: if a tree falls in the forest, does it make a sound? I ask: if no one can talk to you, do you really exist with the rest of us?

I know how lucky Dar is, how lucky our family is, and it’s partly because autism is understood as a serious, nationwide epidemic in a way that it wasn’t when Avonte was first diagnosed. I am truly moved by people’s sympathy. Oddly, this concern – the vaccine debate, all the blue on Autism Awareness Day – is coming at the same time that social services are being gleefully slashed all over the place. It’s like America is going on a diet on the same month that it’s getting *really* into cronuts. (Maybe this isn’t such a crazy metaphor.)

Somewhere the rock meets the hard place, like it did for Avonte’s family. Somewhere the hand-wringing stops, and social services like public schools show their limits. (Remember that a private school can always kick out a kid like Avonte or Dar, if they feel he’s being too disruptive, or really for any reason. Only a public school has an obligation.)

Look, I realize Avonte is an unusual case. Every year, a few kids somewhere die on playground structures. Do we stop taking our kids to playgrounds? Still, it’s hard for me to reflect on Avonte’s light without looking with new light on a huge decision that wifey and I have to make before September – do we go with the BUSD’s recommendation of inclusion, or do we make a go of it somewhere else, perhaps with me teaching him in our house?

I really don’t know. That’s why I call upon the resting soul of Avonte Oquendo – beautiful, wonderful one. Avonte, what should we do?