Bound To

The autism recovery path is so jagged—so many ups and downs—that the key to longevity is managing my own emotions. Well, one key. Other keys are financial stability, a supportive co-parent, close friends, a cooperative school district, available therapies, access to organic foods, home ownership or other opportunity to create a cleaner living space, and let’s face it, we’re talking about innumerable keys. But certainly managing my own emotions is one. I struggle not to pin my mental state, any given day, to Martin’s transitory condition. Martin has good days and bad days, good weeks and bad weeks, good months and bad months. I don’t mind the elation when Martin feels well and performs well. Giving into despair when he doesn’t is a recipe for driving myself crazy.

That being said, it never ceases to bewilder me when Martin looks near-typical one day and strongly symptomatic the text, without any obvious intervening factor.

Two Fridays ago Martin earned his yellow belt in taekwondo. He didn’t perform exactly as well as the other eight-year-olds being tested but nonetheless paid attention and made the correct moves and legitimately earned the belt. We went out for sushi to celebrate, and Martin went to bed early. He spent that Saturday in New York City with his uncle Eddie. By all reports they enjoyed themselves and Martin’s behavior was stellar. Saturday evening we had dinner at home; Eddie (who eats meat, occasionally) and Martin had organic roast turkey, Brussels sprouts, and brown rice pilaf with vegetables and sprouted pecans. Martin, exhausted from his day, again went to sleep early and without incident. That night he slept 11-and-a-half hours.

Nothing changed.

Nothing, except that Sunday morning Martin was antsy in church. He rocked around during children’s time and, I learned later, disrupted Sunday school with incessant talking. That afternoon he became crabby. Sunday night, alternating between anxiety and cracking himself up, he had trouble falling asleep. I dropped off close to 11:00 pm. He was still awake.

Monday’s school report was—less favorable than one might hope.

Tuesday’s report was—disastrous. After school, Martin looked goofy and distracted at taekwondo class. At church Kids’ Klub, in front of all the children, he called the teacher a “liar” when she misspoke and said “tomorrow” instead of “next week.”

By Wednesday evening, following a trombone lesson that made me ask myself why I’m still paying for trombone lessons, Martin was running back and forth. Remember that? Run from sofa to stairs, stop, turn, space out, then jump and pa-dap-BUMP, run back to sofa, stop, turn, space out, then jump and pa-dap-BUMP, repeat. Classic repetitive behavior. Haven’t seen it in months. Months. Before Wednesday, I would have put “running back and forth” into the “so far gone” bucket.

There were other behaviors too, both at home and at school, that for Martin’s privacy I’d rather not document here.

On Thursday, Martin started to reemerge from the mystery fog. Thursday’s note from school said, “Martin had a better day. :-)” Friday, which was a parent-teacher conference day with no school, Martin had a successful play date with two friends and focused well at taekwondo. Saturday afternoon he worked three hours on a Lego project with Adrian, without complaint. Sunday he hosted a home play date for three friends.

The Friday-Sunday update is based on reports from Adrian and Samara. I was away for the weekend, with six girlfriends from high school. Some of them read this blog. Thanks, ladies. You sustain me.

So why did Martin, without any apparent external stimuli, tank for several days? I don’t know.

And why did Martin’s Wednesday ROOS, combined with a Friday parent-teacher conference about behaviors that are causing fellow students to alienate him, send me into a tailspin, albeit a short-lived tailspin? That I do know, and I’d like to find a way to change the answer.

 

Alternative Medicine

In the post “Mid-Air Without a Net,” I wrote:

The taekwondo teacher wants to talk to you, [Samara] texted Saturday morning. He’s wondering if Martin is taking any drugs for his ADD.

 Oh no! I texted back. (More on that in a later post.)

It’s “later post” time.

When I received that text from Samara, I panicked. Mostly because I was in the middle of panicking about everything else, but still. I thought the Master Rob might tell us not to return Martin to class until we drugged him. I followed up the text and spoke with Samara, and the situation got worse (at least, in my head): When Master Rob asked her if Martin is taking any drugs for his ADD, Samara had responded that we do “alternative medicine.”

That’s a phrase I never use. To begin, I don’t consider treating Martin’s underlying health issues to be “alternative medicine.” We have chosen against trying to manipulate neuro-processing with drugs. We are pursuing non-pharmaceutical options. We are working with new discoveries in treating immune dysfunction. We have been lucky enough to find cutting-edge therapies. We are targeting overall health. We are following the path that, for our son, has garnered the best results. But alternative medicine—no.

At its most benign, I think, “alternative medicine” suggests that we’re a hippie-dippy family trying to cure a spectrum disorder with yoga. (No disrespect to yoga. Yoga is great for mindfulness. It does not, however, do much for the gut biome or neuro-receptors.) “Alternative medicine,” to some, suggests that we are treating our child as a laboratory experiment, or harming him, or failing to accept “proven” treatments that could benefit him. At its worst, I (like other biomed parents) fear that proclaiming “alternative medicine” could invite intervention by well-meaning individuals who think they know better for my son.

I met with Master Rob the next week. I explained that we aren’t pursuing pharmaceutical options at this time because we are trying to heal some gut and other health issues that affect Martin’s attention, and that using drugs would interfere with gaging our progress. I went on to say that we aren’t categorically against drugs but that we want to take this path as far as we can first. Master Rob said that he understood, and that he had resisted pharmaceuticals for his own son, who has ADD, until sixth grade, when he thought the transition to middle school had made them necessary. He said also that he was curious about Martin’s regimen in order to give him as much help and support at taekwondo as possible.

Good enough for me.

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.