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.

Not Kevin

For years Falcon has been campaigning for a third cat. Once Shiro (our golden retriever service dog) joined us, she doubled down, insisting that Shiro needed a friend. Momo, our 7-year-old calico, and Taro, our 5-year old gray-blue cat, want nothing to do with Shiro. Since Shiro seems to have zero ability to be cool or chill, she consistently succeeds at fully irritating the cats. The always reticent Taro won't even be in the same room when Shiro isn't crated, and Momo has dealt with Shiro's boundless joy by clearly asserting her dominance. Whenever Shiro tries to say hello with a nose boop, she gets a cat-paw thwap on the head in return. 

Shiro demonstrating her lack of chill.

Thwap

For almost as long as Falcon has wanted a cat, I've wanted a cat named Kevin. Momo, Taro, and Kevin just has such an amazing ring to it. Momo, Taro, Shiro, and Kevin. 

Timid Taro

Momo doesn't need you

Recently Falcon had to have some blood drawn. Since she has an extreme needle phobia, having blood drawn is no easy feat. Every time she has to do something that requires a needle to pierce her skin, she asks me if I will give her another cat. I always say no. But the last blood test was different. First, Falcon asked me to take her to get it; I make it a point not to force her to have things done to her body without her permission, so I'd been waiting to get this one done for a few months. How do I make sure she is as healthy as she can be without forcing her? It's a difficult line to walk, but she has always come around to blood draws and shots on her own eventually (though sometimes with a lot of strong encouragement from me). This time, there was no cajoling. 

Second, even though the draw happened at a place where Falcon had one of her worst blood-draw experiences ever (they restrained her in something that looked a lot like a straightjacket), she walked into that lab like a champ. And, even though the phlebotomist decided that the best conversation topic to distract her was FOOD ALLERGIES and how sorry she felt for kids who have food allergies and especially for kids with PEANUT allergies,*** Falcon kept her cool. When the phlebotomist got a "bad" vein and had to try again on the other arm, though, the traumatizing allergy conversation started to get to Falcon. By the time the blood was drawn, she was positively pale, blue almost. Immediately, her body reacted to the stress by making her throw up. 

As the mom of a kid who struggles with this particular phobia, I couldn't imagine a worse scenario. How would I EVER convince Falcon to have blood drawn again? Of course, I left that experience praying she wouldn't need blood drawn for a long, long time. The universe didn't comply, though. It turns out Falcon is going to need more blood tests and probably fairly regularly. Not long before I had to give her that news, I decided it was time to get Kevin.

The hiccup, of course, is that I had to convince Ren that this was a good idea. He understood my motivation but also wondered why we needed another cat. He's sure he is the one who spends the most time caring for them (he's not). It took about three days for him to come around, and as soon as he gave the slightest indication that he would support the idea, Falcon and I were in the car on our way to the Humane Society. 

That's how cats come into our lives. 

We had a particular cat in mind when we got there, but the place was packed and the lines long, so we were sure she'd be gone. Both of us had a hard time being patient as we waited. When we finally got to the front of the line, we were thrilled to learn the cat was still there and that there was still enough time before they closed for us to see if she was the one for us.

She was.

But, apparently she isn't a Kevin. I mean, I campaigned HARD, but sometimes no one else in my family gets my sense of humor. Birdie was a close second choice for me, but that also got shot down. So, meet Bunny Pearl. She's named after the shiba-inu we had when we lived in Japan.

Bunny P

She seems right at home in MY CHAIR

Considering the fact that we were a pet-less family for more than 10 years, I find it pretty funny that we have so many animals living with us now. Just imagine how much vacuuming Ren has to do!

***For those who haven't been long-time readers: Falcon has many serious food allergies, including to peanuts.  Link and link.

Autism in Girls

In what might surprise no one, Falcon received an autism diagnosis a couple of weeks ago. Her diagnosis at 15 lags 9 years behind her brothers' who both got diagnosed when they were 6. Unwittingly, Ren and I became two of the many, many people who think autism in girls looks similar to autism in boys.

It doesn't.

Remember how I told you Falcon had designed about 50 characters for a novel she imagined in her head?  THAT is something autistic girls do. Autistic girls often have rich fantasy worlds. They also tend to be extremely creative.

Dragons flying around a floating castle

They tend to be voracious readers. --> Falcon read about 10 million words when she was in sixth grade. TEN MILLION! (Don't worry, I didn't count them, the reading tracking program they have to use at school did).

And a have deep love of/connection to animals. --> Our cats follow Falcon around the house like she's the Pied Piper. When she sees an animal, she connects with it deeply. If I take her to the pet store, she will fall in love with a creature there--whether it's a bird, a cat, or a chinchilla--and I have to account for the emotional distress that will follow when deciding whether or not to stop at the pet store. For a long time she told people that Frankie, my friend's Yorkshire terrier, was her best friend. She regularly lists animals among her closest friends even today.

Guess who's sitting in the chair

Shiro loves her, too

There's also:

Difficulty making and keeping friends. --> Yeah. Sigh.

Increasing difficulties with social situations as they age. --> I can't even tell you how many times she has called or texted because she is hiding (in a corner, in a closet, outside in the dark, under a table, in a guest bedroom, etc) at a party because she is totally overwhelmed.

Extreme emotional reactions to things. --> Yep.

Severe anxiety. --> Check ✔

Inability or lack of desire to understand and/or socialize with other girls. --> Uh huh.

And, oh yeah, sensory issues.--> This is the one thing I did notice! We've known about her sensitivity to sound and bright lights for years. And now I'm realizing all of her food likes and dislikes are probably sensory-related as well.

I could go on, but I suppose you get the point. There were All. Sorts. Of. Signs. And, we missed them. We. Missed. Them. Even though I KNEW autistic girls present differently than boys, even though I was looking out for it given that both of her brothers are autistic. 

Like many girls and women, she got other diagnoses, instead. First, she was diagnosed with General Anxiety Disorder, and then she was diagnosed with ADHD. Sure, these diagnoses helped us start to piece things together, but based on all the reading I've been doing since the autism diagnosis, they aren't necessarily the right diagnoses. In other words, they don't get at the underlying issue. And, I call it an issue because unnamed, autism can make things extremely difficult.

Why do we misunderstand autism in girls so much? I'm still learning, but here's my list of top four reasons based on what I've read so far:

1. First and foremost -- The diagnostic criteria has all been based on boys, and it has been assumed that autism in boys and girls manifests the same way. I doubt I need to point out that there are a lot of ways that girls and boys differ; why wouldn't the same hold true in terms of autism? Diagnostic criteria taking into account the ways that boys and girls are different has only started to be used in the last 5-10 years.

2. Society tends to think of autism as a something that usually affects boys. This is primarily because so few studies have been done about girls and autism. Getting a firm grasp on what the ratio of autism in boys vs girls proves challenging. I've seen anywhere from 2:1 to 15:1. If people don't expect to see autism in girls, they are more likely to misattribute certain behaviors to something else.

3. Girls are much better at masking their struggles. They have what this article calls a "quieter presentation" of autism than their male counterparts. They tend to have better social skills and to be better at and more interested in mimicking their peers. They also exhibit fewer restricted and repetitive behaviors than boys (link).

4. We expect different things from girls than we do boys. Despite all of my efforts to raise my boys and girl similarly, I quickly learned that from a very young age society wants different things from girls. Implicitly and explicitly girls are expected to conform in ways boys aren't until much later. I believe this means that even autistic girls learn to suppress behavior that may be considered inappropriate. Further, behavior that we often consider more "girly" can often cause indications of autism to fly under the radar. Does your daughter talk nonstop? Oh, that's because girls are more verbal. Is she completely obsessed with K-Pop?  Aren't all girls? She draws constantly and can't seem to stop when you call her? That's totally normal. She cries at the drop of a hat? Well, you know girls are super emotional. The list goes on and on.

I asked doctors over the years if we should have Falcon screened for autism. Every time, the answer was no. I could have pushed--I mean, I pushed hard to make sure the boys got screened--but I didn't. Do you want to know how we finally got the diagnosis? Falcon insisted. First, she did online screenings. I admit, when I saw results that indicated autism, I questioned whether she answered honestly. Still, she insisted, and the more she insisted, the more I began to think that maybe she was right.

Any of you who have gone through the process of getting a diagnosis know how hard it can be to get an appointment, much less a screening. It can take years. So I decided to start with the doctor who diagnosed her ADHD and anxiety. I told him by email she wanted to be evaluated. He said he didn't think she is autistic and that we didn't need to go out of our way to come in. So, I waited until her follow-up appointment for the other diagnoses (which was about 4 weeks after the first email). 

At the appointment, after we had talked about all the other stuff, I told the doctor she wanted an evaluation. He asked her why. She said, "Because it will help me to know." He asked if a diagnosis would change anything, and she told him it would. For her. Then he said to me, "Mom, what do you think? You know quite a bit about autism. Do you think she's right?" I told him I wasn't sure, but that maybe she was. So he asked us to list the reasons why we thought she might be autistic. And the more we told him, the wider his eyes got. When we were done (and we realized later we didn't even list everything), he said, "You know, Falcon, I think you're right!" and then added it to her medical record. 

It was anti-climatic; it wasn't the full work-up we did for both of the boys. But, I got Stow's diagnosis way before we managed to do the full evaluation, and getting the longer evaluation didn't change what was already there. That's how I feel about Falcon's diagnosis. Because as soon as she got it, so many things made sense in a way they hadn't before. Suddenly I couldn't understand how I didn't see it.

Over the years, I have learned there are so many different levels of mom guilt. I'm not sure what to call the level of mom guilt where you are going all out to support your autistic sons while completely overlooking your autistic daughter. I know that's an oversimplification. I know I have done many things to help her manage her allergies, her asthma, her anxiety, and her ADHD. But, I missed this, and this is a big one. We are in uncharted territory here--not only are we learning what this new diagnosis means for Falcon, but we are also learning how to manage the feelings of frustration, disappointment, and anger on Falcon's side and the massive guilt and feelings of failure on mine. 

What My Kids are Creating These Days, Part 2

 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. 

Next, Falcon.

While Stow's favorite medium is video, Falcon loves making digital art. One day a year or so ago, Falcon asked if she could use my iPad to draw some pictures. Almost immediately, her illustration production exploded. I had no idea you could even DO the things she's figured out how to do on my iPad!

Such cool colors!

Falcon shared some pics for me to show you. These are some she's created recently. She has many, many more including a group of about 50 pictures of characters for a novel she's been imagining. Her interests tend along the fantasy line, but she also likes to draw everyday people and animals. I will post the ones she asked me to share below. You can see more of her art on her Redbubble page (link).

Self portrait

Momo

Dragons:

People:

It's crazy to me how creative and artistically talented my kids are. This definitely has to be from Ren's side of the family. The only work of art of mine that ever got any recognition was a jump roper I made out of wire in the sixth grade. If you like Falcon's stuff, go to her webpage nd/or comment below. I'm sure she'd love the encouragement!

Links:

Falcon's Redbubble page

Go back to part 1

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.

Twelve Years Later...

Do you all remember when I started this blog back in 2011? We had recently learned that Sky was autistic, and I hoped this would be a place where I could find an understanding community. I was desperate to for information and to meet other families who were going through similar things. For so long, I blogged frequently and posts got thousands of hits. But in the last few years, my readership has dwindled as I have posted so much less. 

That's ok, though, because I've figured out some things that are way more important than post views, and those are the things that guide how and what and how much I write now. 

The three BIG ones are these:

1. My kids don't have autism, they are autistic. Autism makes their brains work differently at a fundamental level and impacts the way they experience everything. Autism is not something they have, it is part of who they are. You can have asthma. You can have allergies, but these aren't innate. You can't have autism in the same way you can't have shortness. Identity-first language matters. 

2. I am not an autism mom. There is no such thing. My kids are autistic, but that doesn't define everything about them. And, it certainly shouldn't define me especially since it is not one of MY identities. Looking back, I realize how many times I made the struggles they were going through about me. Sure this instinct may have come from a good place--I want to support them in all possible ways--but my role is supporting actress, not lead. 

3. These are not my stories, they are theirs. My goal is to amplify the voices of people who need to be heard. Sometimes, I think that will still mean that I talk about how I am processing things because I think there can be a place for that, but more often than not, I will focus on sharing their stories.

My kids know I write this blog to help me process and to share our experiences. They have read it and are and have been supportive of this endeavor. Along the way, they have also been very proud to tell their stories. I hope to keep doing that. Just know that often the silences are about the stories I can't tell, either because I don't have words for them or because they have asked me not to tell them.

Ikiro

A couple of days after Dad died, I found a place in my small hometown that had decent reviews and got a tattoo.

Getting a tattoo is something I never imagined I would do; for years I told myself that I didn't want one because I didn't want to be an 80-year old woman with a blob of colors distorted by my wrinkly skin. But since I suffer from pretty intractable depression, I started thinking that having a daily reminder not to succumb to the lies my brain can tell me might not be a bad idea. 

生きろ -- Ikiro is the command form of the verb live. 

No matter what, 生きろ.

 
Every time I mentioned I was thinking about getting a tattoo, Ren firmly vetoed the idea. In Japan tattoos have traditionally been seen only on criminals or members of the mafia. As a result, tattoos are banned at most onsen hot springs, swimming pools, water parks, and beaches; Ren's resistance made sense. For awhile, I tried using henna to write ikiro on my wrist, but it was hard to be consistent. Plus, my handwriting stinks!  

So two days before Dad's funeral, Mom and I went to the tattoo parlor, and she watched as I got my first tattoo. The plan was to get a very small one that could be easily concealed by my watch when I'm in Japan. The guy botched it though, which I guess shouldn't have been a surprise since I AM from rural southern Indiana. 

Instead of a nice tattoo, I ended up with a mess. My life affirming message became three ugly scars.

 

The first tattoo

Every day I stared at it and obsessed about how horrible the letters looked. When I showed it to a local artist recommended to me by a friend, he was amazed at how much damage someone could do with such a simple design. He told me the only fix was to cover it with another tattoo. Obviously, this is not what someone who wanted a discreet tattoo likes to hear! 

I tried living with it, but my efforts to ignore the misshapen characters and the bumpy illegible handwriting failed. 

Then Falcon came up with a solution. She created a simple design that would at once cover the old tattoo while also amplifying the meaning behind it. The black spots on the koi conceal the scars. The dot in the semicolon is from the original tattoo. 

 

Falcon's design

I never thought I would get one tattoo, and now I’ve gotten TWO! The second one is much more noticeable than I intended when Mom and I went together to the tattoo parlor during those difficult early days. But I’m choosing to look at the bright side. The first tattoo I got in my hometown with my mom. The second one is designed by my kid. The process has been an imperfect journey, but I can't think of a better metaphor for my life!!

 

PS: According to Ren, if our kids want tattoos, it’s my fault, but I’ve told them they have to wait until they’re thirty since none of us know what we’re doing until at least then!

PPS: At this point in our marriage and parenting neither of us are naive enough to think we can control another human.

PPPS: Don’t worry. I bought a wider watch band.

Girls’ Trip

In the early days after my dad passed following a decline that was at once painfully slow but also way too fast, I told my mom I wanted to do a girls’ trip back to her hometown. Dad had promised to take her there one more time before they died, but he wasn’t able to keep up his end of the bargain. There were so many things he still planned to do. Even as his condition worsened and he became bedridden he talked about wanting to take us on a dinner river cruise. It wasn’t until his final days that he suggested he might have to stay home when we went.

It’s weird how suddenly the last visit to a place ends up being your last visit. There is no warning, no voice in your head telling you to enjoy every minute because they will be the last ones you have. My parents’ last trip together to our house happened in May of 2019. I’m sure their last trip to my mom’s hometown happened earlier than that. 

When I was a kid, we spent two weeks each summer in Jacksonville, Florida. That’s where Mom grew up and where my grandparents lived. My family of six loaded up the luggage and piled into the wood-paneled station wagon, my sister and I lying between the suitcases in the back, and made the 14-hour drive from Indiana. When we stopped for boiled peanuts in Georgia, we knew we were getting closer, and when we crossed the Swanee River, we knew we were practically there. Not once did we cross it without singing the song. 

Our first stop, once we got to Jacksonville was always my grandparents’ small orange-brick house nestled among the mansions not far from the St. John’s River. That stop was always the best but also the hardest because we were so close to our destination but not quite there —for me and my siblings the goal was Jacksonville Beach. 

My memories of those visits were of walks along the St. John’s River, of trips to local seafood restaurants where I always ordered a friend shrimp basket (Mmmm hush puppies!), and of hours and hours playing on the beach. 

Driving with Falcon from our home six hours north to pick up Mom at my parents’ home in Indiana and then continuing down to Florida, I realized I had so many other memories. A lot of them are of my dad knowing the way. 

Traveling all of those miles with four kids in a station wagon had to have been stressful, but I don’t remember that. I remember buying different flavors of Fanta. I remember staying in connected hotel rooms in Atlanta. I remember Chattanooga and Castle Rock. I remember the smell of the ocean as we crossed the bridge over the intercostal waterway. 

Our trip to Florida this week was constantly directed by the gps on my phone. I got us all the way there and back without incident. We saw my grandparents’ old neighborhood and got to the beach, and we never got lost. But I can’t say I ever really knew the way. Dad did, though, and our girls’ trip to Florida this week made more aware of having lost him than ever before. 

Jacksonville Beach, June 2023

Sunrise, June 2023

Fried shrimp basket tastes as good as I remember 

Mom and I on the beach when I was 3

Fishing on the St. John’s River with Grandpa when I was 3

Dad and I on our way to Florida

An Ode to Sky on His Graduation

Sky started his school career by being kicked out of two different preschools because of his behavior. He could tell you what page of which book mentioned the thing you were talking about, but he didn’t understand it wasn’t ok to crash into other kids, run around his chair, or touch everything and everyone between his chair and the teacher’s desk. 

Once we had a diagnosis, we realized his sensory and auditory processing “disorders” meant that he experienced the world in a vastly different way than we did. That’s when we started along the path of helping him develop the tools he would need to be successful in a world that isn’t suited to him.  He spent hours in therapy learning how to interpret people’s words and facial expressions. We made social stories—so many social stories. 

It was amazing to see him start to thrive once people learned to speak his language. As he cracked the code of how the neurotypical world worked, he started to take off! By sixth grade, he was excelling academically and no longer needed an IEP. He also had a solid friend group (that he’s kept to this day.)

Then Covid happened. His sophomore year was an every other day schedule with him learning remotely one day and in the classroom the next. The teachers were figuring things out as they went along, and suddenly nothing was as clear as it used to be, making it impossible for him to understand how to apply all of the social and classroom rules he had worked so hard to memorize. 

He fought to continue doing what he’d been doing, but the wheels came off after the start of second semester. He began to struggle in classes and had to medically withdraw from some of them. It got to the point where he couldn’t go to school any more. He stopped talking to friends and couldn’t enjoy any of the things that used to make him so happy. There were many days during those long, horrible months where he wasn’t sure he would be able to finish high school. It was a tremendous blow for someone who had worked so hard for so long just to make school work for him. 

Ren and I struggled to help him and feared he wouldn’t find his way out. But he didn’t give up. Junior year was still really difficult. He couldn’t juggle as many activities as before. He had to be more careful to prevent himself from being overwhelmed. I had to learn not to push him (that one took me a long time to figure out). He found a combo of classes and activities that worked for him and slowly began to excel in his classes again. By senior year, he had regained his rhythm. 

Last month, he graduated Summa Cum Laude, and in the fall he heads to college with academic and art scholarships. But what makes us proudest is how he never quits. He is 100% Sky, and I’m so glad I’ve been able to go on this journey with him. 

When I started this blog more than ten years ago, I did it because I wasn’t at all sure how to be a good mom for Sky. It all felt so overwhelming, and the only thing I knew how to do was put one foot in front of the other and try to address issues as they arose. Along the way, I slowly (painfully slowly) learned how to get out of the way and let him show me what he needs. 

If you have time, I encourage you to go back to the beginning of the blog and look at how much this kid has changed. We’ve both have!