Thursday, September 9, 2021

ANSWERS TO ALL OF YOUR PRESSING QUESTIONS ABOUT REN

Some of you have asked how Ren is doing, which made me realize it’s been awhile since I’ve written a proper update. So, now I present to you, ANSWERS TO ALL OF YOUR PRESSING QUESTIONS ABOUT REN: 

Answer #1: First, and most importantly, vacuuming is still Ren’s life source. Or should I say life force?! I guess it’s probably both. The kids know if dad is vacuuming, all is well with the world, and if he’s not, well, something’s off. Some of you may call that an obsession. I call it the world’s easiest way to know if your spouse is feeling ok physically and mentally. And, I can tell you, Ren is feeling fine!

I’m not sure how SHIRO feels about Ren’s vacuuming habit, but I’ve got to admit, I’m a huge fan of the reduction in dog hair around the house. Given the fact that she dutifully comes and lies down next to him when he grabs the vacuum and the bag of dog treats, I’ve got to believe she doesn’t mind it too much!


Have I ever told you how good Ren is at getting animals to do what he wants them to do? Are we the only family with a cat that knows how to beg for food?


Answer #2: The spine is still in one piece. Well, actually, it’s in a lot of pieces, including a not insignificant quantity of extra titanium pieces! But, for now, the pieces are all where they belong. In fact, they’ve been in the right place for TWO WHOLE YEARS, which, trust me, in the world of spine surgeries feels like a blessed eternity. 

X-ray from Ren’s 2-year follow up appointment

We know that one day it is likely that what remains un-fused may go south like the rest of the spine did, but that day is not today. And, Ren is tremendously adept at making things work with the spine he has. The man has more overall flexibility than I do (darn him!), and aside from a few notable (and entertaining) exceptions (like swimming and being able to get himself out of a deep chair…and, oh yeah, the alpine slide), you would never know he’s had seven spine surgeries!

Answer #3: Ren’s playbook of luuuuv, a lifelong go-to source. How do I know he loves me? He makes my tea and picks up the dog poop. When it comes to words, though, his skills are less developed. I’ve been working on a translation guide:
Standard Japanese  /  Ren’s Japanese

 

Hello? (On the phone) / uhn

Welcome home (when I get home from work) / uhn

How was your day? / (silence)

Yes. (In response to a question, even if it’s not a yes-no question) / uhn
I read somewhere that the average number of words exchanged between a married Japanese couple in a day is well below 100 words. I don’t know if that’s true, and I can’t remember the exact number. I just remember thinking it was shockingly low. But then I started noticing how many words Ren actually says in a day. Many people say that a healthy relationship in Japan is one that requires few words. Lucky for us, then!!







Saturday, September 4, 2021

Shiro Goes to School

School started this week. Before we got Shiro, we weren't entirely certain we would try to send her to school with Stow right away. We wanted to be sure that they had good chemistry and that Stow wouldn't be distracted by her. As soon as the two of them met, though, we could see how she helps Stow regulate. So when the trainer came to work with us, we included a training session at his school in our schedule. 

In order to have a service dog at school, we needed to articulate specific tasks Shiro would do for Stow. For a visually impaired person or a person with epilepsy, it's perhaps easier to see the role a service animal can play. With autism, the support a dog can provide might be less obvious, so it took several conversations with the district to make sure that Shiro would actually be able to accompany Stow to school. Fortunately, when the director of special education saw him with Shiro, she immediately noticed just how much more confident and relaxed he seemed. Because she has worked with him since he was 3, she knows just how many human resource hours have gone into helping Stow regulate at school; I imagine it wasn't hard for her to appreciate the value in having Shiro there to help.

Checking out the building.
It took several conversations, some paperwork, advice sessions with the trainer, and a few phone calls to the bus company, but we finally got official permission for Shiro to go to school. The day before it started, we went to meet Stow's teacher and to introduce him to Shiro. He and Stow figured out what to do with her portable crate, where she would relieve herself, and where to put Stow's desk so Stow wouldn't be distracted and Shiro wouldn't distract others. Shiro and Stow walked the hallways with his case manager while I hung back and talked to his new teacher and the social worker. 

Heading to school.

The first day of school, Stow was up and ready to go well before the bus came. We made sure Shiro had an empty bladder, put her vest on her, and hooked her up to Stow. When the bus came, Stow went willingly and without anxiety. I had to lift and push Shiro onto the bus, though, because she was much less sure about the situation (she'd never ridden a school bus before). She came home at noon, and Stow came home at 3, and by all accounts, both of them had a great day. The second day, she went willingly onto the bus, and, other than a few hiccups (like Ren forgetting to go pick her up one day), it seems to be going really well.

Working hard at school.

People keep asking me if Shiro is helping Stow, as if she will bring some sudden and obvious change in his life. When I feel pressure to answer that question, to somehow justify all of the time and money that went into making this happen for him and our family, I get pretty anxious. I mean, it's not as if everything is magically better. But then I take a deep breath and notice that mornings have gone smoother; meltdowns have been shorter; and Stow has willingly and happily gone to school every day so far. Most importantly, Stow feels that Shiro makes things 100% easier for him. That's a huge improvement and something that we hope will lead to less stress, fewer intense moments at school, and increased independence for years to come.

Chilling after a long morning at work.


Tuesday, August 17, 2021

Training

After a ten-day adjustment period, Stow and Shiro started their official training this week. Day one got us off to a bumpy start when Shiro sneaked some food that Stow dropped on the floor at Qdoba and then vomited it up the middle of Costco. On the bright side, it wasn't runny, so it didn't go everywhere, but on the less bright side, there was SO MUCH of it and neither the trainer nor I had enough paper products in our bags to deal with it. Saying I needed to clean up a mess, I grabbed a handful of napkins from the nearest food sample station. The napkins were smaller than I expected, though, so I ended up taking more than was socially appropriate apparently, because as I walked away, I heard the employee muttering under her breath about my bad manners. 

Training.

Stop number two at Party City didn't go a whole lot better--well, ok, I guess it went better than dealing with a pile of vomit, but there was still a hiccup. When we rounded the corner in our search for birthday plates, Shiro started barking. Nothing sounds louder than a dog barking where they're not supposed to bark (except maybe your baby when it is crying on an airplane), so I was mortified. Turns out she was just really surprised by the giant cardboard stork at the end of the aisle (aren't we all?). I pretended not to know Stow and the trainer and went on with my shopping while they showed Shiro that the bird was not, in fact, real or dangerous. This is clearly why I am not the trainer.

Things have gotten easier each day. Stow and Shiro have trained on campus, at Farm and Fleet, at school, in Walmart, and pretty much anywhere else we can think of. They are both learning what to expect from each other, and Stow is starting to understand what he should do when he wants support from Shiro. The main things we hope she can help with are his anxiety and resultant avoidant and/or impulsive behavior. We are already seeing a big differences with these things at home and when we are out. He is more willing to go places and is less reticent in social situations. Plus, he's learning a lot about responsibility as he works to take good care of his new canine friend. 

Holding hands.

But let’s be honest, Stow and Shiro aren't the only ones being trained this week. Over the past several days, all of us have learned some things. Ren and I have learned that some dogs REALLY love to eat rocks; just how far down a dog’s throat you have to stick a pill so she’ll swallow it; what the appropriate time frame is for picking up poop before it gets consumed (ewwwwww); and that even well-trained puppies need some time to adjust. Falcon has learned that there is enough golden retriever love to go around (times a hundred!!); and that she should never underestimate the stubbornness of her beloved cats. And, Sky has learned that an early morning run with the dog is oddly refreshing and that SOMETIMES it's ok to take a risk and try something new, even if it doesn't seem all that logical.

Naptime
In the car on our way to training today, Stow forlornly worried that if he grows up his life won't be fun anymore. He cried as he thought about not being able to go places or do things together. I remember being equally scared of change when I was his age, and I still remember what my mom said to me when I had the same conversation with her: "We can never know where life is going to lead. All we can do is be grateful for all of the great things we've already experienced and keep living our lives the best way we know how. " That's what I told Stow in the car today. As a person who never imagined I would be a dog owner, much less the parent of a kid with a service dog, this has been such an incredible experience! I'm really glad my mom was right.
Everybody Needs a Rock

Sunday, August 8, 2021

Dog family

The trainer told us she would arrive between 12 and 1 pm on Wednesday. When Stow gets overly excited, impulse control becomes difficult, so Wednesday morning was rough. By 7 am it was clear that he needed to stick close to me (since I tend to be the best co-regulator for him). So we loaded his backpack with snacks, some books, some markers, and his Switch, and I took him with me to my office--where I was desperately trying to hit a book deadline. (Note to self: the week of a book deadline, is NOT the best time to add a new family member.)

We came back home in time to have some lunch and watch a little TV. It didn't take long for Stow to get antsy, though, so we went outside to wait, killing the time by making bets on which car would be the one with Shiro in it. 

Waiting.

Finally at 1:03 pm, she arrived.

First walk.

The plan was (is? ugh, grammar is hard!) for the trainer to leave Shiro with us for ten days while we all get used to each other and figure out various family dynamics. That way, when it's time for final training, we will have a much better idea of what our challenges will be and can problem solve them before the trainer heads back to Canada. So, after some introductions and some chatting and some quick tips, we found ourselves home alone with our new 9 month-old pup.

We are now officially a dog family. 


Look at those eyes!
Life has been a bit chaotic ever since. If you've had a dog, you know what I mean. Since I'm new to this whole dog thing, I STILL don't know what I mean. I just know that our sleep schedule has changed; the pup is so smart that she seems to be testing us at every turn (and finding all of our many weak spots); and the cats aren't thrilled. Stow has been doing an awesome job making sure Shiro is fed, let out, and walked, and it is fun to watch how happy he is to have the unconditional acceptance of another living being. 

Calm.

Helping Stow finish his book. Lol.

That said, Stow is also struggling with the fact there has been a change. Change, whether it is good or bad, almost always equals more meltdowns. Fortunately, nothing seems to faze Shiro, who can chill just about anywhere. 


We're working out the kinks right now, but in the end, I'm pretty sure this is going to be amazing!

Tuesday, August 3, 2021

One More Sleep

 A little less than eight months ago, following a series of happy coincidences and the support of a large network of friends and strangers, we learned we would be getting a service dog. Never in a million years did I think it would work out for Stow to get a service animal. And it seemed even MORE unlikely that I would want to live with a dog! Still, here we are, one sleep away from Shiro's arrival, and we are a combination of excited and nervous. 

Shiro countdown clock.

The past few months have been up and down. Right before his tenth birthday, Stow was bitten on the face by one of the neighbor dogs just as the bus arrived to take him to school. Fortunately, he only needed a few stitches, and the scar is barely noticeable, but the experience made him fear dogs in a way he didn't before. (It also totally traumatized me since I was the one who encouraged him to go say "hi" to the dog we knew, unaware that the other dog being walked by our neighbor would get jealous and fight for Stow's attention. Ugh--what a stupid parent move on my part!). Anyway, it took a couple of months to help Stow through his new fear of dogs and to convince him that Shiro would never behave like the neighbor dog had.

Smiley Shiro pictures helped, though!

More recently, we have been rearranging rooms to find the right space for Shiro's crate and her doggie bed, and we've been making last-minute trips to the store to make sure we have the food and other things she needs. 

Ren and I got ourselves a dog bath for our birthdays.

It turns out I know almost nothing about caring for a dog. I've been texting the trainer, and I've been texting our neighbor (Winnie's mom), and none of my questions are intelligent ones. What's the difference between a training treat and a chew? What kind of shampoo does a dog use? How often does she need to go out? Will she get along with the cats? Then there were the questions I didn't even know to ask. Did you know that dogs like to eat cat litter? Glad I got the head's up on that one because I am pretty sure I don't want any puppy kisses after Shiro has snacked on "kitty crunchies!"

Shiro left on her journey to our house yesterday. We weren't sure they would be able to make it through the Canada/US border due to COVID restrictions, so all of us were thrilled when the trainer sent a picture of Shiro's first moments in the US. Updates from the trainer have made it easier for the kids to make it through the past couple of days. 

Shiro looks completely thrilled to be in the US!

One last stop at the vet before she comes our way

It's hard to imagine how our lives will change once Shiro comes to live with us. What I do know, though, is that this is our last night of not being a dog family and our last night of wondering whether or not she will love us as much as we already love her.

Thanks again to all of you who helped make this happen! We look forward to sharing Shiro and Stow's story with you!

Monday, July 19, 2021

The Road Trip

Hi! Remember me? Sorry I've been gone for awhile. Parenting while working during a pandemic has proven to be....well....challenging. But, I haven't wanted to be all complain-y on the blog, so I've been keeping to myself. Besides, do you REALLY want to hear about the minutiae of our daily grind? The good news is that we are all ok, and I am convinced that the past year taught us Important Lessons about life and living in the moment. 

We LIMPED across the finish line at the end of the school year, and then I taught a summer course, and then then there was some drama with Sky's classes, and then suddenly it was late June and time for us to set off on our First Ever Family Road Trip. 

When I first suggested we take a 10-day road trip to the mountains, Falcon lost it. Falcon is my non-autistic kid who handles change well and rarely overreacts, so her response surprised me. Worse, what she said made a lot of sense. She argued that since we couldn't even make it to the grocery store and back without one of the boys freaking out, there was no WAY we'd make it to Colorado and back. She also had some strong opinions about my suggestion that we camp the whole way.  I mean, she's not wrong. We are not known for our ability to be flexible and adjust. That's life with autism. 

Falcon's first reaction was so strong that I nearly gave up on the idea of the trip. But, driving across the country with my family has been a dream of mine for a really long time. Every summer, I tell the kids we are going to do it, and then I chicken out. On top of all of the other logistical challenges of planning a trip like this, we had the added stress of COVID-19 and some big unanswerable questions like: What if Ren's spine can't handle the drive? What if Stow elopes or becomes inconsolable after so many days away from home? These were all real possibilities and would be horrible if they happened when we were 12 hours from home. Still, after sitting on the idea for a month, I decided that we were going to take the trip anyway. Sometimes you just have to face your fears. 

Falcon was still resistant and she didn't entirely come around until I agreed to stay in hotels instead of planning to camp the whole trip. It was an expensive compromise but also one I am sure saved us much heartache. Instead, of campsites, then, I booked quirky "Mom and Pop" motels, and we had three fabulous nights in Grand Lake, CO, staying in a cabin near a lodge where I worked for the summer when I was 20. 

Random trip photos: Needles Highway (South Dakota)

For a first attempt, the trip went surprisingly well. Plus, I learned a few things along the way that I can share with you. So, here I present "Moe's Random List of Things She Learned While Driving Across the Country in a Car Full of People":

1. First--and I don't think I can stress this enough--when you have five more hours of driving to go, don't buy burritos with beans in them for lunch. Seriously. Somehow I did this not once, but TWICE! Given our various food allergies, fast food options are limited, which is how we ended up eating at Qdoba. I'm hoping I've learned my lesson, especially after the second time when it was raining so we couldn't open the windows.  

2. Build flexibility into your plan. Some of us wanted to do things and some of us didn't. Being able to be flexible was vital. The cabin we rented for the three nights we were in Colorado was close enough to town that we could walk, so if a kid didn't want to go, we could take turns being out and about. Similarly, when we were driving through the Black Hills in South Dakota or Rocky Mountain National Park in Colorado, we didn't force every kid to get out and look at the scenery every time. By being flexible in our own thinking about what we wanted to achieve on any given day, we ended up helping the kids manage their frustration tolerance in ways we haven't seen them do on other trips.

Custer State Park (South Dakota)

3. Be specific about the plan and the possible ways it could change. I know this sounds funny given what I just wrote in #2, but for our autistic kids, knowing what to expect and how things might change goes a LONG way in helping them manage the stress of new situations. On the flip side, not being careful about this can lead to trouble. 

The two biggest meltdowns Stow had on the trip both happened when I wasn't precise with my language. For the first one, I described the Corn Palace in Mitchell, SD as "being made from corn" when really I should have said, "The MURALS ON THE WALLS are made of corn." Since Stow is a kid who deals with change by becoming more rigid, it can be difficult to get him out of the car. He's also very literal, so if you tell him "everything is made of corn," everything better be made of corn! He spent the entire 30 minutes we were at the Corn Palace pointing out all of the things that are NOT made of corn: "Look, Mom, the steps aren't made of corn. The door isn't made of corn. Those tables aren't made of corn. The walls aren't made of corn. NOTHING here is made of corn....." The second time was at Devil's Tower where I made the mistake of saying we would go on a "short hike." My idea of a short hike (1.2 miles around the base of Devil's Tower) was different from Stow's idea of a short hike (from the car to the bathroom and back), so he spent the entirety of our time there becoming increasingly upset that we weren't turning back. Eventually, he stopped walking altogether, and the five of us stood immobile off to the side of the trail for a solid 15-20 minutes while I tried to persuade a very agitated Stow to keep going. By the time we got him settled down enough to start walking again, Sky was triggered, so I spent another 20 minutes sitting on a bench with him as he alternated between crying and being angry with me for not being more careful with my words. So, yeah, be specific.

Rocky Mountain National Park

4. Use boxes. We had three boxes: a cooler, a collapsible box of snacks, and a huge tote for our clothes bags. On top of that, each kid was allowed one backpack or box for the car. Getting in and out of hotel rooms/our cabin was a breeze. Two kids carried the big box, one carried the cooler, and Ren or I grabbed the snacks. In the hotel rooms, our huge tote fit nicely on the luggage rack while the cooler fit under it. This made the nights where five of us shared the same room much more bearable. Further, since we put our bags into the big box every time we left a hotel, it was easy to spot whether or not something was missing. 


5. Finally, if you are married to Ren, pray that a rock won't hit your windshield leaving a starburst-shaped crack on the very first day of the trip. Because, even though you know this kind of thing happens all the time (and you even think the starburst is kind of lovely), Ren will simply not get over it, which shouldn't surprise you given how hard he takes it whenever you have to drive down a gravel road in a newly-washed (or even slightly dirty) vehicle. Bless his heart, though, the man drove nearly 3000 miles with an unforgiving spine, and his ONLY complaint during the trip was that stupid crack in the windshield!

Elk in Rocky Mountain National Park


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!!

Saturday, February 27, 2021

I'm Pretty Sure Our Cat is Broken

The longer he lives with us, the more convinced I am that Taro doesn't know how to cat. Exhibit A:

Almost a perfect square.

This perfectly cleared square results from the assiduous work of one gray cat. He will NOT take care of his business unless he can place it on a perfectly clear, seemingly measured square space. We all know when Taro is about to use the litter box because it takes time and persistence for him to create his ideal conditions. We also know exactly how his digestive track is working because once he deposits his goods there, he leaves them completely uncovered for the world to see. I'm pretty sure our cat is broken.

Taro's favorite bath mat.

Taro sometimes confuses various geometrical objects for his litter box, too, which is surprising given how careful he is with the perfect square he clears. So far, he has used cushions, bathmats, and even bean bag chairs. There was also the unfortunate incident with the pea pod--do you know how hard it is to convince our kids to self-soothe in there now that they know what Taro did?! And, whatever you do, DO NOT leave an empty box lying around. Sure, there are all of those funny memes and videos of cats squeezing themselves cutely into boxes. That's not what Taro does when he sees one. And, I can't decide if it's good or bad that he only does these things intermittently. Either way, he just does it often enough that he's convinced us we don't really need bean bag chairs anymore. Seriously, he seems to be broken.

The pea pod always gets stored on its side now.

Do you want to play with Taro? Sure. Go ahead! It will be all fun and games until he forgets that you are not a mouse and scratches and bites you. But, if you actually want him to catch a mouse? Then, he will just sit and stare at it, and you will have to rely on the slowed reflexes of your spouse who can barely bend over thanks to all of the back surgeries. Seriously, the cat is broken. Look at his lightning fast reflexes:


My favorite part about our broken cat is his absolute obsession with Nerf bullets. Most of our Nerf bullets look like this. 


And, he's a huge fan of decapitating them.

He likes to chase and then chew up the little yellow balls used in the Rival guns, too.

We keep the Nerf bullets put away, but he has figured out where they're hidden and will boldly walk into Sky's room (even if Sky's in there studying), slip into the closet, and dig through the 30-gallon box of Nerf stuff until he finds what he needs. He still can't catch a mouse, though.

All I can say is that it's a good thing this cat is cute.

Photo edit by Stow



Wednesday, February 17, 2021

Ashes to Ashes

From kindergarten through second grade, Sky went to Catholic school (it's a long story as to how he ended up there, but if you dig back through the blog archives, you can find it). Catholic school presented endless opportunities for Sky to amuse me with his interpretation of concepts like the Holy Spirit and transubstantiation (Sky: "Today I told my teacher, 'Don't worry, when I'm not listening to you, I'm listening to the Holy Spirit.'") But, one of the trippiest interpretations he had was that the ash he received on Ash Wednesday caused his cheek to swell. He believed this for a very long time.

 I wasn't at the Ash Wednesday service on this day eleven years ago, but apparently within minutes of Sky having the cross of ash smudged on his forehead, his cheek began to swell painfully. By the time I got there (following a frantic call from the school secretary), his face looked like he had shoved a golf ball into the back part of his cheek, and he was wailing in pain. It's hard to think when the school dumps your screaming and writhing kid in your lap right in the middle of your work day, but I managed to pull myself together and call his pediatrician to let her know we were on the way to her office. There they administered some ibuprofen and sent us to an ENT who sent us to the hospital because by then Sky had a fever. At the hospital, he had his blood drawn and got put on a strong IV antibiotic.

Later we learned that he had what is called Juvenile Recurrent Parotitis (JRP), a fairly rare condition where the parotid gland gets clogged and causes swelling and sometimes infection. Even after we had a diagnosis, for the longest time Sky maintained that the swelling was a reaction to the ash. 

Because JRP usually ends when kids are nearing puberty, Sky hasn't had an episode in years. So, I had largely forgotten about JRP and that Sky used to think the ashes caused it. I had also largely forgotten that today is Ash Wednesday (you know, because the pandemic has stopped time and all). But, when Ren went to wake up Stow this morning, he yelled down to tell me that the whole left side of his face was swollen. Soon after, Stow came down crying, begging me to help because his face really, really hurt. 

Then I remembered, and I couldn't believe how similar his cheek looked to Sky's! 

February 17th eleven years ago was Ash Wednesday, and one of my kids got a swollen cheek. February 17th, 2021, today, is another Ash Wednesday. It is, in fact, the first February 17th Ash Wednesday since 2010 (eleven years ago), and there won't be another February 17th Ash Wednesday until 2083. I'm sure none of this means anything, and yet, today a different kid had his first bout with parotitis.

Ashes to ashes. Dust to dust.

I'd largely forgotten about the period in our life when Sky's cheek swelled once every month or so, and when he had to be seen regularly by a specialist, and when we had to be ready at any moment to switch to a soft, bland diet. But, as soon as Stow came down with his swollen, painful cheek, I immediately remembered what to do. Ibuprofen, soft food, trip to the doctor.

I'm supposed to be editing my book right now. In fact, all day every day, I should be editing my book. But, I can't help but be struck by the coincidence and reminded of the fact that everything that happens in life prepares us for other things that ultimately end up being inevitable. It stinks that Stow has to go through this and that we will likely have to add another specialist to our list of doctors, but somehow I still feel fortunate that life has taught us some things along the way.

Ashes to ashes. Dust to dust.


Saturday, January 30, 2021

Homework

According to my Fitbit, over the last few weeks I've gone from sleeping an average of 7 1/2 hours a night to sleeping about 6. A couple of nights, I got just over four hours of sleep. When I was in college, 4 hours was no big deal. When I had newborn babies, sleeping that little was par for the course. But now that I am pushing 50, 4 or 5 hours a night is excruciating.

I stopped sleeping because Sky stopped sleeping, and Sky stopped sleeping because the pandemic finally got to him. For months he has been saying that he can't understand why so much of life is going on as usual despite the fact there is a pandemic. What he means is that while his life hasn't been normal at all, his school work hasn't changed. Many of his outlets--hanging out with friends, going places as a family, playing tennis--have been cut off or greatly curtailed. Every time he goes to school, the kids are spaced so far apart that there is little opportunity for him to interact with the other people in his class or in the hallways. For the purposes of keeping the kids safe, this strategy has worked remarkably well. In a school of about 2000 students, they have had less than 100 cases of COVID, and none of those have been tied to in-school transmission. But, the teachers can't teach how they would normally teach, and the students can't interact in class the ways they would normally interact. 

So, after a long, weird day of school, he comes home with a ton of homework. Then the next day, when he is home for the day doing remote learning (so the other half of the students can be in the building), he usually gets MORE homework. And, for awhile, he managed to handle it. Two months in, though, he took a day off from doing his homework because it was his birthday. The break made him realize just how bad school was making him feel.  

Suddenly, he knew that he couldn't sustain the same level of discomfort on a regular basis, so it got harder and harder for him to get work done. During the next two months, we dealt with more and more perseveration about school and the pandemic. It was exhausting, but it turns out it wasn't nearly as exhausting as what came next, because finally one day, he came home from school and told us he just couldn't do it anymore.

As a parent and a hopeless overachiever, I had no idea what that meant or how to respond. I tried to be encouraging. I offered to sit with him in order to help stop his thinking spirals every time they started. I was hoping that eventually he would get back on track and be able to stop the perseverating thoughts himself. For several days, we spent hours and hours together in his room trying to get through even the easiest of assignments. But, it didn't get better. The perseveration got worse, and he started missing assignments. A couple of nights ago, he perseverated for over an hour about the amount of work he was being asked to do. The thought of even starting the work sent him into a tail spin, but so did the thought of not doing anything. Eventually, the spinning wore him out, and he fell asleep.

Even the fun stuff (ie robotics) isn't much fun anymore!

We are working with all the specialists and trying to get him through this. But, you know, I don't think he's wrong here. This IS a pandemic. We need to be treating it like one. We need to acknowledge that it is impacting many of our kids in ways we can't possibly understand right now.

The difference between parenting a neurotypical kid who is struggling and an autistic kid who is struggling is that you pretty much completely have to immerse yourself into the autistic kids’ world and way of thinking in order to get a handle on what’s happening. With Falcon, the problems and solutions are a lot easier to identify and work through. With Sky or Stow, it can feel like a total slog; it’s like being pulled into a quagmire and not really being sure you can find your way out. That said, Stow and Sky are barometers for the complexities and challenges of human experience in a way that never fails to surprise me. And, they are almost always right about what is wrong.

So, it strikes me that I need to start listening better. I've stopped trying to help Sky stay awake to work on his homework and have instead started encouraging him to do what feels right for him right now. On Monday, I will meet with his teachers, and I will talk to them about universal design and ways to assess learning that maybe aren't homework and test based. Most importantly, though, I am going to remind Sky every day that his grades don't matter nearly as much as his well-being. 


PS:

If you haven't seen this amazing video by a high schooler who was asked to express what the pandemic feels like, please take a look (LINK).

Saturday, January 23, 2021

Puzzles

I keep seeing posts by people about how their pandemic accomplishments have fallen well short of their expectations. First of all, I have a hard time imagining HAVING pandemic expectations beyond keeping the children fed and from killing one another. Anything more is icing.

That said, I HAVE spent some money over the course of the pandemic trying to keep them busy. We’ve replaced broken gaming devices (probably broken due to overuse), but we’ve also bought A LOT of puzzles, several board games, and so many sticks of butter and flour for baking I don’t even want to think about it.

Y’all know working on a good puzzle has been one of my coping strategies for awhile now, but it turns out that puzzles are helpful for the kids, too. Turns out we can all be hanging out in a room together working on a puzzle, and we don’t have to talk. And, not talking goes a long way in helping reduce the number of arguments. There has been at least one puzzle, and sometimes more than one puzzle, in progress for much of the last ten months. 

Currently in progress.

Feelings about puzzles fall into two broad categories at our house. There are those of us (me, Stow, and Sky) who like doing them and find them therapeutic. We’re also the ones who are able to make quick work of a puzzle. Then there are those of us (Ren and Falcon) who think puzzles are fine so long as they don’t have to help. Ren claims he just can’t see where things go when he’s trying to help on a puzzle, and he’s amazed when we put the pieces in like we’re conjuring magic. Falcon says they give her a headache. In her defense, she has recently developed migraines, so she’s probably right—poor kid!

Doing so many puzzles wouldn’t be a bad thing if any of us could agree to break a puzzle up and put it back in the box when we’re finished with it. Problem is that NO one wants to do that. Instead, the puzzles get glued. And, sometimes they get framed. I have no sense of interior design, but I’m pretty sure there’s a tipping point after which it’s just plain tacky to hang puzzles. Not only that, I have a feeling that tipping point is either one or zero puzzles.

We have WAY more than zero puzzles hanging in our house at this point. And we also have glued puzzles still waiting to be hung (I can no longer afford to buy frames for them). Worse, I can’t figure out how to keep enjoying doing puzzles without also being compelled to glue those as well.  Is there a name for this condition? Do you know an effective plan for treatment?

Lest you think I’m exaggerating, these are all of the puzzles we've done during the pandemic. 

First, Sky's room:


Second, Falcon's room:

Dog

Magic cats -- had all of its pieces before it fell off the wall

Dragons -- had all of its pieces until Falcon left it on her floor for days

More dragons

Finally, Stow's room:

WWII planes

Wooden tank puzzles

Exploding kittens

And these are the puzzles yet to find a place:

This wooden puzzle is pretty amazing.

One of MANY Pokemon puzzles

More Pokemon puzzles

If we didn't already have some puzzles hanging, I'd feel better, but we already had these even BEFORE the pandemic:

Our first wall puzzle.

National Parks

You remember THIS one. (If not, look at this link).

I think the takeaway is probably that we are all getting through this crazy time the best we can. And, also, if you want a puzzle, let me know!