punchdrunkmom

In which we learn to celebrate our differences, or, at least, to shut up about them

On Tuesday, Kai’s aide, Dalila, told me that Kai called another kid, one I'll call Michael, fat.

This would not be the first time Kai had done this. He can’t remember his classmates' names, and one time he was told to line up behind a certain girl. The other kids pointed her out.

“Oh, the one with the belly that sticks out?” he asked.

That girl was sufficiently upset that her mother came to see Kai’s teacher with suggestions of bullying, and Kai’s teacher had to explain autism to her in halting Spanish.

In that circumstance, Kai wasn’t being intentionally mean, just pointing out a characteristic, though I would imagine that to be cold comfort to a girl sensitive about her weight.

This time, however, Kai wasn’t making a mistake.

He didn’t just tell the kid he was fat, he told the kid that he was, and I quote, “tired of his fatness.”

:::

“Kai,” I said, once we were in the car. “Did you say something mean to Michael?”

Kai gave a withering sigh. “I am just tired of his fatness.”

“KAI!” I said. “You may NOT call other people fat! It’s not nice and it hurts their feelings.”

“But I’m tired of his fatness!” Kai repeated.

“What does Michael’s body type have to do with you?” I asked.

“I’m tired of it.”

This was going nowhere, so I switched tack.

“What if someone said they hated boys who wear dinosaur hats?” I asked.

Kai sighed again.

“Fine,” he said. “New rule. I won’t ever say ‘fat.’”

“That’s an excellent rule,” I said.

Later, while Kai was in OT, I talked with his social worker, Sue, about it.

“Well, was it a black and white thing for Kai?” she asked. “Was he just making an observation?”

I told her that Michael’s “fatness” seemed to offend him in some way.

We talked for a while and she wrote some notes next to his name in her appointment book. We were still talking when Kai came back from his session with his OT, Emily, in tow.

“Kai told me he missed recess because he called some kid fat,” she said.

Emily said they talked about it, and while they were doing so, Andrea, Kai’s social skills group leader walked into the room. Andrea reminded Kai that there are some things we think but don’t say. Before we left, Sue asked him what he was going to do the next time he was tempted to call someone fat.

“I’m going to keep it in my mind,” Kai said.

:::

I wrote Kai’s teacher an e-mail later that night to share some of the language that we were using with Kai so that we could all be on the same page:  The “thought bubble” is where you put things you think but can’t say; “bucket fillers” are people who build others up, aka fill one’s bucket; “bucket dippers” are people who tear you down, aka take stuff out of your bucket.

I was feeling pretty good about how we’d handled this, as a team with the teachers and therapists coming together to deliver a consistent message, how Kai seemed to get it.

The next day, Kai’s teacher returned my e-mail, thanking me for sharing, and informing me that Kai had refused to sit next to Michael in group time because, as he said loudly, Michael was too fat.

:::

When I picked him up from school, I tore into him.

Hadn’t we talked about this? Didn’t we decide that Kai wasn’t going to call Michael fat anymore? I told him that I was disappointed, and that there was no way in hell that I was going to turn a bully loose into the world. I told him that he lost his iPad privileges for the day, and that he had to write a journal entry about why it’s not okay to call people fat. I told him that people come in all shapes, sizes and colors and that he should never, ever make fun of someone for being different. And I reminded him that he isn’t exactly free from some pretty hefty differences himself.

“Okay,” Kai said.

“Okay, what?” I asked, still slightly seething.

He didn’t reply.

“Kai,” I said, “what did I just say to you?”

He waited a few beats before answering.

“I wasn’t listening,” he said.

And my head exploded.

:::

Later, after I’d calmed down, I asked him what was up. I think my exact words were, “Kai, what is up with you?”

“I don’t know,” he said.

“Well, are you a nice kid or a mean kid? I guess you should probably decide.”

He thought for a minute. “Maybe I’m a little bit of both?”

:::

This morning, I reminded him that he was not, under any circumstances, to use the word “fat” around Michael.

“Just remember to keep it in your mind, and don’t say it.”

I told him that if he said it again, he would lose the iPad for a week.

“I’ll remember,” he said, and set about finding his shoes and his coat.

In the car, he was quiet, staring out the window. I reminded the kids of the schedule for the day and that I would see them after school.

“Mommy?” Kai asked after a while. “Can Michael read my mind?”

“No,” I said. “Whatever goes on in there is just for you.”

“Phew,” he said, and I laughed. 

Michael can't read your mind, kid, but I sure can.

In which all the world is a red button

The kids have been playing this game on the iPad called Dumb Ways to Die.

It’s kind of a cute game, if a game about dying in dumb ways is cute. It’s about not setting your hair on fire or selling your kidneys on the internet. Which, you know, yeah. There are these blobby looking characters and you have to put their hair fires out or stop them eating a bottle of glue. My favorite part, though, is the part where all you have to do is NOT touch the red button.

That’s it.

Just don’t touch the red button for like five seconds.

Just.

Don’t touch the button.

You should see Kai do this, the not touching.

It’s like telling a compass not to point north.

I have this R2D2 car phone charger that has—wait for it—a red button on it.

“What’s this red button for?” Ryan asked me once.

“Ha! Don’t press it,” I said.

“Why not?” Ryan asked.

“Because you shouldn’t go around pressing red buttons,” I replied.

And then Kai spoke. “I really want to press it,” he said.

“Don’t do it,” I said.

There was a pause from the back seat, the internal struggle palpable from two feet away.

“It doesn’t do anything,” Kai said.

“Lucky for you,” I replied.

:::

One of Kai’s many struggles is with impulse control. This is part of his tendency to wander, to make dumb decisions about when to leave the house, to be randomly destructive.

Take, for example, the fact that Kai pulled the toilet paper holder out of the wall last week. Most of us could probably just, you know, use the toilet paper and not feel the need to, you know. Pull the toilet paper holder itself out of the wall.

When I asked him why he did it, he said, “Because I wanted to see it spin.”

I have no idea what this means, beyond me having to call a guy to fix my wall and reinstall my toilet paper holder, which will cost fifty bucks.

Scott was much less sanguine that I about it, as it’s his fifty bucks I’m going to hand over.

:::

A few days later, we found ourselves at some friends’ to celebrate the New Year. Kai was watching videos in the basement with the other kids. Until he wasn’t. He’d wandered around the house, looking for trouble until he finally found it.

“I don’t know what the protocol is here,” the host’s brother said, having found me lurking in the kitchen near the wine, “but it seems like Kai pulled a painting off the wall.”

I found Kai in the master bedroom, and sure enough, he’d pulled a painting off the wall. Said painting had fallen and was wedged behind the headboard of the bed. There was a giant hole in the plaster.

“What happened?” I asked.

“I just—”

“Never mind,” I said, interrupting him and trying to un-wedge the painting. I could barely lift it. I scooted the bed over and tried to wrestle the painting free, finally giving up when I thought I might do more damage.

Our hostess was really nice about it. She had painted the piece, and had no trouble hoisting it out from behind the bed, assuring me that it was undamaged and no big deal.

But it is a big deal. For one thing, if Kai did this to one of Scott’s pieces of art, I would have to put him in Witness Protection. For another thing, what the actual fuck? Who goes to someone else’s house and pulls a painting off the wall?

We waited until we got home, but we yelled at him in such a way that Kai’s first few moments of 2016 were soaked in tears, and the first weekend was devoid of all screens.

:::

The next morning, I found Kai lying in his darkened room. I thought he was asleep until I saw him blink. He was staring into space.

I felt awful for having yelled at him the night before, and I crawled into bed with him. He leaned against me.

“You okay?” I asked.

He didn’t answer.

I rubbed his back.

“Kai,” I said, “I sure wish I knew what it was like to be you.”

He didn’t answer this, either.

“Sometimes, I think that for you the whole world is a red button.”

He sighed then. “Yes,” he said miserably.

:::

The following Saturday, we checked into a hotel so the kids could do some swimming, per their request. This was something we got into the habit of doing last year when Scott was trying to rack up hotel points, and since we can pretty much stay for free anytime because of the aforementioned points, we packed our swimsuits and hit the road.

The only problem was that there had been quite the New Year’s Eve bash at the hotel, and they’d trashed the pool. Some of the lights were out, and you couldn’t see the bottom because the water was murky, more like a pond. The manager said it was just dust clouding the water, and we really want to believe that.

Other, better parents might have made the kids leave, but we stayed, mostly because the kids jumped in the water before we could stop them and at that point you just hope that there’s enough chlorine to kill whatever the revelers left behind.

Ryan swam up out of the murk to show me a tissue she’d found, and I nearly threw up.

Anyway, Kai took off his goggles at one point and Ryan tossed them into the deep end knowing he wouldn’t dive under there without them. After much ballyhoo, I made her give Kai his goggles back, but no sooner had she done so then Kai himself tossed them into the middle of the pool. They sank to the bottom and completely disappeared from view.

Ryan dived to try to find them, but we never did, which goes to show you we shouldn’t have let the kids swim in that pool.

“Kai,” I said at one point, “why did you even toss your goggles into the deepest part of the pool after you already lost them once?”

Kai, his head barely out of the water, was sweeping the bottom of the pool with his toes for his goggles.

He stopped and looked at me a little sheepishly. “It was a red button,” he said.  

I laughed then, because the kind of communication we’d just had was worth the cost of a new pair of goggles. And probably the antibiotics I’ll have to buy the kids in a couple of days.

We really shouldn't have let them swim in that pool.

In which I give you the straight poop, and you probably wish I'd take it back

I told you on Monday that I got a note from Kai’s teacher. The note was in the form of Kai’s home-school journal, a notebook that is supposed to go back and forth between home and school (sorry if that was super-obvious) and let me know what’s going on with Kai.

I haven’t seen the journal in a while, but his teachers have been writing in it, so I took the time to leaf through the entries, and one thing stood out.

Kai seems to spend a lot of time in the bathroom.

Last Friday, he spent so much time in there that his teacher sent her assistant in to check on him. When Kai still hadn’t returned after 30 minutes, she sent a student in there after him. The student went to the wrong bathroom, reported that Kai wasn’t in there, which resulted in a Code Yellow while everyone searched for Kai, whom they presumed to have wandered somewhere. He does that, you know.

Anyway, when he finally turned back up, he looked at the clock and brightened.

“Oh,” he said. “I only have to do this work for another five minutes and then it’s time to go home!” At which point all the adults looked at him and then looked at each other, understanding that they had been played.

It is clear that Kai goes to the bathroom for 30 minutes on a regular basis to get out of doing work.

And he’s got us all between a rock and a hard place.

:::

I don’t know how long it takes an average person to, you know, poop, so I searched the Internet, as you do.

Here’s what I got from Yahoo Answers:

“When I’m on the toilet it takes me 2-5 minutes.” Posted by Naomi

“For me, maybe 2 minutes.” Posted by Anonymous

“For me about 3.5 hours, which is why I love Farm Heroes on my cell phone.” Posted by Jeff.

I’m pretty sure that Jeff works at the DMV.

:::

Please believe me when I tell you that you wrongly accuse your child of bluffing when they say they have to poop only once.

I won’t tell you which kid, but I will tell you that I was much later to work and MUCH more traumatized than I would have been if I had just found a nearby establishment with a bathroom in which the kid could poop. This is something I now take very seriously, and it is for this reason that I can rate the cleanliness of every gas station restroom off the Eisenhower Expressway (pro-tip, the one at 17^th Street is to be avoided at all costs. At. All. Costs.).

It is also for this reason that Kai’s teacher and his aide are at a loss. I mean, on the one hand, we’re all pretty sure he’s in the bathroom to avoid doing his work. He never has to take a 30-minute poop during recess or lunch or art or math or any of the things he likes and he’s good at. He takes a 30-minute poop during writing. Which he hates the way Indiana Jones hates snakes.

But then, on the other hand, they can’t really tell him that he can’t go to the bathroom. Like I said. You only call a bluff like that the wrong way once.

:::

Further Googling turned up this gem:

“It takes Hubby around 20 minutes to poop...once in the morning before work and once when he gets home from work (doesn't matter what time of day). 20 minutes a poop seemed really excessive to me so I asked if he was spending a bunch of that time reading or enjoying alone time, but he insists that he needs the entire time to get the deed done and that he is healthy.”

And no, before you ask, I did not AskMetafilter.

I’m pretty sure that this woman’s need to manage her husband’s bowel movements is why he hides from her after work for 20 minutes, but this leads us into the mysterious land called “guy territory.” This could be a guy thing. Guys do loiter in there (see Jeff from the DMV above). I mean, that’s where they keep their magazines, amirite? On the weekends we’ll lose Kai in the house somewhere and finally find him on the toilet playing Plants Vs. Zombies.

“Kai,” Scott will say, “that’s long enough to be in here.”

“But I’m not done!” Kai will protest.

“Well, wrap it up, pal. It’s been 30 minutes.”

:::

Kai was late leaving school on Tuesday afternoon.

“He was in the bathroom for a long time,” his aide, Dalila, told me.

“Longer than 30 minutes?” I asked.

“Oh, yeah. He left in the middle of writing his sentences and was in there until all the rest of the kids had their coats on.”

“So he didn’t want to do his work,” I said.

She shrugged. “I don’t know. Probably not. But it was after lunch, so maybe…I mean if you gotta go…”

:::

I took the kids to get frozen yogurt after school, a rare day when a therapy was cancelled and we could do what we pleased with the afternoon.

Kai was eating his fro-yo and staring into space.

“Kai,” I said, “do you ever go to the bathroom so you don’t have to write your sentences?”

“Yes,” he said. His expression didn’t change, nor did he look at me.

“Just so I understand correctly,” I countered, “you tell your teacher that you have to poop with the intent of not doing your sentences with your spelling words?”

“Yes,” he said, with the same thousand-yard stare that has become his hallmark this month.

I nodded. I had no idea how to solve this little conundrum. I thought about something I’d discussed with my friend Quincy earlier in the day. She said that she has the best luck with her kids when she asks them how they would solve a problem, giving them some agency. It was worth a try.

“Kai, what would make the whole situation better?”

He looked at me then.

“If I didn’t have to go to school for a few days.”

And I understood. I understood that writing is hard for him, that it’s not like math that comes so easily and with such self-assurance. I understood that there is so much to this writing thing—it’s visual tracking, it’s fine motor, it’s language, it’s planning, it’s all the things that are hard for him wrapped up in to one horrible daily task that he can avoid with a carefully timed poop.

As I sat there in the frozen yogurt store, thinking about how I could help his teacher solve this problem, how we could work with a behaviorist on a plan to work on the task avoidance, his OT to work on his writing, how we were going to figure out a way to get him to come out of the bathroom in a reasonable time frame that gave him agency over his colon but didn’t sabotage his learning time in 3^rd grade, I was suddenly exhausted.

I have no idea how to do any of those things.

I really don’t.

But you know what I can do? I can lock myself in the bathroom for 45 minutes, reading an InTouch and drinking a Diet Coke.

You guys, I think he’s on to something.

In which I once again lose the boy, and I get a new coffeemaker

Kai has had more trouble than usual falling asleep since the beginning of December. This, I suspect, is a combo platter of the medicine we give him becoming less effective (this happens eventually with all of his sleep meds), and anticipation of Christmas.

As a result, he’s driving everyone nuts—not answering when you call his name, refusing to do any work. His teacher, who has been his teacher for two-and-a-half years, even sent home a note home about him, which was pretty much my first note home in two-and-a-half years. I swear that woman has the patience of a saint.

I was up late last night fiddling with the Elf (as in the one on the Shelf), when Kai slunk downstairs and sat down in front of my computer. It was midnight.

“What are you doing up?” I asked, horrified for all the reasons one might be horrified to find their child awake in the middle of the night—a hard wake-up in the morning, my child-free time invaded with demands for snacks, fiddling with the damn Elf that was supposed to be Santa’s emissary and not something one’s mother moves every night so she can extort decent behavior out of you.

“Why is the Elf up there?” he asked, indicating the Elf's new position on top of cabinet. By rights, he should have been in the same position he'd been in when I sent Kai to bed hours earlier.

I cast about for a clever lie and couldn't fine one. “Oh, I hadn’t noticed. He must have already gone to the North Pole and back.”

“Can I have a snack?”

“You need to go to bed, Kai.”

“But I’m not tired and my iPad died.”

I sighed again. “You can use mine, Buddy,” I said, and I marched him up to my room. With Scott in California for the week I had Kai get in bed with me, ostensibly so I could keep an eye on him. He lay under the covers, watching Paw Patrol. I read a few pages of my book, my eyes getting so heavy that I reread the same paragraph three times before I gave up and turned off the light.

:::

It was pitch dark when I woke up, the house silent. I looked at the clock. It was 5:41.

Then I rolled over to check on Kai.

And he was gone.

Scott’s side of the bed was empty, the covers kicked down to the edge.

I rolled back over and closed my eyes, thinking about where Kai might be. I assumed he’d gone back to his room, and started to drift off again, and then a tiny sliver of doubt crossed my mind.

What if he’d gone outside again?

I mean, chances were slim that he’d done this, but who knew with Kai? Maybe he went out back to—I don’t know—play with his flashlight or dig for dinosaur fossils? The door would have locked behind him. What if he was outside shivering? Or worse?

I swung my feet down and padded to his room. The door was closed.

“Kai?” I said, as I opened it.

I stood on my tiptoes to see the top bunk.

He wasn’t there.

Damn.

Sometimes, he goes downstairs in the middle of a sleepless night, and I jogged halfway down the staircase so I could see the couch in the TV room.

Nope.

Sometimes, he goes into the kitchen in the middle of the night, eats a few ice cream sandwiches and watches youtube.

I didn’t even need to look. It was too dark, too quiet, I could feel the emptiness.

“Kai?” I called, panic bubbling.

“Kai?” I called, louder, not expecting an answer but hoping just the same.

I ran back to my room and threw on the light, searching for my Uggs, unplugging my phone.

Where was he?

The covers where jumbled at the food of the bed, and, with the desperation of the, uh, desperate, I pulled them off the bed completely.

And there he was, sleeping peacefully, curled into a tiny ball.

I stared at him for a long moment, this strange kid who has never in his 8 years and 10 months on this planet ever given me a moment’s peace, before covering him back up and crawling back into bed myself.

And that’s where 6:50 found us. And 6:58. And 7:06. And 7:14.

Later, I would discover that during the night, the coffeemaker died.

Turns out the devil really was coming for one of us.

Do you remember the 24th of September?

I walked into puppy class feeling disheveled, knowing that I hadn’t looked in a mirror for hours. I also realized I had to pee, and couldn’t remember the last time I’d done that, either. I didn’t want to be there because there were about a million other things I could be doing, but the first rule of obedience school is that you have to show up to obedience school, so Stella and I obediently went to class.

The trainer’s eyes widened when she saw Stella.

“Wow, Stella!” she said. I thought she was about to say how much Stella had grown. She’s eating like crazy, wolfing down her cup of food in a matter of seconds.

“She’s getting kind of fat,” the trainer said.

Whatever wind I had in my sails after girding myself up for puppy school left me in that moment, and a sort of profound exhaustion set in as the trainer greeted the other dogs, dogs who were thinner, and I only half-heartedly practiced our commands: sit, side sit, wait, down, let’s go.

“Stella is being really good!” the trainer called. “More treats!”

“But she’s getting fat,” I retorted, sullen as a teenager.

It was the last day of class, and the trainer had devised a game. You choose a card, green for easy, yellow for medium and red for hard, and your dog has to perform the task on the card for points.

I looked around the room and knew we were doomed, Stella and I. Most of the dogs were there with two people, people who might whip out their phones and take videos of their dogs playing, people who probably actually practiced the things we learned in class.

When it was out turn, I wanted to choose a green card—the easiest, but, since everyone had chosen a yellow, I felt pressure to choose yellow, too.

“Do a trick,” the trainer read from the card.

I looked at her blankly.

“You know, like speak or shake or something.”

We hadn’t worked on speak or shake. We’d worked on sit. A trick? Am I Houdini? I felt immediately inadequate, like I was a bad mother for not doing enough. I was suddenly over puppy class, wishing mightily for some kind of trap door to appear. I was tired and vaguely pissed off.

The trainer read my expression correctly.

“From down to sit could be a trick,” she offered.

I closed my eyes briefly, and then stood up. “Down,” I said, and down she went.

:::

That same morning had dawned like any other, though Scott was in California. This is not unusual, since he travels for work, but there’s a certain chaos to his being gone. This is partially because he hates chaos and partially because I have to be both of us. Whereas usually I might discover that he’s taken out the trash while I drive the kids to school, when he’s gone the trash is still stubbornly inside the house. So I have to take out the trash. This is not a big deal by any stretch, but there are any number of “not a big deal” items that Scott might take care of for me that he’s not here to do. Unload the dishwasher, for example. Or shoo Kai off the toilet and into his school clothes.

Or get rid of a spider.

I discovered the spider when I looked outside, and seemed to see something hanging in mid-air. As realization turned to horror, I began to understand that a spider had, overnight, devised a web that spanned the stairs that led to our garage.

The spider was huge, the size of a Siamese, menacingly striped. Several large creatures had already been ensnared in her web and were waiting to die.

“Fuuuuuuuuck,” I said.

Under normal circumstances, this would be where I told Scott about a spider and hid in the bathroom until he gave me the all-clear.

But there was no Scott. There was only me and a spider the size of a Cadillac.

Theoretically I don’t mind spiders. It’s just that they have so many god damned legs.

I ran through all the various possibilities of getting the kids to school despite my arachnid problem, including ubering the kids to school or just staying home. Scott suggested via text that I throw a towel over the whole web and he would remove the towel on Friday when his plane landed. But there was something too barbaric about that. I mean, I’ve read Charlotte’s Web. I was like some kind of Motely Crue song. I didn’t want her to die, I just wanted her to go away.

In the end, I climbed over the balcony and jumped, running to the car the way Laura Dern ran from the raptors in Jurassic Park.

  

I backed out of the garage and brought the car around to the front of the house, and decided that Scott could take care of the spider, now the size of a Winnebago, when he got home from California.

:::

On the way to school, I had a thousand thoughts. About the spider, yes, but also about the craft I was going to help with in Ryan’s class the next day, how I didn’t have all the supplies and needed to find the time to do that, and then I realized that I had agreed to sub a yoga class during the craft and oh, shit I needed to fix that, and I had to work today and I also had an appointment at 2 that I should probably move and social skills group after that and puppy school after that when, exactly, was I going  eat or shower, much less get craft supplies?

And that’s when the bee flew into my car and I started screaming.

:::

I pulled myself together enough to go to work. I moved my 2 o’clock appointment so that I could collect leaves for the craft thing on Friday. I did get that shower. I threw several sticks at the spider web until it collapsed. I have no idea where the spider went, but she was gone at this point. I took the kids to Kai’s appointment. I was feeling better, more in control if not flush with time, until I pulled into McDonald’s only to be greeted with a sign that said they would be closing at 7 pm for, and I quote, maintenance. It was 7:06.

Fuuuuuuuuck.

“Kids, we’re going to Wendy’s,” I said, a phrase that has been met with cheers by no kid ever, and I ordered two kids meals and raced home. The sitter was already on the front porch waiting for us. I know this because she called me to say as much.

After much negotiation of food bags and backpacks and drinks and iPads and come ON you guys I need you to step up and help me, we managed to make our way from the car into the house. I was carrying the backpacks. As we were unloading, my phone began to ring inside my purse. We clamored up the stairs and in the back door just as the home phone started to ring. I plopped the backpacks down on the stove and climbed over the dog gate toward the front door and the babysitter waiting on the dark front steps. It was then that the children started screaming, and I turned around. Both my cell phone and home phone were still ringing. The front door was wide open and a random person was standing there. And Kai’s backpack, which I had casually tossed on the stove, was on fire.

You guys, his backpack was on freaking fire.

Copious amounts of smoke was pouring into my kitchen, and flames were licking up the sides of the backpack from the lit burner.

I lunged for the backpack and, opening the back door, tossed it onto the grass and then ran down after it, grabbing the house phone as I went, and doused the backpack with the hose.

“Hello?” I said into the phone. No, I did not want to become a member of the aquarium.

It was only later that I wondered what I would have done if the spider was still there.

“You shouldn’t have set my backpack on fire,” Kai said.

I resisted the urge to throttle him because he was, after all, right.

:::

Stella’s second assignment was the wait command, where you tell her to wait while you hold out a treat. She’s actually really good at that, and we aced it. Suddenly, we were tied for second place.

The second place run-off between Stella and a golden-doodle named Jayce was how many down-back-up-to-sits they could do in 15 seconds. Stella did three. So did Jayce, technically, but the trainer gave her a .5 for arbitrary reasons, so we took third overall in the game. I told Stella that she had been robbed, which she had been, and that I was proud of her, which I was.

The trainer made “puppy cakes,” puppy food formed into a bone shape with a cookie cutter. There were eight dogs and she’d only made seven cakes, so two dogs needed to split theirs. The trainer eyeballed us. “Stella can share,” she said. I sighed. My dog is fat, I get it.

Nevertheless, we gamely posed for a picture together, Stella and I. I was pleased that she’d come in third, which seemed like a significant achievement in a room full of people who did not have a spider the size of Kanye West's ego on their porch or have to drag their autistic son to social skills group. People who didn’t light their son’s backpack on fire or nearly cause a multi-car pile-up on Damen because of a bee.

Funny, but I’d bet that any one of those things would have derailed their whole day. But not me.

Stella and I pulled ourselves together and took third place on a day that anyone else would have called crazy—a day that I just call Thursday.

 

Peaks and valleys

I think I mentioned that Kai is, so far this year, kicking third grade’s ass. Not only did he grow an inch, but he seems to have shaken off the torpor of late summer to find himself engaged and motivated.

I would like to say that this is due to my superior ninja mothering skills, but it is not.

Kai’s entering his sixth year at school, which is enough time to have a fairly accurate chart of his developmental peaks-and-valleys schedule. All kids have them—you can think of the phrase two-steps forward, one step back. The spectrum just amplifies Kai’s. Here’s what it looks like:

 

Kai experiences a peak in September of every year, characterized by in uptick in verbal and sometimes social skills that will last us until Thanksgiving, at which point the wheels will come off and we enter a developmental valley that lasts until his birthday. This year, the end of the peak period will coincide with a doctor-recommended mad scientific experiment to take Kai off his ADHD medications to “see what happens” (bwa-ha-ha-ha!).

Kai’s beloved kindergarten teacher has a theory about peaks and valleys involving birthdays and half birthdays as times when kids make developmental leaps, and that’s as good an explanation as any, and pretty much jives with Kai’s schedule.

Usually, when Kai has a valley, he needs more sensory input, he’s more oblivious, he talks less, he becomes uncooperative at school, his sleep becomes more erratic than even his usual deeply erratic sleep. But then he comes out of it and has made some kind of gain, and if you’ll look at the chart, we are right there.

All of this exposition and hocus pocus is just an elaborate set up to humblebrag tell you about Kai’s September peak.

:::

Kai has, in the course of a single week, asked me two questions about myself that have nothing to do with whether I’ll make him a pizza or unlock a level on Plants Vs. Zombies.

The first question came when I picked him up from school on Tuesday. He was carrying a picture of our dog Stella that he had shown his class.

“Mommy,” he said, “can you tell me the story of when you first met Elliott?”

I was so shocked and surprised that it took me a while to pull it together and remember to answer his question. I told him that I met Elliott at a pet store that was right next to my ad agency, and I’d go there when I was stressed out to pet the puppies, and then one day there was a dog there that I really liked. I told him that I’d almost named him Simon and that he was scared of everything at first, and that this was before I lived with Scott and long before Kai was ever born.

He listened as I talked, and I realized was saying so much to him that I’d never said before, talking about a life Before Kai, wondering if he had any notion at all of what that could even mean, what an ad agency is, or if he could imagine me not living with Scott, or if he even knows what “being married” is, and all the nuances of life that have just never come up because we’re too busy getting him to say “three” instead of “free” and all the rest of it.

When I was done, I thanked him for asking.

The next day, while we were once again in the car, he asked me if I’d ever been inside of an ambulance, this after we’d pulled over to let one pass us.

In fact I had, and I told him all about it, that I’d been in a car accident when I was sixteen or seventeen, and I’d had to ride in an ambulance to the hospital, but that I’d been okay.

“Phew,” he said. And then, after a pause, “Was it cool?”

“It was not cool, buddy,” I replied, “and you never want to be in the back of one because it means that you or someone you love is hurt or sick.”

I told his speech therapist about this yesterday after his social skills group.

Her eyes widened. “He asked you these questions in context?”

“Yep,” I said.

I watched her process this information, that this spectrum kid who struggles so much with empathy, who exists almost entirely in the here and now would ask not one but TWO contextually-appropriate questions about someone else’s experience.

“Huh,” she said.

“I know,” I said.

:::

But wait, there’s more!

This week, his aide, Dalila told me that Kai had asked his teacher if they could have a fish for a classroom pet, and she’d said yes.

I e-mailed the teacher to confirm this before I sent a fish and its related trappings to the classroom and discovered that yes, Kai had indeed made a successful persuasive argument that the class needed a fish and promised to talk about the fish to the class when it arrived.

She also told me that when Kai had presented his ability bag to the class—a brown paper bag that was to contain five things that he enjoyed or was good at—he was the only kid to properly introduce himself.

“Hello,” he said. “My name is Kai and I am here to show you my ability bag.”

My friends, if that’s not a peak, I don’t know what is, especially since two weeks ago the child would barely respond to his name or simple questions about what he wanted to eat. “You decide,” he’d mumble, never looking up from the computer.

And so, whether it’s the new-ness of the school year or his half birthday or whatever, we’ll just go ahead and ride this wave. It’s 10 weeks before Thanksgiving and things traditionally go sideways.

Hopefully I can find things to write about until then. 

Two very special stories

Oh, hey, how’s it going? How was the start to your school year? Please pardon me while I have this wine IV set up so I can tell you about ours.

:::

I don’t write much about the special ed process. And by that I mean that I don’t write a lot of stuff that I publish about the special ed process. Partially this is because a lot of people who read my blog also have kids that go to Kai’s school and going public with my angst about it potentially villainizes people that the community needs to (and should) trust. But it’s also because the process of getting services for child is set up specifically to take a normally confident and reasonably intelligent woman (me) and emotionally abuse her until she is but a husk of her former self, and by the time she climbs back out of that abyss, she’s moved on to more mundane matters like her son escaping the house in the middle of the night.

Kai’s IEP (Individual Education Program for those who are lucky enough not to know what that is) is the plan the public school system creates for educating him. Every child with a disability is entitled to free and appropriate education. This is a law, so the district has to educate Kai and it’s their job to figure out how to do it. Awesome, right? Except…

Except that this costs the district a lot of money. It's way more expensive to educate a kid like Kai than a kid like Ryan. Ryan just goes to school, learns stuff from her general education teacher, puts on her backpack and comes home. Kai, however, in addition to getting time with a special ed teacher, speech and social work services, has a person whose job it is to be by his side all day helping him stay on task and keeping him from wandering away or whatever else. This is a salaried position with benefits dedicated entirely to a single student—Kai. (What’s up, Dalila? Shout out!)

On the second day of school, Dalila informed me that she was told that she wasn’t going to be with him for recess or lunch this year, this according to the person in charge of scheduling the aides, and I threw what could only be described as an obscenity-filled tantrum right there on the playground and had to be asked by a teacher to please calm down in front of the children, to which I huffily replied that these were urban children and had probably heard it all before, but left the playground anyway before someone called the authorities.

:::

Anyone in Chicago knows that the school district is broke and screwed, and in an effort to save $42 million, they devised a plan to “modify” services to 50,000 special ed students. Seems legit. I mean, why not balance the budget on the backs of those most vulnerable? And why worry that the district just moved to a new office and bought all new office furniture because their old office furniture didn’t fit in the new space quite right when we can just toss a spectrum kid on the playground to wander off or get bullied or abused by someone who doesn’t know how to work with him? Am I right?

(Head explodes, painting the kitchen walls with blood and bits of gray matter.)

Anyhoo.

Kai was okay because CPS has to implement his IEP, which includes his aide and special ed modifications. Or should I say, he was okay until he wasn’t. Dalila told me to check Kai’s IEP when I got home, and, with a pounding heart and sweaty palms, realized that lunch and recess aren’t specifically mentioned.

:::

I did the only thing I could do at that point, and fired off an angry e-mail to the case manager. He’d had his aide for lunch and recess last spring after the new IEP had been set up in February, so what had changed? And then I asked that we meet to change the IEP to include lunch and recess, that I never would have signed off on an IEP that didn’t include them.

And then I said that Kai wasn’t going to school until there was a plan in place, an option that is pretty close to nuclear.

And then I waited for a reply. And waited. And waited. And the sun set and day became night and I fed the kids dinner and tried to calm down enough to teach a yoga class and later tried to get some sleep but tossed and turned all night, running over every possible outcome and fearful that we would have to take this argument to a higher authority or get lawyers involved and then I began to doubt myself, like had I overreacted and gone all over-the-top with my outrage in threatening to pull Kai out of school? And then assuring myself that I’d done the right thing, but did they secretly think, oh here we go again with Mrs. Judy and her precious snowflake what makes her think they’re so damn special, and then I reminding myself that I wasn’t there to make friends but to fight for Kai, even though I secretly want everyone to like me and that’s where morning found me last Thursday—with dark circles under my eyes and hands shaking from too much compensatory coffee.

:::

Over the summer I’d heard whispers of this, that the case manager might try to decrease Kai’s aide minutes, and I’d told my mother.

“It’s smart of them to choose you to try that with,” she said.

I looked at her like she was nuts. “But they know I’d never let that happen,” I argued.

“Exactly. That way, they can go back to the district and say that they tried but couldn’t make it work. You don’t do a job like that without being somewhat political.”

I thought about that while I waited for the case manager to show up on Thursday morning. Did I go crazy on them, and in doing so behave exactly the way they predicted I would? Or is that very thought the sort of paranoid delusion of a crazy person? And when the case manager showed up and calmly explained that this was all just a Silly Misunderstanding and of COURSE Kai has recess coverage for his safety I still wasn’t any closer to an answer regarding my potential for psychosis or their potential for treachery, but Kai still had his aide so I just left it at that.

:::

We are okay until December, and after that, who knows. I mean, after that, no kid in Chicago is safe because the budget includes $500 million unicorn dollars—money that’s in the budget provided the Illinois government generously decides to give it to Satan’s handpuppet Rahm Emanuel. Considering that Early Intervention therapists aren’t getting paid to treat special needs toddlers and Illinois lottery winners aren’t getting their awards because the governor wants to burn the whole state to the ground, well, feel free to draw your own conclusions.

(Head explodes again.)

Anyhoo. That’s a story for another day.

And speaking of stories, Kai told his speech therapist the story of the day he and Stella met on Monday. It was the longest string of sentences he’s ever spoken, a true story with a beginning, middle and end, punctuated with funny and sweet observations (“We drove for many hours, saw some windmills, then drove for many more hours.”) It was so long that the therapist realized that Kai’s voice lilted up and down during the course of it because he has no practice putting so many words together and breathing at the same time.

We both stared at him, open mouthed, both of us rendered speechless.

So you know. Despite the school districts vast conspiracy to make me go insane, Kai’s sort of kicking ass right now.

With Dalila right there by his side.

In which we pour the sand out of our too-small sneakers and go back to a place that had become but a vague memory

I dropped the children off for their first day of school yesterday, after what I think might have been the longest summer ever. It wasn’t long in the sense that I was sick of them, though the thought of being able to run an errand without hustling and cajoling two children out of the car and across streets and into and out of stores and back across streets and back into the car while they whine/cry/put items they haven’t paid for into pockets/demand Chipotle is pretty nice.

No, the summer felt long because it was. Long. As. @#$%&. Summer camp ended over a month ago. At this point, we’ve had Stella, a dog we got over the summer, for two months. The Fourth of July was in another lifetime.

We’ve spent the last few weeks in a sort of deep summer torpor in which Ryan completely stopped brushing her hair, hair that I’d completely stopped washing because she’d been at the pool all day. I can’t actually remember the last time Kai had a bath (see: pool above). There have been several days where lunch was ice cream. One day a couple of weeks ago, dinner was—no joke—cotton candy. In my defense we were at the Minnesota State Fair, but still. I let them eat sugar and food dye for dinner. Bedtimes have shifted from a reasonable 8:30 to sometimes looking at the clock and realizing it’s 11 pm and omigodyouhavetogotobed. On the day before school started, Ryan got up at the crack of 10:44.

There really was only one thing to do.

We had to go back to school.

:::

I'd had big plans for this summer. I was going to photograph and then throw away all of the kids’ art work so that I can store it as data and not in giant plastic boxes in my guest room. I was going to create a moss wall in the sun room and artfully place potted succulents around my house. I was going to put up pictures and display posters in frames and finally re-hang Kai’s calendar that I took down in February to accommodate his bunk bed. I was going to cull the toys the kids have out grown and take them to Goodwill. I was going to write more.

I did none of those things.

And please enjoy this list of things I also didn’t do, that I discovered I hadn’t done in the last 24 hours before I dropped them off at school: I didn’t buy either of the kids any school shoes, even though they’re supposed to have shoes they keep at school, and even though Kai has grown an entire inch since the beginning of July and his feet are no doubt crammed into his current sneakers. I didn’t even think for one second about making sure Ryan has a non-expired epi-pen to keep with her in the classroom in case the teacher needs it to, you know, save her life. I didn’t think about what happened to Kai’s Thermos since last year, or where their backpacks had gone off to, or packing Ryan a set of back-up clothes to keep at school (and then, after I thought about it and hastily put her rattiest set of leggings in a baggie and scrawled her name across it, I forgot to add socks to it).

:::

As much dread as I felt about scraping the kids out of their beds and into school clothes in what to them would feel like the wee hours, we did okay. Ryan was excited to see her friends again, and there must have been an air of excitement that fueled some unexpected, if unenthusiastic, cooperation from Kai.

 

I asked him if he was excited, and he said “yes” in a tone more suited to a funeral, but his inability to lie about his feelings came in handy and I decided to believe him.

Some of us were excited.

And some of us...

...wore our fifteen pieces of flair.

:::

When I picked them up, I asked them how it had gone. Ryan chatted excitedly about how the room was different from last year and showed me a picture she’d drawn of a mom and baby and a kitty who live in a castle. Kai said he didn’t remember what he’d done or who was there or if he’d done any work, but I heard him tell my mother that it was the best first day of school ever.

And since he is unable to lie about his feelings, I’d consider yesterday to be a resounding success whether his toes were cramped in his shoes or not.

:::

And so the first day of third grade and kindergarten passed into the history books.  I was feeling proud of myself until last night, when I looked at the clock and it was 11:30.

“Oh my God, Kai,” I said. “You have to go to bed.”

The first day is all well and good, but the thing is that you have to keep going back.

 

 

 

 

Tic Toc

A few weeks ago, Kai’s OT, Emily, asked me why Kai was rolling his head from side to side. I watched him for a moment and saw what she was talking about—every minute or so, Kai would swing his head to one side and then the other, like you might if you’re trying to crack your neck. You know. If you were into that.

I had never really seen this before, but I my guess had been that he had water in his ears from being at the pool that day.

But that was not the case, or, if it was, he’s had water in his ears for a month, because that head roll has become constant.

“He’s still doing that?” Emily asked the next time we saw her.

He was, in addition to his other habit of tucking his shirt into his armpits with his thumbs. Emily had him take his shirt off to see what he would do with his hands without his shirt on, like maybe his shirt was too big or was otherwise bothering him in some way.

He does it even without his shirt on.

This behavior started last spring. It was his special ed teacher who pointed it out. Her hypothesis was that he had swampy armpits. I don’t want to deny that this is a possibility, but after spending a week camping with a child whose late-summer bathing schedule can accurately be described as nonexistent, I can attest that his armpits are not swampy.

No, this is something else.

:::

A quick Google search led me to the probable culprit, as quick Google searches can do when they’re not informing you that your daughter has either dermatomyositis or meningitis while you’re on the bus to the Minnesota State Fair and can do nothing but yoga-breathe and wait for your daughter to either spontaneously die or be perfectly fine.

Kai takes a cocktail of pills every night, to sleep, for his allergies, and for his ADHD. Kai's medicine can, according to the Internet, exacerbate tics.

We went to see his neurologist on Tuesday. This is the doctor that prescribes Kai’s sleep and ADHD medications.

I told the neurologist, a man who charges me for phone calls involving adjusting Kai’s medication and who types everything I say into a computer—slowly—and then charges me in 15-minute increments, about our summer, about the development of the head-roll.

The doctor typed quietly for a good 15 minutes after I was done talking (ca-ching).

“I think you guys are doing pretty well,” he said brightly, grabbing a ball off of his desk and tossing it to Kai, who caught it and threw it high and fast over the doctor’s head so that it bounced off the wall and landed on his computer.

“Hey!” the doctor said sharply, clearly annoyed.

“What about the tics?” I asked.

“Do they interfere with his daily life?” the doctor asked. He tossed the ball back to Kai, who threw it against the ceiling.

“I mean, if his thumb is tucked into his armpit, he can’t extend his arm,” I said.

The doctor was unimpressed.

“If the tics get worse, there is a medicine that we can add to the mix,” he said. “It decreases the tics and helps with the ADHD. But I’d prefer not to give him even more pills.”

This was too frustratingly reasonable, and I was secretly glad when Kai beaned the good doctor in the head with the ball.

“Hey!” the doctor said again. I watched him fight to regain his composure.

“I like that he’s so playful,” the doctor said finally, putting the ball in a drawer.

We agreed to keep an eye on things, and, before Kai could cause any more damage or before another 15 minutes could go by, I stood to go.

“Come on, buddy,” I said to Kai, who tucked his shirt into his armpits, rolled his head from one side to the other, and followed me out the door.

Stella

Kai has been talking about getting a new dog for what seems like years.

“Can Elliott have a puppy?” he would ask, a question absurd on so many levels that I didn’t even know where to begin to answer. I mean, aside from the fact that Elliott was a boy, he was also neutered, and how you begin to explain that to a young child with social-communication issues is beyond me.

After Elliott died, his love of dogs began to meander into obsession territory. A new trail opened up by our house and Kai would ask to pet every single dog we’d see on the path. He’d hop off his bike, leaving it smack in the middle of the trail and dart through the onslaught of roller bladers and scooterers and whatever else, ask the owner for permission, hold out his hand for the dog to sniff, chat with him or her about the dog’s name and where the dog liked to be scratched.

“That’s quite the dog lover you have there,” an owner might say to me as I came running up, panting, as Kai offered his sticky, 8-year-old-hand hand for an enormous pit bull to sniff.

Kai asked for a dog several times over the past year-and-change.

Scott was against it, and he had a point. Not having to walk a dog during the last Polar Vortex, or to arrange vacation dog-care, or to vacuum up dog-hair tumbleweeds was admittedly very nice. And nothing will put you off a new dog like losing your old dog to a painful and expensive illness. But as Kai’s requests for a dog took on an increasing urgency, time and distance helped me to warm to the idea. Scott, though, dug in his heels, and, as the last, desperate hedge of a man who knows he’s doomed, offered Kai the hamster of his choice.

:::

Two weeks ago, Kai was up late, restless and uneasy. He lay down on the couch with us, causing Breaking Bad interuptus. As Scott searched for something more suitable to watch, I ran my eyes over my son.

He was laying with his back to me, hunched over, shoulders shaking.

Having once been a teenaged girl, I recognized at once the signs of someone having a good cry.

I curled around him and asked him what was wrong.

Scott stopped channel surfing to listen.

“I just want a dog so much,” he said.

I held him close.

“Why?” Scott asked.

He could have said “I just do,” or “I dunno, I like dogs.” I mean, that’s the answer I would have given at his age. His answer, though, was unexpected.

“Because dogs make me feel calm,” he said.

“How?” Scott asked.

“I like the feel of their fur and the way they smell,” he answered.

“Okay,” I said into the scruff of his neck. “We’ll see about a dog.”

Scott, recognizing defeat, went to the kitchen and came back with a beer.

“Fine, we’ll get a dog,” he said. “Just make sure we get a good one.”

:::

All of Kai’s therapists thought that a dog was a great idea.

I researched dogs for a couple of days. Kai’s social worker had a line on a breeder of Golden Retrievers who sometimes become therapy dogs, but I wasn’t sure I wanted to get a puppy, much less pay big bucks for a pedigreed one. The shelters are, of course, brimming with dogs. I liked a few of them, but a lot of them were not recommended for homes with young children. How could you even begin to choose? And I was under great pressure to choose a “good one.”

I posted on Facebook that since we’d decided to get a dog, I wanted to adopt all of them.

My cousin replied that that very morning, a puppy had followed her husband home two miles through the woods of Tennessee—a brave little mutt that survived a night among the howling coyotes and seemed to really dig belly rubs.

And so, in the end, I didn’t have to decide what kind of dog to get.

The dog had found us.

:::

Scott was not amused.

“Couldn’t you give me some time to get used to the idea before we rush off to get this dog? And why are we driving all the way to Louisville when there are millions of dogs in Chicago?” he asked.

But how do you explain fate? A dog needed a home, a boy needed a dog. And besides, Scott, in the intervening years, seemed to have forgotten how fast a reluctant “yes” resulted in a new family member.

Hi, Daddy!

And so we found ourselves driving to meet my cousin Tamia halfway between her house and ours.

“What should we name the puppy?” I asked.

“Ryan!” Ryan shouted.

Kai was more thoughtful. “Sam,” he said at one point, perhaps channeling the owner of a therapy dog we’d met at Easter Seals. Later he changed his mind. “Something with a K,” he said, prompting Scott and me to unwittingly channel our inner Kardashian. “Kourtney,” Scott suggested.

“Like Kourtney Kardashian?” I asked.

“Oh,” he said. “There’s a Kourtney Kardashian? I guess I just can’t keep up.”

He actually said that, you guys, and without any irony at all.

:::

“We’re here to meet our new puppy,” Kai said to the guy who checked us in to our hotel.

“Oh!” the guy said. “I know exactly who you are. I met your puppy. I almost took her home myself.”

We were, apparently, the talk of the hotel staff.

:::

  

:::

We’d all taken a moment to get acquainted, and then headed to the hotel's patio restaurant for dinner, bringing the puppy with us.

We talked about how she had found her way to my cousin’s house and debated what to name her. I suggested Ellie, a diminutive of Elliott, and there was some energy around that idea until a boy at the next table over came up to us with a suggestion.

“You should name your dog Stella,” he said.

We all looked at each other.

Fate had, once again, intervened.

:::

First night with a new friend.

:::

I took Stella to visit our vet yesterday, a guy who’s been with me through two cats and a dog already. He was the vet who put Elliott down.

He and I hugged each other, and I introduced him to Stella.

He asked me all about her.

“So,” he said, when I was done. “You have no idea where she came from?”

“No,” I said.

My cousin Tamia had taken Stella to the vet in Tennessee, and Dr. Diaz looked through the file.

He sighed heavily.

“Bring me a stool sample as soon as you can,” he said. He reached on a shelf and handed me a vial. In it was a thing that looked like a bean sprout.

“This is a round worm and you can all catch it,” he said.

I looked at the worm and for a brief moment wondered if it would eat my excess calories and considered the benefits.

 “And this spot on her head. This could be mange. Take a picture with your phone so we can monitor it.”

He took out his clippers and began to trim Stella’s nails.

“When she was found, she was covered in ticks,” I said.

Dr. Diaz fixed me with a stern look.

“You’re welcome,” I said to him, grinning.

Dr. Diaz tried valiantly not to smile.

“Here we go again,” he said, disappearing into the belly of the animal hospital.

:::

:::

And so we have a dog. 

 

Please enjoy this picture of Kai NOT roaming the neighborhood in the middle of the night.

Per Scott’s instructions, we got ourselves a good one.