punchdrunkmom

It's awful. I know.

I went for a run today and was listening to a podcast that had been recommended to me by a teacher. It’s called Nice White Parents. It’s about some, well, nice white parents seeking to integrate their children into a public school in Brooklyn full of mostly brown and black children. It’s incredibly compelling listening (Sarah Koenig of Serial fame is an executive producer). 

I had a knot of existential dread as I was running. It could have been the sheer number of people (masked and unmasked) on the trail. It could have been the morning spent reading about the Fyre Festival Republican Convention. It could have been all of the memories that popped up on Facebook of all the things I usually do this week, such as visit my mom and go to the Minnesota State Fair. It could have been the shame and discomfort listening to a story of classism and entitlement that I recognize in my own community.

All of that, yes. But I think it was mostly just the talk of school in general, which for us starts in a week. Listening to the stories of the (well-intentioned) parents and all of their passion and drive to make things better for their kids in the moment was actually reminding me that school was starting and I have done absolutely nothing to prepare for it.

As I wove past walkers and slower runners, I passed one woman who was standing off the path talking on her phone.

“It’s awful. I know,” she said into her phone.

I almost laughed. It doesn’t matter what they were talking about. Pick a topic.

It’s awful. I know. It’s a hashtag. It’s a mantra. It’s the truth. 2020—It’s awful. I know™

:::

I have been ignoring the start of school. Or “school,” as it were—we are remote until further notice.

Remote for Kai last year wasn’t great, but at least Kai can come to the table for a one-on-one lesson after all those years of therapy. It wasn’t clear that he was getting his IEP accommodations met, but with Scott acting as his aide, he was at least getting his work done. He also doesn't mind the solitude of it all. Ryan was less able than Kai to learn over zoom. She would get off the call and I would ask her about it and she would tell me that she hadn’t paid any attention, thanks in no small part to her raging case of newly-diagnosed ADHD. For Ryan, everything that made school tolerable—friends, social interaction, breakfast for lunch on Wednesdays, was gone.

For me there was a moment last spring where, between the teacher strike and COVID, I just decided to flush 4th and 7th grade down the toilet. I will admit 100% to phoning it in. I figured they’d be back in school in the fall and we could just fix it all then. As Kai would say, “That’s a problem for future me.”

And here we are.

:::

I did talk to some parents of Ryan’s classmates about a pod. We’ve done nothing apart from one zoom call a few weeks ago, however. I’d thought about hiring someone to assist the kids, but I’ve done nothing about that either, and now I’m seeing that people (probably those same nice white parents in the podcast) are giving such assistants $25 an hour with a $1000 signing bonus. No one has invited Kai into a pod and this makes me so sad that I can’t think about it. I feel guilty, like I’m just letting school happen to us without trying to control any part of the process.

The truth of it is that I have no idea what to do. I know some people are moving to cities that are in-person or hybrid, but that seems like a lot of effort for an uncertain outcome. I know some people decided to go to private schools, but a private school won’t address Kai’s IEP or Ryan’s 504 and will probably switch to remote after a week anyway and at the cost of a new mini-van per year per kid. I’ve heard of places that run camps in the summer that are charging $500 per kid per week to help them through their remote classes, but that’s a non-starter for Kai, who does not do well in camp settings. I know one family that advertised for a teacher to come to their home, with an offer to pay $2 more an hour than I make in my own job. This seems like maybe the best worst option, but I just…I don’t know. I don’t know what any of this is even going to look like.

Lather. Rinse. Repeat.

:::

The other day, I did come up with one idea while I was driving to work, and when I got home I asked Ryan if we could talk about school.

She pulled off her headphones with a heavy sigh of tween angst.

“I have an idea,” I said.

She groaned,  not wanting to talk about school at all.

“What if we made you lunches like you get at school?” Ryan had started exclusively eating school lunch last year.

She smiled a little.

“Like chicken patties, for example,” I offered.

“I also like the chicken nuggets they serve with breadsticks, the spaghetti and breakfast-for-lunch,” she said brightly.

“We can get some of those compartmentalized plates, maybe.”

Ryan put her headphones back on and went back to Roblox, only to take them back off again.

“That wasn’t the school discussion I was expecting,” she said. “That was much more fun.”

“Sometimes, lunch is the best part of the day,” I said, and put “sleeve of chicken patties” on the Costco list.

Chicken patties. This is the only thing I’ve done to prepare. It is the only thing I have in my bag of tricks.

Well, not the only thing.

:::

I wonder what our children will think of all of this in ten or twenty years. Or fifty. I have to think that they will somehow still be fine, that this, too, shall pass. All of them will miss some important thing and never circle back to it, like exponents or the definition of onomatopoeia, neither of which I use in my adult life anyway. Most children across history have faced far worse traumas than this particular one. My kids aren’t having nuclear weapons dropped on them, or the sun blocked by clouds of thick black dust and locusts, or the sea swallowing them up in a single devastating wave. It’s just a few zoom calls and a laundry list of things that break my heart.

 

It’s awful.

I know.

 

 

 

Tae Kwon D'oh

Kai has never really been able to participate in after-school activities like soccer or baseball for two reasons: the first is that he is terrible at activities like soccer and baseball, and the second is that our nonstop therapy schedule made it impossible. His neurologist was always after me to put him in sports with other kids, to which I would waspishly reply that the neurologist was welcome to haul Kai’s carcass to soccer or whatever, but that I was just too tired after speech, OT, social skills and vision therapies to drive him anywhere, much less help some sixteen-year-old Park District employee teach an autistic kid how to play a team sport.

But then we found ourselves suddenly free of these time constraints. Dropping OT and social skills group meant that we could put Kai in some classes and sports. Ryan, too, would be free to take classes and hang out with friends. So we put her in the unfortunately-titled-but-hopefully-fun Happy Hands Art Class. I put Kai in a Lego building class. And they both wanted to take Tae Kwon Do, or, as Kai calls it, Ninja training.

There is a martial arts studio not even a block from my house. This studio has been recommended to me over and over. It seemed like a no-brainer, especially after I told the manager a little about Kai.

“We get tons of autistic kids,” he said to me.

Dynamite.

So yesterday after school, I told the kids they would try out Ninja Training.

I asked Ryan to go upstairs and change for Tae Kwon Do. She chose a purple dress, which is not at all what I meant, but arguing about clothes with Ryan is hard so I left it alone. At the studio, they tossed her into the mix of kids with barely a word of explanation, purple dress and all, but she punched and kicked along with everyone else, kids who called the teacher “sir” and stood in perfect formation. They had a lesson in Stranger Danger and even practiced resisting being kidnapped, which was both alarming and probably a good idea.

She skipped up to me after class and declared it to be “super fun,” and we were one down and one to go as I told Kai to take off his shoes and socks like the other kids and head out on to the mat.

I told the instructor that Kai has autism.

“I have autism in my family,” he said, “and we have lots of autistic kids here.”

Kai walked up to him.

“I need my ninja clothes,” Kai said, meaning the white uniform all the other kids had.

The teacher didn’t bat an eye. “Well, if you like the class we’ll get you some ninja clothes.”

“Okay,” Kai said, and I realized that I had been holding my breath.

The thing is, that people always say that they’re cool with autistic kids, but this is not often the case. It’s more like they’re cool with the idea of the existence of autistic kids, just not in their class. Autistic kids tend to zig when they’re supposed to zag and frankly most people cannot handle this. But as I watched Kai in class, the instructor seemed to get him.

Kai was watching himself in the mirror rather than watching the instructor, so the teacher asked all the kids to look at him.

“Look at me, not the mirror,” he said.

Several kids were watching themselves and a few turned to look at the teacher.

“Look at me, not the mirror,” he said again.

Now everyone but Kai had turned to look at the teacher.

“Look at me, not the mirror,” he said yet again.

And, with what looked like a great effort, Kai finally turned his head.

I was in heaven. Maybe this is exactly what Kai needs! He needs to focus. Perhaps he could use Tae Kwon Do/Ninja Training to learn to pay attention in class.

Kai was having a hard time standing still, so the teacher asked everyone to stand perfectly still. If you moved, you had to do 10 push-ups.

Several of the other kids had to do the push-ups, but not Kai. He stood perfectly still.

I was ready to start writing checks at this point. I even began to indulge in a fantasy, that this would be Kai’s narrative—overcoming autism through martial arts. He would get a black belt and have one of those viral videos where music plays and words flash on the screen: “…and then he discovered Tae Kwon Do.” (Cut to a shot of Kai meditating, then getting up from the floor without using his hands and assuming a fighting stance) “…and suddenly he felt comfortable in his own skin.”

And then, 11 minutes into class, Kai broke from formation and walked up to the teacher, a guy who puts kids in formation and requires that they call him “sir.”

“Any ice water?” Kai asked.

“No,” the teacher said.

“Whew,” Kai said, wandering aimlessly through the other kids, who were standing at attention. “I’m getting thirsty.”

Kai went back to his spot and sat down.

“Oh my god,” I said, more loudly than I’d meant to. Several of the parents turned to look at me. I willed him to get back up.

I thought the teacher might get mad, but he didn’t. Instead he asked Kai to stand up, which Kai did after the instructor gave him until the count of five, but with much griping and a heavy sigh.

Next, the kids were asked to do two front kicks with the teaching assistant, and then run to the teacher, who was holding a mat, and perform something called a flying kick.

There was a girl there, probably Kai’s age, named Janelle, who executed these moves perfectly. There were a couple of boys who tried very hard, but ended up falling over after the flying kick. There was an older girl who had so much force with her flying kick that the teacher was surprised. When it was Kai’s turn, Kai ran into him with his shoulder, linebacker-style.

“Do it again,” the teacher said. “No hands, no shoulders, just a kick.”

Kai tried again. It wasn’t perfect, but at least it was a kick and not a tackle.

“Good,” the teacher said.

Then the teacher produced a dollar.

“Okay,” he said, “the first person to kick me so hard that I take a step backwards gets this dollar.”

“Ooo,” Kai said.

The kids all tried to knock the teacher back with their flying kicks. Janelle had a great kick, but wasn’t big enough to move him. Those two boys kept falling over. Kai flew at him with a combination push-kick that got him another reprimand for not using just his feet. The older girl won the dollar.

And that was when Kai lost his shit altogether.

He let out a howl of grief and pain.

“I wanted the dollar!” he wailed.

His face was red and he was swiping tears out of his eyes.

The kids were still kicking, Kai included, though he was crying.

“I wanted the dollar!” Kai said again, and he ran toward the instructor, leaving a scream of rage in his wake.

“You can be mad,” the teacher said. “Let it out on the mat.”

Kai did exactly that, continuing to kick the assistant and then fly at the teacher, performing a sort of tackle kick that the instructor didn’t bother to correct. “Good!” was all he said.

Other parents began to bury themselves in their books and phones, eyes anywhere but on Kai. I grabbed him at one point and asked him to stop crying, but he was too far gone.

“I want a dollar,” he wailed, over and over and over and I wanted the earth to open up and swallow me, for time to speed up, for the wine-equivalent of the Kool-Aid man bust down the wall and provide the dual comforts of alcohol and a good, old-fashioned distraction.

Janelle ran up to me and handed me something.

“Give this to your son,” she said, and skipped back to her place in line before I could react.

I looked down.

She had given me a dollar.

:::

After class, I found the instructor.

“So,” I said. “What do you think?”

He looked at me for a long moment. “I liked that he kept at it,” he said finally.

I’d liked that, too.

I mean, if there hadn’t ever been the possibility of that damn dollar, this might have gone great for Kai.

“I know Ryan wants to come back. If Kai wants to…” I trailed off.

“I’ll have to talk to the team,” the instructor said. “We’ll let you know about Kai.”

This would have ordinarily made me furious, but I found that, aside from being too worn out by Kai’s freak-out to summon any rage, I understood perfectly. Kai was a giant, 75-pound distraction in a class about respect and focus.

“Kai would have to conform to the class,” the instructor said.

“I understand,” I said.

I sat down heavily next to Kai on a bench and sighed.

You’d think I would no longer be surprised by anything that Kai does, but there you go. Kai surprises me all the time.

Janelle walked by and I gave her back her dollar.

“Honey,” I said gently, “I can’t take this from you. I can’t tell you how sweet this was of you, but I can't take your money.”

She took her dollar back, looking slightly hurt. I felt terrible, but I can’t take money from little girls, even if they mean well and the dollar probably would have solved everyone’s problems.

While Kai put his shoes and socks on, I thought about his first time at OT, how he sat in the corner and cried, how the big space had overwhelmed him and we had to do OT in a tiny, closet-sized room using picture schedules until he felt more comfortable, and I wished there was a way to do that here, how he could do this if he had the right support, how he is a hot mess when you tossed him cold out in the real world, which I always forget and always breaks my heart.

I felt a profound sense of hopelessness and exhaustion.

“Take a big breath and calm down,” Kai said to himself, and he did exactly that which was nothing short of amazing.

I looked at him.

“Did you like Ninja Training?” I asked him. “Would you want to come back?”

“It was hard, but I can do it,” he said.

And with that, Kai surprised me for the 1,346,876^th time.

The dinosaur dig

If you know Kai, you know that he likes dinosaurs.

If you REALLY know Kai, you know that the spinosaurus had a double row of teeth and snacked on sharks and was SWIMMING DINOSAUR and not a marine reptile and I should do some more research before I say incorrect things like that, and also that the displesiosaur means "double crested lizard."

So when talk last winter meandered to the possibility of going on a dinosaur dig, there was simply no turning back.

Long before we'd made any decisions or booked any flights or hotels, he'd told everyone that he was going on a dino dig this summer.

So.

I asked my friend John, who knows some paleontologists, if he knew of any who would let us tag along on a dig. John said that his paleontologist friends were kind of jerks and instead googled a list of places that will let the public hunt for dinosaurs. With people who know what they're doing, I mean. I myself saw an opportunity to combine a dino dig with a trip to visit my friend Quincy in New Mexico, and viola! A plan was born.

:::

The dino dig I chose was out of the Museum of Western Colorado. For $140 apiece, they would take us to the Mygatt-Moore quarry outside of Fruita, let us dig for dinosaurs, and feed us a sandwich.

I mean, sold.

I bought tickets online, and, to my surprise, we had to fill out a vast array of medical forms, which I dutifully procrastinated on until the week before we left.

After a gloriously conversation-filled and booze-soaked weekend with my friend Quincy and her family, in which we took zero pictures of each other but took several of our cocktails, we pointed the car north to Colorado.

I am so not kidding.

Let me stop here and taxi-cab confession to you that I would be lying if I told you I was excited about this dig.

I knew it would be hot and dusty, that dinosaurs don't die in the Peninsula Hotel but in the vast wastelands of Hot Nowheresville, USA. I worried about Ryan, who hates to walk more than 20 feet at a stretch. I had completely ignored the advice of the dig coordinator to outfit us all in wide-brimmed, Park Ranger-style hats on the basis of sartorial loathing, plus the fact that we would never use them again, and was concerned that this was a huge mistake and, after all the medical forms, I was vaguely worried about our health.

Additionally, I harbored a completely separate fear that Kai would hate it, and therefore, by encouraging his dream of becoming a paleontologist, we would inadvertently ruin it with a hot, dusty dose of reality served with a sandwich. We talk about this in guitar class all the time—the fact that the worst thing you can do is meet your idol. You can't help but be disappointed.

So, it was with considerable apprehension that I presented my family at the Dinosaur Journey in Fruita, Colorado, armed with bottled water and approximately 50 cans of sunscreen. We found a contingent of people loading coolers into a van and, after a few minutes consultation, got our first piece of good news: the dig would be over by 2:30. You should have seen Scott's face when I told him.

Anyhoo, two dudes who looked like construction workers ushered us into the museum. I assumed that they were drivers. Or haulers. Or lifters of heavy coolers. They led us into a room with several chairs, a podium and a giant screen. I wondered if we'd see a film before we left, the kind that starts "One hundred and fifty million years ago, dinosaurs roamed the earth..."

But there was no film, no PowerPoint, no frills of any kind.

Instead, the two guys sat down on the stage and introduced themselves.

They were paleontoligists.

And I guess I didn't know what I expected. Ross Geller, I guess. Or Sam Neill with his cleaned-and-pressed khaki button down. But these guys were just regular guys. Guys who dug dinosaur bones. They were tanned and be-hatted, and I was relieved to see only one of their hats was wide-brimmed. We were told there was no running water in the on-site bathroom (they looked at me when they said it), and I told them we'd be okay, though I wasn't going to say that we weren't.

In the van on the way to the quarry, we were all asked to tell everyone our favorite dinosaur. Alarmed, I searched wildly for an answer while the rest of my family gave theirs. Kai went with the T-Rex. Ryan's was the triceretops. Scott said the velociraptor.

I wanted to say something cool, but what was I going to say to two paleontologists?

They waited.

"Stegasaurus," I said finally.

"They have a brain the size of a gum ball," Kai said.

There was another family with us, a father/son duo. I don't remember what they liked, but I do remember what the paleontologists said they liked.

Chris, the driver, liked marine reptiles.

“Oh!” Kai said. “Like the plesiosaur.”

Chris sad he liked the mosasaurus, too.

“Oh,” Kai said. "The mosasaurus likes to snack on sharks!”

Rob said that his favorite was the allosaurus, which, coincidentally, was one of the dinosaurs one could find in the quarry.

The quarry itself was only about a hundred feet off the main road, which was another happy surprise. I assumed we'd have to hike into some kind of canyon, but this would not be the case.

Each of us were given a paint brush and a screwdriver, and shown how to use then to find fossils.

"The paintbrush is your best friend on a dig," Chris told us, as he demonstrated how to use the brush to clear sand and debris, showing us how to look for black rocks that might be fossils.

Listening carefully.

Rob showed us where some fossils had already been partially uncovered and that we could continue to brush and chip away at the sandstone (which is what I did), and another area that hadn't been excavated  but that he thought looked promising (which is where Kai, Ryan and Scott went), and we got to work.

Since this was the last day of the digging season, Rob was trying to excavate everything he could before they covered up the site until next spring. What he couldn't dig out today, he would cover in plaster and then layer under rocks so that poachers wouldn't steal the fossils, which is, apparently, a thing. They took out two connected apatosaurus vertebrae that had to be hauled out on a flatbed, and "jacketed" another set with plaster (which Ryan helped with.)

I chipped away at some rock and found what I thought might me a fossil. I called Chris over and asked him what he thought, and he thought I was right. After some careful brushing, I came up with this:

which is a 152 million year old fragment of a vertebra, or a "vertfrag," which went into the "nugget bucket" because it was too small to care that much about if you are a paleontologist, but is amazing as hell if you are a yoga instructor from Chicago.

Chris showed Ryan that the difference between a rock and a fossil was that a fossil would stick to your tongue, which had Ryan enthusiastically licking the rocks in the discard pile until she found a few fossils that had been discarded by mistake.

Kai brushed and chiseled merrily for a while, and I watched him as I worked, worried the whole time that he would break something or worse, lose interest completely. When it looked like his attention was starting to wander, I took him on a mini-hike up a nearby trail, where some paleontologists had found an apatosaurus skeleton that had ended up in the Field Museum.

"Are you having fun?" I asked.

"Yeah," he said.

But still I worried. He had fantasized for weeks leading up to this dig that he would discover a Kaijudysaurus, and he had so far discovered nothing. Not even a vertfrag for the bucket.

At lunch, Rob entertained us with a description of his favorite dinosaur.

“The Allosaurus isn't like T-Rex. It has big, beefy arms. And he gives you a big bear hug, and as he's squeezing the life out of you, he punctures your spine with his giant claws. And then he opens his mouth to take a big bite out of you, but he doesn't just chomp down, he brings his whole head down on you as he does it, like an eagle.”

“But, what about,” Kai interrupted.

“Hold on, I'm talking. And what do you think you'd do if allosaurus was squeezing you, clawing you, eating you?”

“Scream?” I suggested.

“Exactly right. But the thing about allosaurus is that he can't hear you scream. We've analyzed his skull and his ear structure. Allosaurus couldn't hear a scream, because he could only hear at a very low frequency.”

“Yeah, but if the mosasaurus,” Kai interrupted again.

“I don't interrupt you. I'll finish and you can talk. Allosaurus used that low-frequency to communicate. And it was so low, you wouldn't hear it, you would only feel it.”

I want “Allosaurus wouldn't hear you scream” written on a t-shirt.

“But who would win in a fight? Mosasaurus or allosaurus?” Kai asked, clearly nonplussed by Rob’s allosaurus talk.

“Well, one lived on land and one lived in the sea, and they also lived in different periods, so...”

“So who was stronger?”

“Why don't you ask Chris?” I suggested.

Chris seemed pleased. I can't be sure, but I think Chris had asked himself the same question.

Mosasaurus vs. Allosaurus, AKA Chris and Rob

:::

When we got back to the museum, we were treated to a tour of the fossil lab and, despite Kai's fading attention and my exhaustion, I didn't want the experience to end. There was something about this day that had transformed me on some level. Maybe it was the vertebra fragment, or the camaraderie and closeness of the people at the dig site, or maybe it was the incredible gratitude I felt for being able to bring Kai out to this vast wasteland to encourage him to be a paleontologist if he wants to, though I think he could also do well to make a video game about a battle between a mosasaur and an allosaur. I feel like there's a market for that.

The Museum of Western Colorado is delightfully cheesy, with mechanical dinosaurs that eat each other and spit water on unsuspecting museum-goers.

 

Ryan played in the pretend dig site, despite having just done the real thing.

Afterwards, we went to McDonald's, all of us filthy and dusty, and for reasons I can't fathom except that I must have looked like I needed it, they gave me a free ice cream cone, which I ate gratefully.

:::

Two days later, we found ourselves at Dinosaur National Monument, looking at the Quarry Exhibit. The Morrison Formation, like the Mygatt-Moore Quarry where we'd been for the dig, was a vast soup of sauropods and allosaurus bones.

Looking at the wall of dinosaur fossils, I couldn't help but feel like this was no big deal to me, like I'd been there and done that and in greater relief than I'd ever had at any museum. Who wants to look at a fossil when you could dig it out of the earth on a hot Wednesday in August and then eat a ham sandwich?

As I wandered around, I saw a cast of an allosaur skeleton stood against one wall, and I went over to examine it.

A family stood near me, also looking at it, too. They had a boy about Kai's age.

"What's the difference between a T-Rex and an allosaurus?"

When neither parent answered, I stepped in.

"I will tell you the difference," I said.

"The allosaur has big, beefy arms, unlike T-Rex, whose arms are tiny and useless. Do you know what he does with those arms?"

The boy looked unsure of what was happening. "No," he whispered.

"He gives you a huge hug, and he uses those claws to puncture your spine. And you know what else?"

No one answered.

"Allosaurus' ears were such that he couldn't hear you scream. And you couldn't hear him, either. The frequency he used to communicate was too low for human ears to have heard him. You'd have felt it, though. Just before he wrapped his arms around you and ate you with big stabbing motions like a bird."

The family was silent for a moment, regarding me and my enthusiasm for the murderous allosaur with the same wariness you might have with one of those guys at the intersection selling tube socks. I realized I was making a hugging motion with my arms. They all took a collective step backward.

The mother nudged the boy. "Say thank you."

"Thanks," the boy mumbled as the family beelined for the exit.

"You're welcome," I called after them. Feeling pleased with myself, went to find my family, thinking that when Kai comes back out here to hunt dinosaur bones, I just might want to go with him.

Weird Science

Seriously, you guys, if I had a nickel for every time someone said, “Mrs. Judy, I need to have a word with you about Kai,” and then sat me down to gravely list the series of horrible things my son did during camp/school/whatever I’d be like

 :::

Science camp started out great.

Kai was excited. He’d put on his favorite dinosaur shirt.

“Are you ready?” I asked him.

“I was born ready,” he replied, which was probably true.

When we opened the door, the first thing we saw was about 6 kids building with Legos. Kai drifted over there, but the leader, a guy whose nametag read, “Graviton Greg” called him back.

“You can go over there,” Graviton Greg said, “but first you need a nametag.”

Graviton Greg wrote Kai’s name on a name tag sticker and handed it to Kai, who tried to find a creative place to put it.

“Kai,” Graviton Greg said, “I’m going to need you to put that sticker on your shirt so I can see it when I look at you.”

Kai eventually put it on his shin.

“You’re going to have lots of chances to be different today,” Graviton Greg said, and I knew we’d achieved some level of understanding all around.

Ryan, on the other hand, was murderous.

“How come Kai gets to go to that camp and I don’t?” Fat tears began to run down her cheeks.

“Because you’re not having a hard time at camp,” I replied.

“I hate my camp,” she said. “One of the Olivias pinched me on my arm and it really hurt.”

I squeezed her hand.

That, however, is a therapist’s bill for another day.

Sigh.

:::

So Monday was fine, but on Tuesday, Graviton Greg needed to speak with me.

He was gentle and kind, but his complaints about Kai were numerous. Kai had pulled his pants down in front of the whole class. He had punched and shoved some kids much smaller than he is. He took a 25 minute bowel movement that made the other kids anxious. He was obsessed with toilets.

Not one of these behaviors is new, so I waited for Graviton Greg to finish. He seemed so patient and nice, but gravely serious as well.

“I’m worried about the safety of the other kids, and having to explain why they saw another kid pull down his pants,” he said, almost apologetically.

“I understand,” I said.

“And I know there’s a lot going on, a lot of things he’s going through, a lot of electricity.”

They’d been working on circuits that day.

“Was he inappropriate with electricity?” I asked.

“No, literally there was a lot of electricity. He was holding a wire and made a lightbulb light up without touching it to a power source.”

“Wait, what?” I asked.

“Yeah,” he went on, “I made him repeat it a few times to make sure. He has so much electricity going on that he just made lit that bulb up on his own.”

The amount I know about circuits couldn’t fill a thimble, but this seemed like a big deal.

Gravitron Greg went on. “So I’m looking for help here. What should we do?”

“So, like, Kai lights things up with his body?”

“I just need to keep everyone here safe, and I can’t have Kai pushing smaller kids. I want to be fair to Kai but I also don’t want to have to explain a bruise to another parent.”

It wasn't that I didn't take Greg seriously, but you guys!

“Is that unusual? Lighting up a lightbulb with your own electricity?”

:::

Anyhoo.

I told Graviton Greg that I would take care of things with Kai that evening. I told him about the magic 1-2-3 count that works when he needs Kai to cease and desist immediately. I told him that I was sorry.

And I gathered Kai and we left.

When we got in the car I laid into him.

“Do you hate science camp?” I asked.

“No,” he replied.

“Because you’re acting like you want to get kicked out.”

He didn’t reply.

“And this cost me THREE HUNDRED DOLLARS.” I said, the rage building.

“Did you put it on your credit card?” Kai asked.

“Kai,” I said, “We are DONE with the pants thing. There is never a moment, not one time, where it’s okay to take your pants off in public. Not. One. Time.”

He gave a little twittering laugh. “But, I was so surprised by the experiment that my pants just slipped off!”

“KAI,” I said, hurling his name like a knife. “You are done. There is never, not one time, ever, that you are EVER to take your pants off in public again.”

“But..”

“Let’s have a little quiz,” I said. “Is it okay for me to take off my pants right now?”

Kai let out a moan.

“Well?” I asked.

“No.”

“That’s right.”

:::

Later on, Kai asked me to buy an episode of Minecraft Story Mode for him. Don’t worry, you don’t have to know what that is. I sure don’t.

But Kai sure knows what it is, and as a result, I had a nice, fat carrot to dangle in front of him.

“I will download that for you if I get a good report at camp.”

“Okay,” he said brightly.

“In fact, I explained to him. “here’s how this is all going to go down. You are going to go to science camp tomorrow. You are going to keep your pants on. If you need to poop, you’re going to limit yourself to 5 minutes and then be done with it. You are going to use your words instead of pushing or hitting other kids. If you can do all that, you will get the next episode of Minecraft Story Mode.”

“Okay,” he said again.

“And the next time I find out you’ve pulled your pants down in an inappropriate place, there will be no iPad, computer or TV for two weeks.”

“Okay,” he said.

“And not just at camp. And not just tomorrow. But everywhere, and every day for the rest of your life.”

:::

“Was he good?” I asked Graviton Greg the next day at pickup.

“He was so good! We were like, ‘What did she say to him last night?’”

I smiled and nodded. “I hope the rest of the week goes as well.”

I gathered up Kai’s many projects and we got into the car.

“Can I have it now?” he asked.

I turned to look at him. “When is it a good time to take off your pants?”

“When you’re in your own room or in the bathroom.”

“Yes,” I said. “You can have the next Minecraft Story Mode episode.”

We drove away, both of us satisfied with what we had accomplished.

And while rewarding a fourth-grader for passing the low, low, low bar of keeping his pants on for 6 hours might seem extreme, I’ll shell out some pretty big bucks for him to finally internalize the idea that taking ones pants off in public almost never ends well.

I mean, “I was so surprised that my pants just slipped off,” is sort of cute when a little boy says it, but becomes progressively less cute as the years wear on.

Amirite, ladies?

In which I finish the story I started yesterday about summer camp

This post is continued from yesterday.

I called the camp director, Jenny, from the car, identifying myself as Kai’s mom.

“What can you tell me about today?” I asked.

“Oh, yeah we had an incident where Kai bit someone, an eleven-year-old.” She said it with an air of incredulousness, the emphasis on “eleven-year-old,” as if that somehow made a difference.

So an eleven-year-old threw Kai’s stuff out of a locker.

“And what was the reason?” I asked.

“I wasn’t there,” she said, “but from what I understand there was no reason for it at all.”

Not bloody likely. Not in a million years.

“And then what happened?” I asked.

“We filed an incident report and it went downtown,” she said.

I had no idea what this meant. “What does that mean?”

“It means that we’re covered and we can see what the other family wants to do.”

So glad you’re covered, Jenny. Who can I murder?

I debated how to respond. For one thing, Jenny’s account contradicted Kai’s, and she was clearly in CYA mode. I never want to be that parent, who thinks her little snowflake is always innocent, but Kai had no reason to lie to me at that point.

“Kai says that another kid was preventing him from using a locker, and it got physical.”

Jenny hesitated. “That’s not my understanding,” she said.

I took a bracing breath.

“Jenny,” I said, “I’m going to say something to you that sounds like just the kind of thing a parent says,” I began. “But there is no way on God’s green earth that Kai bit some kid without provocation. Should he have bitten someone? Of course not, but you can’t tell me that he didn’t have a reason.”

She was quiet for a minute, and then asked me to hold on. She began to talk with someone in rapid-fire Spanish, whether about Kai or me or something else entirely, I have no idea.

When she got back on the line, her tone had softened.

“Kai’s been coming here for a lot of years and he’s never been violent,” she said.

“Exactly,” I said.

“I’m getting a lot of stories,” she said.

I’ll bet she was.

“Who picked him up and carried him from the locker room?” I asked.

“I don’t know,” she replied. “Maybe Marcus.”

Marcus is a counselor we’ve known for years. He knows Kai. His former counselors used to make sure Marcus was with Kai in the locker room.

“If it was Marcus, I’m totally okay with that,” I said. This is true, but the fact remains that Jenny didn’t know who had pulled the boys apart, carrying mine kicking and screaming from the room.

I told Jenny of the other hat incident, the one with the scratch.

“No one reported it to me,” she said.

I told her I’d informed Luis and asked him to keep an eye out.

“Has Kai ever had an inclusion aide at camp?” Jenny asked.

“No,” I replied. “We’ve never had a problem.”

She thought about that for a moment. “You’re right,” she said.

I know I’m right.

She told me that she would reach out to Marcus, to see if he could more closely shadow Kai, especially in the locker room and at lunch.

“I found it, by the way. The hat. Took me about 30 seconds. It was in the garbage at the pool.”

Jenny, I'll see you next Tuesday.

:::

I drove to therapy fighting off tears on Kai’s behalf. The powerlessness, the humiliation he must have felt. He would have replayed it all day, over and over in his mind. And then! Having to go the rest of the day without his hat. The cruelty of that alone made me want to murder someone.

I texted Marcus. He hadn’t been in the locker room, but heard the whole story—a story, by the way, that is exactly as Kai told it. He promised me that he would put his stuff right next to Kai’s in the locker room. He’s good protection, well over 6 feet, not to mention cool.

But still.

I wanted to find that eleven-year-old and pound him into the ground. I wanted to show up to every single locker he’d ever have for the rest of his life and throw all of his shit out of it and light it on fire.

I told Scott the story when we got home.

You should have seen his face.

:::

The next morning, I asked Kai if he wanted to go to camp.

“No,” he said. “I want a break.”

“You’re not spending the day on your iPad,” I warned.

“I don’t want to go,” he said. “I just want peace.”

“Peace from what?” I asked.

I knew. I mean I knew, but I wanted to hear him say it. I wanted to know if he didn’t want to go because of what happened or because he was being, I don’t know lazy or whatever. I wanted to know if I should push him or not.

“From the bullies,” he said. “They bother me and take my hat.”

“What if I told you that I can keep you safe?” I asked. “Marcus will be with you the whole time.”

“Naw,” he said.

I went upstairs to find Scott. I needed his opinion about camp.

“What do you think?” I asked.

“He used the word, ‘bully?’” Scott asked.

“Yeah.”

“Kai doesn’t have to go places where people are mean to him,” Scott said.

I nodded.

“That’s what I needed to hear,” I said, and went back downstairs.

:::

“Why do I have to go to camp and Kai doesn’t?” Ryan protested as we drove to the park.

“Because that’s how it is,” I said.

“It’s no fair,” she said.

No, it’s not.

I walked her in and went to find Jenny. She was gone but her assistant was there.

“I’m Kai’s mom,” I said.

She looked up at me. “Yes,” she said. “Can I help you?”

“Do you know what happened yesterday?” I asked.

“Yes,” she said, guardedly.

I asked to see the incident report, but she said it was “private.”

“A report about my son is private? From me?” I asked.

She nodded.

“Kai doesn’t want to come back here,” I said.

And I watched her demeanor change.

“He doesn’t want to finish?” she asked. She seemed to genuinely care.

“No,” I said. “He says he’s being bullied. By eleven-year-olds.”

Something in her broke then, and suddenly she knew the entire story.

“The kid he bit isn’t the bully. The bully was the kid who threw his stuff out of the locker. The kid he bit was standing up for Kai, trying to keep them separated. Kai was just so upset he lost control.”

I stared at her.

“The kid he bit, it’s his birthday today. He didn’t come to camp.”

“Oh, god. What a bad situation all around,” was what I said. But what I left unsaid was what a massive failure of all the adults in charge. They knew there was a bully! They knew the whole story and tried to tell me that Kai bit some kid with no provocation!

She thanked me for being so understanding, and said she hoped Kai would at least come back for the beach party in a couple of weeks.

I told her we would try, but I didn't really think it would happen.

Marcus was so nice when I told him that Kai didn’t want to come to camp.

“Not feeling it today, huh?” was what he said good-naturedly.

But I knew he felt bad, too. He likes Kai a lot.

I drove to Starbucks, thinking the whole time about what had happened: the obfuscation, the melee in the locker room.

In line for coffee, I thought of the kid who’d stood up against a bully on Kai’s behalf, of what courage that takes, and in the ensuing fight got bitten on the arm for his trouble, and my heart broke for him.

When it was my turn to order, I wiped a tear with the heel of my hand and ordered a decaf Americano.

:::

Kai spent last Wednesday making Minecraft videos with Monica’s college-age son, Jonathan, so that I could go to work, but as Jonathan was spending the following four days at Lollapalooza, this was not a long-term solution.

I started Googling other camps, because if Kai wasn’t going to go back to the park district camp, he was still going somewhere. I had things to do and Kai needed to have some structure.

There is a kids’ science place not too far away from us, and they had a spot in their week long science camp for the following week.

I gave them a call to see what kind of people they were over there.

The director answered the phone, and I told her who I was and that I was considering her camp for my autistic son, and did she think it would be a good fit?

“This is a science camp,” she said. “We get a lot of autistic kids. They all seem to really like science.”

I gave her my money and told her we’d see her on Monday.

:::

But then, the craziest thing happened.

Kai went back to Park District camp on Thursday.

This was his idea.

“Are you sure?” I asked.

He said he was.

I consulted Scott, who said that sending him back was a good idea, as long as Kai was into it.

I think I asked Kai 10 or 12 times that morning if he was sure, and when he said that he was, I slathered him in sunscreen and sent him to camp.

“What do you do if you have a problem with another kid?” I asked him. We’d been practicing.

“Tell a counselor,” he replied.

“And what will that counselor do?” I asked.

“Call you.”

“Exactly.

We saw Jenny on the way in.

“Hi, Kai!” she said.

Then she covered my hand with hers. “Marcus will be with him today.”

When we walked into the multi-purpose room where the kids sign in and line up, Marcus came up to Kai, offering to have Kai hang out with him and the other counselors over by the stage.

“Naw,” Kai said, and went to sit with his group.

They greeted him with a chorus of “Hey Kais” and he sat down.

I told him to have fun and I left, full of apprehension and pride, too, at Kai’s resilience and his wanting to do normal things like sit with the other 9-year-olds instead of being singled out.

Kai made it through that day and the next, though he did put up a slight protest on Friday.

“Why don’t you want to go to camp today?” I asked.

“Because camp is so boring,” he said.

And because that was the wrong answer and because I had to work, Kai went to camp.

“Just one more day,” I said. “Science camp starts next week.”

In which everything is fine until it isn't

Kai’s been going to the same Park District day camp for four years. It’s close, it’s cheap, and we’ve always had a great experience. The first year, I dropped him off on the first day with a, “He has autism, ‘kthanksbye!” and ran out the door to do whatever it was I was late for.

And if he wasn’t a perfect camper—see his tendency to wander—his counselors tended to fall in love with him, thereby ensuring that he was well taken care of. The campers swim, they go on field trips to other parks, they ride bikes, and Kai always seemed to enjoy it. We never really needed an aide at camp (an inclusion aide, they call it), because it’s about 10,000 times easier to get Kai to go to the playground than it is to get him to write a topic sentence and four supporting ones.

This year, Kai has been less enthusiastic about camp. I chalked this up to him missing his camp counselor from last year, Vanessa. Kai had a little crush on Vanessa, which I know not because he told me, but because he always said her name in a breathy sigh: Vanessaaaah. Apparently, his new counselor, Luis, didn’t have the same je ne sais quoi (and I think we all sais quoi).

:::

A few weeks ago, I noticed that Kai had a scratch on his forehead.

“Where’d you get that scratch?” I asked.

He told me he didn’t have time for my questions. This was fine, because I also didn’t have time for my questions, as I was running out the door. Scott, however, got the full story out of him, though Scott said that Kai didn’t wat to tell him at all.

Some kids at camp had tried to take his hat, and scratched his forehead in the process.

“Kai,” I asked later, “were you guys playing and that’s why they took your hat?”

“No,” he said.

“Were they mean-teasing you?” I asked.

“Yes.”

I was silent for a long moment. Kai was lost on the iPad.

“Do you want to keep going to camp?” I asked.

“I will take a day off,” he said.

“You’re not playing on your iPad all day,” I said to him.

He sighed. “Fine, then I’ll go to camp.”

:::

Autistic kids are great targets for bullies. Sometimes they can’t distinguish between genuine friends and manipulative jerks. Sometimes they don’t have language to tell on their tormentors. Sometimes they act weird and do weird things, making them easy fodder for someone looking for power.

Kai’s had a lot of support around spotting a bully. He’s had IEP goals about it, in addition to units on bullying in his social skills group. At school he has an aide, Dalila, who can be eyes and ears, plus they watch him like a hawk there. But camp is different, especially this year.

I wondered about these hat-stealers. Kai couldn’t tell me who they were or even whether they were boys or girls. I worried. But he kept saying that he liked camp and wanted to go back. I took him at his word. He would tell me if he didn’t want to go back, I reasoned.

The next time I dropped Kai off, I spoke to Luis about the incident and asked him to keep an eye out.

Later day when I picked Kai up, I looked around at the group of 9-year-olds and wondered which of them had tried to steal Kai’s hat. I picked out one kid, a beefy kid who was challenging the other boys to an arm wrestling match. He got one taker, and immediately won the match, but…

“You cheated,” I said to him.

He looked at me, surprised.

“You’re supposed to keep your elbow on the table. That’s regulation.”

“Oh,” he said to the kid who lost. “Sorry.”

Of course, I had no idea whether this kid was a hat-stealer or not. He seemed like a nice kid, actually.  Kai was sitting right next to him reading a book and everyone seemed to coexist peacefully. He said goodbye to us when we left.

Kai’s scratch healed. Luis seemed genuinely happy to see Kai every day.

We moved on with our lives.

And then it all went south.

:::

Our friend Monica picked the kids up from camp last Tuesday, and warned me that Kai was in a state because he’d lost his hat.

“Lost his hat” was how it was presented to Monica. If you know Kai, you know that he’s never without his hat—even in family portraits—so I definitely understood his distress.

“How did you lose your hat?” I asked when I’d caught up with him. “When did you have it last?”

“At the pool,” he said, miserably.

I figured as much. He’d once lost all his clothes at the pool when he put them in a locker and then didn’t remember which one. I figured the same thing happened that day.

“Is it in the lost and found? Did you check?”

“Just forget about it,” Kai said.

“And your sunglasses?” I asked. He had won a pair of sunglasses with a crazy lightning bolt attached to them at a crane game in an arcade.

Kai made a sound like, “Hunnnorrrrl.” I could hear the catch in his voice. He was near tears.

“Kai,” I said, “I can help you but you have to tell me what happened.”

“I don’t have time,” he said.

“Kai,” I said, beginning to wonder if this was something more than just losing his hat. “What happened?”

“A kid took them out of my locker.”

“And then what?”

“I don’t want to talk about it,” he said.

I started driving. “I’m trying to help you get your hat and sunglasses back,” I said. “Please tell me.”

Kai started to cry, whether from reluctance to tell me or reluctance to relive the situation or frustration—or all three—I don’t know. “I was using a locker, and someone took my hat and sunglasses out of my locker, and wouldn’t let me use it, and I tried to get back in and he was blocking me, and…I bit him.”

“Oh, my God. You bit a kid?” I asked.

“Yeah.”

I processed this for a moment.

“Then what?”

“A man picked me up.”

“Who?”

“I don’t know.”

Alarm bells were clanging by now. “One of the counselors?”

“I tried to kick him, but only got one good kick,” Kai said.

“Jesus,” I said, deciding to let that go for the moment. “Then what happened?”

“I got a timeout for all of swimming.”

“Jesus,” I said again.

:::

Now, for those of you following this at home, I’m going to sum up Kai’s story for you.

• Kai was changing for the pool, and had chosen a locker. Locker number 45, to be exact. And
• Some other kid decided that he wanted Kai’s locker, and removed Kai’s hat and sunglasses from it. This upset Kai very much, and he tried to force his stuff back into the locker.
• The other kid was preventing him from doing this, and
• Kai bit him.
• Eventually a counselor picked Kai up and carried him from the locker room, but not before Kai got a kick in at the counselor.
• Kai had to sit in time out during swimming, and, in the melee,
• Kai’s hat and sunglasses went missing.
• Oh, and lest we forget, this was all presented to us as “Kai lost his hat.”

I parked the car in front of the swimming pool.

“Stay here,” I said to Kai, and went up to the guard. Not the lifeguard, the guy whose job it is to make sure you’re not packing heat at the pool. Yes, that’s a thing.

“My son lost his hat and sunglasses today. He’s a camper. Have you seen them?”

The guy looked around his office.

“No,” he said. “I have some towels, and this old t-shirt.”

I looked around the office, too.

Feeling defeated and full of confused emotions, I turned to go.

“There’s a hat in the garbage in the men’s locker room,” the guard offered.

I turned to look at him.

“Could you go get it?” I asked in a clipped tone. Obviously this was Kai’s hat. I had no idea why the guard hadn’t started with that little tidbit of information.

He returned shortly, brandishing Kai’s green Minecraft hat, holding it away from him as though it was thoroughly offensive.

“What about the sunglasses? They’re blue with a lightning bolt on them.”

He looked like I’d suggested he clean toilets with his toothbrush.

“But,” he protested, “it’s the garbage.”

I narrowed my eyes at him. “I’ll go in there if you won’t do it,” I said.

He sighed. “Fine,” he said, and went back into the locker room. He returned seconds later.

“Not there,” he said, his eyes everywhere but on mine.

And though I knew he hadn’t looked, I decided that the hat was victory enough, and left. I had bigger fish to fry.

I handed Kai his hat when I got in the car.

“What the fuck?” Kai asked.

And because he’d used it appropriately, and because these were my exact sentiments, I let that go, too.

To be continued.

In which Kai and I both take off our training wheels

Kai’s longtime occupational therapist, Emily, made a suggestion last spring that it might be time to think about winding down. She said she was running out of goals for him.

Emily has been seeing Kai since he was two. She came to our house when Kai qualified for Early Intervention. Ryan was weeks old. Kai is now old enough to say sarcastic things like, “Duh,” in response to a question. Ryan is tall enough to ride roller coasters. We’ve been doing this a long time.

I got kind of panicky when Emily suggested we might take a break. For one thing, he still needs…something. He needs heavy input. He likes to crash into the big pillows and roll himself through the squeeze machine. He gets a little bonkers if we skip a couple of weeks. And yet, we are running out of goals. We’ve been through coordination goals, catching and throwing, fine motor, shoe-tying, determining left from right on yourself and somebody else. Emily said she was reaching this summer—they’re working on keyboarding.

Emily lives in my neighborhood, so she knows what a slog it is to get out to the therapy center. It’s a  four-hour endeavor, and most of that is spent in the car. I whale through audiobooks—last summer I bought them according to length (I spent 95 hours on an exhaustive biography of Elvis Presley). There are a lot of days that I struggle to stay awake on the drive and have roll down the windows and sing or call Scott and make him talk to me until he has to run to a meeting.

“Think of all the free time you’d have,” Emily said.

And it’s true. Four hours is a long time.

Especially since we go to the center not once a week, but twice—on Thursdays, we go for group  therapy. The group that Kai attends on Thursdays has a parent component to it, where we are supposed to talk about our kids’ struggles with ADHD. Last Thursday, however, I hijacked group time to talk about no longer doing OT.

“Who am I if I’m not doing this every week,” I asked. “And he still needs…He still needs help.”

The director of the group suggested that it might be time to find Kai ways that he can get heavy sensory input by himself through sports, which we would have time for if we weren’t always hauling ourselves to therapy.

All of that was true. Kai does need to begin to take ownership of his needs, and we would have time for things like Ninja training, which is what Kai calls martial arts. Or swimming lessons. Or whatever. The director said that her son found that he could get a lot of his sensory needs met by skateboarding and had me almost convinced that turning Kai loose in the world on a piece of wood with wheels was a good idea.

I still felt a little lost, though. Is it really time to be done? Kai’s not…I mean, he can’t…But…

My attachment to the center and this course of therapy—is it habit? Muscle memory? What if everything falls apart when we take these things away?

“We’ll still be here,” the director said, “if you need us.”

I nodded. I guessed that we could try some form of tapering down. Besides, we would still be coming to the center for speech.

After group was over, Kai’s speech therapist said she wanted to talk to me.

She thought Kai was ready to take a break from speech, too.

:::

A few days later, I was on the phone with some folks from Rush Hospital’s autism treatment center. They were looking for some kids Kai’s age to participate in a social skills study which would, in essence, be free therapy. Plus it’s only a few blocks from my house.

A research assistant was asking me questions about Kai, like when was he diagnosed and is he on any medications.

“And what is his highest form of communication?” he asked. “Would you say he’s nonverbal, nonverbal but uses assistive technology, has some words and phrases, or speaks in full sentences?”

There but for the grace of God, I thought. “He speaks in full sentences,” I replied.

“Can you give me an example of a full sentence?”

I drew a total blank at this. Kai talks. He asks for what he wants and will give you a full description of any dinosaur. You can ask him if he knows what the opposite of nocturnal is because you have no idea, and he will tell you that it’s diurnal, and then you’ll ask him how he knows that, but he can never find his shoes, and he’ll laugh and say, “Good one,  Mommy.”

I didn’t know what to say, so I said, “When he has to go to the bathroom, he’ll say that he needs to see a man about a horse.”

The research assistant was quiet on the other end. “Is that your answer?” he said, finally.

I said that I supposed it was.

:::

After I hung up (Kai qualified for the study—the effect of oxytocin on social skills) I was thinking about Barb, Kai’s speech therapist at the center, saying to me that Kai has so much language that he was ready to be done for a while.

“How do you feel about that?” she’d asked me.

The truth of it is that I always fear that people will take Kai’s services away, that he’ll rock school so much that they’ll take away his support. But then, that’s what we want, isn’t it? And Barb isn't school, for whom Kai is a budget line item. Barb knows Kai, she  likes him. Her eyes got a little watery talking about saying goodbye.

“It’s a good thing,” Barb had said.

And it is. It really is.

But, he still needs help. He hasn’t made a single friend at camp. One of the kids stole his hat, and in the process scratched his forehead, leaving a one-inch gouge in his skin, and Kai couldn’t tell who had done it.

He still needs…

He still has autism.

:::

Friday was “bring your bike” day at summer camp. I, of course, completely forgot and had to go back home and get the kids’ bikes. This was no small feat considering it was 250 degrees out, their bikes are heavy and awkward. They both still had training wheels.

I sort of hated to bring Kai’s little-kid bike to his big-kid camp. I wondered if he would get made fun of for his training wheels. Later that day I called this special needs recreation place in Aurora that gets special needs kids riding, and left a message. I thought about bargaining with Emily, that I would consider taking Kai out of OT after she got him riding a bike, and not a moment before.

When I picked the kids up that afternoon, I asked if they’d had fun. They said they had.

“My bike is so heavy,” Kai said. “It’s hard to go uphill.”

“You know what would make it feel much lighter?” I asked.

“What?”

“If we took off the training wheels.”

Kai seemed to consider this.

“Tomorrow,” I said. “We’re going to do it tomorrow.”

So we did.

And this happened:

 

Suddenly, Kai could ride a bike, and as I watched him pedal away from me, I found to my surprise that rather than having any sense of sunrise-sunset nostalgia for a little boy who just discovered freedom, I was deeply, profoundly relieved. I could begin to imagine that we could, maybe, begin to let go of our old routine, our old notions of what we need.

In group last week, I took a moment to wallow in self-pity.

“The thing about autism is that there’s nobody steering this ship but me. How will I know what our next steps are?”

The director, who has her own, grown, special needs son, was kind enough not to judge me for my brief lapse into whiny petulance. “That’s the case with any disability,” she said. She said we’d figure it out. That Kai would figure it out.

So I don’t know what we’ll do in the fall. I think Kai still needs social skills groups, and I’m trying to find one. He needs massive help managing his ADHD. There’s that oxytocin study. I told Scott to get Kai a skateboard. And as Saturday became Sunday and we found ourselves back at the park, Kai whizzing past us on his bike, the brim of his hat peaking from under his helmet, I realized that I was beginning to feel a glimmer of freedom, too.

“When I ride my bike really fast, it feels like I’m flying,” Kai said later.

I pulled him close and kissed him on his cheek and he giggled, too elated to remember to be embarrassed by my kiss.

“Are you going to tell the kids at camp that you don’t need your training wheels anymore?” I asked.

“Naw,” he said. “I’ll show them next year.”

And I imagine that he will.

In which Kai does three mundane things beautifully, and all by himself

Kai’s teacher has been making references to the fact that Kai is “getting older,” by which she means he is beginning to make some changes, these changes being primarily a marked increase in sullen defiance and a tendency toward eye-rolling. He ripped up his paper in health class right in front of the teacher. He says the word, “Fine,” in response to being told what to do at school with as much passive-aggressive disgust as any teenager.

We haven’t seen this so much at home. Or maybe since he has fought me tooth-and-nail over Every. Little. Thing. for the whole of his life that a day his teacher calls him defiant is just a day I’d call Thursday. But there have been some developments around here that signal some of the changes she’s talking about, such as his not wanting me to see him naked, or giggling at the word, “underwear.” Just yesterday he was watching something on YouTube and exclaimed, “What the hell?” and then looked at me and apologized, which is the very beginnings of the possibility that one day he might actually have a filter.

But then there is, apparently, a flip-side to these changes. Some of them are good. Astonishing, really.

Last week I picked out the coat I wanted him to wear for his field trip.

“Not that one,” he said, reaching for a lighter one.

“Kai, you’re going to be outside all day. You need a warm coat.”

He zipped up the one he’d chosen and said, calmly as can be, “Mommy, you always make me wear that coat and I’m always too hot and it just goes in my backpack. This one is fine.”

The 1-2-3 count about to form on my tongue, the one he always obeys because he knows that I am serious. But with great effort I shook off the impulse, the muscle memory of doing all of the deciding for him, this boy who seemed to want to decide himself if he’s too hot in one coat vs. another. He seemed so reasonable, so capable in that moment that I didn’t press him, even if I was worried he’d be cold all day.

“Okay,” I said, putting the heavy coat back into the closet. “I like the way you used your words.”

Pictures from the field trip to the zoo that day show Kai clowning around with his friends, no longer even wearing the lighter jacket in the weak May sunshine. He had been completely right, and had made me understand that in tiny (very tiny), incremental steps, I am going to need to learn how to let him go.

:::

There are some ways in which Kai is like a toddler. His lack of impulse control makes him unpredictable. He disappears, wanders, damages things. I asked our neurologist if any of the ADHD medications had a component to address this, and he said no, that I would have to continue to watch Kai oh, so closely, that he still absolutely need his paraprofessional at school.

But the coat incident started the ball rolling for me to try to give him some more leeway. He’s been asking to do some chores to earn things he wants. Chores are problematic around the house partially because it makes Scott nuts when, say, the dishwasher is loaded incorrectly or there’s any water on the floor ever, and partially because anything that I trusted Kai to do (clean the nose-prints on the back door, for example) required effort on my part to remind him. Finally, I landed on the perfect chore.

“Kai,” I said, “you are now in charge of cleaning up the dog poop.”

He let out a moan of disgust. “Why can’t I mow the lawn?”

“Because you have to pick up the poop before you mow it anyway.”

He was quiet for a few moments.

“This is the chore I want you to do, Kai.”

He sighed.

“Fine.”

And so I went outside with him, armed with poop bags, and showed him how to hunt for dog turds, carefully folding the bags back on themselves so as not to get poop on his hands.

“This poop smells,” he said by way of complaint, but he stayed doggedly with it. (See what I did there?)

When we were done we had several bags filled with poop that I planned to take out to the alley next time I left the house.

“Would it be extra helpful for me to put these in the garbage?” Kai asked.

I stared at him. When in this life has he ever been extra helpful?

“Yes,” I said at last. “Take them out to the alley and put them in a black garbage can.”

I had the thought that I should go out there with him, and decided instead to see if he could do it without me micromanaging the entire process—opening the garage door, reminding him to look both ways in the alley, of where the proper garbage can was. I went inside and stood in the kitchen window, which faces the garage window, through which I could see first the door going up, then Kai’s baseball-capped head approaching the alley. I saw him look around. I saw him head toward the recycling bins. I started loading the dishwasher, thinking that I would just move the poop later, when Kai came bursting in.

“I did it!” he said, clearly pleased. “I wasn’t sure which black garbage can so I went across the alley and used that one.”

I praised him lavishly and checked off his chore chart with great flourish.

“Now can I mow the lawn?” he asked.

:::

Last night I advised kai that he needed a bath, noting the dirt under his fingernails.

“You also need your nails cut,” I said.

I asked him to start his bathwater, telling him I’d be up later for the nails, but got distracted by Ryan wanting a bedtime story and missed my window when Kai was captive in the bathtub.

I found the nail clippers and went downstairs, where Kai was watching YouTube videos on Minecraft.

“Let’s cut those nails,” I said to him, grabbing a hand.

And then I looked closer.

All of his nails were neatly trimmed.

“I already did it,” he said.

“You did?” I asked, incredulous. He usually fights me until I threaten to take away his iPad, but he’d cut his own nails, by himself and without any nagging or reminding.

Stunned, I resisted the urge to inspect the job he’d done, and instead told him that I was really, really proud of him.

“How’d you get to be so big?” I asked. He grinned at me.

And then he asked me to make him some popcorn, get him some ice water, things that, God help me, he could do himself.

And I reminded him as such, and retired to the living room with a glass of wine.

Here's looking at your unfinished Morocco report, kid

There is nothing more torturous to me than a school report. Maybe I’ll feel differently when I have a kid with a report due who gives even a mouse-sized shit about said report, but that is not my current status. No, my current status is that Kai I had a report on Morocco due the Tuesday after Memorial Day, a date the teachers must have picked because they hate us and want us to suffer horribly.

Kai doesn’t care about Morocco. And he doesn’t care about this report. Other reports he didn’t care about include Leopard Seals, Alpacas, Buzz Aldrin and Poland. Please believe me when I tell you that if I didn’t care about these reports, the number of people caring about these reports would drop to zero.

That he got any of them done is because I did them.

That’s right.

I did them. I read the assignment, created a timeline and a strategy to get them done, I planned some educational outings to the zoo or the yarn store or the Moroccan restaurant or to the apartment of a guy who gives Moroccan percussion lessons. I used the internet to find out what dinosaurs were discovered in Poland or Morocco in an attempt to hold Kai’s attention for more than five minutes. I bought the posterboard, printed the pictures, typed up the information, art directed the videos or the presentation.

Kai’s job was to stand there.

And complain.

:::

This last report of the year has been plagued with problems from the beginning. I got the assignment a week late because Kai lost his copy. Kai’s aide has been out on medical leave, so communication has been sporadic. In an effort to find some way to connect Kai with Morocco, I’d tried to hook Kai up with a guy from the Old Town School of Folk Music who teaches African rhythms, but whose communication lags several days behind every e-mail and voicemail. I’d taken Kai out for some Moroccan food, but, since the traditional dish of Morocco is not chicken nuggets and fries, the experience was pretty much a bust, as you can see from this picture:

So, as the days slipped by and the deadline loomed, I became filled with emotions that range from dread to anger to resignation, back to anger and then, mercifully, to wine-soaked denial. But then the weekend happened, and, as the saying goes, shit got real.

:::

Friday:

Kai told me that he was working on his report with his special ed teacher. With the due date approaching, I asked him to make sure to bring everything home so we could just finish it all up over the weekend.

Ha.

Hahahahaha!

HAHAHAHAHA*sob*

At 4 pm on Friday afternoon, with a report due on Tuesday, the sum total of what Kai I had to work with was ONE WORD written in pencil on a scrap of paper clipped to the BLANK assignment sheet: Morocco.

:::

After cleaning the bits of blood, bone and gray matter that covered the inside of my car from when my head exploded, I sat there and stewed in what could only be described as a deep well of rage and hopelessness.

For one thing, no one, and I mean no one, should have to do a report due at the end of May, but beyond that, what was Kai I going to do?

I considered, fairly seriously, the idea of blowing it off. Just…not doing it. What would the consequences be? He got a D in social studies? He would still pass 3^rd grade. This idea spent a lot of time on the table until I realized that Kai would actually be upset about one thing—that while everyone in class was presenting his report, he wouldn’t have one to present. The entire goal of keeping him in a general education class is that he does everything his peers do.

Plus, Kai does, actually, like to present things to his class, even if he is only minimally invested in the work.

And so, reluctantly, we put on our thinking fez and went to work.

:::

Saturday:

After I ran a 10-mile race and took the kids to a birthday party, I used the last of my remaining energy to summon Kai to me so we could get started on our report.

The first thing I did was to find out what dinosaurs were discovered in Morocco. I’m pretty sure that when you think of Morocco, you think of the Spinosaurus, a 97-million-year-old aquatic dinosaur discovered in a cave near Erfoud.

No?

I printed out some pictures of this behemouth and set Kai to cutting them out.

“This is going to give my report extra pizzazz,” he said brightly.

I also printed out a map and a flag and some Moroccan tiles to decorate the posterboard, which Kai glued on all crooked and with enough glue to trap and fossilize a mosquito.

It was around this time that I ran out of steam and opened a beer, and everyone lost interest in Morocco, but not before the Moroccan drumming guy called me back (finally) and offered to give Kai a lesson on Monday morning at 10 am.

I briefly thought about how many things I’d rather do on Memorial Day than go to some guy’s apartment so he can teach my son about Moroccan 6/8 time for $50, but if ever a grade needed to be bought it was this one, so I agreed and then went to sit on the couch for a while.

:::

Sunday:

I told Kai that we needed to finish four categories today and get them glued onto the posterboard.

“Kai,” I said, “It would appear that Morocco is bordered by the Atlantic Ocean, the Mediterranean Sea and Algeria.”

“Can I go watch TV?” he said, by way of reply.

Literally, he said that.

I stared at him for a long moment, before simply saying, “No.”

I asked him to type the descriptions of the land and water forms of Morocco.

“M,” I said.

He typed an M.

“O” I said.

He typed an O.

“R,” I said.

He typed an E, then backspaced to delete it. Then a Y.

Scott walked into the kitchen and I pretended to shove something sharp in my eye.

“Why don’t you type it,” Kai said to me.

“Because I already passed third grade,” I reminded him, before agreeing to type it up while he read me the information, which later morphed into me reading to him what I had typed and Kai editorializing that he didn’t like Moroccan food and that the Spinosaurus reminds him of the Deinosuchus, a marine reptile that has nothing to do with this project, but made it into the report anyway.

We began gluing the map and the flag, the dinosaur pictures. Ryan wanted to help, so I left them and wandered into the kitchen for stare at my computer. After a few moments, Kai wandered in and sat next to me.

“Are you done?” I asked.

“Ryan is gluing it,” he said.

And I decided that was fine and we could be done for the day.

:::

Monday:

I knew we were in trouble when Kai came downstairs in full-autism mode, all thousand-yard stare and inarticulate garblings.

“We’re going for our drumming lesson today,” I said.

“Nurrrghwuhll,” he replied.

“What?” I asked.

“Ohnghh.”

On the way over to the guy’s studio I reminded Kai that he had to be polite.

“Huhooh.”

The music teacher held out his hand for Kai to shake, but Kai walked right past him and up the stairs.

I started to reprimand Kai, but the music teacher waved me off. He was a nice guy, and, judging by the breadth and depth of the lesson, clearly a long-time student of middle-eastern and African culture.

“What do you already know about Morocco?” he asked Kai.

“That’s where they discovered the Spinosaurus,” Kai answered. “And I’m hungry.”

The guy laughed. “I’m hungry, too.”

He showed us some instruments and played some examples of different kinds of music.

“That one’s from the Berbers. In North Africa, they’re like our Native Americans like the Cherokee or the Sioux. You’ve heard of those, right?”

Kai stared into space.

“I have,” I answered, wishing for some sort of trap door to appear beneath my feet.

:::

Kai finally warmed up when he got to play a drum that I can no longer remember the name of and a tambourine called a Riq. He took some video of the teacher playing his Oud.

“What do you think so far, Kai?” the teacher said.

“I’d like to try to lift those,” he said, pointing to some 10-pound dumbbells sitting on the windowsill.

The music teacher patiently finished the wide-ranging and expansive lesson, explaining, among other things, onomatopoeia, the commonalities between Moroccan folk music and Spanish Flamenco, and at one point tapping out the rhythm to Get Lucky by Daft Punk on one of his drums.

Kai leaned into me. “This is so boring,” he said.

And I resisted the urge to murder him, but only just barely.

:::

When we got home, I looked at Kai’s assignment sheet. We still had to cover history, plants and animals, landmarks and put the music stuff together.

Kai grabbed one of his graphic novels and sat down on the couch.

“Kai,” I said, “we have to finish this.”

“Aahwrollgh,” he replied.

Suddenly, I was incredibly tired. The idea of barking at Kai until we got this thing done seemed stupid. It was 80 degrees outside. The sky was blue.

So, with Plants and Animals, History, and a video presentation of a music lesson left to do, we went to the pool.

“Ungowerouhah,” Kai said.

Ungowerouhah indeed.

Kai I have an extension until June 6.

Wish me luck.

In which we are plunged into two weeks of deep and utter despair

On Monday morning, I reminded Kai that he was not to call his classmate, Michael, fat.

He’d had a pretty good run, announcing that he hadn’t used the “F” word each day of the previous week, but then on Friday, he’d slipped up.

“What is going to happen to you if I find out that you’ve called Michael fat?” I asked.

“You are going to take away the iPad for two weeks,” he replied.

“That’s right.”

It wasn’t four hours later that I got a text from Dalila.

 

:::

When I picked him up at school, I asked him what had happened to him that day.

“I tripped over a rock,” he said.

“Oh?” I asked.

“Like 30 times,” he said.

“You tripped over a rock, and then tripped over the same rock 29  more times?” I asked.

“Yes,” he said.

I let that mystery slide into the ether, and changed my line of questioning.

“Did you get into any trouble?”

“Only because Sylas is a knob.” 

“A knob?” I asked.

“A Mincecraft knob*,” he said. “You know, he likes to kill the bushes.”

Well I don’t know, and I don’t care about Sylas’ Minecraft skills or lack thereof.

“Did you call Michael fat today?”

His shoulders slumped, but he wasn’t going to give it up without a fight.

“No,” he said.

“I already know that you did. Twice.”

He actually leaned against me then and put his head on my shoulder, the picture of misery. We both knew what was coming, and neither one of us were happy about it. I put my arm around him and gave him a squeeze.

“Do you remember what I said this morning? That if you did it again there would be no iPad for two weeks?”

Kai uttered a low and anguished moan full of hoplessness and aching dread.

:::

I got some details later from Dalila.

Kai had had a conflict with Sylas, who likes to tease Kai about whether there is such a thing as a pterodactyl, which there isn’t and which drives Kai nuts and which no doubt precipitated the Minecraft insult. This lead to some work in the peer mediation circle. Somehow the kids brought the subject around to Kai calling other kids names.

“Well,” Kai said, “Amelia is bossy and Michal is F-A-T,” he said, as though spelling it made it okay. Michael was right there.

Later, Michael gave a ukulele recital to the class during show-and-tell, strumming and singing a song. Apparently the song had a word in it like “cat” or “bat.”

“Rhymes with ‘fat,’” Kai said.

And now he has no iPad, computer or TV for two long weeks.

:::

Later that evening, at Scott’s urging, I wrote an e-mail to Michael’s mother, apologizing and telling her that we were working on this with Kai.

She didn’t write me back.

:::

This morning on the way to school, we saw a graffiti blaster truck working on a tagged building.

“What are they doing?” Ryan asked.

“They were taking off that paint,” I replied.

“That’s too bad,” Ryan said. “I think it’s pretty.”

"You do?" I asked.

It was a portrait of Satan.

“Who made it?” Ryan asked.

I sighed. “In Chicago, there are things called gangs, and those guys spray paint walls to mark their territory. They are bad people.”

“Bad like Kai?” Ryan asked.

I sighed.

“Oh, you guys. Kai’s not bad,” I said.

“I just get in trouble a lot,” Kai said.

“You sure do, honey,” I said.

You sure do.

 

*I think he meant "noob." Though "knob" does sound like a legitimate insult, doesn't it?