Weird.

Trigger Warning: Navel gazing, overthinking.

So, what's it like to, you know, have cancer? The short answer? Very, very weird. (I guess the shortest answer would be, "weird," but I don't think that does it justice).

On that drive to Indiana, when I went to spend a couple of days alone, I felt a joy and freedom I hadn't felt in a very long time (if ever). I had weathered the illness and loss of both parents and unexpected and difficult surgeries for Ren and Stow. And I had, finally, after many, many years, put down a lot of the things from the past that were weighing me down. It turns out this was all in preparation for life's next challenge, which literally showed up a few hours after I got to Indiana.

Anniversary flowers

Funny.

*****

Friday was my last day of work. I was tantalizingly close to making it through the whole semester. So close. Going from cruising speed to zero is a mind-boggling experience. So is having people suddenly worrying about and feeling sorry for you. But, so is suddenly realizing why you have been feeling all of the aches, pains, and other symptoms. Once you know why you've felt that way, it is impossible to ignore, and suddenly you feel like doggy doo and stop pushing. So weird.

Not only do I have thymoma, which Pink/Falcon has dubbed "Thy Mother," it is also constricting my lungs and may or may not be causing cardio and vascular issues that are also real. I'd like to go back to my strategy of not going to the doctor. When you don't know what's wrong, it's almost like nothing is wrong.  

Anniversary tulips

In a few days, I will have surgery and learn about things like margins and stages, but today, I am blissfully unaware of what the future holds. I think I will enjoy my freedom by having a coffee at my usual Tuesday spot. Then I think I'll get my grades in and enjoy the amazing weather. I've got a couple of more Lego botanicals to build and a book to finish. And, I suppose I have a surgery to prepare for. All things in time. 

See you on the other side.*

Christmas bonsai trees. (I'm telling you, I have a backlog of Lego Botanicals given to my by loved ones. It turns out I really love flowers and I really love Lego. Who knew?

*Of the surgery, obviously. I don't plan on going anywhere anytime soon.

Quiet Moments of Reflection

Before my recent posts, I hadn't published one in nearly two years, so let's see if I can catch everyone up.

Hmmmmm. Let's see...my mom got sick in late-ish 2024 and died in early 2025. I think in terms of semesters, and spending time with and then losing her is how I spent fall '24 and spring '25. When the 2025-26 school year started, I thought maybe the hard stuff had ended (after all, I'd lost Mom and Dad in pretty quick succession). Instead, Stow tore his ACL in August and had surgery in September, and right before Thanksgiving, Ren had his eighth (8TH!!!!!!) spine surgery to address the fact that his right arm had stopped working consistently. Fall 2025 was my first two-surgery semester. Surely things would be better in the new year!

After feeling really stuck in processing my grief, going through my first Thanksgiving, Christmas, and New Year's without her, while also stuck at home caring for Ren, seemed like a real low point. On the anniversary of her death in late January, I decided to celebrate by going to Culver's for a scoop of the flavor of the day (her favorite, no matter what the flavor 🤣), I had hopes of playing board games with Ren and the kids. Mom was a game shark, and she loved playing board games. I thought we could all reflect on our good memories while doing these two simple things that she loved so much. 

If you've read this blog for a while, you KNOW my plan for a simple evening thinking about Mom was a little too much to ask. Here's what actually happened:

1. Two out of three kids refused to go to Culver's (in their defense, they were varying degrees of sick), and the third went but refused to engage in conversation because they had gotten overwhelmed by something completely unrelated. 
2. Ren and I talked about memories of Mom, but, on a good day, he can only remember as far back as what he ate at breakfast, so that brief conversation ended with both of us eating in silence (lol),
3. On the way home, I realized I had forgotten to get a hamburger for one of the sick kids, so I decided to go through the McDonald's drive-thru, which elicited opinions from my two passengers. Ignoring those opinions, I ordered the food, paid for it, and then promptly drove away without stopping at the pickup window, which meant I had to turn around and pick up the now-cold food. How nobody in the car noticed I drove away without the food, I don't know, but when I got back to the window, the McDonald's employee helpfully pointed out that I had forgotten the food. Thanks. Thanks a lot. 
4. When I got back from the second stop at McDonald's and got out of the car, I noticed a gas smell. I asked Ren and a kid about it, and both told me THEY HAD BEEN SMELLING IT FOR AWHILE 🤯🤯🤯. I suggested that smelling gas is not usually a good sign and that we should call the gas company.
5. Hearing my description, the guy on the phone told us to evacuate the house immediately without turning anything on or off. So much for game night.

The children were already dysregulated, so I think you can guess how it went from there. Two children followed Ren's instructions literally and walked out of the house, through the back door of the garage, through the yard, and to the sedan parked in the driveway. They turned that car on and sat so close to the house, they might as well have been in the garage. When I told them to move the car, they both said they couldn't drive because their feet were too cold because THEY WALKED THROUGH THE SNOW WITHOUT THEIR SHOES ON BECAUSE REN TOLD THEM TO HURRY. Mind you, they had to step OVER their shoes to leave the house. The third kid refused to leave because they wanted to eat their McDonald's, and they thought they'd keep the cats company. The dog, meanwhile, ran away and tried to get into the neighbor's garage to see if they could play with their dogs. 

I think at the point where I was going back and forth between the kid in the house, the kids in the car, and Ren trying to explain the situation to the neighbors, I realized that my dreams of peaceful reflection were and had always been a fool's errand. Eventually, I left one kid to die (or, hopefully not) in the house, convinced the other two to move the car to the curb, and secured the dog with the neighbors because I could not imagine squeezing her into the car with the four of us. Then I got into the car with Ren and the other two kids to warm up from the 20-degree weather. 

If you think that was the end of it, you clearly haven't been around for long, because once I was in the car, the three out-of-sync people in the car with me lost it. One repeatedly questioned whether we really needed to leave the house. Another worried relentlessly about the cats but also the thing that was stressing them out when we went to Culver's. The third person ramped up higher and higher from the anxious energy of the other two until they were loudly imitating them, triggering further reaction. It got so loud in the car, that I told that kid to start driving. Somewhere in the back of my head, I thought the motion of the car would soothe everyone, like it does when you're trying to get a crying baby to sleep. Also, I didn't want neighbors to start coming out of their houses to see what all the noise was about.

Driving around the block didn't help, but at least the noise was moving at a decent clip so no one had time to come out and see what was going on. 

Fortunately, when we got back to the house, the guy from the gas company was pulling up. I jumped out as fast as I could and took him to the house, where he discovered a leak in the pool gas line. We didn't die, but I am not sure I will ever be the same. 🤣🤣🤣🤣🤣

Indiana Sunset the Night I Learned about Brian

Anyway, that's how January ended, and once I got past the first anniversary of Mom's death, I felt a little lighter even though I didn't get a chance to have a meaningful moment of reflection. Also, I knew I'd be going back to Indiana to visit her grave and see old friends in just over a month, so it felt like I was finally starting to process some grief. I was looking forward to the moments of quiet reflection I hoped to have when I was away on my trip.

We all know how THAT turned out!

What IS That Thing?!

 If you haven't seen the previous post, read this first.

I'm sure I did what anyone else would if they were far from home, having just learned they have a chest lemon. First, I slept for a couple of hours, sent messages to a couple of doctors, and called Ren. He reminded me it was the anniversary of our first date and told me nothing terrible would happen on such a beautiful and important day. The original intent of my nights alone in the hotel was to spend some time relaxing and reflecting on the past year. So I tried not to let the news stop me. I went for brunch and explored an amazing bookstore, where I mostly sat and tried to catch my breath.

Since I was exhausted, I returned to my hotel room, where I opened all the windows, turned on the women's college basketball game, and took a really long nap. It was such a gorgeous day, warm and breezy--perfect weather for sleeping. But I imagine you don't want to hear about all of that. Like I did, you want to know what that THING is.

Let me tell you, it's not so easy to get the answer to that kind of question. While you're waiting, you might even have time to name the thing you're trying to identify. Having just lost my mom to cancer, I am acutely aware that persistence is key when you find things in your body that aren't supposed to be there. Within about a day, I had several appointments scheduled. Then those appointments led to more appointments. I also continued accompanying Ren to his appointments (more on that later, I guess). By the end of week 3 of knowing about Brian, I had had an MRI and was headed to a thoracic surgeon.

I already knew what the doctor was going to say before she told me. How could it not be the super rare cancer I'd been reading about? I don't know why or how, but I knew this months before that appointment. I've been coughing for years and just not feeling like myself; it had to be something, and pretty much everything else had been ruled out. The good news is that this kind of cancer is super slow-growing and can usually be managed with surgery if caught early. 

The weird thing about news like this is that it's really hard to figure out who to share it with. I'd rather not talk about it because I'd rather not talk about myself. Also, I don't like pity. But, also, the news is a drag, so I kinda want people to cheer me up. It'll be fine, but it'll stink for a little bit. I'm going to drop balls and may have to miss some stuff for the kids. I guess I'm going to have to really figure out how to chill. Sigh.

Anyway, I leave you with two amazing pictures a friend created when he heard the news. I really do have the best friends!

The Life (and Hopefully Death) of Brian

Meet Brian the Chest Lemon. Apparently, Brian has been making himself comfortable in my mediastinum (don’t worry—I had to look that up, too) for a while now. I had a feeling he was there, but no one could figure out what was causing the various symptoms I was having--like a persistent cough and a change in my voice. And, since he’s literally 1 in a million, no one thought to look for him. Hide-and-seek is no fun when you don't know you are playing it! 

Brian was outed some time in the early hours of March 9th at an emergency department in Bloomington, IN. I was in Indiana for a long weekend--to see family and friends and, ironically, to spend some time in self-reflection after losing my mom a year ago. This is what happens when I try to take time for myself, you guys; I find a chest lemon. Randomly discovering a tumor at a hospital 5+ hours from my Ren and the kids was NOT on my itinerary!

So, as trips go, my meditation and rejuvenation-focused weekend was a bust, BUT I got to spend quality time with friends and breathe the air of places I love. Also, if I hadn't taken the trip, and if my friend hadn't insisted I go to the ED, Brian would still be enjoying his anonymity. Plus, my friend and I had a lot of time to laugh and talk in the waiting room for six hours. They came to get me from time to time to take me to do tests before dumping me back into the waiting room to, you know, wait. I guess once they determine you are not having a heart attack, they don’t mind keeping you up all night. My philosophy has always been that most ailments heal on their own while people wait in the ED.

Sometime around 2:30 in the morning, they called us into the triage room to tell me my symptoms were likely due to some new meds I was taking, and, oh also, did you know you have this giant thing growing in a part of your chest that you can't even locate because no one who is not a doctor or taking anatomy class has heard of it? My friend seemed much more surprised than I was. I imagine her response made more sense. I was so calm, in fact, that she asked if I had somehow already known about Brian.

I hadn't.

To be continued....

M8 (Losing a Kid in Tokyo)

Tokyo is the largest city on Earth. With a population of over 37 million people, it has four times as many people as New York City. (Fun fact: no US city is on the list of top 10 most populated cities. None even comes close.) The metropolitan area covers 8407 square miles. Eight thousand four hundred and seven.

You can see and do practically everything in Tokyo. So far we’ve been to an owl cafe and a fox cafe and more train museums and shops than you can count. The kids spent yesterday at an indoor amusement park complete with roller coasters and a poop museum next door, while I filled my afternoon exploring the many book stores in Jimbocho and having tea at a cafe decorated with French novels that are over 100 years old.

Given the ease with which one can navigate the vast public transportation system, you can get almost anywhere in the massive metropolitan area within a couple of hours. Of course this can be extremely exhilarating, or not. 

A few days ago, there was some interpersonal conflict, and one of the kids ran away. I’m being vague about what happened for their privacy, but they’ve agreed to let me share this.

The conflict (that occurred because the kid didn’t like how I handled a situation) happened near the central exit of Tokyo Station. Tokyo Station is one of the busiest train stations in the world with 14 train lines. Three thousand trains and 1.1 million people go through it daily. It also has a fairly elaborate underground shopping and restaurant district.

It’s not a great place to lose someone.

The kid in question walked away from me and kept walking. I tried catching up to them but the faster I walked, the faster they walked, too. If you’ve ever been to Japan, you know that people tend to be pretty quiet in public, so shouting for the kid to stop would have drawn attention that would have certainly driven them to run. I calmly called their name and asked them to stop, but they didn’t. And then they disappeared into one of the underground passageways. 

Fortunately, as they were getting away from me, I had the presence of mind to yell that I couldn’t catch them but would be waiting for them at the spot where I was standing. At the top of the stairs of exit M8. 

Ren and the other two kids were still in the station buying tickets to a special exhibit, unaware of what had happened. I stood at M8 and tried calling him. When I finally reached him, he was confused. Weren’t we in the station waiting for him to get the tickets? When he finally processed what I was saying, the three of them came to join me at M8. We had the two kids sit there while Ren and I went down to look. We split up, but it only took about ten seconds to realize there was no way we could find someone down there. They could be in any shop or on any number of trains. They could also have resurfaced at another exit and be walking away from us in the city. 

It was hard not to panic. Or cry. 

We decided to have Ren stand looking for them in the station while I waited at M8. The two other kids got on the train back to our lodging. As I waited, I called Ren and asked when we should call the police. In my head I was composing a list of what the kid was wearing and their physical characteristics (calculating their weight and height into kilograms and centimeters), and I was thinking about which recent picture to show the police. Ren thought we should wait to call the police until the other kids confirmed the third kid wasn’t at home. 

I sat on the ledge at M8. My feet dangled like a little kid’s. An older Japanese woman gave me an odd smile. I tried not to think about the possibilities. The missing child doesn’t know the city well and was upset enough that they couldn’t make safe or rational decisions. Maybe they didn’t hear me when I told them where I’d be. Maybe they were upset enough that they would forget where they were. 

And there was no possible way for me to find them. I felt completely helpless. And terrified. Those minutes when I was sitting alone at M8 trying to will that kid back to me felt like the longest minutes of my life. 

And then, after we’d been looking for about 30 minutes, they reappeared at M8. They were above ground and came from a completely different direction than I expected. I hugged the kid and thanked them for coming back. Then we talked about ways to get away and regroup that didn’t include terrifying loved ones. I really think the they didn’t understand how worried we were. 

How do I end this post? I don’t know. I constantly fail as a mom, and then I get up the next day and try again. I guess that’s something. 

Top Ten Things I learned in Tokyo (On This Trip So Far)

We’ve been back in Japan for about two weeks, so I thought you might like an update. Here’s a list of things I have learned/realized/had reconfirmed:

1. No matter what I do, I’m going to end up buying my kids shoes in Japan. 

Last year on our first full day in Japan, it became immediately apparent that none of the kids had workable shoes. We don’t walk as much in our everyday Midwestern life as in Tokyo, where we average about 5 miles a day. It wasn't until we were somewhere in the middle of the city that I learned that Sky forgot to bring the inner soles of his shoes, Falcon's shoes had holes, and Stow's shoes, which were brand new, no longer fit. 

After buying three pairs of shoes on day one last year, I made SURE they all had shoes that fit and that were in good shape. Apparently, that was enough for them to make it 12 days until I had to buy three new pairs of shoes again, because this time Falcon's shoes were "too loud" and too hard to put on (who chooses high tops to wear in JAPAN?!), Sky's shoes were "too neon," and Stow managed to walk until he got holes in the shoes we bought about a month before our trip. Honestly, the only one who actually NEEDED shoes this time was Stow, but the dollar is strong against the yen right now, and I was really tired of hearing about the noise issue and the neon issues.

2. The only way to survive a rush hour train commute is with noise-cancelling earbuds and a solid playlist. 

I do everything humanly possible to avoid trains at rush hour. You've seen the videos. Rush hour in Tokyo is no joke. Sometimes, though, I have no choice. There are a lot of sub-lessons about trains as well: A) Even if it looks like another person can't fit, they can. If you are that person, step on to the train, turn around and back yourself far enough in that the door won't close on you. People packed on a crowded train tend to settle into place, and somehow you will find yourself with enough room. B) If you're short like me, try to stay near the door or the ends of the bench seats, so 1) you have something to hold onto, and 2) your face is not in everyone else's armpits. 

Anyway, I'm a bit claustrophobic and REALLY dislike crowds of people, so the crowded train is a worst-case scenario for me. My ability to cope with it has improved greatly since I got earbuds that cancel out all of the surrounding noise, so if I close my eyes, I can forget that I am on a train full of people. I even do this when I am on a train not packed with people and highly recommend this for anyone with claustrophobia or social anxiety. Also, if you want to hear one of my playlists, leave a comment or PM me on Facebook.

3. No matter how much I tell myself I won’t, I will STILL buy more pens. 

I have a lot of pens. This may be an occupational hazard for anyone who does work in or on Japan. Or maybe I just have a problem. Either way, I always resolve that this trip I will absolutely not buy any more pens. Last trip, I made it three days before buying one (and then a bunch). This time, I made it six days. But, I only bought two pens, and that's because these are absolutely the best pens I have ever used!!! I know I only needed to get one and that I could probably just get by buying ink refills for the same type of pen I bought last year. But what if the pen breaks? What if it gets lost? What if the padded rubbery part on the end gets sticky or gunky? How would I go on then? You can really never be too careful when it comes to pens.

I mean, look at this thing!

4. Getting the kids their own rooms was a stroke of genius  

I probably don't even need to explain this one. They need their own space where they can decompress and do their own thing. All siblings annoy each other, neurodiverse kids with very specific ideas about the world can make life impossible for one another. Miraculously, I finally convinced Ren to try AirBnB because lodging for 5 people in Tokyo is nearly impossible to find and puts us in really tight quarters. The AirBnB house we are using is tiny by US standards, but we all have space to get away from each other!

Falcon's bunkbed cave

Stow's room is barely big enough for his bed and less wide than Stow is tall.

5. It’s impossible to spend time in Japan and not walk away with lots of tchotchkes

I also regularly make resolutions about not bringing any more geegaws into my life. But, then I come to Japan, and I quickly crumble under the sheer number of opportunities to buy things I do not need. This time, I am proud to say I have largely managed to resist, though I did buy a couple of figurines and a sticker from two of my favorite Miyazaki Hayao films.

Model of one of the robots from Castle in the Sky

Uncle Pom sticker

Kodama from Princess Mononoke--can you blame my choices on these?!

6. You can waste a lot of money on vending machines and gachapon (Gacha gacha in English?).

We always give the kids some spending money when we come to Japan. Last year, Stow spent every yen that he got buying interesting drinks from vending machines (which are practically on every corner) and gachapon machines, which are also increasingly almost on every corner. Gachapon are machines that you pay anywhere from 200-500 yen to get a capsule with some kind of tchotchke in it. The machines are thematic with anywhere from hats for cats (Bunny Pearl has NO idea that this is her year to get initiated into the world of cat hats) to tiny soldiers in ring boxes to your favorite anime character holding different kinds of food. There are entire stores full of gachapon machines, and the possible "prizes" are oddly addictive. So, yeah, last year Stow spent about 15000 yen on gacha and drinks. This year, he has done MUCH better. He's managed to save his spending money, but the gacha fever seems to have spread to Falcon. Curse you, savvy toy marketers!

So. Many. Vending machines.

Gachapon haul

7. While I love big cities like Tokyo and Kyoto, I’m a small-town person at heart.

See #2 above. Also all of the posts I have written about mountains.

8. I will never master the Japanese ability to make a long train commute on a muggy day and still look and smell fresh. 

I really don't know how people do it. Inevitably I look like a cat that has just been given a bath whenever I get off the train after a rainy day commute. Meanwhile, the people around me are not only not wet, but they are better dressed and WAY more put together than I am on even my best days. I want some of that magic. 

Me after a June train ride

9. Traveling with three kids is challenging. Traveling with three neurodiverse kids can seem downright impossible at times.

I'll write more about this later, but I wanted to flag it here and say that sometimes I can forget how hard this is for the kids. Also, Ren is a saint, an absolute saint.

10. Monaka remains the best ice cream treat in the world.  

What can I say? Crispy cone on the outside, thin piece of chocolate in the middle of vanilla ice cream on the inside, not to mention the way the outer layer is lined with chocolate BUT STILL CRUNCHY. I believe it is a testament to human genius and ingenuity, and encourage you all, every single one of you, to eat one (many).

I mean, all Japanese ice cream is great....

....but nothing beats Monaka!

Questions for Parents of Neurotypical Kids

I have never raised a neurotypical child**, and I suspect parents of children who are not neuro-spicy have taken a very different path on the journey of parenting. Normally, I don't think about this, but it is end of the school year which means school art fairs and concerts, etc. In settings like this with many other parents and same-age peers around, I begin to suspect there might be some dissimilarities between what happens at our house and what happens in other homes.*** 

But, I don't know that for sure, so I created this list (off the top of my head) to see if my suspicions are true. I present to you Moe's questions for parents of neurotypical kids, the tween-teen version:

1) Do your children wear fleeces and hoodies well into the summer, even when it is above 80 degrees?

2) How many times do you address a child, who is in the same room, before receiving a response? 

3) How much do you know about Star Wars (the films and the various Lego sets that have come out since the early 2000s)?  Fall Out (the game and the TV series)? Tanks? Dragons? Paint colors? 

4) If a city has a subway or a train, are you obligated to ride it even if you don't have anywhere to go?

5) When you call your house, does your child answer and insist that you carry out a long, make-believe conversation either about what you want on your pizza ("Thanks for calling Pizza Hut. Can I take your order?") or what your emergency is ("911. What's your emergency?") Or, do they pick up the phone and sit in silence for a minute before saying, "Yeah?"

6) Do they start a conversation with you before they even get into the room and despite the fact you are in the middle of talking to someone else? Do they start talking about something they made up without realizing that you don't understand because you can't see into their head?

7) If they call or FaceTime you, do they start with hello or ask you how you are doing or do they just jump into to telling you why they are stressed or what they need from you?

8) Do you sometimes need to draw pictures to make sure everyone knows what you are talking about? Do you have to explain idioms? Or sometimes find yourself trying not to laugh when someone takes something so literally that it's absurd?

9) When you go to school concerts or other performances, do you have a stress response caused by memories of past concerts when your kid sang too loud or froze or refused to wear appropriate clothing?

10) Do you have a nagging sense of fear every time you drop them off at a party or any other informal gathering of their peers? Do they ever text you from a closet or from under a table because they are overwhelmed and want to be picked up ASAP?

11) What about school? Do you worry about them when they are there? How often do you get calls and emails from school? Weekly? Monthly? Never?

12) Do they come to you and ask for a squeeze or some other help so they can re-regulate?

13) How much time do you spend explaining to your children how to read non-verbal cues or to be able to understand why something they did upset someone?

14) How many times have their classmates or friends come to you to complain about what your child is doing? How many times have people glared at you or chided you for your failure to properly discipline your child?

15) Do they refuse to eat things because the texture isn't right? Do they refuse to wear certain clothing because it's too itchy, too tight, or too something else? Do they avoid showers because they don't like how the water on their body feels during the seconds between getting out of the shower and drying off with a towel? 

16) Do they refuse to go to certain areas of a store because the humming noise that you can't even hear is too loud for them to bear?

17) Do they avoid going into certain rooms in the house because they saw a bug there once? 

18) Do they get overwhelmed and shut down when you are in the middle of a conversation?

19) Do they get so absorbed into doing something that they won't come to dinner? 

20) Do they provide unwanted details about the workings of their digestive system WHILE they are still in the bathroom? Do they sometimes send pictures?

Twenty is a good stopping point even though I think I could probably go on forever! I suspect I know the answer to some of these questions, but I'd really like to hear from you all (parents of neurotypical AND neuro-spicy kids).

Writing these reminded me just how rich and interesting our lives are. I honestly wouldn't change a thing about my kids. What I would change is the world that isn't terribly welcoming of them. I wish for teachers, peers, family members, and strangers who don't judge my kids or mistreat them. Can you imagine a world where all kids are embraced for who they are and encouraged to grow in the ways that make the most sense to them? I hope we can get there some day. In the meantime, let's support each other by telling our stories!

Here is a picture of a cup of coffee, just because. 

**I'm not including Big Sissy here because I didn't have the opportunity to parent her until she was already as tween.

***Before I go any further, I want to state unequivocally that this is not a post about how I don't like autism and, therefore, my autistic children. Ditto ADHD. I feel like this should be obvious, but I have encountered comments in the past telling me that I don't accept my children for who they are. I do. And, I am also sure there are some real challenges in my kids' lives that they want people to know about and acknowledge. I don't post without consulting them.

There Are Bears Everywhere

You’ve probably heard about the man vs bear thing, but in case you haven’t: Women are being asked whether they would rather encounter a bear or a strange man if they were alone in the woods. A majority of women have said they'd rather meet a bear, and this has shocked a lot of men.

There are many reasons women have offered for choosing bear. Here are a few of them:

• A bear’s motives are easier to understand.
• A bear's actions are easier to anticipate.
• No one will doubt you if you say you have been attacked by a bear.
• A bear can't gaslight you.
• You won’t be blamed for being attacked by a bear.
• A bear won’t sexually assault you.
• You won’t have to worry about whether you live in a state that forbids you to terminate a pregnancy resulting from a bear attack.
• If a bear attacks you, it will be punished harshly (i.e. euthanized).
• You don’t have to worry about running into the bear again.

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To be clear, my answer is neither. I would rather have a peaceful walk alone in the woods without experiencing terror. But also, whether I encounter a man or a bear, I’m going to react in a similar way. I’ll feel anxious and a bit sick to my stomach. My heart rate will quicken, and I will get an adrenaline rush. I will avoid eye contact and do whatever I can to put distance between myself and the man/bear, and if that doesn’t work, I will prepare to defend myself. 

But, see, I already do those things when I’m walking down the street or in a parking lot at night or on trails (in a part of the world where there are no bears) or pretty much anywhere that I encounter a strange man when I am alone. Instinctively, I gauge how closely I am being followed and change directions or cross the street or duck into a store if a man is keeping pace or speeding up behind me. I have my keys ready and check the backseat of my car when I get into it at night. I also decide not to do things I want to do, like go hiking alone, because there is a chance it will be unsafe. 

In a sense, women spend their whole lives preparing to encounter (or trying to avoid) bears.

I don’t know, but I imagine it would be hard for most men to fathom this. I imagine that most men don’t understand what it is like to start to learn about bears in elementary school when boys pull up our dresses. Or in middle school when they ogle or touch our budding breasts. Or in high school when they laugh about who is “easy” or refer to our classmates as sluts.

Do men know what it’s like to buy our daughters rape whistles, alarms, and/or mace and to teach them the same things our moms taught us? The list of dos and don’ts goes on forever: Don’t walk alone, especially at night. Always keep an eye on your drink. Don’t go alone to a guy’s room. Don't wear noise-cancelling earbuds when you are out running. Try to get an apartment on the second or third floor but never the first, etc, etc, etc. We have no choice but to prepare to defend ourselves and to follow this impossibly long list because we have friends, relatives, and acquaintances who have been assaulted and then asked why they didn’t protect themselves better.

Being a woman is exhausting for a lot of reasons, but one of the biggest ones is that we must always be vigilant against potential encounters with bears. And, it doesn't matter that a bear hasn't gotten us, yet, because there is always the chance that one will. 

Of course not all men are bears, but enough of them are that we can never let our guard down.

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Listen, I love men. Some of my favorite people in the world are men. But that doesn't change the fact that I live in a world where being a woman is risky and exhausting. It also doesn't change the fact that we still have a long way to go before women feel safe and heard and respected. 

We need the help of all the good men out there. It's not enough to acknowledge the disparities between the experiences of men and women; men need to actively support women by working against the things that make life challenging for them. So, here are some suggestions**:

• Change directions or cross the street if you happen to encounter a woman alone.
• Speak out against sexist or misogynistic language or behavior.
• Listen to and believe women, even when what they are saying seems unbelievable.
• In meetings where their voices aren't being heard no matter how loud they are speaking, echo their statements while giving them credit for them.
• Be the first to volunteer to send emails, organize meetings, serve food, make copies, take minutes, or do any of the other tasks that tend to fall to women, even though that's not their job.
• At home, know when the kids have practice/lessons/school events and get them where they need to go without being asked or reminded.
• Take initiative on scheduling appointments for them.
• Take over the organization of household chores.
• Decide what to make for dinner and do the shopping yourself.
• Be emotionally available for the kids so they come to you with their problems as often as they go to their mom.

Maybe you are already doing these things. If so, awesome! If not and you want to know how to help, this is a good place to start. 

**Obviously, you can take them or leave them.

The Magic of Bunny Pearl

Every time we bring home a new cat, I'm always a bit amazed by how they seem to find their place in the ecosystem of the house. As everyone's new BFF, Bunny Pearl (who should have been named Kevin, or maybe Birdie) has taken this to a whole new level. 

Bunny P and Taro

Somehow she has managed to befriend all of the other animals in the house--even Momo who absolutely does not need (or want) your love, or your attention, or, really, even your existence. Bunny Pearl can get anyone to snuggle up to her. I was surprised when nervous Taro slept with her but absolutely astounded when Falcon sent a picture of her sleeping with MOMO. 

Bunny P and Momo

Not only do they all seem to like her, but Bunny Pearl has also helped them to start liking, or at least tolerating, each other. Before her, Momo never spent time near the dog and Taro wouldn't even come downstairs. Now we occasionally see all four of them hanging out with us in the living room in the evenings.

Taro!

Shiro loves having a little sister. Despite Shiro's complete lack of chill, Bunny Pearl stands her ground, unfazed when the dog licks her face or barrels into her. Both of them meet me at the door when I come home from work and follow me around until I've put my things away and changed my clothes. They won't leave me alone until they're sure they've received enough pets. Lately they seem to egg one another on. Both come running when they hear the ice maker or the air popper, and they fight over whatever I drop. Bunny P and Shiro take turns begging at the table all doe-eyed. And, since Bunny P gets on the counters, Shiro thinks she should, too. Double trouble.

Bunny P and Shiro

Honestly, though, the real Magic of Bunny Pearl is the enthusiasm with which she engages with humans. She likes to show off for guests. She waits just outside a closed door so she can catch us up on the latest news with her unrelenting meowing. She licks our faces (and hands and toes) like a dog who hasn't seen its owner in years. She prefers to be carried like baby. In fact, her favorite position is cradled in our arms with her head and feet dangling. I had no idea cats could be so floppy. 

Honestly, I'm not even sure Bunny Pearl is a cat. Maybe she's an angel who hasn't earned her wings, yet. That might explain why she falls off of things all the time! 

The Heart It Races Again

Remember back when Sky had Supraventricular Tachycardia (SVT) and ended up getting a heart ablation (link)? Well, funny thing (and by "funny" I mean "Are you kidding me with this?"), now Falcon has SVT. Funnier, SVT is rarely hereditary, and when it is, it’s a specific type of SVT that neither of the kids has/had. I guess that either means that we're playing really tight odds or that our family is in the process of helping doctors discover a new hereditary component to SVTs. 

It's starting to feel pretty Groundhog’s-Day-y. Apparently the early high school years are a perfect time for our kids' hearts to decide to go out of pocket, literally. It starts the same way; they hit a growth spurt and then start getting light headed whenever they stand up quickly. There’s a name for this: orthostatic hypotension. And, it’s pretty common as autonomic nervous system learns to adjust to the rapidly changing teenage body. That doesn’t make it any less weird to have your kid passing out or almost passing out every time they stand up. Keeping well hydrated and changing positions more slowly are the treatments for this, but you might as well ask my kids to climb Mt. Everest or cure cancer because they seem to find it impossible to do these things.

I've decided to add random Lego plant pictures to this post. 

At some point the kid’s body should regulate. The problem is that every body is different, so it’s hard to know when to worry. In fact, I’ve decided that parenting is one long exercise in trying to figure out if I should be worried. 

So, for awhile Falcon was getting dizzy when she stood up, and then she seemed not to, at least not at home. But one day a couple of months ago, Falcon mentioned that she has passed out or almost passed out at school a few times even though she wasn't in the process of standing up when it happened. When I pressed for more information, she described feeling like her heart was racing or that she couldn't catch her breath. She also noticed her Apple Watch heart rate readings shoot over 100 fairly regularly, even when she was just sitting. This definitely didn't sound like the usual syncope.

Did you know they had so many different types of Lego plants? Stow did.

We managed to get an echocardiogram and a 7-day holter monitor for her fairly quickly, but when we went to the local cardiologist for a follow up appointment, he had no idea where her test results were. Given how many times Falcon had pushed the button to record episodes, we were both sure that SOMETHING was up. So when, without any data to prove it, the doctor told us, "Your job is to tell me what is going on. My job is to worry," it was a little hard to believe he planned to do much. This proved to be true when Falcon texted him during an episode (like he told her to do), and he never responded. 

By the time we received a letter from him in the mail (apparently he never calls--only sends letters), I had already asked Falcon's primary care doctor to start the process of referring her to the university pediatric hospital an hour away. I was glad I had taken this step when I saw the cardiologist's letter to her: "Falcon, Thank you for letting me treat you. We got the test results. Your heart was fast a couple of times." I can't imagine a more unfulfilling letter. When Falcon's regular doctor sent the referral he also sent a copy of her test results to me. They clearly state Falcon has a few things going on with her heart and that one of them is SVT. Given how quickly the university pediatric cardiologist responded when they saw Sky's SVT on the heart monitor, the local cardiologist's lackadaisical approach to things seemed mind boggling. 

Are the flower pictures distracting you? I just thought they might add some color.

Now somehow we find ourselves on the same path we traveled with Sky. The nurse practitioner who saw Falcon at the cardiology clinic at the pediatric hospital scheduled an appointment for her to see the electrophysiologist, the same doctor Sky saw. We don’t know what the best treatment option will be for her, but at least I have a really good idea what the doctor is likely to say!

2024 has been a weird year so far.

Postscript:

I put these songs back on my current playlist in honor of Falcon's diagnosis. She was simultaneously amused and appalled when I first played them for her, but I heard one of them coming from her room yesterday, so I guess they made her playlist, too!

Click the links to hear them on Spotify:

Dr. Dog, "Heart It Races"

Sia, "Elastic Heart"

Tune-Yards, "Heart Attack"

SPD, Interoception, and Figuring Out Whether a Kid Is Really Injured

In my previous post I wrote about how since Stow always thinks he has broken a bone whenever he twists an ankle or stubs a toe or a finger, we have a difficult time knowing when something is actually serious. This isn't because he is trying to get attention or be melodramatic but because, thanks to sensory processing disorder (SPD), he is hypersentive to touch and also has a heightened sense of what’s going on inside his body (this sense is called interoception). Typically, we have to wait to see how he seems one or two days after any kind of injury to determine whether it requires medical attention.

After taking a baseball to the tip of his middle finger on Wednesday (you know, when I refused to go pick him up because we wanted him to make it through a whole week of school), we waited until Thursday to see how he was feeling. When he said it hurt more, and he felt like he could feel a bone moving 🤢, I called to make an appointment.*** By the time we finally saw his regular doctor, the X-ray technicians had gone home for the day, so it took another day to get the x-ray and results. Late Friday, they confirmed it was broken.

He loved that the X-ray technician told him to “give her the finger”--lol.

The orthopedic doctor's office told me they couldn’t get him in until Wednesday. An autistic kid with a hyper-elevated sense of interoception and a good dose of anxiety who now knows his finger is broken can NOT wait an additional five days to have his injury treated. Just, no.

So, today we went to the orthopedic walk-in clinic in another town and got a diagnosis and the appropriate splint. Fingers crossed that this won’t require surgery (and, yes, I’m aware of my bad pun—sometimes I just can’t help it).

Fortunately, Stow finds humor in the fact that he will be “flipping people off” for the next six weeks because I’m having less fun with this. In fact I’m about ready to never let him leave the house again, at least not unless he’s wrapped from head to toe in bubble wrap.

***If you are wondering why I didn't just take him to the ER: 1) He doesn't like change so wanted to see his usual doctor, and 2) Waiting can be really hard for autistic kids, and I didn't want to add the stress of an interminable ER wait--of course, if we thought it was an injury that required immediate attention, we would have taken him anyway, but since we had it splinted, and he wasn't in excruciating pain, we waited.

Another Call from the School Nurse

When the school nurse called today, she led with, "This time it's not his head" before proceeding to tell me that Stow suffered a jammed (and hopefully not broken) finger when a softball hit his hand during PE. Like the day of the second concussion, the call came when Ren and I were out together. Since Ren and I rarely go out together especially during the academic year, the timing of the call was unsettling. We all, the nurse included, have residual trauma from what has gone on this year.

Stow insisted on talking to me; his voice told me he was struggling to keep it together. He was sure his finger was broken and, even if it wasn't, that he needed to come home because there was no way he could focus in class. I reassured him. Told him the nurse would give him ibuprofen and ice and tape his fingers together and that I would call and check on him. He did not like this solution, but he agreed to it.

When he got home, the three middle fingers of his left hand were taped together with a small ice pack incorporated into the mix. Bless the school nurse. She knows and cares about Stow and can speak his language when he is panicking about an ailment. Stow often thinks his bones are broken, so we will wait until tomorrow before deciding about prompt care. 

Random picture of Bunny Pearl because I couldn't find any other picture would make sense with this post.

Last week, it was consecutive jolts to the head (again in PE) when the basketball came at him faster than he expected it to. Since that led to a headache and nausea, Ren picked Stow up early just to be on the safe side. Concussions and concussion recovery are tricky. 

Having an autistic kid who greatly prefers being home playing video games is also tricky. Once he gets sent home by the nurse a time or two, Stow is much more likely to think he needs to come home if he isn't feeling 100%, and with two concussions under his belt, he often isn't feeling in peak condition. Telling Stow I couldn't pick him up today was hard. I didn't know (and still don't know) if Stow's finger was (is) broken or not, but I knew he needed to stay at school if he could. We've got to get him through a full week of school.

There is no point to this post other than to say we are still here and still making our way through the confusing world of middle school for Stow. The smooth sailing we experienced from the start of school until the first concussion in late October is a distant memory. Just when he seemed to be hitting his stride again, the second concussion happened. Now we struggle to get him to school, to keep him at school, and to help him focus on his school work. He has lost a lot-- his chance to participate in his first bowling season, a band trip to Six Flags, recess, PE, band, his confidence, his memory...

Completely unrelated picture taken by Sky of a train in downtown Chicago. 

Following the second concussion, we had to take some steps I never thought we would have to (I am being intentionally vague here for, you know, reasons). Up until the second concussion, I believed that all of the advocating and educating I was doing ensured that Stow would get the support he needs at school. I mean given all the of 504 and IEP meetings I've attended, I should be a pro, right? But after seeing the way the school handled the second concussion, it became exceedingly clear to us that the school STILL doesn't know how to effectively support and accommodate Stow. As one of his therapists put it, "They treat autism like it's a behavioral issue when they should be treating it as a developmental delay." 

I can't even count how many times Stow has been disciplined for a behavior directly tied to his poor social skills. And I also can't count the number of times I have been told that he needs to be disciplined so he will learn his lesson. Round and round and round we have gone on this as I have repeatedly explained that the lessons Stow learns from the problems in peer relationships are simply not the same as what his neurotypical classmates learn. And over and over I have asked for two things: a full-time autism specialist on staff with the school or the district and constant line of sight support for Stow. To the first request, I have been told either they can't afford to hire an autism specialist or they can't find someone to provide autism support. And in response to the request for more intentional supervision/support, that Stow is fine and doesn't want to be followed around by an adult. If these two things had been in place, we are fairly certain we wouldn't be talking about concussions right now.

Guess what happened almost immediately after I told the case worker we were working with a special education lawyer? The district hired an autism specialist who will start in the fall. And, the conversation about line of sight supervision shifted from whether he needs support to how they could provide it in ways that would be the least disruptive to his efforts to socialize appropriately with his peers. For the first time, folks on his IEP team acknowledged that THEY DON’T ENTIRELY KNOW HOW TO MEET HIS NEEDS and so want to base future decisions about his accommodations on what the autism specialist advises. OMG, you guys, I have been trying to get them to do this for YEARS.

We can't really afford a lawyer, and I don't believe in being litigious, but if the end result is better support for Stow and all of the other kids like him, then it's worth it.

Shattered

Sometimes when I sit down to do a blog post, it writes itself. Other times, the story that needs told can't find its way out of my head to the keyboard. This is the latter, so bear with me as I wrestle it to the page. And know going in that I am not going to be able to tie this up into some kind of neat parable or object lesson.

*****

The day before I flew across the country for a four-day conference, the school nurse called. I don't know if you ever get calls or emails from school, but they often start with "First, I want you to know that [child] is fine." Or, they don't. And in our case, when they don't, I know I am about to hear something that will upend my day. This call started with, "I'm really sorry, but I have bad news." I braced myself and would be lying if I said my first thought wasn't a combination of panic and the word"f#ck." Because it was.

Ren and I had just pulled into the Target parking lot to pick up things I needed for the trip, and before the nurse even told me what had happened, I knew my day was going to go sideways fast. (My motto isn't "Every day goes south in its own way." for nothing). 

Stow had gotten another concussion. This took me a minute to process. What did she mean? What did THIS mean? How could one kid be THAT unlucky? The nausea set in after I pressed for details. All she knew was that he was hit in the head in PE, but I could tell from the way she said it, that he wasn't hit in some kind of sport accident. I asked her to put Stow on the phone. Stow told me that another boy had hit him. I asked if it could have been an accident. He said, "No, he punched me in the head." 

Now, I can't tell you more than that about what happened because of a lot of reasons I can't go into.

Ren and I quickly finished our business and got to the school. Going in I told Ren I wasn't leaving until I talked to the principal or vice principal. We went to the nurse's office to find Stow, and the nurse told me the results of her concussion evaluation. Stow had all of the symptoms he'd just spent two months getting over--headache, sensitivity to light and sound, nausea, foggy thinking, and dizziness. He was terrified that the second concussion might cause permanent damage and cried when he recounted what happened. Heightened emotions are another sign of a concussion.

Ren and I waited with Stow through the end of the principals' lunch duties and a fire drill (!!  !!!!). Finally, maybe 45 minutes after we got there, the vice principal came to talk with us. I can't tell you what we discussed. I can tell you that Stow went home and to bed, and I talked to his primary care physician and then to the pediatric neurologist we now have as part of his extensive support team. They both told us to keep an eye on him and to put him back on concussion protocol. 

The next day, I flew to the conference that I just couldn't skip, and Stow missed school. He spent most of the next few days in the nurse's office trying to deal with the headaches, nausea, dizziness, and inability to concentrate. Over a week out, he still hasn't made it back to all of his classes. He had to drop out of the bowling team, and he has spent hours with therapists talking about what happened and how to deal with it. I have spent hours talking to various people about what to do.

*****

The day the he got the concussion, Stow was wearing a brand new pair of shoes. He hasn't put them on since. He says they are bad luck. The shoes are the thing that is most noticeable on the grainy video of the incident--the only way I could find him in the crowd of students. Now they sit in our garage, something he was so excited about and is now afraid to wear.

*****

Recently I shared this blog with someone interested in a parent's perspective on raising autistic children. As we have traveled on this path, I have become much more sensitive to my position in this whole thing. I am not a victim. My kids are not broken. They do not need to be fixed. But, and this is a HUGE but, being a "neurospicy" kid in an ablest world is tough. And, watching my kids struggle through this breaks my heart in ways I didn't even know it could be broken. 

Yesterday we saw the video of what happened, and it absolutely shattered me. The incident was hard enough to watch, but what happened after is what undid me. Stow looked so absolutely alone. I could see him at a loss for what to do, searching in vain for someone who might have seen what happened and who might be able help him.

It made me never want to let him leave my side ever again.

Their journey isn't about me. I get that. But, man.

The Nut Wars

Sometimes it is impossible to tell whether I'm a really good parent or a really terrible one. Since I'm usually so busy with the day-to-day chaos of parenting while working full-time, I don't spend a ton of time thinking about this question, but occasionally something happens that makes me reassess everything I do as a mom. One of those times happened with Stow a month or so ago (BEFORE the concussion incident), and it came in the form of a writing assignment.

Stow doesn't love English class, and he does not love writing, so when he excitedly asked me to look at what he'd written for homework, I was taken aback. He told me they were supposed to write a story about feelings without using the word for the feeling. His feeling, he explained, was anger. When he showed me his computer, I was thrilled to see that he had written more than one or two sentences AND that he had done so without nagging from me or Ren.

Then I read what he wrote:

Nut War 2

Once there was a small fat round squirrel that lost his nuts. He dropped his nuts while he was running away from the neighbors fat lazy dog. He left the nuts but he will always remember them, then he Became maniacal from the loss of his nice juicy round nuts, he gathered his squirrel friends all 10,230,381 of them and planned an attack with his smartest squirrels with nuts as brains but not just any nuts, big brain nuts, He got nut bombers and planned them to bomb doggy harbor, and his nut tanks were sent in a wave of them, the navel nuts sent in last clearing all the remains of the dog army, and well… the nut army well they just ate nuts. He would do what it takes to destroy that pesky dog. Then the day came, the Nut Bombers Came in at a “High” altitude Bombing from 10ft in the air. The dog attacked the bombers and Sir Squirrel got even more Maniacal, he sent all his troops including himself and fired the nutty nuts, the dog just licked their shiny nuts, sir squirrel threw his exploding nuts, there were too many dogs. Sir Squirrel the 3rd retreated in defeat and anger but was oddly surprised at how smart the dumb dog was to win the attack. Sir squirrel the 3rd is in grief and regret that he did not push the attack, Sir Squirrel the 3rd lives in the street with his fat wife, he lives in the street because he spent all his nut coins on the attack. 3 months later, Sir Squirrel the 4th was born and Sir squirrel the 4th heard of this story and wanted to avenge Sir squirrel the 3rd and his big large round shiny nuts so he Started “Nut War 2”. Nut war 2 was the bloodiest war in nut history.

Sir squirrel the 3rd
death 2012 august 3rd
from a falling nut
His last words were
“Those darn falling nuts”

Buy the 2nd novel for the rest of this nutty tale for only $10.99 Limited time, just don't get too nutty about it.

*****
Now, what would YOU do? Your kid who hates to write has created an extended pun, using multiple sentences and decent spelling and grammar. Telling him to rewrite it would 1) meet instant resistance, and 2) risk the possibility of crushing his spirit. But you also know that his teacher will likely not find the humor in this exposition. Plus, you aren't sure what the assignment was but feel pretty certain this wasn't it.


What would have been the right response?






And, how would you have discussed it with your kid?

Seriously, think about it...








and once you determine.....








how you would have responded.....








scroll on down to hear the rest of the story.

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Here's what I did. I'm not sure it was the right thing to do, but it was the only thing I could think of to do.

I told Stow I thought it was a brilliantly creative and funny story. I asked him to explain the assignment again and questioned whether he was sure he'd understood it. (He was). Then I pointed out that although I thought it was funny, I wasn't sure his teacher would. I reminded him that there is a time and place for certain humor and that it was up to him to determine whether he thought submitting it was appropriate. He responded by asking me, "Mom, it's just about a squirrel and his nuts. Why would the teacher get mad?"

He had a point, but also, the story was clearly not about THAT kind of nuts.

After reiterating that I was pretty sure this wasn't what the teacher was looking for and asking him to consider how she might feel reading it, I gave up because clearly his mind was set. 

Plus, I was happy he'd done the assignment and didn't want to crush his creativity.

I forgot about the assignment for a few days. And then this arrived in my inbox:

Good morning,

I wanted you to be aware of the writing assignment Stow turned in. The assignment was to write about an emotion. The task was to "Show, Don't Tell" what the emotion would look like, sound like, feel like. Students also needed to include strong verbs. We worked on this for several days in class, going over examples, having class discussions, modeling both good and bad examples, and doing in-class practices. 

[Copies and pastes "Nut War 2" in full]

We are going to have Stow redo this assignment, as how it currently is, will not receive many points. He wrote a creative story, rather than explaining the sensory details of the emotion he chose - mad.

Mrs. G. and I are also concerned about its appropriateness. The largest focus seems to be on "nuts." While he wrote it to be about squirrels, the way he describes everything is not appropriate.

Sincerely,

Miss N

*****

One of my close friends is convinced that Stow is on a secret mission to force teachers to write emails to me that include words that teachers don't normally say. I've gotten emails about things like "Merry Poopmas" (kindergarten) and appropriate and inappropriate uses of the word "bottom" (2nd grade). So when I told her about this, she just added it to the ongoing list of things Stow has forced adults to have awkward conversations about. 

My first instinct was to feign ignorance when responding to the teacher's email. Maybe if I pretended I'd never seen the story before she would never know. Then I realized that the FIRST thing Stow would say to his teacher about this is, "My mom thought it was funny." 

My next instinct was to panic--Was I wrong to let him submit that essay? Should I have lied and told him I didn't think it was funny? Am I inadvertently encouraging delinquent behavior in my child? 

After considerable inner turmoil, I decided to tell his teacher the truth. Yes, I did know about the essay. Yes, I had read it. And, yes, I had talked to him about it. I explained why I didn't dissuade him from submitting the assignment. 

She responded kindly and explained what he needed to do to get credit for the assignment. The class had been working on how to express emotions through writing--so, for example, instead of saying "she was sad," they were learning to write things like, "her eyes filled with tears." Since identifying and describing emotions is something autistic kids can struggle with, it didn't surprise me that Stow found this assignment difficult. But since he was pretty adept at giving examples in class, his teacher didn't realize how much he didn't get what she wanted them to do. Being able to give verbal examples and understanding how to do a writing assignment are two completely different skills. Stow did the assignment as he understood it. His choice to be funny was likely an attempt to cover his uncertainty about the task at hand.

The teacher made him redo the assignment because his original submission was "inappropriate." But I think she if she was going to have him redo it, it should have been because he really didn't understand it. When he sat with his therapist to rework the assignment, she helped him understand how to write phrases that showed how someone is feeling. He ended up changing his emotion to "sad" and describing how he felt when he lost his Nintendo Switch. 

It was not nearly as amazing as his nut story, but I guess we both learned something from the experience. Stow learned about the importance of knowing the appropriate time and place for some kinds of humor. He also learned how to describe emotions. I learned that my kid can write a kick-butt essay full of puns, but the teacher probably won't like it.

Ordered this shirt online and now I want to know what a "goobye" is 

I'm not sure how to end this post, so here is a picture of a shirt that I ordered online. Somehow it feels like a metaphor for most of my parenting decisions: close but not quite.

Now What?

Ever since the concussion, I've been thinking about this 2019 incident a lot, and ironically, at the IEP meeting on Tuesday the person on his team who has known Stow the longest referenced the year this happened, noting that he had a "really difficult time." After the incident on the bus, we never did get things back on track for Stow, and then COVID-19 happened, making it difficult to know if we would have gotten there eventually. The trials he experienced then were a major motivator for getting him a service dog. Without going into details, suffice it to say that I got weekly, if not daily, phone calls from school until they transitioned to online learning in March; he went from being in a low-support environment to a high-support one at school. Maybe it wasn't the bus aide telling Stow to shut up that triggered the spiral, but the changes in behavior pattern strongly indicated that it was.

Dog pic by Stow. We had fun celebrating Shiro's third birthday.

The third-grade year came up at the IEP meeting this week because the woman who mentioned it wanted to highlight how much progress Stow has made since then. "He's a completely different kid!" she said. While Ren and I agree that Stow has grown and matured a lot, we also know that he is, in fact, not a different kid. He is still Stow and things can still throw him. And THAT makes the candy bag assault so much more infuriating. Stow seemed to be coming into his own socially and academically before this happened. He'd taken on leadership roles at school and was working hard to build positive relationships with his peers. The concussion stopped him in his tracks.

Most days now, he doesn't want to go to school and when he is there he doesn't want to do school work. At some point on any given day, his headache returns, and all he wants to do is come home. He's asleep by 7:30 most nights, worn out from trying to get through the day.

He's more wary of his peers, too. The behavior of the two girls who hit him is inexplicable which makes things harder for him. Many autistic people learn a lot about social interactions from studying the behavior of other people. They look for patterns and try to understand the various implicit rules involved in how we engage with one another. If the candy bag girls didn't abide by any of those rules, who's to say that other kids aren't equally unpredictable and dangerous? Right now, he is going through his school day like a kid with open wounds, highly sensitive, pained by any glare or mean word. It doesn't help that he sees one of the two girls in many of his classes. It's important for him that she understands how much she hurt him, but she doesn't or can't.

Another dog pic to brighten this blog post! Here she is playing with her birthday present.

Since the incident, I get almost daily phone calls from school again. Our hope is that things will get easier for Stow as he feels better and better physically. He IS more mature than he was in third grade, and he HAS been doing so much work to manage some of his more impulsive tendencies. But nothing changes the fact that the girls who hit him didn't play by any of the social rules he has worked so hard to understand, and his sense of justice makes it very difficult for him to square the fact that both girls are still in school. 

I suppose these are good lessons to learn. People aren't predictable and the world isn't always fair. I just wish he didn't have to learn these lessons like this.  

Now what?