Polar Bear Under Siege

Studies have found widely varying rates of other psychiatric problems among people with autism, depending on the population studied and the methods used. Those co-occurring conditions include: depression (affecting 2 to 30 percent), ADHD (affecting 29 to 83 percent), OCD (1.8 to 81 percent), and other anxiety disorders (2.9 to 35 percent).

Look at the foregoing paragraph. Again, please. Now keep those statistics, disparate and divergent as they are, in mind as you read this post and the two or three posts that will follow.

Martin is in a general-education classroom for the first time. The other pupils don’t like him. We know.

Remember when I forecasted that language would come last? I was wrong. Aside from a lingering habit of pronouncing “th” as “f,” Martin’s phonology is solid. Semantically and syntactically, Martin comprehends and expresses himself at or above an age-appropriate level. His language is caught up, except for social/pragmatic language. What actually come last, it turns out, are social skills.

Adrian and I have been worrying about how the gap in social performance is affecting Martin’s self-esteem. Last month, we decided to have Martin start seeing a psychologist, to help him deal with feelings of rejection. I made the relevant inquiries with parents in town, and we were able to find a local practitioner who has significant experience with social anxiety and ASD/ADHD. Adrian and I met her first. We charted Martin’s course from birth (and outrageous unnecessary NICU) to present. We said Martin acts upbeat but we know he’s masking other emotions. I told her about the night Martin asked me whether it’s okay if no one likes him. The conversation with the psychologist made us sad, both me and Adrian. I’m pretty sure, because later I asked Adrian, “Did that conversation make you sad?”, and he replied, “That conversation made me sad.”

Martin visited the psychologist for the first time on a Monday evening. I brought him, and worked in the waiting area while he and the therapist met. At the end of the session, the doctor invited me in and showed me what Martin had created: A castle scene in which a hapless polar bear was beset by a crowd including dragons, knights, and several kitty-cats. The doctor made several statement/questions like, “The horse is the leader, and the unicorn is following, and the polar bear wants to go back inside?” Martin agreed with her. I surmised that her comments were made, at least partly, for my benefit, but if I was supposed to be following along, the doctor had wildly overestimated my powers of intuition.

The whole shebang, to me, seemed like get-to-know-you play, but—something happened. The psychologist unleashed a force. What it was, I don’t know. (Relatedly, who the hell was the polar bear supposed to be?) The next day, Tuesday, this ensued:

I met Martin at the school bus stop at 2:45 pm. He exited the bus and walked directly to me, without engaging other kids. That was usual. He also looked depressed. Really, really in the dumps. He stared at his feet as he walked. I asked, “Are you okay? Did something happen?” He replied, “Oh no, I’m fine,” and followed up with, “I had an excellent day at school. Let’s go home.” On the brief trip from the bus stop to the house, I asked a few more times whether he was upset. Martin continued to deny that anything had happened. I took him to taekwondo and to church Kids’ Klub. No mention of anything.

Adrian arrived home in time for dinner, so we three ate together. Adrian finished first, and then left the table to take a business call.

Martin asked, “Do you and Daddy think I’m weird?”

I replied, “I guess everyone is ‘weird,’ in some ways. We all do things in our own way, and that can seem weird to other people. What makes you ask?”

“Do you and Daddy think I’m stupid?”

“Good heavens, no! What makes you ask that question?”

Martin started to cry. He said, “The kids on the bus think I’m stupid.”

And then—whether because the psychologist unlocked a vault within Martin, or otherwise—stuff got real. Through his tears, Martin described his current social situation:

  • The kids in his class call him weird and unfriendly.
  • No one will play with him at recess.
    • Robert, whom Martin knows from church, was playing a game with friends. Martin asked Robert if he could join. Robert said no.
    • Kids run away when they see him coming.
    • A second-grader from another class seemed like he was going to accept Martin’s invitation to play, until one of Martin’s classmates ran over and said, “Don’t play with him! He’s the weird kid!”
  • Some weeks ago, when Martin got in trouble for telling a girl he was going to “kill” her (at the time, he provided no explanation why), it was because the girl had just said, “Martin, no one likes you.”
  • Even the young parishioners at church Kids’ Klub refuse to play with him.
  • As bad as all that is, the school bus is still worse. Every day the kids make fun of him, for months now. Even the kids he knows from bus stop participate in the bullying. The twins across the street participate. Kids from other classes and grades participate. The only kids who don’t tease him are kindergartner Marcus, third-grader Alice, and fifth-grader Stephanie. The only kid who ever will step in to stop the bullying is Stephanie.
  • This very afternoon, before Martin alit the bus looking so dejected, the kids had invented a chant: “Stu-pid! Stu-pid! Martin is so stu-pid!

Never before had Martin said any of this directly. As realities were pouring out, Adrian realized from his office what was going on and returned to the kitchen. He found me squatting next to Martin’s chair, with my hand on his arm, withholding my own tears as I tried to reassure and let him continue. Martin held court for more than 15 minutes. Twice Adrian tried to hug Martin, but Martin resisted, pushing Adrian away gently because he wanted to keep talking. The conversation was extraordinary. Martin held eye contact, consistently. He spoke clearly. He answered my questions: No, his aide didn’t hear mean things kids said; no, the bus driver never intervened; no, Stephanie hadn’t been able to stop the stu-pid! chant because she wasn’t on the bus this afternoon. Martin also expressed a shocking degree of self-realization and profundity. “They say I’m unfriendly,” he said, “but it’s not true. It’s just that I’m still learning how to be friendly.” “I know those kids are wrong. They just don’t know me well enough.” “The twins were nice when I first met them, and then they turned mean on the bus.”

Finally, as I listened to what Martin has been enduring, I lost my own composure. At that moment Adrian scooped up Martin and carried him from the kitchen, telling him how brave he was to trust Mom and Dad with these stories and how proud we were. He took Martin to the bathroom and ran a warm bath. I remained in the kitchen, crying.

With Martin calmer and soaking in the tub, Adrian came back and hugged me.

I said, “We’ve got to do something.”

Terrified

Martin is doing taekwondo now. He’s breaking my heart. He’s supposed to be playing ice hockey. We’ve invested more than a year in skating lessons and hundreds of dollars in hockey equipment. It’s no secret that I reproduced primarily to give the world another hockey player. Hockey, hockey, hockey.

Alas, apparently Martin has a will of his own. Weeks ago, we had a (parent-and-school-administrator-arranged) play date with Spencer, one of the cooler kids in Martin’s new class. Spencer is close to earning his taekwondo black belt. He showed me and Martin some of his moves, and a video of him breaking boards with kicks and punches. Spencer’s family also invited Martin to Spencer’s taekwondo-themed birthday party at the local dojang. You can guess what happened next: Martin announced that he no longer wanted hockey lessons. He wanted taekwondo.

The dojang’s introductory package comes with two private, one-on-one lessons, followed by two group classes to decide whether you want to sign up for good. Martin’s first lesson, with a teenaged black belt named Brian, was kind of a disaster; Martin preferred checking himself out in the mirror to following any actual instruction. (Just like two years ago when we tried karate.) The second lesson, also with Brian, went much better; Martin was more focused and worked with Brian on the kicks and punches. (One of the dojang masters remembered Martin from the birthday party and made a point to say hi and encourage him. I think that motivated Martin.)

So it was time to try Martin’s first group class. As the class was 11:00 a.m. on a Saturday, Adrian brought him, and I received this hearsay account:

The class had one master (the one who’d said hi to Martin) and three assistant instructors, probably teenage black belts like Brian. At first, Adrian thought an assistant was specially assigned to Martin. Subsequently he realized that the assistant instructors were for the whole class but, unsurprisingly, spending more time with Martin. As Adrian observed, he texted me that he thought taekwondo could be very good for Martin.

Twenty minutes into the class, the other dojang master asked if he could have a word with Adrian, in the office.

“I was terrified,” Adrian told me, later. “I thought for sure he was going to say, ‘No more,’ or, ‘Just not the right fit for Martin’.”

“And? What did he say?” I asked, not terrified, but not terrified only because Adrian was speaking calmly, indicating no reason to be terrified.

“He said he thought Martin is going to do well there. He said they have a lot of kids like Martin—he didn’t mention ADD or anything like that, but we both knew what he was talking about—and that martial arts help a lot with focus. He contrasted it with sports where kids can get away with just running around, like soccer.”

Or hockey, I thought, before shunning the thought.

Adrian continued, “The master guy said that his ‘day job’ is as a special-education teacher at [S—] School.” That’s one of the local elementary schools.

“This sounds wonderful,” I said.

“I think so.”

“I would have been terrified, too.”

“I know.”

Having a kid with autism, or ADD, or ADHD, or (I imagine) any range of challenges entails constant fear of rejection (and sometimes, rejection realized). Last Friday, I had arranged an evening play date with a boy in Martin’s new class (Lucas, whose mother I’d talked with at the open house). We planned to meet at a playground. Friday morning the boy’s mother texted me that it was supposed to rain and so we should reschedule. She didn’t suggest any particular time to reschedule. Instantly, I was terrified. Had the classmate found out his play date was with Martin and declared himself unwilling to attend? Did he not want to hang out with the weird kid? I texted back and suggested Tuesday afternoon instead. The mom responded sure, and that she would be in touch Tuesday morning.

I wondered whether she really would contact me Tuesday morning.

I hope she would.

I feared she wouldn’t.

She did. Tuesday morning, she texted asking what time we wanted to meet.

The play date was kind of a bust. The other boy (himself kind of immature, with some challenges, though not at Martin’s level) played mostly with a pre-schooler who happened to be at the playground. Martin wanted to swing, as he always does. The other mother and I made scattered attempts to facilitate interaction, fruitlessly.

Still, later she texted me, “Let’s do it again soon!”

Disaster averted. Nevertheless, we’ve suffered enough rejections and setbacks along the way to keep the terror real, and present.

In Hope, Acknowledging the Despair

Remember last week’s post so long it required subheadings? Remember the subheading “Whence My Anxiety?” and how I described the City Kids Club rejecting two-year-old Martin? Remember yesterday’s post, which was a follow-up to the post so long it required subheadings? Okay. This is another follow-up to the post so long it required subheadings, and specifically a follow-up to the “Whence My Anxiety?” section.

Done with introduction/explanation. Thanks for your patience.

It was summer 2010, around Martin’s second birthday, when Adrian and I realized something was “off” with Martin. If you read this blog, you probably don’t need details about autism’s warning signs: lack of attention, inability to follow simple directions, nighttime wakefulness, daytime exhaustion. In September 2010, an old friend of mine, an Early Intervention provider, traveled from my hometown to the City and helped us complete an M-CHAT (modified checklist for autism in toddlers) questionnaire, which she evaluated. (As it turned out, my friend didn’t really need the M-CHAT. After ten minutes just interacting with Martin, she knew that he almost certainly had autism.) By October 2010, we had begun the process of formal diagnosis and enrollment in EI.

I remember autumn 2010 as a time of Martin not really regressing, but slipping. The symptoms moved from “something off” to “obvious.” He lost all eye contact. He no longer responded to his name. His communication skills stopped developing. He drifted the perimeter of our apartment, dragging his fingertips along the wall as he hummed to himself. What we’d once called Martin’s “happy dance”—running circles around our open staircase when Samara arrived—became instead a self-stimulatory ritual beyond his control, ever more circles, ever longer, until finally he’d collapse into a lethargic slump and spend the next hour on the floor, pushing a toy back and forth.

We began changing Martin’s diet in January 2011, and started biomedical interventions in February. The initial progress was so swift that I thought we’d be done with autism within a year or two. Within months, Martin was sleeping through the night, and we the first seeds of functional, i.e., non-echolalic, language were sprouting.

For September 2011, seven months after we started biomed, we were able to secure a spot in one of the City’s preeminent special-needs preschools. Stop your giggling. It’s New York City. We compete for special-needs preschool placements, of which the City has far too few. Martin was placed into a bilingual (Spanish/English), 12-1-1 (12 students, one teacher, one assistant teacher) classroom. It was a stretch, we knew. The instructors from Martin’s EI center said he needed a smaller student-teacher ratio than 12-1-1. Adrian and I figured, however, that Martin was getting better, and that soon he would be able to function in the 12-student class, and that in any event, the only spots still available in preschool were in the bilingual, 12-1-1 setting. So we took the spot, with gratitude.

From the beginning, Martin’s classroom teacher reported problems. The other kids could follow one-step directions, at least, and already were learning to cut with safety scissors. Martin followed no directions and melted down when it was time to transition activities. The other kids were fully toilet-trained, or well underway toward that goal. The other kids could watch short films. The other kids could walk to the classroom by themselves. Martin—Martin was himself. Very soon we began to hear murmurs that Martin might need to change classes.

The hammer fell a few months later. Adrian and I were called to a meeting with the teacher and administrators. Martin could not handle a 12-1-1 classroom. Fortunately, the school now had a spot available in an English-language, 8-1-2 classroom (eight students, one teacher, two assistant teachers). Martin would be moved slowly, spending short periods of time in the new classroom, and then half days in the new classroom, and finally saying goodbye to his 12-1-1 friends.

Martin’s removal from the 12-1-1 classroom ranks second in the painful moments I’ve experienced on this journey, behind his rejection from the City Kids Club. To be sure, the 12-1-1-to-8-1-2 classroom move is a distant second. The preschool wasn’t kicking Martin out; they were thoughtfully placing him in a setting to meet his then-current needs. And I was more prepared. I’d had weeks to internalize this possibility, and didn’t even need to reach for the tissue box someone had put on the table at our meeting. Still, the decision forced me to acknowledge that Martin’s recovery was not going to happen as fast as I’d thought, and that after the rapid initial progress, his improvement had slowed. His needs were still great, more extensive even than the needs of most preschoolers in special education.

Also on the Top 10 Most Painful Moments List? Touring private special-education elementary schools, trying to find an appropriate kindergarten placement for Martin, and hearing repeatedly that while dyslexia, learning disabilities, dyspraxia, &c. were acceptable, children with “autism and other global delays” should not bother to apply. Let’s not go there, this post.

I was already blogging when Martin changed preschool classes. I didn’t write about the event, at the time, because it was too painful. Later, when autism’s grip had loosened a bit more and I was feeling better, I decided to write about it. I meant to write about it. But I didn’t. For whatever reason, I still couldn’t get there.

So what’s going on now? Why am I dragging these dark moments onto the internet for all to read?

It’s because of hope. Martin right now is living a bold season for recovery. Language, good. Sleep, good. Health, good. Attention, improving. Socialization, improving. Physical skills, improving. I am surfing an wave of hope. Full recovery seems more possible than it has in years. More possible, maybe, than since the 12-1-1-to-8-1-2 switch.

I might regret reviving, here on the blog, our journey’s lowest points. Wind, you can have my caution. I’m overjoyed for the confidence to share.