When in a Rut, Turn to the Little Things

I wrote yesterday that Costa Rica isn’t boosting Martin as much as I’d hoped. I’m going to console myself today with more musings on the little things.

About Martin’s birthday-party weekend, I wrote recently:

Although Martin’s Friday-afternoon birthday party was likely the highpoint of his weekend, it was not the highpoint of mine. . . . Sunday morning, . . . Eddie took Martin to the birthday party of a classmate (!) at an indoor sports facility. They arrived 10 minutes late, and the kids were already organized into groups for a game. According to Eddie, as soon as he and Martin entered the facility, a boy yelled, “Hi, Martin!” and another yelled, “Come join our team!”

Hearing that report, dear readers, was the highlight of my weekend.

A week before the birthday party, Adrian and I had attended the third-grade concert at Martin’s school. The third-grade orchestra performed. Martin is not part of the orchestra; he has opted to wait until fourth grade and join the band instead. (He’s been selected to play baritone! Get a load of that!) After the orchestra’s two songs, the third-grade chorus took the stage. Every third grader, about 90 of them, sings in the chorus, Martin among them. Per the instructions we’d received, Martin wore a white dress shirt and a tie. Actually, it was a bow-tie he’d chosen himself from the selection of several neckties and bow-ties I’d offered. He stood very still, in the back row with the taller kids, no fidgeting, a serious expression on his face. He sang every word. When the recorder portion of the concert arrived, each third grader lifter a recorder to his or her lips, and so did Martin. He didn’t accidentally drop his recorder; that happened to a kid one row in front of him. Martin played the recorder notes as carefully as he’d sung. He was brilliant. What’s more, the kids performed one of my favorite songs, Louis Armstrong’s “What a Wonderful World.” I almost cried.

So what was my favorite part of the third-grade concert? Martin’s beautiful notes, raised in flawless timing with the other young voices? The way he took ownership and picked his own tie? The solemnity with which he executed the performance?

No. None of that. After the concert concluded, when the parents were rising from their seats, when the teachers were entering to claim their charges, and the third-graders were kind of milling about the stage, I watched Martin casually start talking to the boys on either side of him. I recognized the two boys as friends from Martin’s classroom, and I felt certain they’d been placed together by design—exactly the type of detail to which Martin’s wonderful teacher attends. There they were, three boys together, talking to each other. Like all the kids were talking to each other. That’s when I actually started to cry. I lowered my head in embarrassment and brushed away tears. (When I saw Martin’s teacher a minute later, she was brushing away tears of her own and said, “I can’t even.”)

Last night, we went out to dinner. Martin waited for me and my mother (she’s visiting) to place our orders. Then, by himself, speaking in Spanish, he informed the server that he can’t eat gluten, dairy, or soy; placed his order; and asked the server to confirm that the appetizer and entrée were appropriate for his diet. He capped the production by making eye contact and saying, “Gracías.”

This morning, when I dropped Martin at his day camp in Costa Rica, a boy exiting the car behind us called, “Hi, Martin!” and Martin turned to respond, “Hi, Zach!”

When things aren’t going so well, as generally they aren’t right now, I have a weapon against frustration: I have the way in which Martin’s recovery has transformed into joy the moments that most parents take for granted.

I mentioned that Martin has been chosen to play baritone in band next school year. Each student who’s joining band gave the music teacher three instrument choices, and auditioned on each instrument for the teacher to decide which fit best. Martin has taken two years of trombone lessons and (at his insistence) one year of drum lessons, so I was surprised when his three choices were saxophone, clarinet, and baritone. To me, he said only that he thought those would be best for him.

Subsequently, Martin’s psychologist told me what he’d disclosed to her: That he knew trombone, and especially percussion, were two of the most popular choices for third-graders. He was worried that, with his prior lessons, he might get percussion, and then other kids would be angry or upset with him if he took the very popular choice and did not do the best job.

This was the first time, Martin’s psychologist added, that she’d seen him exhibit such foresight, and put himself so directly in the minds of his classmates. This, she assured me, was a leap in social advancement.

See how that works? My kid was unjustifiably too worried to request the instrument he really wanted—and I get a victory out of the deal.

He Belongs

Martin asked, “Why is this school year going so much faster than last year?”

I answered, “It can seem like time goes faster when you’re having fun. Do you think you’re having more fun at school this year?”

He said, “This year is way better than last year. The kids are so much nicer, because everyone knows me better now.”

I don’t consider myself a superstitious person. Yet I hesitate to post good news on Finding My Kid. I ask myself, What if tomorrow things go bad again? If I say today that Martin is doing well, do my readers assume that will always be true? Isn’t it easier to admit when we’re going through a tough time, and thus to set a lower bar that subsequently I can exceed? Am I going to jinx his whole recovery?

Martin has a handful of friends now—friends he made himself instead of in social-skills group or otherwise organized by me. Despite April’s unsuccessful play date, I think the friend situation continues to improve. What follows is a series of texts from last week with Martin’s school behaviorist, Debbie. If you are a regular reader of this blog, you may recall that I affectionately refer to the behaviorist as Debbie Downer, because she never seems to hesitate in giving bad news, which makes these texts all the more precious:

He’s totally part of the class now. Today was another [happy] tear-filled day. I just watched him interacting with his peers and them calling his name across the room to share in a private joke or ask each other questions.

I wish this year wouldn’t end for him.

We have so many kids that we can choose from now to request to be in his class next year.

You know, you probably could invite the whole class to his birthday party if it’s not too late. If you’re concerned about a lot of rejections you wouldn’t even have to tell him that you invited everyone. You would just be happy with whoever showed up.

You guys should be very proud of your little boy.

When I pick Martin up after school now, we cross the parking lot to the sound of “’Bye, Martin! ’Bye!” The other kids are talking to him.

Last week Adrian and I attended Martin’s IEP meeting, where this progress was confirmed. The speech teacher recommended switching from a mix of one-on-one and small-group instruction to small-group only, on the grounds that Martin progresses better when he has other kids to talk to, instead of being just with a grown-up. The resource teacher said the same thing she said at our last check-in: that Martin does not need resource room. The classroom teacher echoed what Debbie had said. We all decided that Martin no longer requires a one-on-one aide. Next year, he will share the aide with another student. The idea is to pair Martin with a special-education student who needs more academic support and less social support. Martin, who apparently no longer needs much academic support, won’t have someone looking over his shoulder in the classroom but will retain the benefit of the aide in the wild west that is gym class, lunch, and playground.

Friday before last, Martin was invited to a classmate’s birthday party. (The mom had invited every boy in the class, but still, Martin was invited!) The party was at an indoor track-and-field center, and chaos reigned. (The mom had also invited every boy in the twin brother’s class, plus friends from outside school.) Martin was hardly leading the pack; sports aren’t his forte. Still, he did fine and did not freak out or melt down—even when a boy who bullied him last year but has since switched schools showed up unexpectedly. Martin kept his distance from that boy and just did his thing. At one point, I saw Martin and the birthday boy from his class walking with their arms around each other’s shoulders.

Sorry about all the italics. How can I help it?

I left Martin’s IEP meeting feeling like a million bucks. Last school year was so difficult, and I constantly questioned whether we had made a bad decision when we pulled Martin from his self-contained special-education school and placed him in our local public elementary. Here was a team of professionals agreeing that Martin, finally, is bridging the gap and becoming more like a regular kid.

The same day as the IEP meeting, I attended an allergy-awareness presentation at the school. On the way out I ran into a church acquaintance, a mom I barely know but whose kids attend both school and Kids’ Klub with Martin. She looked confused and asked me what I was doing there. I said I’d also been at the allergy-awareness presentation. She still looked confused, so I asked, “Did you know Martin goes to school here?” She replied, “No. I had no idea,” and then added, “Martin goes to this school?”

As a special-needs parent, I have a tendency to perceive slights against Martin. I could have interpreted this mom’s question as geographic, i.e., surprise because she didn’t realize we live near each other; our district has several elementary schools. But of course I didn’t interpret her question as geographic. I assumed that what she’s seen of Martin at church has convinced her that he doesn’t belong in mainstream school with her kids.

I said, “Yes, Martin goes to this school. Did you think he isn’t good enough? Why would you suggest that to me? I have news—your kids are hardly brilliant.”

Just kidding.

I said, “Yes, Martin is in Mrs. B—’s class.”

And I thought, “That’s just where he belongs.”

Hurray for the Detox

Three months ago, I wrote a post titled, “Take Heart. There Is Also More Than I Can Manage,” in which I described (1) believing that Martin needed a better detox protocol, and (2) feeling certain that we could not manage a protocol I found on the Recovering Kids/Regarding Caroline blog. I concluded by compiling an abbreviated—and still “aspirational”—plan for Martin:

  1. A foot bath during iPad time at least four days per week.
  2. Dry brushing Saturday (or Sunday), Wednesday, and Friday.
  3. Herx water before breakfast and after school.

I’m here to report that the abbreviated detox plan has been so successful for Martin that we now exceed the aspirations. He gets the foot bath four days per week. With limited exceptions, we are dry brushing every day, and Martin drinks herx water before breakfast, after school, and again before bed. Depending on how the day is going, I might even slip in a fourth herx water.

As to the dry brushing, the nightly routine arose through his own initiative. The first time we undertook the brushing, I expected him to get bored or frustrated. Instead, he stood patiently and asked to help me count the brush strokes: “one, two, three, four, five, six, one, two, three, four, five six.” I took a break the next two nights, not wanting to “overdo” the new routine. On the third day, Martin remarked, “Remember the brushing thing? We should do that again.” So we dry-brushed that evening, and Martin said, “We should do this every night.” Since then, he becomes agitated if I’m home and we miss a night.

As to the foot baths (which he tolerates) and the herx water (which he despises), the proof has been in the pudding. I wanted a new detox routine because of Martin’s constant silliness, which was impeding his social progress. When Martin is detox-y, he cannot control his laughing and his calling out, even when he knows the behavior is inappropriate. (This happens also when he’s yeasty, which I could tell was not the primary issue in January.) The silliness decreased almost as soon as we started daily dry brushing and, as of today I would estimate that the decrease is about 90%. Martin’s increased self-control has even led to a couple social breakthroughs. He’s made a few friends at school. The school behaviorist, whom I like to call Debbie Downer because she shares so much negative news, sent me these texts yesterday:

Hi. All good reports. Minimal silliness this week. More peers going to Martin and interacting with him.

Data are looking good, and consistent. Will be picking new targets but need to think about them, as he’s doing well. Pace of unpacking and packing [his backpack] up.

Remember when I told you that you know when a kid makes it when everybody else starts to copy them? Well they’re starting to copy some of the things that Martin does.

All good news! What are they copying?

Some of the silly behavior. Blurting out “Mister Poopy Pants” or something like that from Captain Underpants, or calling out “ice cream” just out of the blue.

They think it’s funny so they do it as well.

            Oh . . . fab . . . .

Yes. Teacher loves it, lol.

Of course, despite these advances, life is no bed of roses. It never is. Those his self-control has improved in almost every other area, Martin remains fixated on a girl from his taekwondo class, Abby. He can’s seem to stop bothering poor Abby, alternately calling her cute and ugly, pushing her, running into her. When I confront him, he cries and says, “I don’t know why I do it! I just can’t control myself around Abby!”

Also, Martin’s skin is a mess, even worse than before we started the detox protocol. I think clearing pores and stimulating the lymphatic system, which dry brushing is designed to do, makes something I wrote six years ago just as true today: “[Martin’s] digestive tract isn’t as good as it should be at spitting out bad stuff, so his skin overcompensates.” He picks at the scratches, sores, and tiny bumps covering his limbs. I avoid the spots carefully when dry brushing. The weather has remained chilly this spring, so I have him wear long sleeves to school, but that won’t last forever. The school nurse already phoned me once to say Martin couldn’t stop scratching his arms. I attributed the behavior to dry skin, because really, how am I supposed to explain to a traditional school nurse that antimicrobial killing of bartonella and babesia can produce a lot of toxins, which we are managing through an extensive daily protocol? It’s hard enough to explain the whole thing to you, dear readers, and I know you are educated sorts.

Difficult Come, Easy Go

Two years ago, I wrote my only post ever titled in all-caps: “MARTIN MADE FRIENDS.” I described how Martin finally managed to make friends in a scenario not arranged by adults: He rode his bicycle across the street to play with the twin girls who live there. I also admitted that the friend-making appeared limited to the specific situation—the same week, Martin bombed a play date and failed to speak to another neighbor girl. I predicted that making friends might be one of those skills that pops up, disappears, and then reemerges to stay.

The friendship with our twin neighbors faded, once other kids got involved. That fall, Martin transferred to the same school as those girls, and they joined the school-bus bullying fiasco. Martin tried sometimes to make friends at recess, but his classmates rejected him, and we were left with only playmates from his social-skills group and former special-education school.

Twenty-four (long) months later, fledgling friend-making is back. A month or two ago, as Martin and I were walking to the car at afternoon school pick-up, a boy ran up and said, “’Bye, Martin! See you tomorrow.” Martin replied, evenly, “’Bye, Manuel.”

“Martin,” I asked in the car, “who was that boy?”

“That’s my friend Manuel. He just moved here from Texas.”

“Is he in your class?”

“No, I met him at recess.” Martin said this matter-of-factly, as if he were constantly making new friends on the playground.

I asked Martin whether he’d like to invite Manuel for a play date. He replied that he would.

The next afternoon, I introduced myself to Manuel’s grandmother, who picks him up from school because his mother works. The grandmother said, “Oh, you’re Martin’s mom! Manuel talks about Martin. Let’s get them together.” We arranged a drop-off play date, at our house. The play date lasted two hours, which is a long time for Martin to hold it together and pay attention to another kid, but he managed, and the affair went pretty well (some bumps, resolved with agreement to watch a spooky video together). Thereafter, Martin reported playing with Manuel at recess several times. Once he said, sadly, that Manuel had decided to play soccer with some other boys instead. I suggested that Martin consider asking to play soccer too, but he said he was sure Manuel and other boys would say he couldn’t play. The next day, however, Martin announced that he indeed asked to play soccer, and that the boys had said yes, and that he had played soccer. I was overjoyed.

Most recently, Martin invited Manuel to “bring a friend” day at his taekwondo school. I consider this Martin’s first self-generated, sustained friendship. Manuel is a cheerful and polite boy, slightly clumsy and overweight, in a mainstream classroom and receiving limited (very limited, by our standards) special-education services. I don’t envision him and Martin ever becoming the coolest kids on the playground. That’s fine by me. Adrian and I were hardly cool kids, either.

Martin plays Minecraft on his iPad. Back in February, he asked me to buy him a particular Minecraft book he’d seen two classmates reading. I did so gladly, because Martin hates reading, and I’m happy for anything that gets him looking at words. Then Martin asked for a plush Minecraft zombie, and then for a plush Minecraft baby zombie. I hesitated, as Martin is nine years old and doesn’t need any more stuffed animals, but relented on the basis that the Minecraft theme might be a way to connect with other kids. I made the right choice: Martin’s teacher and behaviorist both said that a couple boys from class asked Martin to play with his zombies, and subsequently that the three of them were sitting together talking Minecraft at lunch and snack time. Martin himself said, excitedly, that he’d played “zombie chase” at recess with his “friends.” His request for the plush toys appears to have been calculated, for the purpose of attracting positive attention. Good work.

Martin also has reported that playing more with Lucas. Martin has known Lucas since fall 2016, when they shared a desk, and we’ve attempted play dates with him before, without too much success. Now Martin says the two of them have invented a game that involves hanging upside-down on the playground slide and yelling, “Help me!” (Um, okay . . . .)

In sum, over the last couple months, Martin has cultivated a playground repertoire. He plays with Manuel, he engages in Minecraft-related activities with classmates, or he hangs out on the climbing equipment with Lucas. When none of those options is available, Martin says, he sits and reads a Minecraft book. Last year he spent virtually every recess alone on the swings. The swings have been removed due to ongoing construction at Martin’s school. I was scared of what that removal could mean for recess, but he seems to be weathering the storm. He’s made a few friends.

And now—just a few months after moving here, Manuel’s family has decided to leave. The cost-of-living in our area is too high, Manuel’s mother says, and they aren’t able to make ends meet.

Martin is losing his first real, independently found friend. He’s crushed.

So are we. Adrian asked me, “Could we lend them money? Help pay for their apartment? Anything?” He wasn’t serious, of course. We can’t go around sponsoring families to make sure Martin has friends.

Even if we might do just about anything else.

The Beginning

This is the second post in response to last month’s reader comment asking, “I’m very curious to know where you started. I have gone back and searched the blog and couldn’t find a journey type of blog. Can you write about this when you can? When did you get diagnosed, what were your earliest challenges? Where did he stand verbally when he was diagnosed?”

I’ve described from time to time Martin’s condition before we started biomed. Here I will try to rope those descriptions into a single post, divided into two parts: (1) my memories of our realization that Martin had challenges; and (2) our initial neuropsychological evaluation, completed a month after we began biomed.

All of this will be written with a caveat. That is, from ages two through five, Martin had additional biological and behavioral manifestations of his immune disorder that, for privacy reasons, I do not discuss on Finding My Kid. Although this blog is written anonymously, nothing in this on-line age can ever be completely anonymous, and so I err in favor of protecting Martin’s dignity, and our family’s.

My Memories

Martin was born early summer 2008, in circumstances that I have described elsewhere and that I am certain contributed to the immune challenges he would later face. His first 18 months out of womb raised few eyebrows. After initial trouble latching and correction of a tongue-tie (many biomed parents see a correlation between tongue-tie and autism), Martin nursed well, for 22 months total. He started solid foods at six months.

Remarkably, at just 17 days, Martin could roll over, front-to-back. He did so in front of his pediatrician, who said, “You should videotape that.”

Martin also picked up words, so many words that to us, as first-time parents, he seemed to be “advanced”—whatever that means. He could give the nouns for objects to which we pointed. He could repeat lines of dialogue from movies and television shows. Wow! Adrian and I thought. We’d never heard, at that time, of echolalia.

Looking back with the hindsight of almost eight years in the world of autism, I recognize at least four red flags before Martin turned two. First, despite his ability to say words (lots of words), Martin never began to develop any functional language. He never combined words independently. Although he learned how to say and use “no!”, he failed to grasp the concept of “yes” or “I.” Second, Martin never took interest in other kids. He never reached the level of parallel play. Indeed, he never even seemed to notice when other kids were present, never walked up to or investigated them. Third, he could exhibit extreme hyperactivity, to the point of being unable to stop moving. He ran in circles for long periods of time. I could put him into his oval-shaped crib for a nap and return to find him running tiny laps around the edge of the mattress. Fourth, the sleeping troubles started early. We sleep-trained successfully at seven months old. Within six months, that had ended. Martin began taking longer and longer to fall asleep (60 minutes, 90 minutes, two hours) and waking frequently throughout the night.

Adrian and I finally began to recognize a potential problem around the time Martin turned two, in summer 2010. Samara, Martin’s nanny, invited some neighborhood kids over for cake to celebrate Martin’s birthday. When I observed the group, Martin stood out. He didn’t appear to be part of the group. The other toddlers came excitedly to the table for cake; Samara had to chase Martin repeatedly to get him to the table. Martin wasn’t able to blow out the two candles. He couldn’t make his lips into a pucker. He appeared to have trouble focusing on the task.

In general, Martin wasn’t listening. He couldn’t follow any direction, no matter how simple. If I held out a toy and said, “Here,” he walked away without taking the toy. He participated in Soccer Superstars. When the activity was “kick the little orange cone,” a dozen toddlers kicked little orange cones. Martin bolted to the next field and tipped over a goal. Because we were starting applications for selective private preschool—this really does seem an eternity ago—we enrolled Martin in the “Twos Club” at the Manhattan-based, for-profit “City Kids Club” (not the real name). When we signed Martin up with City Kids Club, they said they could help. They wouldn’t coddle him. They’d teach him to listen and to follow directions. It didn’t work out that way. When the Twos Club let out, half a dozen toddlers would sprint from the classroom and into their parents’ arms, showing off the art projects they’d made. Martin would wander out last, appearing not to notice me, shuffling under the direction of a staff member who carried his incomplete art project. (Eventually, the City Kids Club kicked Martin out of the Twos Club, an experience I recount here, under the subheading “Whence My Anxiety?”)

I called an old friend who was working upstate in Early Intervention. We talked by phone several times over the summer and, in September 2010, she was able to make a day trip to the City. She arrived late morning, and by mid-afternoon, she said, “I know this isn’t easy to hear, but based on what I’ve seen, Martin has autism.”

Martin’s autism was never entirely regressive; the autism was classic, insofar as there were skills he simply never acquired when he should have, like language or interest in peers. On the other hand, I recognized later that, during summer and autumn 2010, Martin was regressing. He lost the ability to point to distant objects. He lost eye contact, almost violently so: His determination to avoid locking his gaze on mine would lead him to twist his neck so far in his stroller that I feared he might injure himself. The hyperactivity began to alternate with extreme lethargy, when he would lie on his side, humming and pushing a toy car back and forth. He began drifting, walking the perimeter of our apartment’s large main room, dragging his fingertips on the wall to a sing-song sound. And his sleep, already poor, degenerated to almost non-existent. He could no longer fall asleep unless physically restrained. On the worst nights, Adrian and I had to work together, one of us securing Martin’s legs and ankles while the other lay half-upon Martin’s upper body and pinned his arms. Even then, Martin would clench and unclench his hands, roll his head, move however he could. When he finally slept, it would last no more than two hours or so. There were no more naps, ever.

Martin had the habit—I don’t remember if he did this always, or if it started around two years old—of going slack. When he grew frustrated, or didn’t want to do something, he let his body collapse onto the ground and stayed there, sometimes also screaming. Transitioning (moving from one activity to another) frustrated Martin, so he spent ample time, gelatinous, on the filthy subway floor and mats around the supermarket check-out.

He bumped into everything. When he ran, his head flew side-to-side and his limbs exploded in all directions. Low in muscle tone, he sat in the W position. He toe-walked. If he did take an interest in another child, he thrust his face uncomfortably close, as if trying to discover what it is that makes humanness.

During these days, these days I’ve just described, I saw my husband cry, the only time in our 18 years together.

IMG_9989

Martin observing London Bridge, from the Tower of London vantage.

The Professional Analysis

We changed Martin’s diet in January 2011 and began biomedical interventions in February 2011. The next month, March 2011, we brought Martin to the developmental neuropsychiatry program at one of New York City’s leading hospitals, where he was evaluated over four separate visits. The report, presented to us in April 2011, concluded with a diagnosis “according to the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM-IV-TR, 2000): Axis I: 299.00 Autistic Disorder.”

Here are selected findings (from the two examiners, as opposed to the parent interviews), as written in the report:

  • In the area of communication, Martin used a number of single words to label and some learned phrases, such as ‘I want . . . .’ He repeated ‘No’ frequently when he did not want to do something. Frequently his expressive language was not directed at anyone in particular. He pointed directly at objects but not to show interest in an object at a distance.
  • “In the area of reciprocal social interaction, Martin did not consistently use eye contact to engage others. . . . . He did not respond to the examiner when she attempted to call his name on four attempts but did so immediately when his mother called his name, though he did not look at her. He responded to the examiner’s pointing to the remote control bunny rabbit, not to her gaze and vocal prompt.
  • “In the area of restricted and repetitive behaviors, Martin gazed at the wheels of a truck repetitively and repeated ‘Hello’ over and over as he held a toy phone.
  • “Even though his mother remained with him, Martin had significant difficulty transitioning to the examiner’s office and into the structured testing environment. During testing, he was easily distracted by specific interests, specifically with letters and numbers, and this interfered with test administration at times.
  • “Compared to other children his age in the normative sample Martin’s overall performance on the [Mullen Scales of Early Learning, AGS Edition] was significantly delayed; he performed better than 2% of similarly aged children. His Early Learning Composite score is approximately two standard deviations below and suggests some delays in his cognitive development. Additionally, he demonstrated more unevenness in his cognitive skills than would be expected. His nonverbal, fine motor skills are a particular area of weakness and very low for his age, and his nonverbal, visual reception skills are also mildly delayed.
  • “Martin’s current repertoire of adaptive skills is somewhat more limited than would be expected for his age. His Adaptive Behavior Composite of 78 classifies his general adaptive functioning as moderately low; he scores better than 7% of other children his age. . . . [His mother] notes that he is making progress and attributes it to improvements in his sleep and the DAN protocol that was started 1½ months ago.”
  • Martin’s Early Intervention teacher “completed the Achenbach Caregiver-Teacher Report Form for Ages 1½-5 based on her view of his behavior over the past 2 months. . . . Her primary concerns relate to Martin’s inattention and his passive noncompliance throughout the day. . . . Martin is noted to sometimes use scripted language and to display delays in both his receptive and expressive language. He often does not answer when people talk to him and sometimes avoids looking others in the eye. He is sometimes disturbed by any change in routine. He is somewhat upset by new people or situations and may resist entering a new environment at school. He will occasionally place play-doh in his mouth.”

At the time we received the report, April 2011, I skimmed but did not read it thoroughly. The exercise would have been too disheartening. Instead I invested myself wholly in biomedical recovery, and trusted that we could make this better.

There you have our starting point.

IMG_0005

Martin discovering his inner knight at the Tower of London.

Awareness

A few months ago, Martin stuck part of a toy—the pink hand of a rubber action figure, perhaps; we reached no conclusive determination—in his left ear, which his MAPS(-ish) physician (“Dr. E”) discovered during a routine check-up. The next day we trooped over to an ENT specialist for removal. That doctor proposed placing a hollow cone with lighted tip into Martin’s ear, then reaching through the tip with a long tweezer sort of device to grab the “pink thing” (as Dr. E had dubbed the object). The procedure, if Martin held still, would be painless and last only a second or two.

Martin let the doctor peer into his ear but drew the line at the tweezer thingy plunging in there. Each time the doctor got close, Martin yelled, cried, struggled, and protested, hands clenched over his ear. The doctor was all patience, leaving the room while I calmed Martin and returning to try again, and again, for almost an hour. Finally the doctor suggested that we restrain Martin, and I agreed. I took Martin on my lap, crossed my legs over his, and held his wrists straightjacket-style. The nurse used her palms as a vice to steady Martin’s head. Martin screamed “NOOOOOO!” The doctor put the hollow cone in place and deftly, immediately, extracted the pink thing. He hadn’t lied: Once we had Martin still, the procedure took less than three seconds.

Martin stopped screaming immediately. His body relaxed. He studied the pink thing now in the doctor’s hand. Then he said, “That didn’t hurt at all. I guess it was just my anxiety making me scared for no reason.”

What kid is this? I asked myself. Admitting he’d been wrong? Musing on the role his anxiety played? Holy self-awareness.

That was in September. Since then:

>He asked me if I could send something to school for him to chew on instead of his pencil eraser, because he feels like he needs to chew but doesn’t want to keep ruining pencils. (I rummaged through a kitchen junk-drawer and found a silicon pencil-topper.)

>When I asked him why he was jumping in the living room one afternoon—jumping and hand-flapping are rare behaviors nowadays—he replied, “I have some extra energy that I want to get out so I can stand still when I go to taekwondo.”

>While he still won’t admit to being tired, ever, he will make comments like, “I really don’t think I should be up this late,” or, “Maybe I don’t need to read before bed tonight.”

He even said to me, before Christmas, “Mommy, do you remember when I used to be real shy and have trouble talking to people? That’s getting better. Now I can talk to people.”

In the seven years since he was diagnosed, Adrian and I have never told Martin that he has, or had, autism. I guess maybe we’re going to call his spectrum disorder “shyness.” I can live with that, at least for now.

So we’re getting a lot more self-awareness. With self-awareness, on the other hand, comes awareness of the challenges that still distinguish Martin from his peers. He asked to reduce his services at school (physical, occupational, and speech therapy, plus resource room) because he dislikes being pulled so often from the classroom. Then he acknowledged, “I guess I have to keep going to OT because my handwriting still isn’t as good as the other kids’.” He wants to join the school band next year, playing either trombone or percussion. He asked, “Mommy, what if next year the band teacher kicks me out because I can’t concentrate?”

I’m very thankful that Martin is suffering less anxiety these days and has better emotional control. The Friday before Christmas was belt testing at taekwondo. Most of Martin’s friends (as always, I use “friends” loosely) from his green-belt class—the kids with whom he achieved green belt together in September—were awarded blue belts. Although he has attended more practices than any of those friends, Martin was not eligible to test for blue belt, because he’s had trouble mastering the new forms and doesn’t have the third stripe on his green belt yet. Adrian took Martin to taekwondo the next afternoon, and I warned him that Martin might become upset or even have a meltdown when he saw his friends with their new blue belts. (The Saturday class is combined orange, green, and blue belts.) But he didn’t. According to Adrian, Martin became upset when he realized I’d forgotten to pack his green belt (way to go, me!), calmed down as soon as the dojang lent him a belt for the day, and never said a word about missing the blue-belt test.

It was September when Dr. E spotted the pink thing in Martin’s ear and sent us to the ENT specialist. In November we had another appointment with Dr. E. That morning, Martin said, “Dr. E won’t find any pink thing in my ear today!” When Dr. E went to look in his ear, Martin said, “Dr. E, you won’t find any pink thing in my ear today!” So I couldn’t believe my ears when Dr. E said he saw a pink object in Martin’s ear. Plainly, Martin thought he was being funny and had shoved something in his ear for Dr. E to find. Back to the ENT specialist we went. This time the object proved more difficult to dislodge, and Martin had to hold himself still while the doctor threaded a noisy vacuum tube into the ear canal. Martin did beautifully. Not a peep during the 20-to-30 seconds the doctor needed to extract what appeared to be a chunk of pencil eraser.

Martin gave me various stories about how the eraser entered his ear, ranging from “no idea” to “I had my head resting sideways on my desk while other students were throwing erasers around.”

Increased self-awareness—yes. Increased maturity—not so much.