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.
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.
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.
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.
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 $500 million unicorn dollars—money that’s in the budget provided the Illinois government generously decides to give it to Satan’s handpuppet Rahm Emanuel. Considering that Early Intervention therapists aren’t getting paid to treat special needs toddlers and Illinois lottery winners aren’t getting their awards because the governor wants to burn the whole state to the ground, well, feel free to draw your own conclusions.
(Head explodes again.)
Anyhoo. That’s a story for another day.
And speaking of stories, Kai told his speech therapist the story of the day he and Stella met on Monday. It was the longest string of sentences he’s ever spoken, a true story with a beginning, middle and end, punctuated with funny and sweet observations (“We drove for many hours, saw some windmills, then drove for many more hours.”) It was so long that the therapist realized that Kai’s voice lilted up and down during the course of it because he has no practice putting so many words together and breathing at the same time.
We both stared at him, open mouthed, both of us rendered speechless.
So you know. Despite the school districts vast conspiracy to make me go insane, Kai’s sort of kicking ass right now.
I dropped the children off for their first day of school yesterday, after what I think might have been the longest summer ever. It wasn’t long in the sense that I was sick of them, though the thought of being able to run an errand without hustling and cajoling two children out of the car and across streets and into and out of stores and back across streets and back into the car while they whine/cry/put items they haven’t paid for into pockets/demand Chipotle is pretty nice.
No, the summer felt long because it was. Long. As. @#$%&. 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.
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.
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.
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.
Yesterday I asked Kai what he was saying that Shelby heard the other night, what woke her up and prompted her to come outside.
“I was calling your name,” he said.
“Megan?”
“No. I was calling for you, for Mommy.”
I’ve been trying to tease details out of Kai about his little trip outside, to piece together the narrative.
I’ve also been making a point to semi-stalk the approximately 14,685 red brick houses on our block to see if I can find Shelby. I didn’t know why, exactly, I wanted to find her. I just did. I felt like we shared quite a moment the other day on my porch, and the goodbye we said was just so, I don’t know. Lame? Anti-climactic? Inadequate? I’ve hugged strangers for less than returning my son to me. Way less.
So anyway, I saw her today, coming out of a red brick building. She looked different this time—fresh in a cobalt dress, clearly on her way to work.
“Shelby?” I asked.
“Yes?”
“I’m Megan, from the other day,” I said.
“Yes,” she said.
I discovered that I still had no idea what to say.
“Uh, thanks again, for, uh, you know,” I stammered.
We stood there awkwardly for a moment.
“Which way are you walking?” she asked, and I gestured to my house. We began to walk that direction. She lives two doors down. I think I mentioned the red bricks.
“So, did you tell, like all your coworkers that you found some kid on the street?” I asked her, because for some reason, I couldn’t help myself.
“Yes,” she said, laughing. “But the funny things is—” she hesitated. “Do you watch Dr. Who?”
“No,” I replied.
“It’s like the X-Files only, well, less—” she searched for words. “Out there, I guess. Anyway, the before we went to bed that night we were watching Dr. Who, and the last episode we watched was about this kid in a gas mask, and he can’t take the mask off and all he does is call for his mommy.”
We stopped walking in front of my house, and Shelby continued.
“So when I heard a child calling, ‘Moommmyyyyyy’ I pretty much freaked out. My husband heard it too and we were like oh my god*.”
I laughed. Leave it to Kai to be the creepy kid from someone’s nightmare. Sometimes he walks silently into our room in the middle of the night and just stands there until we sense his presence and wake up to find him staring at us.
“What if you’d looked outside and he’d been wearing a gas mask?” I asked her.
“Oh, I never would have gone outside.”
Which means, you guys, that we will never buy him a gas mask, because I’m pretty sure the only reason he wasn’t wearing one is because he doesn’t have one.
And believe me, the only thing creepier than Kai staring at you in the middle of the night, would be Kai in a gas mask coming for you in the middle of the night.
*The original post had Shelby’s husband not hearing Kai calling out. Apparently he DID, though after watching this video, he may have pretended not to so he didn’t have to go out there…
Among Kai’s most baffling challenges is his complete inability to find things.
I don’t mean like the person who can never find her keys or sunglasses (guilty), but his inability to even organize a search.
If you lose your keys, you probably look in a series of likely spots, as I do. I start at the kitchen island, and if I don’t see them, I look for items I’m usually carrying along with my keys, such as my purse or a bottle of water. I also retrace my steps and think of the last place I remember having my keys in my hand.
But I’m not Kai.
I’ve asked Kai to find things, and he’ll start his search the unlikeliest place imaginable, like under a planter in the backyard for his library book, or in the basement utility closet looking for his pajamas—not because he was reading outside (unlikely for a variety of reasons) or was in the basement and suddenly decided to get naked (less unlikely but still doubtful just because it’s cold down there), but because he can’t think logically through where this lost item might be.
Me: Where did you last see your coat/backpack/helmet/iPad?
Kai: I don’t know. Maybe in the freezer?
Me: Kai, that’s impossible.
Kai: I don’t know wh—Hey! Can I have an ice cream sandwich?
And so it came to pass this morning that we couldn’t find Kai’s shoes.
His shoes are only ever in two places: by the back door and in his room, and when we couldn’t find them in either place, Scott and I were at a loss.
“Kai, where are your red shoes?” I asked him, for the ninth time, knowing it was futile but hoping for a miracle.
“They’re not in the freezer,” he said, shutting the freezer door.
We were, of course, running late.
“Kai, how about your green shoes?” I asked, thinking that at this point, we just needed to be shod and in the car, and if we had to wear an old pair, then so be it.
“I need my red ones,” he said.
“But we don’t know where they are,” I replied, logically. “We need to go. Your choices are your green shoes or your snow boots.”
“But snow boots will look silly,” he pointed out.
No sillier than showing up without any shoes, which is where you’re headed, I thought.
This is a threat that I’ve carried out before, tossing his four-year-old self in the car buck naked after he refused to get dressed after swimming at the pool:
Exhibit A
“Snow boots or green shoes,” I said.
“I need the red ones.”
“THEN WHERE ARE THEY?” I asked, louder and angrier, knowing that Kai had no answer but needing to release some frustration.
We were officially late by now. And beyond that, where were this child’s shoes? We’d been all over the house. I took a page out of Kai’s search handbook and texted my friend Sarah to see if somehow we’d left them there the evening before. I couldn’t imagine that we would have forgotten to put on Kai’s shoes, but, well, there had been wine involved and the shoes weren’t here.
Scott caught him by the arm and tried to put the green shoes on Kai’s feet, but Kai struggled and resisted. “It’s time to go to school,” Scott said, struggling to catch hold of one of Kai’s feet as Kai kicked and squirmed.
I pulled out the big guns.
“Kai, if you don’t put on your green shoes, I’m going to take away the iPad and computer for the rest of the week,” I said. This is a threat that works every single time.
I presented Kai with his green shoes. “Come on, pal,” I said.
And then he surprised me. His eyes welled with tears and he started to cry. “If I wear the green shoes, everything will be wrong,” he wailed.
And then he pressed his face into my belly and heaved a choking sob.
:::
For me, one of the fine lines I struggle to with is whether Kai is doing a particular thing because he is being a turd or because of his autism. I mean, if Kai’s just being a turd, and derailing the morning because he was tired or wants more iPad time, that’s one thing. If he needs those shoes or “everything will be wrong all day,” that’s autism. Punishing Kai for being a turd is perfectly reasonable. Punishing him because autism is making him do something fairly benign he can’t help, no matter how annoying, is like punishing a blind kid for not being able to see.
What would happen if he didn’t have his red shoes? I have no idea. Certainly the world would continue to spin, but Kai would somehow refuse to spin with it.
Scott, correctly recognizing that Kai was physically too big to force into more convenient sartorial choices, decided to make one more pass through the house for Kai’s shoes, and found them, finally, mercifully, behind the door to Kai’s room.
Kai put them on, and we got in the car, 20 minutes after the morning bell had rung and everyone who hadn’t lost their shoes had started their day.
I let Kai take the iPad in the car.
“Kai, I was being unfair taking away your iPad.”
I didn’t know how to tell him why he’d gotten his iPad privileges back in a way that he could understand. I knew it was too complicated, that I’d screwed up whatever lesson he was supposed to learn, or autism did, or maybe the lesson learned was supposed to be mine.
“What would have happened if you had the wrong shoes?” I asked, but he was lost in Minecraft already.
And so, with the red shoes strapped to Kai’s feet, I put the car in gear and we left, finally, mercifully, for school.
On the Friday before Easter, Kai and Ryan and I went for a playdate at the house of a classmate of Ryan's. The kids were going to dye Easter eggs. There was another family there, and I was apprehensive about how this would all be for Kai until I discovered that the children were all younger than he is, and therefore sitting on the couch playing Minecraft looked less anti-social and more coolly aloof.
When we called all the kids over to the table to begin dying the eggs, Kai surprised me.
“You know,” he said, addressing himself to the whole table. “I can talk.”
I froze.
“I just don't talk very much.”
I wanted to hug him. None of the other kids paid him the slightest attention, wrapped up as they were dying eggs in a colorful tsunami of vinegar and overzealousness.
I've heard him say something similar before, that he can talk, he's just “slow,” which is absolutely the truth and absolutely heartbreaking—not just that he's delayed, but because he knows he's delayed, that his classmates leave him in the conversational dust, unable to get a word in edgewise because autism won't let him, and by the time he's formed the words the moment is gone, like all those times you thought of the perfect comeback to an insult you received yesterday.
:::
I saw his Special Ed teacher not long afterward, when I picked him up early for occupational therapy, as I do every Tuesday, and told her that Kai would be out today and tomorrow for more evaluations.
“Hopefully, over the summer he can do something fun,” she said, “instead of all of this stuff.”
I couldn't help feel a stab of guilt. I think about this all the time, wondering if what we’re doing is too much. And also wondering if it’s even enough.
“We have something every day,” Kai observed, and it's true. We have speech on Monday, OT and social skills group on Tuesday, he participates in a mentoring group on Wednesdays that he likes but is also for special needs kids and so it's still a thing, we have vision therapy on Fridays. Kai's only day off is Thursday, though last Thursday we had a make-up speech session and three hours of psychological tests.
I've been toying with taking a break from therapy, but which one? The OT for his sensory processing? Speech so he says “teeth” instead of “teef?” Vision so he can read what his teacher writes on the blackboard? And who would this break really be for, anyway? Him?
Or me?
And in any case, we don't do all of that because we want to. It’s not like I'm tiger-momming him into hours of violin lessons or grooming him for a spot with the Joffrey Ballet. I'd just like him to walk from one end of his classroom to the other without walking right into another second grader as though he didn't see her at all. Because he does that all the time. It’s hard to ask a girl to the prom if you don't know she's standing right there, you know? And you have to talk to her about something besides the number of rings around Saturn, because even if she's into that sort of thing, she'll once in a while want to talk about something else. And you can't honk her nose or violate her personal space or interrupt her or play Plants vs Zombies at dinner. Of course, that's all 10 years away and who knows if he'll even want to go to prom, but I'd like to give him a fighting chance at a normal, functional, independent life.
I tried to keep the defensiveness out of my voice, all the worry, all the temptation to say something snarky. She didn’t know she’d cut where it hurt. She didn’t even know she’d cut me at all.
“He’s going to summer camp,” I said, brightly.
And so I guess we keep going, at least while he still willingly gets in the car.