Avonte

Posted on January 27, 2014 by findingmykid

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

Posted on January 22, 2014 by findingmykid

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

Posted on January 16, 2014 by findingmykid

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 January 15, 2014 by findingmykid

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.

Madison Square [Expletive] Garden

Posted on May 28, 2013 by findingmykid

When I found out I was pregnant, I began to dream about what my child and I would share.

Maybe he would be a vegan. Maybe he would attend my alma mater. Maybe he would learn German. Maybe he would suck at all things involving music.

Maybe he would learn to love what I love, and want to do what I do.

What I love is ice hockey, and what I do is watch the New York Rangers. I have a season subscription “mini-plan,” which entitles me and a companion to show up to approximately one-quarter of the Rangers’ home games, occupy two seats very near Henrik Lundqvist (first and third period), and whoop like a drunken sailor.

Martin has been doing so well lately that I decided that the time has arrived. On April 27, a Saturday, I brought Martin to Madison Square Garden to watch the Rangers play the New Jersey Devils. It seemed like the perfect starter experience: It was the last game of the regular season, it was a 3:00 pm matinee, and although the Rangers and Devils are usually a good rivalry, the Rangers had already made the play-offs and the Devils were already ruled out, leaving little at stake and perhaps a less-rowdy crowd.

Martin and I arrived by 2:00. I wanted to bring him in before the big crush of fans, and to acclimate him before the cheering.

The first thing he asked for was a bottle of water, which I bought him, totally forgetting that the Garden vendors take the bottle cap away and make the bottle a giant pain in the neck to carry without spilling.

Next we headed to a fan shop to buy Martin a new Rangers jersey. Martin was already wearing a blue toddler-sized #30 Henrik Lundqvist jersey, but that was too small because he’d owned it since—well, in any event, since he became old enough for me to swaddle him in a Henrik Lundqvist jersey, sometime around his birth. At the shop I displayed the available boy-sized jerseys. Martin’s choices were a classic navy-blue #61 Rick Nash (master of the goal-scoring universe), an away-game white #24 Ryan Callahan (Cap’n Cally! upstate power!), or a home-ice blue #30 Henrik Lundqvist (yes, Henrik Lundqvist). Martin waffled for ten minutes before settling on the #30 Lundqvist: a larger version of what he already was wearing. Outside the store, he refused to wear the new, larger jersey like I asked. Instead, he spilled half the capless bottle of water and cried because it made his pants wet.

Five minutes later we were in our seats. Both teams were skating around the rink, pre-game practicing. Immediately I realized that, when I attend games with other adults, I do not accurately perceive the level of noise and other stimulation inside the Garden. It is like a rock concert in there. Music blares, the announcer yells, fans scream, lights flash, sometimes the entire inner arena goes dark.

With Martin by my side, these usually exciting aspects became threatening. He sat cross-legged in his seat, motionless except for intermittently covering his ears. I lifted him to see over the fans standing in front of us. I showed him Rangers in their blue jerseys and Devils in their red jerseys, each team skating around its own half. I pointed out Lundqvist in goal, wearing #30 just like Martin.

Martin continued covering his ears, then wrapped his arms around my neck and squeezed.

We retreated to the concessions level. I purchased a Brooklyn Lager in a cup, with a straw, because I am cool, and sipped some while Martin gazed through floor-to-ceiling external windows. I suggested returning to our seats. He replied, “I don’t want to go back to our seats.” We waited a while longer.

Once the first puck had dropped and play was underway, I insisted on a second try at the inner arena. Martin came along, glumly. He sat cross-legged again, and sometimes slouched down or flopped onto me. I followed the game as best I could. Ryan Callahan, the Rangers’ captain, flipped the puck into the Devils’ net for the game’s first score. The noise level rose even higher. I picked Martin up and bounced him along to the Rangers fans’ chant: “Goooo-o-o-o-o-al! Goooo-o-o-o-o-al! Hey, HEY, hey hey hey hey! Hey, HEY, hey hey hey hey! Hey, HEY, hey hey hey hey!” He covered his ears.

I can’t say that Martin was enjoying himself. But he kept it together.

Near the end of the first period, Martin reached forward and took a water bottle from a drink holder, thinking it was his own. Instead, Martin’s bottle was one drink holder to the left, and the bottle he grabbed belonged to a boy about ten years old, in the seat next to Martin. That boy seized the bottle from Martin’s hands, forcefully. (I think he might have been wary of Martin because of the slouching and flopping.) I apologized to the boy and handed Martin the correct bottle, and I could see that being startled that way had pushed Martin toward his breaking point.

During first intermission I escorted Martin to the quietest area I could find and asked if he would like to go home. He said yes. I explained that if we left we would not be able to come back into the arena and asked whether, knowing that, he still wanted to go home. He said yes. And so we headed for the ground-floor exits, where I told a security guard, “My kid isn’t feeling well. We’re going to watch the rest of the game from home.”

In the subway, Martin had what I think was a delayed-reaction meltdown. He became fixated on dictating which passengers could get off at which stations, and threw a tantrum when, inevitably, the passengers got off at the stations of their own choosing. I took Martin on my lap, let him cry, and then successfully distracted him by asking him to name the stops between Madison Square Garden and our home.

If you are the parent of a neurotypical child, the afternoon I’ve just described might sound like a disaster. We saw only one period of hockey, and I had to abandon more than half a beer, its forlorn straw sprouting toward nowhere.

To me, it was no disaster. It was a darn good start:

• Martin must have been overwhelmed by the noise, lights, and crowds. I can hardly imagine an environment with more external stimuli. Nevertheless, he held it together. He did not freak out.

• Martin returned with me to the seats even when he didn’t want to. I didn’t have to force him or bargain. He acceded to my wishes.

• With all that was going on, I wasn’t sure Martin would really comprehend what was happening around him. But he did. Ten minutes into the game, he had turned to me, in all the hubbub, and said, “Mommy, it’s just like when we watch hockey on television.” Ah-ha! We were experiencing hockey together!

This season, one period. Next season, two?

As Martin continues to recover, we will encounter more that he can share. Actually share, as in emotions exchanged. Adrian will take him to the opera. My brother Eddie will teach him to play backgammon. My stepfather will show him how to swing a golf club. My mother-in-law will make him sweat through Bikram Yoga.

The Rangers game was no unmitigated success.

Still, there was a time, not long after Martin’s diagnosis, when I wondered whether I would ever be able to take him to a restaurant in peace again.

I just took him to Madison Square Garden. Unassisted. If I were given to writing profanity, I would drop an F-bomb between Square and Garden, for emphasis, because that’s the kind of big deal I’m talking about.

Madison Square [Expletive] Garden.

OMG! Is that Henrik Lundqvist? No, wait. It's my Martin, checking out the Garden.

OMGosh! Is that Henrik Lundqvist? No, wait. It’s my Martin, checking out the Garden.

My Rainbow

Posted on May 6, 2013 by findingmykid

Martin and I were riding the subway Saturday morning. We had with us a rainbow that he had made in school out of construction paper and Froot Loops. (Ugh.) The following conversation ensued:

Me: “Martin, do you remember where you got this rainbow?”

Martin: “I made it in school.”

Me: “You know, Martin, rainbows make people happy—which kind of means that you’re my rainbow, because you make me so very happy.”

Martin: “I’m your rainbow.”

Me: “I think you are.”

Martin: “My name is Rainbow.”

Me: “Your name is Rainbow? Really?”

Martin: “No.” [Laughs.] “My name is Martin. I’m being a rainbow.”

Martin said those things, in that order. My kid said those things.

In professional ice hockey there exists an unofficial (and unsanctioned and probably unadvisable; check out The Last Gladiators) player role, known as an enforcer. An enforcer’s job is to keep the opposing team from playing too rough. For example, if an enforcer sees an opponent intentionally late-check a star player, the enforcer might respond by grabbing that opponent by the jersey and punching him several times, as a warning to leave the star player alone.

(Don’t be put off. If you’re not already an ice hockey fan, do please start watching. The combination of grace, strategy, and grit that carries a hockey team to victory resembles the traits needed to recover a child from autism. Honestly.)

Have you heard of the crazy Fred Phelps family from Topeka, Kansas? These are the people who—despite lacking affiliation with any Baptist denomination, and as far as I can tell, despite following none of Jesus’ major teachings—call themselves the “Westboro Baptist Church” and protest at high-profile or military funerals because, they claim, God opposes homosexuality. (I realize that sentence lacks substantive logical foundation. That’s intentional.)

Apparently these Phelps people threatened to show up at the funerals for victims of the recent Boston Marathon bombings. I saw something circulating on Facebook that I should have downloaded, because I can’t find it now. It was a picture of a Boston Bruins enforcer, during a game, on his knees, straddling an opposing player whose back was on the ice. The enforcer had his gloves off, which is dangerous because punches fall softer when the fist is padded by a hockey glove, and he was plainly beating the daylights out of the opposing player, whom he’d rendered defenseless. The caption under the picture said something along the lines of, “This is what we do to hockey teams we don’t like in Boston. Please, come protest a funeral.”

When Martin was diagnosed with autism, at 27 months, he could label objects and people and colors, and he could speak in echolalia, but he had no functional language. At 36 months, he had begun developing functional language but could not grasp concepts like first and second person; he said “I” when he meant “you,” and “you” when he meant “I.” By 48 months, he could respond to questions but could not engage in dialogue, i.e., carry a conversation beyond one response.

On Saturday, Martin sustained that rainbow discussion. He maintained consistent eye contact throughout. He ended by drawing a distinction between being called Rainbow and being a rainbow.

Please, come tell me recovery from autism is not possible.

Notes on a Wednesday

Posted on April 30, 2013 by findingmykid

Wednesdays, of late, are exhausting days for me and Martin. He plays hooky from school. We start the morning by driving more than 50 miles to Wilton, Connecticut to visit Martin’s new homeopath and, if it’s an appointment week, his biomedical doctor.

(Note to careful readers: We switched biomedical doctors five months ago, because Martin’s former practitioner moved to the West Coast.)

From Wilton, when our appointments are through, we get back in the car and drive more than 60 miles, back into New York State, across Westchester County and across the Tappen Zee Bridge and Rockland County, at last dropping into New Jersey at Ringwood, where Martin participates in hippotherapy. We eat lunch in the car: a sandwich for me, and Dr. Cow tree nut cheese with rice crackers for Martin. Then, while Martin spends an hour riding horses, I hike to a tiny farm and buy eggs.

Around 3:15 pm Martin and I get back into the car to drive 45 miles home. (Are you keeping track of all these miles?) Although it is the shortest leg of our journey, this takes the longest, anywhere from 90 to 150 minutes, depending on traffic getting back into and through the City.

Last Wednesday, on the morning drive to Wilton, I spent 20 minutes on the phone—hands-free Bluetooth, of course! I respect all traffic laws—trying to negotiate a good deal on the purchase of an infrared sauna. (More on that in a future post.) Martin was supposed to be practicing “being quiet while Mommy’s on the phone.” Instead, he grew increasingly agitated until he was sobbing while repeating, “You’re going to get off the phone! No more phone! You’re done with the phone.” I apologized to the sauna representative and finally, when I could barely hear him over Martin’s shrieking, aborted the call. Meltdown.

So that sucked. But three very cool things that did not suck at all also happened last Wednesday:

The update for Daddy: At the office of the homeopath—“Miss Lauren,” as Martin calls her—is a pile of toys. I was talking with Lauren when Martin appeared with a toy mobile phone in this hand and said, “Mommy, I’ve got a phone.” I replied, “Oh? Would you please call Daddy and let him know we got here okay?” Without further prompting, Martin nodded, hit a few buttons on the toy phone, held it to his ear and said, “Hello, Adrian? But because we’re at Miss Lauren’s. Okay. ’Bye.” (Martin is in a phase wherein he calls Adrian by his first name instead of Daddy or Papá. “But because” is a verbal tic that Martin has.) Comprehending my request? Pretending? Following a direction? Yes, yes, and yes, thank you.

The hippotherapy superstar: Martin does hippotherapy with a speech-language pathologist. Hippotherapy requires body awareness, multisensory activity, and concentration. Martin’s performance varies widely from week to week. (Martin’s performance on just about anything can vary widely from week to week, day to day, or even hour to hour. That’s the nature of the biomedical beast.) Last Wednesday, when I came to claim Martin after his riding lesson, his speech pathologist said, “He was awesome today. Awesome. Can you bring this version of the kid every week?”

The gesture of support: Do you remember my post from last Tuesday, about the best ways to be supportive of a family wading through autism recovery? It ended with these lines:

That’s all we really want, any of us, right?

A little faith, and a cookie.

When Martin and I arrived home from our three-state extravaganza last Wednesday—one day after I posted about how to be supportive—I found a package waiting for me. Inside was a card quoting those two lines. Under them, handwritten by the friend who sent this card, were the words: “Some of us need a whole box of cookies. Prayers to you and your family. Always.” Enclosed with the card? Yep. A box of cookies.

I’ve been reading the Thinking Moms’ Revolution new book of essays. In one piece, the mother of a boy on the spectrum is asking, “Why did this happen to my baby? What did I do wrong? Is God mad at me?” Her mother, the boy’s grandmother, intervenes and points out that, if things had been different, she would not be asking, “Why did God give me a healthy child?”, so she doesn’t get to ask “Why?” now.

Sage advice, right? What happened to my son—the Pitocin, the C-section, the antibiotics, the vaccines, whatever combination caused this autism—happened. But it doesn’t mean my life doesn’t rock steady.

It doesn’t mean I don’t live in a world of blessings.

The Wanaque Resevoir in Ringwood, New Jersey, where I hike while Martin rides horses. I took this picture with my iPhone a couple weeks ago. Life is good.

The Monksville Resevoir in Ringwood, New Jersey, where I hike while Martin rides horses. I took this picture with my iPhone a couple weeks ago. Life is good.

Support. The Supportive Kind

Posted on April 23, 2013 by findingmykid

Friends who know I have a son with autism mean well, but sometimes, even in their effort to be supportive, they say the wrong thing.

Here is the statement I hate most:

“All kids do that.”

Now, if you’re a friend of mine, and you’ve ever said about Martin, “All kids do that,” please do not worry. I know your heart is in the right place. I know you want to help. And this post is not directed at you, or at anyone in particular. Believe me, I’ve heard, “All kids do that,” from almost everyone within the limited circle that knows about Martin’s diagnosis.

I know from reading other blogs that I’m not the only parent who detests “All kids do that.” When someone says, “All kids do that,” then regardless of what that person means to convey, I hear one of two things:

1. “I know Martin has autism and all, but don’t you think you’re going overboard? Maybe you’re a little hysterical about the whole thing, or you like to complain?”

2. “I have absolutely no inkling about the realities of your daily life with Martin.”

Yes, I know that even neurotypical kids “have a favorite color.” On the other hand, if you board a subway and find that all the yellow seats are taken, can you expect your neurotypical kid to panic and run out the closing subway doors, without a care whether you are following? If your kid says the moon on his pajama top is yellow, and you suggest it might look more blue, do you assume bedtime will be delayed an hour while he howls inconsolably? Have you ever had to purchase napkins in different colors so that your family could practice sharing the yellows without a meltdown?

And I know that even neurotypical kids “tend to repeat themselves.” On the other hand, unless you live with autism, I am guessing that your kid has never lost awareness and stared into the distance, uttering some combination of words scores of times. I am guessing that your kid does not continue repeating even when he’s alone in a room, his words like a proverbial tree falling in the woods, and then falling again, and then again, and again. I am guessing that your kid’s brain does not get stuck in a groove so deep that he becomes physically unable to cease perseverating. There are times when Martin’s need to repeat himself—“Our President’s name is Obama. O-B-A-M-A. The last letter is A. Obama is the President. Do you know how to spell that? The last letter is A. Our President’s name is Obama. Do you know what our President’s name is? It’s Obama.”—reaches such intensity that, if I were to duct-tape shut his mouth, his arm or leg would have to flail in compensation until he could speak again.

(Don’t panic, dear readers. I’ve never tried any such thing. I just know it’s true.)

“All kids” do a lot of things. But they don’t do them like a kid on the spectrum does.

So what does help? What should someone say, if not “All kids do that”?

A friend of mine (let’s call him Ted) once lost several family members in a house fire. Ted and I lived more than a thousand miles apart at the time, so I wasn’t present for the immediate aftermath or the funeral. A few weeks later, when it was time for me to call, I asked another friend, Deb, what I should say to Ted. Deb is a minister, she’s wise, and her own father had died recently. She counseled (I’m paraphrasing):

“Say you’re sorry about the loss, and then talk about anything else. Follow his lead. When you’re grieving, distraction is a blessing.”

I called Ted and said I was so sorry for his loss and wished we lived closer together. He responded by asking how I was doing, and the conversation moved naturally to catching up on each other’s latest activities. We talked jobs, law (two attorneys, boring!), mutual acquaintances. Once, after a pause in the conversation, Ted said, “You know, they were so close to the door when they collapsed. It was the smoke. They almost made it out,” and I knew that Deb had been right. Ted’s mind was so consumed with loss that the twenty minutes we’d just spent talking about other topics were like a vacation for him. And immediately after saying, “They almost made it out,” Ted asked if I’d seen some movie over the summer. The house fire did not come up again.

When you encounter me, know that for at least 23 of the preceding 24 hours, I have had almost nothing on my mind except autism and recovery. I’ve been giving pills, cooking special foods, corresponding with parents on-line, reading about the latest treatments, cleaning air purifiers, mixing clay baths, filtering water, completing HANDLE exercises and concocting RDI games, fighting for a special-education placement, juggling therapy appointments, navigating social-work bureaucracy, keeping Martin’s doctor up to date, and worrying about what vaccinations are doing to our children.

You can ask me how Martin is doing. I will respond, “We have our ups and downs,” maybe add one or two recent achievements, and then move on. Here are suggested topics I would probably rather discuss than Martin’s autism:

• How are the Rangers play-off chances looking? Will Lundqvist win the Vezina a second time?

• Why is it still winter at the end of April?

• Is the new Jackie Robinson movie melodramatic? Does melodrama ruin a good story? Did it ruin Argo?

• Who is going to be the next mayor of New York City?

• WNYC reported that 70% of home sales in Brownstone Brooklyn are all-cash deals right now. Seriously, 70%?

• Is it okay to put a cat on Prozac?

You get the idea. There are a million things to talk about that are not autism.

And if you really, really want to talk about autism, say you support us. Adrian’s mother once set the gold standard in that regard. Adrian was visiting his country of origin and staying in the family home. One evening he and his parents and siblings crowded around a computer to Skype with me and Martin back here in the States. As it happened, that day Martin was at his worst. He would not sit with me or look at the computer. He failed to respond to any questions, or even acknowledge his father and grandparents and aunts and uncle on the screen. After 30 seconds I gave up and released Martin, who jogged around the room, yelling gibberish.

It was a painful moment for me, and though he didn’t say anything, I could tell it was painful for Adrian, too.

Evidently, so could Adrian’s mother.

After we finished with Skype, Adrian went out to dinner with friends. When he returned to the family home that evening, everyone else was in bed. On the kitchen counter was a note from his mother. Loosely translated:

“Martin will get better. I believe in what you’re doing. Love from Mamá.”

Next to the note was a plate with a cookie.

That’s all we really want, any of us, right?

A little faith, and a cookie.

Thinking Inside the Box

Posted on April 18, 2013 by findingmykid

Earlier this week, Martin entered the apartment with me and discovered that I’d left a box on the kitchen counter. It was nothing special, just an Internet purchase I had not opened since it arrived that morning.

Martin poked the box, looked at me, and asked casually—note that I try to avoid adverbs, so if I’m using one, read it in emphatic italics: So help me, he asked it casually—“Mommy, what’s in this box?”

The question was spot-on. It was relevant, directed (including eye contact), and succinct. He even got the intonation right.

Not impressed? Get a kid with autism.

Martin’s verbal skills are outstanding these past couple weeks. Like any parent of a recovering child, I’m digging through my notes, supplementation charts, lists of interventions, and so forth, trying to pinpoint what underlies the improvement. As usual, I have no idea.

Still, I love it when something’s going right.

Disney

Posted on April 16, 2013 by findingmykid

Two families we know with boys on the spectrum have made repeated trips to Disney World in Orlando. All four parents report hassle-free, autism-friendly vacations: luggage and organic groceries delivered directly to your villa (“Check a suitcase at LaGuardia. It shows up in your room!”); passes to skip the long lines for attractions; and a mix of exciting activities and, outside the main park, calmer spaces.

Adrian and I are considering taking Martin to Disneyworld. For me at least, I don’t want to go because I love Snow White or think Martin will be psyched for a magical castle. I want to do a Disney vacation with Martin because a Disney vacation is what American kids do. Right? Martin’s childhood, so far, has bypassed the standard markers. He attends a special school, he swallows a million pills and oils, he spends his afternoons in therapy, his friends have diagnoses, and he can’t eat—well, he’s not allowed to eat candy, or refined sugar, or McDonald’s, or processed food, or pizza, or anything much else I see in the hands of kids.

But he can go to Disney.

Despite the endorsement of other ASD families, we’ve been worried about whether Disneyworld really makes sense. It’s crowded. Noisy. Flashy. Crushing. Maybe the theme park would just overwhelm Martin.

Back in November, Superstorm Sandy led to an unplanned week without school here in New York City. In compensation, Martin’s school lost the scheduled February break but tacked two extra days onto the Easter break, and Martin ended up with eleven consecutive days without class. Martin and I utilized this vacation bonanza for his first-ever West Coast visit, to my brother Rudy and his wife in Laguna Beach.

Rudy came up with a great idea: As we were in Southern California anyway, why not take Martin to Disneyland? It could be like a trial run, a few hours at the original theme park that now seems like a junior version of the Orlando behemoth.

I jumped at the suggestion. On a Thursday morning Rudy and I collected Martin, his stuffed elephant, his afternoon supplements, and his special food and drove to Anaheim. We were headed, as we put it for Martin, to Mickey’s house.

I am pleased to report success.

The ticket agent gave me and Rudy and Martin big “I’m celebrating!” buttons; Martin insisted on pinning two buttons to his loose T-shirt, where they dangled all day. Inside the park he selected a fuzzy blue Sorcerer’s Apprentice hat (with mouse ears) to buy, and although it was 80 degrees and the thing was like a quilt wrapped around his head, he wore that all day, too. We stopped by guest relations. I explained that my son has autism and gave a little report on his strengths and weaknesses. The representative gave us an “accommodations” ticket allowing all three of us to use the special-entry lines, which are much shorter than the regular lines. And from there, we hit the rides.

With all the bustle, Martin was more distracted than usual as he wandered through the crowds. Nevertheless, he beamed. He rode “it’s a small world,” where he was scared to be in a boat but liked the children singing and the floating moon; flying Dumbo elephants, where Rudy showed him how to use the altitude lever; the Jungle Cruise, where the boat operator warned me before he fired a fake gun; and the carousel, which he handled like a professional based on weekends of carousel riding in Brooklyn. His favorite attractions were musical performances and the thrice-climbed Tarzan’s Treehouse.

Martin even survived the Roger Rabbit ride. Rudy and I assumed that because the Roger Rabbit thing was in Toontown, it would be mild. Holy cow, was that a mistake. It turned out to be a spinning car whipping us in circles through strobe lights, screaming, and demonic-looking animated characters. I was scared. Martin clung to me but didn’t cry.

We stayed in the park for seven hours. Seven hours! Martin got to bed late that night and slept well.

Two days later, on Saturday, Adrian surprised us all by flying into LAX. He’d ended up in Northern California on business and was able to sneak away for the weekend. Martin and I picked him up at the airport and then headed directly back to Disneyland for another seven-hour visit.

“Did you like Mickey’s house?” Adrian asked Saturday evening, back at my brother and sister-in-law’s house. “Was it fun?”

“Yes!” Martin said. He smiled.

“Would you like to go back to Mickey’s house again tomorrow?”

“No!” Martin said. He still smiled.

I think he was exhausted.

Everything in moderation. I’m sure that, by the time I manage to put together a family trip to Orlando, he’ll be ready again.

In his Sorcerer’s Apprentice hat, Martin enjoys music from the “New Orleans” bandshell. The drummer threw Martin some beads.

During the Saturday (second) visit to Disneyland, Martin and I headed once again into Tarzan’s Treehouse.

Back outside Disneyland, Martin and I strolled Balboa Island with Rudy and his wife (in front of us). I think we’re imitating them.

Martin enjoyed the views of Southern California. This shot was taken on Balboa Island also.

After we returned to New York, Martin enjoyed carrying his Mickey Mouse doll, as here on the Lower East Side with Adrian.

Finding My Kid

A parent's real-time blog of autism recovery. Start-point is a diagnosis of ASD. End-point is unknown.

Tag Archives: autism