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.

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?

The Fallout

So where does the story go next? I suppose it goes the only way it can.

Stow missed two full days of school followed by two days at school without going to any classes and then two more days when he went to half of his classes but didn't quite make it to the end of the day. 

After an unbelievably slow start, the district finally figured out how they should respond to the incident. It took nearly 48 hours before I heard from anyone at the school (the principal) and another day and a half for the superintendent to reach out with a plan for Stow's safe return. In the interim, we only got bits and pieces of information from friends. If the admin was addressing the issue and making plans behind closed doors, they forgot to tell us, which meant that even if Stow felt ok, we couldn't have sent him back to school. On the bright side, thanks to this situation, the district now has clearer policies on how to communicate with families who have experienced something like we did as well as on how to manage incidents at non-school, school-adjacent events.

I can’t say much about how the discipline aspect of this issue was dealt with, but I can tell you that the district has been quick to schedule convocations about bullying in a number of the schools. They also seem to be listening when I tell them that none of this would have happened had there been better support for Stow during the school day. Our ideas about what that support should look like differ, but at least the conversation is happening. 

And, Stow? As with so many other things, it is hard to tell where he is with all of this. He doesn't sleep as well as he did before the concussion, and he doesn't feel like doing anything that requires concentration or a focus on details. His anxiety level is high, but that seems to have less to do with a fear of being hit again and more to do with not feeling well and having his routine disrupted. Our next step is an IEP meeting during which we will try to figure out how to mitigate potential negative impacts on his academic and social progress.

Shiro finally found a cat who will be patient with her

A cat in the box

*****

Coda: Bunny Pearl

During all of this, we have also been adjusting to a new cat. 

We got Bunny Pearl because Falcon was staring down a really scary health diagnosis. She hates anything to do with needles, so any time she gets a shot or a blood draw, it can be a major ordeal. And every time, she asks me to get her another cat. Historically, my answer has always been no. Given what the doctor was saying, though, it looked like she would have many more encounters with needles as we figured out what was going on with her. So, I told Ren we should get another cat. Always practical, he thought we should wait. But once I decided to get a third cat, I couldn't let go of the idea. When Falcon sent the Humane Society link with Bunny Pearl's picture to me, I convinced Ren we'd waited long enough. 

And, the rest is history--well, except for the part where the scary blood test results turned out to be much less frightening because they aren't as accurate in kids. On the Wednesday that we took Stow back to school for the first time, we also took Falcon to the pediatric specialty clinic an hour away. Not knowing how Stow would do at school or what the doctor would tell us at Falcon's appointment made for an especially tense day. In the end, though, everything turned out pretty ok.

Bunny Pearl has been here through it all, insisting I pick her up, sit with her for a while, and chill the heck out. Turns out we DID need a new cat but not for the reasons I imagined.

To commemorate the past week, I'm thinking of getting a shirt made that says: "I went to hell and back and all I got was a crazy kitten and this lousy t-shirt."

This is my third post about Stow's concussion.

Part 1 of this story is here.

Part 2 of this story is here.

Concussed

Here is what I posted to FB yesterday:

This is the text he sent to me after working the concession stand at the school dance Friday night; the text in which he excitedly asked me if he could volunteer to work at the Halloween party Saturday. He was so proud and happy, and I’m completely stuck on how something so good ended up so bad.

 
Stow went back to school Wednesday, and even though he still gets headaches and easily loses focus, he persevered (with lots of supports and breaks) until the end of the day. His resilience amazes me.

 
Though I can’t go into detail about what or how, we are making our way forward and doing everything we can to ensure that he is safe and that he is heard. I’m extremely grateful for all of the encouragement and kind words we received from everyone; they have made this all bearable.

 
So much of my advocacy for the kids is aimed at making sure their neurodiversity doesn’t put them at risk of being mistreated. Stow engages with others in ways that make sense to him, and I firmly believe it’s my job as a parent to help make the world he lives in less ablest, to move the needle toward making neurodivergence the norm.

 
Still, all of that advocacy, and I couldn’t keep him safe.

 
I might be stuck on this for awhile.

*****

These days, I'm up at night worried about how and when he will recover from the head trauma and what things will look like for him once he gets back to a more normal schedule. Any change is ALWAYS hard for him, and this time of year has traditionally been when he starts to struggle. Something about moving into the fall and holiday season. How long will it take for him to get back into the groove he was in? Will he get there at all?

But I am also having trouble letting go of the idea that if I had just advocated harder regarding the deteriorating relationship between Stow and his classmate, this might not have happened at all. Overall, I think the team Stow has at school works hard to help him. But I also think there are just some things that they can't see or don't get. None of us figured out that Stow was perseverating for a very specific reason. I didn't figure it out because I failed to ask the name of the student he was having trouble with, and the team at school didn't figure it out because they didn't know of the history between the two students. We both had important pieces of information that, if combined, would have led to a very different approach to intervention. Maybe even if we HAD intervened more effectively the same thing would have happened, but I can't help but think that it wouldn't have. 

Concussion

This is what I posted to FB on Sunday:

Recently, Stow joined student council and has been very excited to help with events. He’s proud of being a good and thoughtful worker. After volunteering for one event on Friday, he eagerly asked if he could work at another event last night.

 
While he was working, another kid came and hit him hard on the head with a heavy bag full of candy. At first he thought it was an accident, but then the girl left, came back, and hit him again. The THIRD time she came back and hit him, he got dizzy and felt like he was going to pass out. He told an adult what happened and then called me panicked, saying he didn’t understand what he did wrong.

 
The PTO parents handled the situation very well. They communicated what happened to me and also tracked down the child who did this (even though he didn’t know who it was because she was in costume). They called her mom and the parents of the girl who put her up to it and made sure that the girls understood their behavior was unacceptable and that it would be reported to the school. The one who hit Stow was someone he thought of as a friend; the other one has been mean to him and has tattled on him when he has perseverated about how she treats him. Apparently the one who hit Stow 1) didn’t realize it wasn’t funny to him, and 2) didn’t realize the other girl dislikes him and was setting her up.

 
The upshot, though, is that he left what should have been a fun and confidence-building experience injured and had to spend hours in the ER last night. He has a level 2 concussion and can’t do anything today. His head still hurts and lights and noise make it worse. All he can do is stay in bed in his darkened room. He’s missing the youth group trip to the corn maze and won’t be able to game with his friends or do any physical activity for at least several days.

I used the brush tool to cover Ren's face per his request. Sorry it's a bit creepy looking!

 

And, he still doesn’t get why someone would be mean to him when he did nothing to provoke it and also didn’t react when he was hit.

I spend hours working with the school to advocate for Stow and to make sure that he is being supported. He spends hours with therapists and the school social workers trying to better understand how to interact with his neurotypical peers because he wants to be friends with them. He puts in so much work, but still this kind of crap happens. Kids who are different are disliked and even targeted for things that are part of their disability.

 
Please teach your kids to be kind to the weird kid and to stand up for them when someone is being mean or trying to trick them into getting in trouble. All the work we do as a family to support our kids isn’t enough. Teachers and counselors can’t control how other kids treat my kid, and some days it completely breaks my heart.

*****

So, it has been a hard week. I'm still working through it, both personally and as his parent and advocate. For now, I just wanted to share this. He's back at school, finally, but he isn't able to manage going to class or the cafeteria or anywhere but a quiet room, where he sits alone, and I am angry that the thoughtless actions of others had done this to him.

What My Kids are Creating These Days, Part 1

It's been awhile since I posted art by the kids, but have no fear! They have been making all sorts of stuff, and they wanted me to share it with you. 

First, Stow.

While Stow likes to draw, he LOVES making videos of his Lego. Like many boys his age, he wants to be a YouTuber when he grows up. We've had plenty of conversations about the viability of that plan, and now that he has a YouTube channel, he certainly understands the vagaries of viewership numbers. But, that's not the point. At least not for me. When Stow makes a video or a post, he focuses on what his viewers might want. He teams up with other YouTubers, so they can promote each other. Not only does his channel force him to think through how to reach more people, it also makes him more social.

A portion of his clone troopers

Clone trooper video

His channel includes build videos, surveys of his viewers, posts from other YouTubers, photos, and more. My favorite part is his MOCs (My Own Creation). He can spend hours reconstructing scenes from various films or TV programs. His obsession with Star Wars clone troopers remains the basis for most of what he makes, and his MOCs reflect that. At the beginning, he did stop motion videos of clone trooper builds, but it didn't take him long to shift to making MOC scenes for the clone troopers. Making a MOC takes a lot of creativity and time, and it encourages him to go back to Lego pieces he hasn't used in years.

MOC before filming

Mini MOC video

So, I don't know. I've never been a fan of YouTube. Sometimes I think it kidnaps my kids entirely, and I really don't like its algorithm. But, this whole YouTube channel thing has been pretty great for Stow.  I linked to it above, but here it is again in case you want to take a look. If you do, please consider subscribing or liking his videos. It really means a lot to him!

Part 2 is here.

Stow's YouTube channel is here in case you missed the links above.

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.

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

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!

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

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). 

Waiting for Shiro

While I haven't talked about this as much on my blog as I used to, we continue to live with autism (surprise!). Some days that means amazing things, and some days, frankly, are very difficult. (Insert long parenthetical about how admitting some days are difficult does NOT mean I don't love my kids. As far as I am concerned, they hang the moon and NOTHING can compare to their awesomeness. That said, with autism comes a host of real challenges like anxiety, struggles in school, aggressive meltdowns, the inability to manage social situations, depression, and a whole bunch of other things. THOSE are the things that make living with autism difficult.) Struggles with language and social skills means that kids with autism constantly work very hard just to get through the day. I am not autistic, so I don't know what it is like, but I imagine it must be like living in a world with rules that don't make any sense and with people doing unexpected things and making demands that seem completely arbitrary. I also think it must be completely overwhelming for the senses. I don't know about you, but I'm pretty sure I couldn't handle that nearly as well as my kids do.

When Sky was younger, the interventions we did with OT and speech therapy seemed to help. With Stow, similar interventions have not yielded the same result. The two boys are clearly wired very differently. So, we have tried a host of different things with Stow with limited success. If you are a special needs parent, you often find yourself seeking to solve problems even when you don't know all of the variables. That has been especially true with our experience with Stow, and we are always looking for clues. 

Often the clues come from the most unlikely places. Our most recent clue came in the form of new neighbors and the sweetest dog on the planet (the neighbors are pretty great, too). The dog is a miniature bernedoodle called Winnie. She's still a pup but very well-behaved and a huge fan of our kids. The feeling seems to be mutual since every time Stow sees Winnie outside, he insists that we go say "hello" (sorry, new neighbors!). For the first month they lived here, Stow watched for Winnie like a hawk. Given that I'm a bit shy, it was awkward to constantly appear whenever the new family was outside (seriously, I'm so sorry!). One day, after a particularly hard morning, we got outside to wait for Stow's bus just as Winnie came out to do whatever it is that Winnie does in the morning. Stow, who until that point had been saying that he would absolutely NOT be going to school, locked eyes with Winnie, and his demeanor immediately changed. Clearly, Winnie was connecting with Stow in a way that people often don't.

Later that day, I posted this picture of the two of them looking at each other. A friend who has a son with autism suggested we look into getting a service dog for Stow. I responded that I HAD looked into it, and my understanding of the situation was that either Stow wouldn't be a high priority for a dog or that we couldn't afford the cost of one (they cost between $35,000 and $50,000). But, then another friend replied telling me to reach out to her directly, and soon one thing led to another, and we found ourselves on the road to getting a service dog.

One of these pups will be Stow's service dog.

We're working with an organization called Dawgs2Heal that trains and places autism service dogs. We've been selected to receive one of their 2021 trainees and are in the process of raising $10,000 to help pay for the training. 

A few weeks later, and they are all fluffier!

We learned that we will have the chance to name Stow's service dog, and miraculously everyone agreed on a name. We will call her Shiro, which a fairly common dog name in Japan. We chose it because Shiro is Momotaro’s faithful companion (in the well-known folktale), helping him on his long journey to defeat the ogres. We hope and believe that Stow's new service dog will be an equally brave, faithful, and helpful companion. Also, we already have two cats, Momo and Taro, so how could we not have a Shiro?

Momo (R) and Taro (L) have NO idea what is about to happen to them. I felt guilty, so I got them their own castle. Lol.

Lastly, I wanted to share this note that Stow left for Santa. I've included a picture, but since he struggles some with spelling, I will type it out here: "Dear Santa, I know I was bad, but I will love you if you forgive me, and please leave a note. I hope you finish your travel. PS: Love you. You are amazing. I hope you give me good luck for the dog."

This letter is so heartbreaking and heartwarming at the same time. Kids with autism and ADHD struggle constantly with a fear of being in trouble for "bad" behavior. One of the most moving things about peoples' positive response to our service dog fundraiser is that it has shown Stow that there are a lot of people out there who don't think he's bad at all. I would love to give him the gift of knowing we are getting Shiro for Christmas. 

What Stow Wants You to Know about ASD

Seven years ago, I asked Sky to guest post on my blog so he could tell you what it is like to live with autism. He was nine years old. Stow is 9 years old now, and the post we shared then (link: What Sky Wants You to Know about ASD) could have been written by Stow now. The main difference between Sky and Stow is their preferred medium. Sky expressed himself most in art, but Stow is a video guy. He often walks around the house narrating his life and making videos for his imaginary YouTube audience. Where Sky wanted to become an artist at age 9, Stow wants to become a YouTube star. 

To be honest, I didn't notice the similarities until I came across the old guest post by Sky. But, looking at that post and comparing it to the video Stow made to show his class, it's a bit uncanny. The takeaway? Being autistic is hard and trying to "pass" as neurotypical at school takes A LOT of energy.  

Stow hopes you enjoy the video and that it teaches you something you didn't know about autism. As for me, I hate being filmed, but I'd do just about anything to help my kids feel like they have control over the stories they tell about themselves and their lives.