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.

I Mean, I Just, It’s—Well, It’s a Lot

You may have noticed I just took a couple months off from Finding My Kid.

I mean, I’ve still been finding my kid. I just haven’t been blogging about the process.

These last couple months have been some of the toughest of Martin’s recovery so far. We have arrived at a time when Martin perceives what other kids think of him, and wants to make friends and influence his own popularity, but lacks the tools to achieve those goals. Martin has social awareness without corresponding social facility.

The situation is crushing.

Since my last post, the classroom improved—at least by Martin’s own reporting, which grows more detailed by the day. “I saw a fifth-grader named Cody in the hall who I know from taekwondo, and I said ‘hi’ to him and he said ‘hi’ back, but then on the playground there was a third-grader named Alice who used to be on my bus and didn’t say ‘hi’ to me.” Since Martin spoke up for himself, his classmates have begun to show him more courtesy, and attempt to include him more, even if Martin doesn’t always reciprocate. Some days Martin even exclaims, “Oh, everyone was so nice today!”

Other days, when I retrieve him after school (he’s a “walker” now), he looks downright dejected. Or we will stay after school, on the playground, and I watch other kids reject him.

And he still seems haunted by the bus experience. Two months have passed, yet he still tells us how unkind the kids were, cries at night, and seeks assurance that no one from the bus will be invited to his birthday party. He worries that kids from the bus might be in his classroom next year.

Most problematic now is the playground, at recess with the entire second grade, not just Martin’s class. Martin reports that even the kids who are being much kinder in class do not want to include him on playground. These dispatches come daily: who wanted to play with him or didn’t, who told him to go away, who refused to answer when Martin asked a question.

We’re working with the school. The principal has agreed to pay for a presenter to come next year and speak to the entire third grade about differences and inclusion. (I wish now that we had thought to do this when Martin moved into public school last September.) She also substituted a fun-loving young TA for Martin’s regular one-on-one aide (a protective grandmotherly type) during recess, to organize games in which Martin can participate.

Martin’s teacher helps, too. A classmate named Ethan announced, repeatedly, delightedly, that he planned to invite every boy in class except Martin to his birthday party. The teacher pulled Ethan and Martin aside, where Ethan admitted saying that everyone except Martin would be invited, and explained that Martin had been annoying him by getting in his face before school. Martin said that he understood that getting in Ethan’s face might be annoying, and that he would try to do better with that. All in all, a decent resolution was reached—though I certainly don’t anticipate receiving a birthday-party invitation. Martin’s teacher also has given the principal input on what teacher Martin should have next year, and which boys should (and which should not) be in his class.

I will admit that I’ve gone so far as to consider changing Martin’s school again. Right now, that plan is in abeyance. Adrian wants Martin to stay put, Martin says he wants to stay put, and I have to admit the benefits of having Martin in the local public elementary. He finally feels integrated in the community: He sees the overlap between church and school and play group and taekwondo and even the local supermarket. We’ll see, though. If third grade begins with bullying, a change may be in order.

I’m Going to Need to Explain It Better

Well, this was bound to happen, sooner or later.

Over Thanksgiving, I brought Martin supplements as he was playing in his bedroom. He swallowed them without liquid, as he does for all pills other than Li-Zyme Forte, which he calls his “hard-to-swallow pill.” I don’t usually deliver supplements to Martin’s bedroom; we do them in the kitchen, preferably with meals. On this occasion, with my family visiting for the holiday, I was trying to get a jump on the evening protocol and make dinner a more normalized affair.

Without looking at me, still drawing a picture on his easel, Martin asked, “Why do you give me these pills?”

Ooooo. Okay. I said, “Remember when we talked about your tummy having troubles, and how when your tummy has troubles, it can make it hard to pay attention?”

“Sure.”

“These pills are meant to help your tummy work a little better.”

“Do my friends take pills?”

“I’m not sure about all your friends. Bobby does, and so do Z and Jackson.” Those are friends whose families treat their autism and other challenges biomedically.

“Some of my friends take pills, but not all of my friends?”

“I think that sounds right.”

“Okay,” Martin said. “I’m drawing a picture of the Beatles.”

“I like it,” I said, relieved that he’d changed the topic.

The conversation left me with two take-aways:

  1. Martin is bound to ask the questions again, and probably won’t let me off so easy. I’m going to have to think carefully about how to respond.
  1. One of these days, I’m going to get hit with the bomb. Martin is going to ask, “Do I have autism?” We came close once already. We were out to dinner with friends when Martin, who took especial interest in street signs around the time, asked, “Mommy, what’s a ‘Child With Autism Area’?” I responded that a sign like that means that drivers should be extra careful because a child who lives nearby might not realize how dangerous it is to be in the street. Then Martin asked what autism is. As Andrés and our dinner guests listened in silence, I responded, “Autism is a condition that can make it difficult to pay attention to what’s going on around them, or difficult to talk to other people.” I waited, mildly panicked, for Martin to ask whether he has autism. But he didn’t. He changed the topic. Bomb dodged.

Goodbye on His Own

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.