It’s Hard to Blog an Avalanche

Monday evening Martin and I filling our birdfeeders, in front of the house, when the UPS truck pulled up. My UPS guy and I share a special bond: We’re both New York Rangers fans. We hadn’t talked since June 13, when the Rangers dropped the Stanley Cup finals to the Los Angeles Kings, so we started to chat hockey emotions. Were we heartbroken? Proud? Was this transition season—the Rangers have a new coach—the start of a dynasty? Would we miss Brad Richards?

Martin approached, listened for a second, looked at the UPS guy, and said, “Oh, hi!”

Goodness, I thought. Martin just addressed a stranger, without being prompted. That’s new.

“Hey, little man,” the UPS guy said and patted Martin’s head.

Martin remained while the UPS guy and I finished our conversation. (We will miss Richards! But his time has come!) Then I said to the UPS guy, “All right. Have a good week.”

And Martin said to the UPS guy, “Well, okay, ’bye. See you later.”

Goodness, I thought. Martin just interpreted my social cue and said goodbye, without being prompted. That’s new.

When Martin does something new, and appropriate, and typical, I remind myself to blog. Often I make a note so I’ll remember to write the event. If you’ve been reading this blog a long time, you know about the first time Martin said, “I don’t know,” and the first time Martin interactively shared a toy, and even the first time he understood that my outstretched hand meant I wanted a napkin from him.

The past few weeks have brought so many firsts that blogging them all would be a heavy burden. The firsts are tumbling one atop the other. Thus—

When I brought Martin to playgroup in the City last week, we were late, and his friends were already downstairs. Martin proceeded directly downstairs.

No distraction from the upstairs toys? No direction needed? No dawdling on the steps? That’s a first.

Thursday morning Adrian, fresh from the shower, in a t-shirt and black boxer-briefs, was helping Martin get dressed for school. I overheard this:

“No, Daddy. I don’t want white underwear!”

“What’s wrong with white underwear?”

“I want to wear black underwear, like you. And black socks, too.”

Noticing what Daddy is wearing? Wanting the same for himself? First.

This weekend Martin was in our pool when I asked if he wanted some water. He replied, “No, I’ll have a drink when I’m done swimming.”

Providing more information than I asked for? Thinking ahead? First.

Sunday my brother Eddie was visiting to watch the USAPortugal World Cup match. When Jermaine Jones scored in the 64th minute, tying the game 1-1, Eddie leapt to his feet and whooped. Martin, startled, covered his ears with a pained expression. Then he looked at me, lowered his hands, giggled, and said, “Oh, that scared me!”

Checking my face for reassurance? Immediately recovering from a sensory overload? Laughing at himself? Unsolicited emotion sharing? First, first, first, first.

Seventeen minutes later, Clint Dempsey scored, giving USA a 2-1 lead. Eddie whooped again. Adrian jumped in happiness. I lifted Martin, used my right arm to hold him on my hip, and ran around the family room thrusting my left fist in the air as I shouted, “Yes! Yes! Yes! Yes!”

As I recovered, I realized that Martin, still on my hip, was thrusting his itty fist into the air and shouting, “Yes! Yes! Yes! Yes!”

Independent participation? Imitation just for the heck of it? Not quite a first, but close enough—never before so vivid, or so immediate.

(Better not to ask what happened when Portugal’s Verela scored in the final minute of stoppage, preventing USA from clinching an early second-round berth.)

Monday afternoon Martin and his friend Christopher were in a children’s waiting room, ostensibly overseen by Christopher’s older brother, Benjamin, while I met with Christopher’s mother. When I entered the waiting room, Martin and Christopher were wrestling, gleefully, amidst a pile of toys as Benjamin laughed.

“What on earth are you two doing?” I asked.

Martin looked up from under Christopher and replied, “We’re banging and yelling!”

I assumed Benjamin had accused the younger boys of this. I asked, “Who is banging, and who is yelling?”

Martin said, “I’m banging, and he’s yelling.” Then he returned to struggling with Christopher.

Fully interactive play? Answering questions even while epically distracted? Pretty darn new.

Fifteen minutes later, Martin and I were driving home when he read aloud the name of Steely Dan’s “My Old School” from the radio screen. I took the opportunity for conversation and asked Martin the name of his old school, his preschool. He responded correctly. I followed up by asking which he prefers, his old school or his new school (his kindergarten).

“My new school.”

“Why do you prefer your new school?”

“But because I learn better there.”

Expressing a legitimate preference, and backing it up with a reason? First. Not to mention—I do think he’s learning better in kindergarten. His kindergarten really targets his needs in a way that preschool did not.

On New Year’s Day, I sensed that 2014 would be extraordinary. The banner year may indeed have arrived:

This past month has comprised an avalanche of firsts. I could go on and on. But I will address just one more, the evolution getting on the school bus. In just two weeks, we’ve progressed from me carrying Martin’s backpack and leading him by the hand down the driveway to the bus; to me carrying Martin’s backpack and coaxing him to follow me down the driveway; to me carrying Martin’s backpack and accompanying him as he walks without protest to the school bus; to Martin carrying his own backpack while I follow him; and finally to Martin walking down the driveway, alone, backpack on, and boarding the school bus while I wave from the front step. If I even try to follow Martin, I get a swift, “No, Mommy. You wait here!”

Am I proud? I’m darned proud.

And sorry.

I mean, Martin’s bus driver is also a Rangers fan.

I miss the morning hockey chit-chat.

On another occasion, Martin (right) with Christopher's big brother, Benjamin.

On another occasion, Martin (right) with Christopher’s big brother, Benjamin.

Preferences

Martin has three rain jackets. The first raincoat he acquired when he was two years old. It is a yellow hand-me-down, big enough for a nine- or ten-year-old, from our then-neighbors. The second and third rain jackets are blue and red, and sized much more appropriately for a kindergartner. Samara bought them for Martin a couple years ago.

For a long time, Martin preferred the yellow raincoat, even refusing to wear the blue or the red. He didn’t seem to care that the yellow raincoat was so big that it bunched around his knees, got tangled between his legs, sometimes tripped him. Yellow is Martin’s favorite color. At the first sight of a raindrop, he wanted that yellow rain jacket.

We’ve had a lot of rain lately. To my surprise, Martin selected the blue rain jacket to wear, twice in a row, and then the red rain jacket.

This week it rained again. Five minutes before the school bus was due, Martin and I had the following conversation:

“Which rain jacket would you like to wear—the yellow one, the red one, or the blue one?”

“The red one.”

“The red one?”

“Yes. No! No, the blue one!”

“You want to wear the blue one?”

“Yes.”

“Martin, why don’t you like to wear the yellow rain jacket anymore?”

“But because the yellow one is too long.”

“You don’t like the yellow one because it’s too long? Thanks for letting me know that, Martin.”

Two biggies in that convo: First, Martin told me a plausible reason for his preference. And even though he made his “but because” mistake, he stated his reason plainly and appropriately. Second, Martin rationally chose not to select the yellow item. Kids on the spectrum like repetition. They like sameness. So does Martin, but perhaps his “stuck in a rut” mentality is beginning to loosen.

What’s next? Actually accepting an orange subway seat, if the yellow ones are all occupied?

I dare to dream.

Taking advantage of one of the sunny days. Learning to slide down a pole---to put both hands on, leap from the platform, and wrap his legs---has been a big achievement for Martin.

Taking advantage of one of the sunny days. Learning to slide down a pole—to put both hands on, leap from the platform, and wrap his legs—has been a big achievement for Martin.

What Comes Last

A couple years ago—hard to believe how long we’ve been at this—I lamented to Martin’s (then) biomed doctor that, while Martin’s behavior, sleep, and overall health had improved, I had not seen as much progress in his language. The doctor told me not to worry. “Language,” she said, “often comes last.”

I carried that mantra for a long time: Language comes last. When it took Martin so long to start asking questions, or to use the command form, or to pick up nuances and idioms, I thought, well, language is going to come last.

Or will it?

This year, Martin’s language is much improved. As I’ve written, his speech is not perfect. It often sounds scripted, or rote. Sometimes it seems like he’s exploring a foreign language: Unable to find the easiest or most direct way to express himself, he searches his capabilities and comes up with an unusual (original?) formulation. And his receptive language, his processing delays, still poses challenges; I might be explaining to Martin that we’re going out after lunch, only to have him melt down because he wants lunch, and the “going out” part has registered but not the “first, lunch” part. At his time, he still very much needs the intensive-language-based school program he attends.

That fact notwithstanding, Martin can speak. He speaks in sentences. He asks questions. He orders me around. When he’s not frustrated and mixing up his words, he can express himself, in a manner understood by most anyone who listens with care.

To that extent, language has come.

Language has come, and it did not come last.

Martin’s recovery has two additional, gigantic roadblocks that are not language, though language-related.

First, Martin still can’t “attend.” He doesn’t pay attention. He doesn’t listen. He talks when others are mid-sentence. Unless an activity is one he enjoys (music, eating, drawing), he shows little interest in what others are doing. And even when something does catch his attention, he doesn’t stay with it for long, except for example to stim by hitting one music key repeatedly, or to read his favorite book, The Philharmonic Gets Dressed, over and over.

Martin’s teachers have identified attending as his most significant challenge in the classroom; even with a 3:1 student-teacher ratio, he has trouble following. At home, the nanosecond attention span means it might take Martin 20 minutes to change clothes, because he gets distracted, or succumbs to boredom and starts complaining instead of dressing. It also keeps us from sharing experiences. If I say, “Oh, wow! Look at that bird!”, Martin might glance out the window, then jog away before I can comment on the bird’s color or size, or he might not look at all.

So language didn’t come last, because language has developed more than attention.

Second, Martin still has a lot of trouble socializing.

When we were in Austin around Easter, I arranged a playdate with “Stewie,” the six-year-old, typically developing son of a college friend. Martin and Stewie had never met, and Stewie was not informed in advance that Martin has challenges. We met at a crowded playground. The playdate went remarkably well. Although Martin was less interactive than an NT child would have been, he didn’t spend the playdate in his own world. Several times (some with prompting) he went to find and engage Stewie. He and Stewie stood together and gazed at an inchworm hanging on Stewie’s finger. When one family at the playground brought out a bubble pumper, Martin joined the other children, clapping his hands and chasing the bubbles. Stewie never even shot his mom that quizzical look that means, “Is there something different about this kid?”

The experience with Stewie gave me a sort of high. I texted Adrian: “Martin is having a playdate with a typically developing boy, and he’s doing FANTASTIC!”

But of course, in autism recovery, disappointments find a way to deflate any high, and four days after Martin played with Stewie, we had a much less successful playdate back in New York, with four classmates from Martin’s kindergarten. Martin attends a school for children with speech and language delays. About half the kids in his class also have autism or some other social impairment. By coincidence, none of the four boys other than Martin who attended this playdate had any social impairment. They are the social kids.

What happened was typical of what we experience when Martin attempts to play with more than one child at a time: Martin was left out. In a one-on-one situation, a playmate has few options other than to engage Martin. In a multi-kid situation, those without social impairments gravitate to each other, and away from the awkward boy.

Martin’s classmates, at the playground where we met, decided to fight dragons. They scampered about as a group, swinging imaginary axes, wielding nonexistent swords, screaming with excitement at the game they’d created.

Martin climbed on rocks and monkey bars. He went down the slide and wandered across the playground’s bridges. When I suggested that he join his classmates’ game, he approached the crowd and, using the social skills he’s been taught, ask shyly, “What are you doing?”

But the other boys were too boisterous and engaged to hear, and they ignored him.

Martin sat down, alone.

As he and I were walking to the car to return home, I asked, “How was the playdate? Did you have fun?”

My son responded, “No. I would like to do a playdate with only grown-ups.”

The next morning, Martin said he did not want to return to school. Thinking that he was experiencing end-of-spring-vacation blues, I tried cajoling him with his favorite subjects—“Do you think maybe you will have computer class today? What will you make in art class?”—and enumerating his classmates. “Do you think Christopher will be there? Are you looking forward to seeing Jack, and Quinn?”

When I finished my song-and-dance, Martin shook his head and said, “No. My friends at school don’t like me.”

Some defeats just crush your soul, don’t they?

So language didn’t come last, because language has developed more than socialization.

Which begs the question: What’s going to come last?

How will I know when we’ve reached our destination?

Martin, in the blue and white stripes, joins in bubble fun during his playdate with Stewie.

Martin, in the blue and white stripes, joins in bubble fun during his playdate with Stewie.

So

I’ve written before about a phenomenon I call “slow-motion childhood”: When your kid struggles for what typically developing kids acquire naturally, you notice micro-steps. Maybe you even get more moments for celebration.

I picked Martin up at school this afternoon. I do that on Tuesdays, so that he, assisted by a special-education teacher, can participate in “Kids’ Klub” at our church. (Yes. Spelling “club” with a K just about kills me. But that’s what they call it.) From the backseat, Martin started talking about the satellite-radio music. He fixates on music: “Mommy, do you hear a bass guitar?” “Mommy, are they playing live?” “Mommy, is there clapping in this song?” Lately he’s taken to memorizing which song I like best from every singer or band we hear. “Mommy, ‘Bennie and the Jets’ is a good song, but it’s not your favorite song by Elton John. You’re favorite song by Elton John is ‘Goodbye Yellow Brick Road’.”

In sum, Martin talks about the music. From his booster seat, he can lean to the side and read the name of the artist and song, every artist and song, on my SUV’s radio screen. There are times when Martin’s reading skills are not as pleasing as you might think.

Martin’s spoken language is pretty solid these days; he can combine words and concepts, and figure out ways to express layered thoughts. “Mommy, were those two songs both by the BeeGees?” “Mommy, George Harrison used to be in the group The Beatles. This is a solo song from after when he was with the group The Beatles.” Still, and even apart from the perseveration, there can be an awkwardness, and a rote pattern, to Martin’s speech. He recycles phrases. New expressions arise rarely.

This afternoon, our first conversation, while on a familiar topic, had a speech breakthrough.

 “Mommy, this song is by the group called Heart. I don’t like the song.”

“I don’t like this song very much, either. I’m not a big Heart fan.”

“You don’t like this song?”

“No.”

“So change it.”

There it was. Did you catch it?

Martin used the word “so” as a coordinating conjunction, in a manner in which the precedent construction—my not liking the song—was unstated and implied. What Martin was saying was, “Because you don’t like this song, you should change the station.” What rolled off his tongue was the casual, idiomatic, and perfect, “So change it.”

So … do you even need to ask?

I changed the station.

Otherwise

Are you wondering what Martin said last night?

Last night Martin said, “Otherwise.” He came up with the word. He used it properly and in context.

You’re thrilled? You can’t believe it? Here’s what happened:

Adrian and I put Martin in bed at 8:00 p.m. Martin was all worked up, absolutely could not go to sleep. We are fighting yeast again (Martin versus yeast overgrowth, round IV, get your tickets now) and started nystatin on Friday. Martin’s doctor warned me that we might have a difficult week with yeast die-off; so far, our “difficult week” has entailed diminished attention and focus, fleeting eye contact, and unrelenting hyperactivity. Fabulous.

After an hour of bouncing on his mattress and (needlessly) visiting the potty, Martin started yelling the he wanted to go in “the big bed”—my and Adrian’s bed, where Martin is allowed only in the morning, to wake up. Adrian, exasperated, suggested that we let Martin fall asleep in our bed and then move him back to his room. I agreed but said it had to appear to be Adrian’s idea alone, so Martin wouldn’t start thinking he can bug me for big-bed access.

Adrian called Martin to the family room, where we were watching House of Cards. I hid behind the sofa (Adrian’s idea alone!) and listened. Adrian told Martin that he could take a stuffed animal and climb into our bed, on one condition: that he settle down and go to sleep. Did he understand?

“Yes,” answered Martin. “I will go to sleep. Otherwise I will have to go back to my bed.”

That was it! No prompts, no hearing anyone else say it first, nothing. Martin casually lobbed “otherwise” into the conversation, as if it were an everyday word.

As if he’d never once tested in the bottom third percentile for expressive language skills.

Now, if only he’d settled down and gone to sleep….

Idioms All His Own

We had to wait a few years, and now Martin’s speech skills are finally progressing. He has trouble with more complex formulations, such as asking and answering “why” questions, or narrating a string of events, or using “did” plus the infinitive instead of the past form (“He did went.”). Other than that, he can express almost anything.

On the other hand, when I say Martin can express almost anything, there’s a qualifier: “in his own way.”

Sometimes he’s making up words. I go with it and use the correct term in return:

“Martin, I don’t want you writing on these piano keys.”

“No writing?”

“No.”

“No marking?” (He means using a marker to write. That’s close.)

“No.”

“No pencing?”

“Nope, no using a pencil.”

“No craying?”

“Nope, no using a crayon, either.”

Sometimes his formulation leaves me wondering, “What led him to that way of saying it?”:

“Martin, would you stop playing with the telephone?”

He’s in the bedroom, messing around with the bedside phone.

“Okay.”

He keeps playing with the phone.

“Hey, get out of the bedroom.”

“Okay. I’m going to go to the room that’s written here.”

He points to the side of the phone, where “family room” is written on the extensions. Then he zooms away to the family room. Most people would have said, “I’m going to the family room,” right? Martin’s choice works just as well.

He likes to make comparisons. Some are natural and make a lot of sense, as when he asked me, “Am I going to have two [Anat Baniel Method] lessons with Miss Sharon today, just like I had two lessons yesterday with Miss Verena?” Or this morning, when he wanted to go to the basement and play the various musical instruments Adrian has relegated there: “I have many instruments in the basement, like a concert.”

Other comparisons—not so natural. Martin likes to drink a kombucha beverage with chia seeds. This morning I asked what he wanted to drink with his (neverending) breakfast. He responded, “I wanted kombucha with a group of seeds in it. Like a singing group.” Chia seeds like a singing group? Does he really think that, or is he experimenting with uses for the word “group”?

I suppose that, as his language continues to improve, Martin will speak more like other people. I’m trying to write down these little Martin-isms now, while we’ve still got them. They represent one more special mile in the recovery marathon.

My Rainbow

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.