Thursday, March 18, 2021

Stow's Phone Call

Small changes can result in major dysregulation, so I've come to refer to Daylight Savings Time as Devil's Stolen Time. We knew that this week would stink, but we have to keep parenting anyway. Parenting during DST should come with a warning label: Enter at Your Own Risk.

On Tuesday, like most days, Stow didn’t want to stop watching YouTube to do his schoolwork. I’m pretty sure this happens in every household. What is less likely to happen in other households, though, is that when we insisted he stop (after setting a timer and giving him plenty of warning), his fight instinct kicked in. We haven't seen a lot of meltdowns lately, but Devil's Time has a way of screwing things up, killing our vibe, messing with our rhythm. Since I’ve written about Stow's meltdowns in the past, I won’t go into details now other than to say that even after we took his Chromebook, he was still highly dysregulated. And, that's when he decided to “call the police.”

I tried to grab the nearest handset and dial another number before he could punch in his, but I didn't make it in time. And, even though I explained to the dispatcher what happened and that all was fine, 15-20 minutes later an officer showed up. By then, the meltdown had fizzled out--after he spent some time swinging a tennis racket at snowballs (and my car) while wearing flip flops in the snow--and Stow was quietly playing with his LEGO. When the doorbell rang, he ran to get me, color drained from his face, "The police are here!"

Later Stow asked me what would have happened if I just didn't answer the door, and, to be honest, that was my first instinct. But, I believe in facing my consequences, and this time I felt like I deserved this visit because I hadn't managed to outthink my kid and his meltdown. The officer introduced himself, asked if we were ok, asked if he could come in. He wanted my full name and Stow's full name as well as our birthdays. He talked to Stow for a bit and seemed to study me and my reactions. Stow cowered behind me and was barely audible when I made him answer the officer's questions; after all, he called 911, not me. Finally, satisfied, the officer left. 

I did not want to invite him in or give him our information, not because I think law enforcement officers are bad nor because I somehow thought this guy wasn't just doing his job. I know that if someone calls 911, the protocol is to follow through and make sure no one is being held against their will. People I care for deeply are or were law enforcement officers. So, of course, I believe that police officers should be respected and that their jobs are important. Of course, I would like to believe that all law enforcement officers are good people who do their jobs well.

But, I have also read many, MANY stories about autistic or mentally ill people being arrested or injured when police have intervened, and I have in the forefront of my mind the story of one of our Asian American students who lost her brother this past Christmas when they requested police assistance in handling his mental health crisis and the officer put his knee to her brother’s neck. While our local police officer was visiting us, 6 Asian women were being murdered in Atlanta. And, as I worked to put into writing my feelings about this, a sheriff deputy described the white shooter of those Asian women as having "a bad day." So many stories about the unevenness of how people of color or neurodiverse people are treated compared to their white, neurotypical peers illustrate that we are so very far from where we should be. 

I wish that the incident with Stow could have been just a lesson about why he shouldn't use 911 in a non-emergency, but instead, it was a lesson for me about my own hidden trauma. What would have happened if Stow called the police when I wasn't home and Ren couldn't clearly explain the situation? What would have happened if the police officer showed up in the middle of an aggressive meltdown? Stow's phone call could have gone very, very differently, and I doubt I will ever forget the fear it caused me. I long for a time when we have centered neurodiversity and non-whiteness enough that if our freaked-out kid calls 911, our worry doesn’t have to be about his safety or whether he will be taken away but instead can be about how to best help him navigate this world.


After the visitor left, Stow insisted we play Jenga, a game we haven't played in years. You guys know I'm a sucker for a metaphor.

Postscript 1: Every day since the phone call, Stow asks me another question about it. He doesn't want me to bring it up, and he doesn't want me to say anything more than the exact number of words necessary to answer his question. He has grasped that he should never call 911 in a non-emergency again, and he is also very sorry about his choice. Autism sucks because good choices are hard to come by in the middle of a meltdown caused by dysregulation.

Postscript 2: We have asked the school to block YouTube on his computer. I know that makes us the worst parents in the universe, but I'm willing to accept that distinction.

Postscript 3: Up until very recently, my most-read blog post (by far) was the one titled: “My Secret Life as a Japanese Housewife,” and analytics made it pretty clear why I was getting those hits. (As an example: I had to turn off ads because they were clearly pitched to people who weren’t my intended audience—eww.) Recently, my post about Hand Foot and Mouth Disease has outpaced the Japanese Housewife one. It’s harder for me to explain why that one is so popular. (You can see the list of my most-read posts in the column to the right on the desktop version of the blog). 

Wednesday, March 10, 2021

This is What Happens When You Try to Do Something Nice

I took the car for an oil change today. Since Ren has a colonoscopy tomorrow and can’t consume anything other than clear liquids and diuretics, I decided to stop for something to eat on the way home. Very rarely do I take myself out for a meal, even less so during a pandemic. Since I had a Starbucks gift card, I decided to get a sandwich there, even though it wasn’t directly on my way home and Starbucks isn’t exactly known for its sandwiches.

When you are an overthinker with social (and other) anxiety, even the simple decisions can lead to a lot of second-guessing. As I waited to pick up my food, I wondered if I should have gone to this Starbucks or the other one? I worried that the person coming into the line from the other lane would think I was trying to cut them off (who designed this drive thru anyway?). I debated whether I should have gotten a coffee (even though I didn’t want one), so it would be less weird for me to get a sandwich. This is what my mind does all day, every day; it’s why I am often distracted.

It’s also why I had absolutely no idea what to do when the guy at the window told me it was my lucky day because my sandwich was free. He didn’t explain why it was free—simply handed it to me and told me to have a good day. What!?!

I don’t know what people who are not me would do in this situation. People who are me, though, panic. I didn’t know what to say, so I awkwardly said thank you and then drove off. I’d heard about people doing these kinds of random acts of kindness at Starbucks (why is it always Starbucks?), but I’d never been the recipient of one. In fact, since the guy at the window didn’t tell me why my sandwich was free, I wasn’t sure WHAT had happened.

I pulled into a parking space a few stores down and texted my friend. Maybe she’d know what to do.

This is how it went:

(Please ignore grammar issues; I was distressed).

I finished my mediocre sandwich during the course of this text exchange, and while my friend made me feel a little better about failing to be a decent human being, I still felt pretty bad about not responding graciously and effusively and then offering to pay it forward by buying the next person’s lunch. Obviously, this must be what the situation required of me.

So, I decided to call Ren. Ren is a kind and helpful man, but he is also more frugal and and more rational than me. Surely he could make me feel better. When I told him what happened, though, he couldn’t get over the fact a random stranger paid for my lunch. “Why would someone do that?” he asked, incredulously, thinking it must be some strange American custom he hadn’t heard about before. I explained that it’s apparently something people do from time to time, and that I was pretty sure that I should have done the same for the car behind me, but that I panicked, and I didn’t know if I had enough money on my gift card to pay for someone else’s meal. “That’s ok, isn’t it?” I asked. “It’s ok that I didn’t pay for someone else’s meal, right?”

There were many possible "right" responses Ren could have given here, but instead, he said, “I mean, I guess...”

Gah! He guesses?!?!? Now I will NEVER know if I am the worst human on the planet or not. Though, I’m pretty sure I am because instead of being grateful for someone else’s act of kindness and paying it forward, I did nothing and then worried that the Starbucks window guy must think I’m a huge jerk. Worse, I felt kind of mad that someone else made themselves feel good at my expense! How could I possibly enjoy my sandwich now that it was laced with so much guilt?

See? This is what happens when you try to do something nice for an overthinker with social anxiety. You end up ruining her day and pretty much ensuring she will never go to Starbucks again.


PS: I showed a draft of this post to my friend, and she said, “You did the person behind you a favor by not continuing the cycle. Basically you’re an American hero.” We should all have friends like this who know just what to say when we’re freaking out about a random act of kindness.

PPS: Thanks to the person who bought my lunch today. I really do appreciate it even though I had no idea how to behave in response.

PPPS: For those of you who know me in real life, I hope you know how grateful I am for all that you do, even if I AM all awkward and inappropriate about it.

Tuesday, March 9, 2021

They Work So Hard

One thing I think is really difficult for neurotypical people to appreciate is just how hard people with autism work to get through each day.** It takes a lot of energy, concentration, and processing to work through the various input that comes at us. Whereas neurotypical people filter through those things without even noticing, autistic people often find themselves having to consciously and intentionally sort through a tangled mass of sensory, social, and academic information. They know that the more they can organize and control that input, the easier it is to make it through the day, but managing it all is tough.

I came to really appreciate this when Sky started school. At first, he could "behave" in the morning, but he would get in trouble all afternoon. Then, he could do what was expected of him until about 1 pm, but he would fall apart between then and the time the bell rang at 2:30. At one point, he could make it until about five minutes before the bell, but he could never quite get to the end of the day without having some kind of problem with his teacher or the other kids. "I don't understand it," the teacher would say. "He always does so well for most of the day!" It was hard for her to see that it really was just a matter of stamina for him. He knew what he had to do to compensate for all of the challenges his autism presented,*** but he had a limited number of resources.

When you watch your kid go through years of occupational and speech therapy, and when you watch them literally practice how to behave in the classroom and how to interact with peers on the playground, you start to understand why school makes them so tired. When I send Sky and Stow off in the morning, I do so knowing the immense hurdles they will face during their day, and when I greet them after school, I do so with a combined sense of relief that they made it through unscathed and awe at their bravery. It's weird. I know. 

Many nights during Sky's first several years in school, he would fall asleep on the couch or while eating dinner because he was so tired from this work. While other kids were joining sports teams and going to practices in the evening, Sky was struggling to keep it together until bedtime. Often, he didn't make it, and once he fell asleep, NOTHING we did would wake him up. He was exhausted, and he needed to used every second of the twelve hours of sleep he got between dinner one night and his morning alarm the next day to store up the energy reserves necessary for him to get through another day.

A few weeks ago, I wrote about how much Sky has struggled during the pandemic. All of the coping strategies he has worked to develop over the last ten years have been laid bare by COVID-19 life. Even as those strategies have been crumbling, however, Sky has kept working. He has kept trying. He hasn't given up (even though he has every right to want to). Suddenly, though, it feels like we have traveled backwards in time. Because, suddenly Sky can't make it through dinner again. Every evening between 6 and 6:30, he hits a wall and finds himself completely out of energy--totally spent. We've tried different strategies to help him stay awake so he can get things done, but he invariably ends up asleep on the couch or the floor somewhere.

It seems like every time I walk into a room, I encounter a Sky-shaped crime scene. Now that he's 5'10," though, when he falls asleep just anywhere, he tends to be in the way. And, these days, we can't easily pick him up and carry him to his room.

This pandemic has been so hard for so many of us, but I want to give a special shout-out to all the kids and adults like Sky who have hung in there and done the best they can even when their worlds became completely unmoored. I see how hard you are working! You are amazing, and I am so very proud of you!

** Disclaimer: While I am talking about neurotypical people and people with autism, I want to note that I am doing it based on my experience as a neurotypical mom to two autistic boys. I understand that our story doesn't represent every story, but I also think our experiences can be instructive. In fact, the boys ask me to share these stories because they want people to understand what it's like to live with autism.

***Disclaimer #2: I am not suggesting that autism is somehow bad or that people with autism are bad. What I am suggesting is that in a neurotypical-centric world, the kinds of behaviors that were natural to him were often met with displeasure fro his teachers and peers.

Wednesday, March 3, 2021

What are these Things I am Feeling?

I feel obligated to admit that I am not a dog person. 

As a kid, the unpredictability of dogs made super-anxious me, well, anxious. And, all of my fears about dogs were confirmed one ill-fated summer evening when I was 8 when the neighborhood Great Dane, Joey, decided to jump on me as I filed past him with a group of kids headed to the back yard for a game of kickball. 

I’ll never know if Joey was trying to lick me or to bite me (though it sure seemed like the latter), but I do know his paws were as big as my face. I ended up with a puncture wound that sent me to the ER and that left me with a scar that I still have to this day. 

So, yeah, cats have always been more of my jam. 

My recent change of heart surprises me a little. I mean, sure, I tend to be a sucker for things that help the kids. And, I know that kids with autism respond positively to animals. Plus, I’ve done a lot of reading about autism service dogs, so logically, I understand that a dog can probably help Stow. And, logically I also understand that all dogs are not Joey. It makes sense that I’m willing to get a dog to help my kid. I’d do absolutely anything for them, after all. 

What surprises me is how much I already love Shiro and how much I am to looking forward to having her join our family. I know we will have to do a lot of adjusting. Sky is sure this is all a terrible idea. (Guess who doesn’t like change?) We’ve never had a dog before, much less a dog that is almost as big as Stow, so I get Sky’s anxiety. He’s having trouble wrapping his head around how Shiro will be a family pet if her job is to help Stow. Plus, dogs are so different than cats. Cats don’t need to be let outside to take care of their business. They don’t need walks or baths, and our cats could care less if we acknowledge their existence most of the time. Shiro is going to be a whole other story, and since none of us are great with change, Sky isn't wrong to be nervous. 

Even so, I’m excited about this dog in a way that I haven’t been excited about anything in a very, very, VERY long time. Every picture or training update we get makes August feel impossibly far away. I’ve already started ordering things we need for her and would set her crate up in Stow’s room right now if I thought it wouldn’t totally confuse him and cause him months of frustration (until a couple of days ago, he thought Shiro would be here in June just after his birthday--concepts of time are hard for him). Whereas I can live with my feelings of excitement and anticipation, I also have to be careful not to trigger his. 

Since I can't start setting things up or talk about her with my family very much, I will tell you guys instead. I AM SO EXCITED AND CANNOT WAIT UNTIL SHIRO COMES!!! And, these feelings confuse me. How in the world do I find myself almost 50 and falling in love with a dog for the first time?!?

Here are some pictures of her. I’m dying with how sweet she looks. 

And, look at her being such a good girl during her training:

Seriously, how could you NOT fall in love with this dog?

I’m sure Shiro will teach us all a lot. She has already taught me that it’s never too late to change and it’s never too late to find new and unexpected joy. Even if nothing else comes of this exciting opportunity for Stow and our family (though I’m sure it will), Shiro has taught me more than enough!

Here's my original post about Shiro. Check out how much she's grown!!