Monthly Archives: January 2014

Avonte

Posted on by findingmykid
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By now we use only his first name: Avonte. Last Tuesday afternoon, a friend texted me to ask about the whether a snowstorm had hit us yet. I texted back that we had three or four inches on the ground already, that I was worried about Martin getting home from school, and that I could not stop crying. “They just confirmed that it’s Avonte,” I wrote, to explain. The friend and I had never discussed the matter before. Still, she knew what I meant.

If you live outside the New York area, maybe you don’t know. He was Avonte Oquendo, he was 14 years old, he had autism, and he was nonverbal. On October 4, 2013, around midday, he exited his public school in Queens’s Long Island City neighborhood, alone, and vanished.

More than three months later, on January 16, a human arm and legs and a sneaker were found in College Point, Queens, along the shore of the Whitestone Bay. Over the next few days, divers found a second arm, and teeth, and clothes that looked like Avonte’s, and finally a skull.

Last Tuesday, five days after the first remains were found, DNA confirmed what no one had wanted to admit. Avonte was never coming home.

Avonte’s special-education school “shared space” with both a mainstream high school and a mainstream middle school. This is a common practice in New York City, whereby entirely separate schools, each with its own administration and faculty and student body, operate within one building. The students intermingle in common spaces; an adult or fellow student who saw a teenage boy slip out of a building full of typically developing kids might have no reason to realize the gravity of what transpired.

None of the administrators or staff at Avonte’s school had passwords to access the security footage that showed him leaving through an unattended, unlocked side door. The school officials apparently believed for some time that Avonte, who was unaccompanied by any aide, was hiding somewhere in the multi-school building. An hour passed before anyone notified the police or Avonte’s family.

Once the police were notified, they began duly searching. Yet, as far as I can tell, there was no immediate, massive effort to put eight million New Yorkers on the lookout. I am a constant media consumer, listening to the radio and checking bulletins throughout the day. I found out from a Facebook post that Avonte had disappeared. I didn’t see it on the news until hours later. Days passed before “missing” posters were widespread. A week-and-a-half passed before the search expanded to New Jersey and Long Island, despite Avonte’s known fascination with trains.

A red tent in front of Avonte’s school served as headquarters for a volunteer search effort, led by Avonte’s family. At least one member of his family was in that tent 24 hours per day. Nothing helped. Their beautiful, vulnerable child was just gone.

For me, Avonte has become a symbol of the reality—and with every day, I believe more that it is a reality, not a notion or a possibility—that our society isn’t going to care about autism until it’s too late.

Avonte should never have been unsupervised in a building with unguarded doors. The instant he slipped outside, the police should have known. Everyone should have known. We have the AMBER Alert™ program to recover abducted children. We have no corresponding program for the safety of missing persons on the spectrum, despite the tendency of many to wander or bolt. Avonte is gone. We’re left slapping our foreheads and saying, “Gosh, we should have done more to prevent that.”

Autism rates are exploding. The increase isn’t due to “greater awareness and diagnosis”; there are more and more cases across the spectrum, not just on the high-functioning end where diagnosis might have been an issue in years past.

Some other numbers increasing concurrently are chemicals, antibiotics, GMO’s, environmental toxins, electromagnetic fields, radio waves, and the number of recommended childhood vaccinations. (Yes, I believe vaccinations are connected with autoimmune disorders like those underlying autism. Excoriate me.) Is any one of these increases causing the rise in autism rates? Are all of them together? I don’t know.

I would like to think that one day, I hope not too far in the future, we’re going to start getting some answers, but probably not. There doesn’t seem to be much funding available for studying topics like autism rates in vaccinated versus unvaccinated populations, or the effect of electromagnetic fields on synapses in developing brains, or whether pesticides harm beneficial bacteria in the gut.

We’ll wait until the autism rate is one in 10 boys, or one in five, or one in two, and then we’ll say, “Gosh, we should have done more to prevent that.”

I’m sorry, Avonte. I’m sorry, Avonte’s family. We let you down. Every one of us. We let you down.

Avonte Oquendo

The Club

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Adrian and I attended the Metropolitan Opera last Friday, to hear Russian soprano Anna Netrebko perform Adina in Donizetti’s Elixir of Love.

Adrian was super-duper excited about this event, really quite out of his mind. He adores all things opera, Anna Netrebko is his favorite soprano, and we narrowly escaped disaster, insofar as Ms. Netrebko fell ill and had to cancel her January 9 and January 13 performances. We’d long had tickets for Friday’s performance, and that happened to be her return.

I was mildly excited about the opera, which is four degrees north of my usual reaction to opera. My usual reaction to opera can be summed up as, “Are the Rangers playing? No? Okay, I’ll go to the opera.” I was mildly excited Friday because Ms. Netrebko and her former partner, the Uruguayan bass-baritone Erwin Schrott, have a son named Tiago who is about Martin’s age and who also has autism.

I feel a kinship with parents who have children on the spectrum. The kinship extends as well to celebrities. Doug Flutie (just from a football perspective, the Bills should have kept him, not Rob Johnson!), Dan Marino, Toni Braxton, Sylvester Stallone, Aidan Quinn, that “real housewife” from New Jersey, of course Jenny McCarthy and Holly Robinson Peete—I know them all, even the stars who appear to have children with autism but don’t comment. (Not going to call out any celebrities here. My family also has chosen not to “go public” with Martin’s diagnosis.) I want to support all these celebrities and their careers, because in some way, they know what we’re going through. They know us. We’re friends, even if we’ve never met and this post makes them think I’m a stalker. The fact that Anna Netrebko’s son Tiago has autism means that I want to see Anna Netrebko perform. I want to cheer her on.

Adrian says he doesn’t feel the kinship. Without trying to speak for Adrian, I think he just wishes he weren’t a member of the families-affected-by-autism club. But we are. Regardless of whether, or how long, Martin remains on the spectrum, we’re in the club for life.

It isn’t that misery loves company. I’m not miserable, and I don’t think autism should make any family miserable.

It’s that hope and understanding multiply. It doesn’t matter whether other parents choose biomedical intervention, or homeopathy, or only traditional behavioral therapies. The point is that they want to help their children. We all want to help. What a cool club.

(One more thing about Friday evening: Mr. Schrott, Ms. Netrebko’s former partner and Tiago’s father, was also on stage, playing Dulcamara. He was fantastic. Apparently he and Ms. Netrebko broke up recently, so every time they sang together, I was thinking, “Oh, awkward!” Maybe I’m just a celebrity gossip-monger after all.)

(Okay, one more “one more thing” about Friday evening, this one for readers who’ve stuck by me for a while: Adrian and I were seated next to a retired schoolteacher from Berkeley, who said he flies to New York once or twice per season to catch a string of Met performances. We started talking about which productions he’s seen, and he mentioned Madame Butterfly. What did he think? I asked. “I liked it,” the schoolteacher replied, “except for the puppet. That ridiculous puppet ruined the show for me.” I could have high-fived him.)

Goodbye on His Own

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Special education means special transportation. Martin does not have to wait at a bus stop. Instead, a bus (yes, it’s the short bus) picks him up at the end of our driveway and delivers him back after school.

(Hurray! We have a driveway, and we live on a dead-end lane. Waiting for the bus is so much easier than when we had neurotypical kids parading past.)

When Martin comes home, I walk to the end of the driveway to meet him, and once he’s off the bus we follow a little ritual. (According to the principles of RDI, I vary the ritual slightly each day, to facilitate Martin’s dynamic intelligence.) I ask him how his day went, take his heavy backpack—containing a lunch cooler with glass and/or stainless-steel containers, a stainless-steel drink holder, multiple notebooks for my communications with his classroom teachers and his therapists, and sometimes spare clothes—and hold his hand while we wait for the bus to turn around at the dead end. Then I remind Martin that we need to wave good-bye to the bus driver and the matron, and I count to three, and we wave together as the bus passes us and beeps.

Yesterday afternoon something new happened. As usual, Martin took his time to descend the three steps and land on the driveway; he still tends to look forward instead of at his feet, so big stairs can be challenging. He walked two steps toward me, as if to begin our ritual—

Then, instead of coming to me, he turned around by himself, waved through the still-open bus door, and called to the driver and matron, “Goodbye! Goodbye! See you tomorrow!”

This may be one of those occasions when I need to explain, for anyone not raising a child with autism, what the big deal is. The big deal is twofold: (1) Martin did something different, and (2) he displayed awareness of those around him and their needs. He realized that the driver and matron were leaving, and that people who are leaving expect goodbyes.

Martin says goodbye a lot. He does so after I say, “We’re going. Let’s say goodbye,” or, “What do we say now, Martin?” I cannot remember a previous occasion on which he wished someone goodbye unprompted. Will he do it again this afternoon? Maybe. Maybe not. Often a new skill emerges, disappears, and then at some later date shows up in regular use. I’m less worried about consistency right now. The key is that social awareness is within Martin. With every bit that his body heals, we unlock more of the intangible.

Why, Hello Again

Posted on by findingmykid
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How does one restart blogging?

I’ve been thinking about that. Mostly while lying awake at night and also wondering why the [redacted] I’m not blogging. But still.

And ta-da!: The plan I’ve conjured, the blogging redux after seasons of silence:

An update.

I’ll offer my readers—in the event I retain any—tidbits about where we stand now, and then, my blog restarted, I’ll pretend like I never was away.

1. We’ve left the City for the suburbs. New York, New York, no more. We moved June 4 to a ranch house, situated on 1.15 acres in a town where many of our neighbors prefer another NHL team to the New York Rangers. An autism diagnosis was one thing. This kind of upheaval—it’s disconcerting, to say the least.

2. Martin attends kindergarten at a private school for children with learning differences. His class has twelve pupils and multiple instructors. Adrian and I feel extremely lucky that Martin has the chance to attend such a school, never more so than this past weekend, when we attended one classmate’s birthday party and watched Martin frolic with his new best friends.

3. Martin receives traditional occupational, physical, and speech therapy at his school. Saturday mornings I drive him into the City for two sessions of Anat Baniel Method (ABM) therapy. We continue working with a HANDLE therapist, and doing home-based exercises activities on the RDI approach. One evening per week Martin takes piano and drum lessons (the latter by his own initiative) with a certified music therapist.

4. We have not yet recovered Martin. We have, however, made progress, and a good deal of it:

•            Though he retains some patterns, Martin’s speech is rarely rote anymore. He has some quirks, such as substituting “but because” for “because” and adding “for” where it doesn’t belong, as in, “Can I have a piece of paper for to draw a picture on it?” Nonetheless, he can express his wishes, wants, and needs verbally, and well.

•            Martin can engage in conversation of six or more exchanges, so long as he is answering the questions (not asking them, which is a level higher). Here is an exemplar talk, which we had when he arrived home one day last week:

“How was school today?”

“It was good.”

“Did anything special happen?”

“We had a surprise reader!”

“Oh, yeah! Who was the surprise reader?”

“It was Quinn’s family.”

“Quinn’s family? His whole family came, not just his mommy or daddy?”

“His whole family came.”

“Wow! What was the book about?”

“It was about snowmen.”

“Did you like it?”

“Yes. I liked it. We made snowmen!”

Note that Martin, who once just “said things,” was speaking accurately. I confirmed later that Quinn’s mother, father, and older sister had all come to do the surprise reading, that they’d read a book about snowmen, and that they’d helped the class with a snowman-making craft project.

•            Lethargy is a thing of the past, and Martin’s “floppiness”—his tendency to fall onto anything within reach—diminishes every day. His core strength has improved, insofar as he is as likely to sit up as to slouch. His manual dexterity is such that he grips a pen appropriately for writing and drawing, he can manipulate small items like pills, and he uses his hands independently for drumming. (That last achievement might not pertain to dexterity per se.)

•            Martin takes a keen interest in his peers: what they eat, how they play, the structure of their families, where they live. He requests play dates. What he still lacks is a solid understanding of how to interact with friends. We’re working on that.

We vacationed recently at a resort area. When Martin was having trouble engaging any other child there, I would approach the child’s parent and say something like, “I think my son would like to play with yours. My son has Asperger’s, and he’s never quite sure how to go about making new friends.” “Aperger’s” sounds much less scary than that other A word, I think it’s pretty accurate for where Martin is now, and the parents I approached responded uniformly positively. Martin made a couple of “vacation friends” that way.

5. Martin still exhibits “autism” behaviors. He perseverates. A lot. This has been an issue forever. Right now he prattles endlessly about traffic lights, hair length, the time, and the moon. He also has three prominent stims (self-stimulatory behaviors), which become more pronounced when he’s tired or detoxing. The stims are running back and forth, making a slurp! sound by sucking air through his lips, and carrying or playing musical instruments. And of course, Martin can be rigid. He wants to wear his blue vest every day, drive one particular route home, read Pete the Cat or Knuffle Bunny books every night.

6. I now understand “the long haul.” I think that, when I started the process of recovering my son, I didn’t really comprehend what how long one might need to haul. The mother who introduced me to biomedical intervention had largely recovered her son within two years, and was done with the process entirely within three years. I failed to grasp that her family’s timing was exceptional. I thought that by kindergarten we’d be done.

My family has been at this three years now, chipping away at the underlying health issues that exhibit themselves as “autism” in Martin. My son has made staggering process. If we never achieve anything more, I will know that our time and money have been well spent. Still, he is not recovered, and much work remains. Fortunately, I no longer fear that some mythical window will close while Martin is five (he’s five now), or seven, or any age. A mother of a recovered 14-year-old told me recently, “Our best year was when he was 12. Twelve years old is when he made the most progress.” Twelve years old is a long, long way off for Martin. If that turns out to be our best year, so be it. We’ll get there.

7. This year, 2014, is going to be extraordinary. Don’t ask me how I know. I can say this: I woke on January 1 with that feeling, and it has not left me. Martin will hit new milestones, and so will I. This past weekend I met with an old friend from law school. My friend used to work in venture capital but for the last year or two has been searching for a new path, something more creative. I told him that I haven’t been doing much writing, or much of anything else, because I’ve been so focused on Martin’s needs. Without warning, he turned to me and vocalized something I already knew: “2014 is going to be a banner year. For you, for your son, for me. I think this is our year.”

See you soon.