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. 

Ten Years in the Blink of an Eye; Just Kidding, It Felt Exactly Like Ten Years

Ten years ago today, we left Falcon with my parents, loaded Sky into the car, and headed to Riley Children's Hospital in Indianapolis for a day full of testing at the Riley Child Development Center. The appointment was long in coming. For years, we suspected there was something different about Sky. He struggled to engage positively with peers and was oblivious to all the ways that he upset kids and adults alike. He didn't seem to understand what we were saying to him, even though he had an advanced vocabulary, and often he would go from sitting and playing quite calmly to darting around the room or running in circles. It wasn't until he started kindergarten, when I could see just how socially advanced his peers were, that I understood our concerns weren't just in my head. And, when he came home from school one day and begged me to help him figure out why he was not like the other kids, I finally gathered the strength to push for an evaluation.

I still have the report from that day. It's 24 pages long, and the first paragraph ends with, "[His parents] would like a better understanding of the issues which have impacted his social interactions and recommendations to promote his academic, social, and emotional success." Reading through it now, I am amazed by how much is the same for Sky, but also by how much he has changed. Because I have it here in front of me, I want to quote my favorite part. "During interview, Sky reported that his best skills are seeing in the dark and building snowmen....With regard to emotions, he reported feeling happy when Santa Claus comes, never sad, and angry when someone jokes; he believes jokes are true and when they turn out not to be true, he thinks the other person is lying, and 'I hate liars.'" My favorite part is followed by one of my least favorite parts, "His three wishes were: 1) not to be bad anymore; 2) for the Polar Express for Christmas; and 3) not to have problems so Santa will come to town." Some kids wish for video games, a cell phone, or a big stuffed animal, but kids who struggle with autism or ADHD often just wish not to get into trouble.

If you've never received one of these reports, you probably can't imagine how simultaneously heartbreaking and relieving they are. On the one hand, to know that your child has a life-long disability is earth-shattering for a parent. When you get the diagnosis, you realize that the path you thought you were on is vanishing before your eyes, and you are suddenly thrust into a whole new wilderness. But, on the other hand, to finally understand why your child can't understand what you are saying; why he suddenly runs around the room and screams; why it has always taken two adults to parent him instead of one; why everything is so damn hard all the time? To finally have the answers to those questions is life-saving. Sky's autism diagnosis saved our marriage because we finally understood that his poor behavior and his inability to be kind to others wasn't some indictment on our union or on our ability to parent together. 

What happens next, after you get the diagnosis is almost as disorienting as the diagnosis itself. In our case, we received a detailed report of how autism impacts Sky, but we didn't also get a manual about what to do about it. Sure, there were suggestions and explanations of what some of these things meant, but there was not suddenly a case manager at my elbow to help me navigate a complex and generally user-unfriendly system to try to get him services. What you quickly learn is that many pediatricians have very little experience in dealing with autism, and the services you can get are disjointed and with incredibly long waitlists. After Stow was diagnosed three years ago, I kind of knew what I was doing, and I STILL couldn't consistently get him the services he needed. One time, in the SAME DAY, after I'd waited for months to hear from both places, I got a phone call from one place telling me that they thought his needs were too "severe" for them to help and then from a different place telling me that he was too "mild" to receive their services. Another time, after being on a waitlist for a year, I was told that he couldn't he treated there because his SECONDARY insurance didn't cover it. I pointed out that his primary insurance did, but apparently we were already disqualified. Anyway, you get the point.

Ten years ago today, when we walked out into the crisp December sunshine, after a long day of questionnaires and testing followed by a 45-minute comprehensive information dump by the person who was overseeing Sky's evaluation, the world felt the same but also entirely different. I called my parents because they were the only people I knew to call. Then I called my sister who had experience working with special needs kids. She mentioned 504s and IEPs, but she might as well have been speaking a foreign language. My sweet, precocious boy was the same one who walked into Riley that morning. The only thing that had changed was that I now had the monumental task of figuring out what the diagnosis (and all that came with it) meant. 

That night, The Temple Grandin Story happened to be on TV. Somehow Ren had heard about it and thought we should watch it. The timing couldn't have been better. Watching that movie, I understood Sky's sensory issues and distraction in ways I hadn't before. I also understood why he insisted on being squeezed. Most importantly, though, I realized for the first time that we were not alone, and that what we were seeing with Sky was not singularly ours to manage. 

That first night, and many nights after, I lay awake in bed wondering how I would ever figure out what Sky needed and how to get it. But, I also quickly realized that the only way forward was one step at a time. This is the greatest lesson being a parent to autistic kids has taught me; I don't always have to know how to help my kids. I just have to stick in there and keep trying. Eventually they will find their way.

I've written many blog posts, including ones 2 and 9 years after this first autism diagnosis. I suspect I have often thought I knew what I was talking about when I offered advice or insight on what it's like to parent or live with someone who has autism. The longer I am an autism parent, though, the more I am only sure of this: autism can be hard, but it's not impossible, and the best thing we can do as parents is to keep advocating for and supporting our kids. Each of my boys is vastly different. Each struggles due to their autism in very specific (and largely not overlapping) ways. We deal with the struggles as they come. Sometimes they waylay us for weeks or months or years. Other times, the simplest statement or adjustment in how we do or say something can do the trick. I suppose in that way, autism really is like a puzzle. 

So, I want to tell you that no matter what, you're doing great, Mama. You're doing amazing, my autistic friend. You're much appreciated, autism ally. And, to all of you occupational, speech, and behavioral therapists, thank you! Everyone, keep it up! Autism can be hard, but it doesn't have to stop us from a life filled with joy and adventure.

Happy Birthday, Falcon!

The fiercest girl I know is turning 13 this week. We used to call her Pink on this blog, but she has stretched well beyond the limits of such a diminutive name. I asked her what she wanted to be called instead, and she said, "Falcon, no, Dragon!" and then settled on Falcon, so that is what I shall call her.

One of Falcon's dragons.

When I found out Falcon was going to be a girl, I have to admit that I panicked a bit. What if she liked pink, and princesses, and ballet? What if she wanted to play with dolls and have tea parties? Boys I could understand, but girls? I wasn't so sure. 

In her earliest years, I did my best to limit her exposure to all the girly-fied clothes and toys, but she still came home from daycare wanting to wear sparkly shoes and live in a castle. It wasn't that I thought those things were bad so much as I simply worried that I wouldn't be able to relate to a kid who liked them. Looking back, I know how stupid I was. As a parent, I can do whatever I can to try to ensure the kids have access a wide range of ideas and beliefs and they will still pick and choose what makes the most sense to them based on a whole bunch of different influences, some of which I simply can't control.

So, I let Falcon wear princess dresses and sparkly shoes, and she accumulated so many pink things over the first several years of her life, it looked like a unicorn had barfed in her closet. Once, when she was 3 or 4, she tried to get me to buy her duct tape and feminine pads because both were pink, and it didn't matter WHAT they were used for. Lucky for both of us, I put my foot down when she wanted to paint her room in our new house pink (we went with pale yellow) because eventually, she stopped liking pink. She stopped liking it so much that if an article of clothes or a notebook cover or anything else has even a hint of it, she will refuse it on the spot.

When you're a "neurotypical" kid coming after an older sibling with autism, life can be challenging. For years, poor Falcon couldn't cry when she was hurt or upset because it would trigger her brother Sky, making it nearly impossible for us to comfort her. On her birthday, Sky would become so anxious and dysregulated, that he would insist on "helping" her open her presents and then "showing her how to use her toys" before she even had a chance to play with them. Often she had to sit and patiently wait for him to finish playing with her new toys before she could try them. She spent much of her early years catering to her older brother's needs--sitting in waiting rooms at therapy sessions and ALWAYS playing what he wanted to play exactly how he wanted to play it because he had so little capacity for flexibility.

Then along came Stow, who bookended her with even more autism, and before any of us could catch our breath, Ren's spine went south.

Last winter, when Ren was still recovering from spine surgery number seven, I tried to get the kids to help me put out the Christmas lights. Before he could even get out the door, Sky started obsessing about all the things we might do wrong, got overwhelmed, and shut himself in his room to play computer games. Meanwhile, Stow came outside with a shovel in his hand and started digging small holes in the yard. But, Falcon? Falcon was there steady and ready to help. I told her I was sorry that this was how things were, but looking at her and thinking about all the ways she has stepped up over the years, I knew that we could build one hell of a matriarchy, the two of us.

More Falcon art.

Falcon is fierce because when Stow has a meltdown, she runs toward him and not away from him, even though we've asked her a thousand times to focus on protecting herself. She runs toward him because she knows she can help calm him in a way no one else can.

And more...

Falcon is fierce because she never, ever backs down on what she believes is right, and she will go to the mat for a friend or even for someone she doesn't know all that well if she thinks they need a hand.

But, maybe most of all, Falcon is fierce because she is the most empathetic and sensitive person I know, and instead of trying to hide her feelings or toughen up, she continues to look for ways to be herself and express those feelings. Lately, that has meant that she writes and illustrates the most fantastic stories about warrior girls who go on amazing journeys to save the weak and mistreated. Her empathy reaches beyond humans--I've never met a cat or dog or horse that didn't immediately love and respond positively to her. 

Most mornings I come out to find Falcon reading or writing surrounded by the cats.

Falcon is fierce, and to me, she's also just a little bit magical. In our world of concrete, black and white thinkers who can sometimes take language way too literally or just a little bit wrong, Falcon has a knack for knowing the very thing I will think is funny. We have a long list of past moments with the boys that we remind each other of when things are a bit too intense around here. The other day, for example, out of the blue, Stow said, "My balls reflect better than anyone else in my whole class." Needless to say, it took us a minute to figure out that he was talking about his awesome goalie skills in soccer (He meant to say, "I deflect balls better than anyone else in my class.") Sometimes she just has to say a single word, and we're both rolling on the floor. Falcon also always mixes the pancake or waffle batter on the weekends, comes up with more baking and craft schemes than I ever could, and is the first cheerful face I see every morning. I honestly don't think I could be luckier.

As you're going about your business this week, please send some positive vibes for this amazing girl so she has an amazing birthday free of brotherly meltdowns!

Falcon's picture of Stow's favorite panda.

Please Be Nice to My Kid

The kids go back to school this week and next.* I know that all of us have struggled with the long and life-changing impact of COVID-19, but I suspect it has been especially hard on kids with special needs, who have been more isolated and more cut off from necessary supports than "typical" kids.** When Stow goes back to school next Tuesday, six months will have passed since the last time he set foot in a classroom. In that time, he has not had many chances to chat with classmates or participate in extracurricular activities. He has, in fact, gone through the longest period of isolation of his life. As a result, he has lost ground in terms of his social skills and developed deeper anxieties about his peers and the ways they might reject him.

Third grade was hard for Stow. After a brilliant first six weeks, something happened on his bus, and his behavior spiraled downward in a way that was hard for all of us to get a handle on. By December he had been moved to a self-contained classroom for part of the day, by late February we added one-on-one aide support, and on March 13th he left school for the weekend never to return (thanks to COVID-19). We don't know how the rest of third grade would have gone with the help of the aides, but with the shift to remote learning, we found ourselves cast adrift as we struggled to get him to engage with his teachers and classmates. It's hard to imagine how fourth grade will go, but I expect a wild ride on re-entry and plenty of bumps along the way.

Other kids have always been hard for Stow to figure out, but the gap between him and his classmates grows each year. As kids get older and more aware of their peers and what it means to be cool and fit in, kids like Stow find it harder to "pass" as neurotypical. Stow's day to day life at school isn't like everyone else's. He gets pulled out of class throughout the day so his special ed team can work to help him handle the stress and social overload of school. When he doesn't understand a peer interaction, he can overreact, and his fight or flight instinct kicks in. He misreads verbal AND nonverbal cues. He gets too close to people and talks to them about things that don't make a lot of sense because he doesn't always realize that they can't see inside his head. When he's gets really upset, he cusses like a sailor in order to make sure people around him understand just how mad he is.

This is how he'd like to go to school on the first day. 

None of these things endear him to his peers.

Sending him back to school next week feels a bit like throwing him to the wolves.*** But we also know that this is what we need to do. Stow struggled to learn anything academically with remote learning because online class meetings were too much for him. And, despite our best efforts, school at home didn't provide the degree of structure that he so desperately craves. Most importantly, though, he still needs lots of practice with peer interactions and self regulation, and this is something we simply can't duplicate at home. He needs to be in school with his peers, trying, failing, and learning from his mistakes.

In other words, our only real choice is to throw him to the wolves and hope that the wolves turn out to be very, very kind.

So, please, be nice to my kid and encourage your kids to be nice to him, too. I know it's a lot to ask at times, but please support the quirky ones, the loud ones, the ones who misbehave. Be patient with the kid who interrupts repeatedly, who asks you a thousand questions about your power tools, or who tells you too much about his favorite Lego guy even though he's too old to behave like that, and you're really busy doing something else. When a kid panics or yells or swears or makes a terribly-timed or inappropriate joke that makes no sense, please consider that maybe he's not really trying to be a jerk, that maybe he just really needs help or wants to be your friend.

It's hard to send a child out into the world when you know how much they will struggle, and I'm not above begging when I say this: please, please, please be nice to my kid and to all the other kids like him. Because goodness knows they are working hard than most of us will ever know to do the best they can in a world that isn't really made for them.

"I'm nice."

Edited to add this picture which he insisted on putting up to the camera during his class's Zoom meet and greet. I don't know whether to laugh or cry. I'll probably do both.

* Sorry. This blog post isn't about how we came to the decision to send them back to in-person school. I don't have the energy to write that post right now, but suffice it to say that we feel confident they will be safe or we wouldn't be doing it.

** I'm not going to debate this. Again, too tired.

***Don't get me wrong. He has amazing supports in place and a strong "IEP team;" it's just, you know, hard.

Karate Mama

A lot of unexpected things have happened over the past few months. Perhaps the most unexpected of all is that I am now taking karate classes. Well, kind of.

You probably remember that Stow started doing karate just under two years ago (and that he had a totally awesome Nerf Karate Panda party for his eighth birthday). Well, he has continued to do karate, and since so much of Stow's life and routine has been turned upside down by the pandemic, we really wanted to make sure that he could still do it even during the shut down. Fortunately, he had the chance to keep up with lessons by following videos and practicing at home. And, once it was deemed safe for classes to start in person (with safety and social distancing protocols in place), we decided to slowly reintegrate him; we figured that his anxieties about the coronavirus and about socializing and about change would be enough to cause his head to explode if we just threw him back in to classes (that now looked very different due to COVID-related changes). So, the head of the karate school, Mr. N, kindly agreed to give Stow private lessons until he was ready to rejoin the group classes.

Stow practicing at home during the shut down.

Mr. N is a few years older than Ren with a white goatee and shaggy hair. He drives a beat-up van and plays in a rock band on the weekends. And, he's adamant about how things should go at his karate school. He asks parents (who he refers to as "rides") not to coach kids during or after class. His teaching methods require kids to be visually, auditorily, and physically engaged. And, he uses catch phrases about respect, hard work, memory, etc that they can apply to other aspects of their lives. 

Taro being entirely unhelpful.

And, by and large, what he does works. Though Stow has turned out to be a challenging case.

Initially, we thought he would do a couple of one-on-one lessons and then rejoin the classes, but as time has passed, the factors that cause Stow to struggle with karate have become clear. It has also become clear that he isn't entirely ready to rejoin his peers. Stow goes from having a terrific class on a Monday to having a disastrous one on a Wednesday. Ren and I could literally do the exact same thing to prepare Stow on both days and get vastly different results. One day, he could do all of the forms and call out the steps in order, and the next he might wander around the mat, crawl on the ground, or run out of the building. Since listening to instructors and showing respect are important parts of karate, the days when Stow doesn't behave are hard on everyone.

It takes about three months of consistent practice and doing well in class to advance from one "color" belt to the next, and there's always a point along the way where we really don't know if Stow will make it. While Stow will agree that he likes karate when he's doing it, and while he has progressed well with the forms, karate is hard for him because leaving the house is hard for him. In fact, if he had his way, he'd probably never leave the house at all. The house is a controlled and safe environment where he can get deep into a world he's created and where he doesn't have to deal with all of the chaos of other people's unpredictability. He doesn't have to figure out what to do with the fear, frustration, and confusion dealing with others causes him. Stow is very much a fight or flight responder when he's overwhelmed, and pretty much anything can overwhelm him.

Stow at a one-on-one practice.

That means, in the process of working toward any given belt, Stow will decide that he wants to quit karate--not because he doesn't like it but because because he is sure that the teachers and the other kids don't understand him and that he will get in trouble. In the one-on-one lessons, when Mr. N corrects him or tells him to try to do something better, sometimes Stow takes it well, and other times, it sends him spiralling out of control. One lesson, Stow flat-out refused to do anything from the start and only agreed to practice for the last ten minutes, when he realized that we weren't leaving until the lesson time had ended. Another, he got so upset that he stomped out to the parking lot and then back in again to yell at Mr. N. Given how tightly Mr. N runs his school, I was sure he would chuck us out for good after that particular class.

Though he has never admitted it, I am SURE all of this is frustrating for Mr. N. Fortunately, Mr. N has been teaching karate for a long time, and once he realized that we were committed to doing right by Stow while also not coddling him, he has worked hard to understand how to reach him. And since I know Mr. N is on board with trying to figure out how to help Stow succeed at karate, it's a little easier for me to feel ok pushing Stow out of his comfort zone.

That's how I found myself taking karate classes. To avoid a repeat of back-to-back classes where Stow refused to participate, Ren and I made a social story, talked about expectations, and provided opportunities for reward. When none of that worked, I unexpectedly announced, "Well, if you're not going to have a lesson, fine. At least I can."

Not knowing how Mr. N would feel about this sudden change of plans, I followed up with, "I mean, if it's ok with Mr. N."

"Sure," he said. "Cool."

And, that was the beginning of my career as an out-of-shape, inflexible karate mama.

Once Stow realized I was serious, he joined me on the floor. We did the warm up and the practice punches I'd watched him do a million times before. Then we moved into various stance drills and hand combinations. Two things surprised me. First, karate is really good exercise. And, second, it's a lot harder than it looks, especially for people with coordination challenges (LOL). I left my first karate practice with a whole new appreciation for what Stow has accomplished.

Some of Stow's belts (he has two more and will soon have another).

Since then, Stow has asked if I could join his class every time, and every time, Mr. N has graciously obliged. Not only that, he has spent time trying to teach my awkward self how to get better at karate. Stow still resists practicing or going to class when it will take him away from whatever world he's absorbed himself in, but on the whole, he has been a little more willing to be pulled away from those worlds now that he can teach me some karate.

I doubt I will ever get my own karate belt, but I am super proud that Stow has been able to do what it takes to achieve his next belt (RED!!) in a couple of weeks. I am also beyond grateful to Mr. N. It's hard to find a coach willing to teach Stow, and his willingness to keep trying means the world to us, even if Stow doesn't entirely understand how lucky he is.

We Haven’t Had Spine Issues for a Whole Year, and I’m Pretty Sure That Triggered the Plague

One year ago today, Ren had what we hope will be his last spine surgery.* He woke up from the hours of pre-op, operation, and recovery,  and for the first time in eight years, had a pain level that was bearable. He also had enough titanium in his back to stop a train.** Chronic pain and uncontrolled depression can make life next to impossible, and before surgery #7, we were dealing with both of them. Pain and pain meds can make you angry, and unpredictable, and detached, and a whole bunch of other things, and, because I was struggling to find the right combination of medications to help with my own depression, I had hit the outer limits of my ability to help Ren or to cope with his moods. We were lucky to make it through the spring of 2019.

Ren's rods. There are five of them just to be safe.

Anyway, Ren woke up from surgery a year ago today, and, with pain levels between 2 and 4, his life was different. Even though he had a 15-inch incision and a bunch of new hardware in his back, he felt like a new man after years of being at between 6 and 8 on the pain scale. We kept waiting for the intense pain to return as the "pain pack" the doctors had inserted during surgery wore off. But it never did.

Sometimes you don't realize the load you've been carrying until you aren't carrying it any more. Probably the biggest difference between Ren before surgery #7 and Ren after surgery #7 is that he was suddenly back in our lives again. For years, he spent much of the time we were all home lying in bed or on the couch while I handled child management and dinner prep. He often couldn't come to the kids' events because sitting on classroom chairs or bleachers, standing, or walking were too much for him. While I was becoming familiar with the restaurants and shops around town, and while I was driving kids to events in cities near and far, he was home, practically confined to the four walls of our house. When the back stopped hurting, we suddenly found ourselves together again, trying to put the pieces of our marriage and family back into place. Often that meant me introducing him to a place I've been many times but he'd never been before.

Gratuitous picture of the cat sitting on a puzzle Pink made me stay up half the night to finish.

It's pretty surreal to get the chance to see what comes after everything falls apart. I've learned a lot from it, especially since the pandemic has given us so much time to be together and to reflect. First, I've learned that our kids are hella resilient (and funny, and awesome, and not a little maddening). Those years when Ren couldn't do anything, the kids  often didn't understand why he couldn't do what other kids' dads could do. But, instead of becoming angry or resentful, they figured out ways to be expressive and creative and helpful. They also figured out ways to keep being kids, for better or for worse.

False bottom tissue box where Pink stashed candy and wrappers.

Second, some things are worth sticking out. For months and months and months, I wasn't sure Ren and I were going to make it because his pain and my depression made it nearly impossible for us to support each other. On top of that, for years and years, I wasn't sure his back would ever allow him to get to a place where we could enjoy things like travel or hiking again. So many years of uncertainty taught us how to stick it out, though, and I'm glad that we both kept trying. I'm absolutely sure that if either of us was slightly less stubborn, we wouldn't be together today discovering what this life after things fall apart can look like.

And, third, you really just never know, so you might as well try to live in the moment. The past 8 or so years have been hard, and it has taken awhile for me to believe that maybe, just maybe, the other shoe isn't going to drop this time. (I mean, unless you count the whole pandemic thing, which some days totally feels like my fault since surely MY bad luck is the reason this is all happening. I mean, we finally have a summer where someone doesn't need a surgery or a hospitalization, and I finally have tenure, so OF COURSE there's a worldwide plague). It's weird to be on the other side of so many years of chaos and back-to-back emergencies. I'm finding I'm having to rediscover how to "human" again. I am learning how to do things like have hobbies and enjoy down time with the kids (I've done a lot of decoupage and puzzles; and hiking--lots of hiking).

Can you have too many decoupage boxes? Asking for a friend.

I may have a problem. That, or I may just need to figure out new things to decoupage.

Ooooh, round box!

Some days, like when Facebook memories pop up on my page or when my depression isn't so great, I can get really stuck thinking about the trauma we've dealt with (2017, when Ren had heart issues and pulmonary emboli and might have died had we not stumbled our way into getting him the help he needed STILL haunts), but most days, I figure out how to live in the present and lean into this new life of ours.

Puzzle for Sky's room.

So, what am I trying to tell you, my dear readers? Thanks to months and months of brain-numbing quarantine and lack of sustained interactions with other adults, I really don't know. But, I THINK what I am trying to say is that I hope you remember that these current challenges are temporary and that you and the people you love have the capacity to grow and to change and to deal with whatever the universe throws your way. (Though I'm really hoping that once we get "through" the COVID-19 pandemic that the universe just kind of gives us all a few months off to try to regroup, straighten our collars, and have coffee with our friends again).


*In some ways, that is wishful thinking, since we know he has impacted levels in his neck that will most likely one day need attention, but for now, we choose not to worry about those.

 ** Lol. Not really, but maybe at LEAST enough to keep from another break!

How to Take a Hike

Until this summer, we literally could not go hiking (which was a bummer since it's probably one of my favorite things to do). We couldn't hike because Ren could barely walk and because we couldn't be sure that Stow wouldn't wander off or get too close to the edge of a cliff and fall over it. But, suddenly this summer is completely different--yes, because of COVID-19, but also because without the constant intense pain, hiking is no longer cruel and unusual punishment for Ren.

Once we started trying to hike, we realized that Ren's back is the least of our problems. In fact, it has taken several attempts to figure out how to complete a hike "successfully."* Each kid has their own hang-up when it comes to hiking. Stow HATES bugs. No really, I'm not sure I can overstate just how much he despises them. A couple of years ago, he refused to sleep in his room for the entire summer because there were stink bugs on his window. He also seems to struggle with body temperature management and gets hot very easily. Pink's asthma can be exacerbated by hiking in humid weather, but only if she hasn't been keeping up with her maintenance medicine or if she spends the first minutes of our hike running, which she likes to do. And, Sky? Well, Sky is just convinced that everything will go wrong. He anticipates all of the potential problems and then panics about them before they even happen. 

Now look. I know my kids well, so none of these hang-ups are a surprise to me. The surprise is that I didn't anticipate the degree to which they would make it hard for us to figure out hiking. Each of our hikes has been a "comedy" of errors, if by comedy, you mean people yelling and scuffling and, at least once, a water bottle getting chucked at someone's head.

We're fortunate to live in an area with many forest preserves and state parks, so we've had plenty of chances to practice. Each week, we try a new place. The first time, we went to a state park close to home. Before we even got out of the car, Sky started getting upset with Stow--or, more precisely, he started getting upset thinking about what Stow might do. We hadn't even made it to the trailhead--which was literally just across the parking lot--before the two of us were arguing about his treatment of his little brother. The hike didn't go well.

Sometimes I fail Sky because I ignore his perseveration; he is usually so "NORMAL" and able to handle things that I forget that this repetitive worrying is something he can't control. As a result it took me longer than it should have to realize that his "rant" about how he was sure that Stow would have a meltdown on the hike was a very real and uncontrollable expression of his anxiety about what might go wrong. In fact, it took multiple hikes where I basically yelled at him and told him to get it together before I figured this out.

Every time, the argument would go something like this: 

Me--"Jeeze, Sky, would you PLEASE stop pointing out all the things Stow might do wrong? You are going to trigger him!"

Sky -- "I don't understand why you think he will be ok on this hike. You KNOW something is going to upset him or he's going to get tired and want to quit." 

Me-- "Ugh, Sky, why are you doing this? You are old enough to be supportive! Besides, HE'S not the one having a meltdown right now; you are!!" 

Sky -- "I don't understand why you won't just help me!" 

Not surprisingly, the few hikes that started this way were a bit of a disaster. Then a friend suggested I just ask Sky what he was so worried about (Duh! Why didn't I think of that?!?). Which reminded me of how much Sky used to benefit from social stories. So, the next hike, as we were getting out of the car, I spent some time talking to him about what he thought would go wrong and thinking through worst-case scenarios and how we would handle them. Once I started doing that, we were able to make it a bit father into the hike before something went wrong.

Next challenge: Stow and the bugs. Stow and heat. Stow and his siblings. There are, in fact, many, many, many things that can trigger Stow these days. We work constantly to figure out what those things are and to control for them, but we also know that he needs to learn to be flexible in the face of challenges. It's an impossible balance. This is probably the hardest part of autism for people to understand. Stow is a funny, intelligent, kind, helpful, generous soul, but he does not yet have a handle on how to manage all of the stimuli and challenging situations that come at him on a daily basis. And, taking him out of his normal routine increases exponentially the potential for meltdowns (which, to be honest, happen even when he IS in his normal routine). 

The other thing that would probably surprise someone who doesn't deal with autism on a daily basis is what the meltdowns look like. When he melts down, Stow isn't covering his head, rocking and stimming in a corner. Instead, when he's triggered, he loses his ability to make good decisions (something he knows happens but that he hasn't figured out how to "fix"--which is its own kind of heartbreaking). Lately, this means that he lets loose a stream of expletives, which one might find quite impressive if they weren't coming from the mouth of a 9-year-old. It took time to train myself not to respond to the words even though they are pretty offensive. What most people think those words mean doesn't really matter because what Stow is really saying when he cusses is, "I am very upset right now, and I want you to help."  Some part of his brain understands that if you use shocking words maybe you can communicate to other people just how overwhelmed you feel.

Imagine having the peacefulness of your hike in the woods shattered by the voice of a child yelling, "You go***nm, sh**head, son of a b****!" at the top of his lungs. More than one hike has been interrupted by a series of foul-mouthed statements followed by Sky perserverating over the fact that we "don't do anything about Stow's language." Those of you who have gone through the struggle of helping your child overcome severe speech delays or through the challenges of pragmatic language deficiencies can probably understand why it's hard not to marvel at the sophistication with which Stow puts these words together, even as I am mortified by the fact that he knows and uses them so loudly. 

The other thing that usually comes with a meltdown, especially when it is triggered by a sibling, is that Stow reflexively tries to avenge whatever wrongdoing he perceives they have committed. He completely overreacts to whatever the trigger is, and all we can do is keep him (and others safe) until he can get it back together. This one's probably the biggest challenge with hiking because we can't always convince Sky and Pink to leave Stow alone so he won't "freak out." On our last hike, Stow wanted to use my phone to take a picture of the beautiful view, but when he tried to, Sky thought Stow was going to drop the phone so grabbed Stow's hand. The shock triggered Stow and caused him to wrestle with Sky for the phone. Thanks to some good luck and a well-placed chain link fence, all children and phones came through the incident unscathed, but the moment was far from tranquil, and we were once again THAT family disrupting the peace.

Just before the phone camera struggle.

During the phone camera struggle. No children or phones were harmed in the inadvertent taking of this photo.

Pink's asthma turned out to be the easiest of the challenges to handle once I figured out that she'd been skipping her maintenance medicine! These days, when we hike, we make sure she takes her maintenance meds in the morning and that she has a couple of puffs from her rescue inhaler right before we set out on the hike. I also remind her not to take off running right away. The kid is fast and full of energy, but teaching her to pace herself has been key.

The first hike, we made it zero yards without a fight. Ditto the second. Then I remembered to use social stories with Sky, so we did pretty well until Stow got overheated and let off a string of expletives that triggered Sky's anxiety. The hike after that, on top of social story-ing with Sky, we also remembered to make sure Stow had a towel and a bottle of water. That day we made it to the top of the hill before he freaked out because Sky made fun of him at the same time that he saw a spider. Ren had to take him back down to the car. The fifth hike, we got up early and made sure everyone had bug spray, towels, and water bottles, but this time Pink forgot to take her inhaler and so we had to turn back after about a mile and a half. Still, WE MADE IT A WHOLE MILE AND A HALF! The sixth hike, Stow and Sky were champs, but Pink couldn't handle the heat with her asthma. The seventh hike, we remembered everything--the social story, the water, the towel, the bug spray, and both asthma meds--and it went pretty well until Ren misread the map, and we got lost.

But that's the funniest thing about all of this. Aside from misreading the map on our last hike, Ren has never been the one who slows us down. He consistently and patiently climbs and climbs and climbs. And, I guess that's the metaphor here. No matter the challenge, we figure out how to keep going.

*Definitions of "successful" and "complete" may vary.

Camp Chronicles

Ren and I initially bonded over a shared love of hiking and the outdoors. On the wall of hospital where we met, there was a picture of the Nagano Alps. As I stood looking at it one afternoon (What can I say? There's not much to do when you're being held against your will in a hospital as you recover from an ulcer!), Ren came up to me and introduced himself. That very first conversation was about hiking and camping and the fact that his father was born in the same small mountain hamlet where I was living. When we started dating, all of our early excursions were to the various mountain ranges of Kyushu, where we would spend the morning and afternoon hiking and the evening relaxing in natural hot springs before heading home. I always assumed that hiking and camping would be a big part of our lives together, and it's pretty ironic that camping--in the form of a Tiger Scout campout--is what did Ren's spine in.

Ren on a recent hike.

All of which is to say that I kinda thought we might never camp again, and I was sad about it for a really long time. But then, Ren had his seventh spine surgery last summer, and for whatever reason, he woke up from it feeling better than he had in years. Suddenly things that seemed impossible before became a little more possible.

Of course, just because Ren's spine seemed able to handle camping, that didn't mean the kids could. When I suggested we give it a try, Ren was skeptical. He thought it all sounded like Too. Much. Trouble. I guess packing up your car to go sleep on the ground somewhere just for fun, does seem a bit strange, but I refused to let his Debbie-downer attitude deter me. After all, I had a plan.

Step one, put up the tent. As a way of breaking the monotony of long days at home during quarantine, back in April, I convinced Ren to put up our tent in the back yard. Stow loved it. He spent his afternoon playing video games and Lego in it and then insisted that Sky spend the night with him there. When it was time to take it down, he protested strenuously. Turns out tents help him feel safe and calm. Getting that kind of a reaction from Stow was an unexpected coup. Ren has a hard time saying no to anything that helps Stow chill.

Brothers' back-yard campout

Step two, family campout at home. While sleeping on the ground in my own back yard didn't sound all that appealing to me, I knew that if we didn't practice "camping" at home, we would never be able to make it in the real world. So, we pulled out the big tent and a small tent, and everyone worked together to get them set. After dinner, we had a round of corn hole, and when it got dark, we played cards by lantern light and then sat in our chairs around an imaginary fire and told ghost stories. At lights out, Pink went off to her own tent, and the rest of us crashed in the big one.

Setting up camp that afternoon, we could only find three sleeping bags, but we were too exhausted by the heat to worry about the other two. I mean, three out of five's not so bad, right? Ren and I gave the kids the sleeping bags and shared a single blanket. I had on long sleeves and long pants, so I figured I'd be fine, but I've never been able to convince Ren to dress for the weather. (One January, he wore flip flops and a t-shirt to do a whole house move in -20 degrees and snow.) He's not as young as he used to be, though, so the cold woke him at 3 am and reminded him of how much his back hates sleeping on the ground. Not long after, he bailed on me. With no sleeping bag and none of Ren's body heat, camping became WAY less fun for me, too. Even though neither of us made it until morning, the kids did, and Stow came in for breakfast begging for more.

Step three, take the show on the road. Nearby. We are fortunate to live in an area that has many state parks and forest preserves nearby, so for the next step, we went camping at a site less than twenty minutes from our house. We left after dinner and got home before lunch; start to finish, we were gone for about 16 hours.

That evening, as I waited in line at the camp office so we could get our site permit, I couldn't help but notice the guy in front of me who was taking FOREVER to decide where he wanted to spend the night. He was dressed head to toe in worn camouflage and had handmade bracelets on every visible body joint. His wild gray hair shot out from under his hat in all directions, and he had white crocs on his tanned and otherwise bare feet. As I listened to him tell the guy in the office about the fun he had last time and about how his daughter was going to join him around 10 pm, I glanced at the parking lot and noticed his run-down, white minivan (from which he'd inexplicably peeled off or covered the Ford logo), which was missing a row of seats and packed to the ceiling with junk. My already piqued anxiety shot through the roof, and I suddenly became convinced that this whole camping idea was a terrible mistake.

Once checked in, we went in search of our spot. As we wove our way around the narrow roads looking for it, Sky pointed out how small all the sites seemed to be. I didn't know a lot about what I'd reserved other than that it had a lake view. I was trying to be optimistic, but Sky's tendency to voice my anxieties was making it hard. "Mom, this isn't at all like where I went camping for Scouts. There are hardly any trees around the camp sites." "There are people everywhere!" "Why'd you pick one next to a swamp? There'll be mosquitoes!" When we pulled in to #47 right next to the run-down, white Ford, I decided Sky was right. We were doomed.

Camo-man had his back hatch open and was unloading what had to be a tree's worth of chopped wood. With the song "El Shaddai" on repeat on his tiny radio, he continued to pull things out of the back of his van while he yelled at someone in the front seat to help. At one point, he got out a bugle and attempted a song. Once we had our stuff out of the car, Ren moved it so that it was between his site and ours. That didn't stop Dalton from coming over and introducing himself and his grandson, though. Stow was thrilled to find another kid his age, and soon he was hanging at Dalton's campsite helping chop wood and gather sticks for their fire. We spent the rest of the night watching Stow and Pink go from our campsite to theirs or having Dalton and his grandson come to ours. By the time our fire died down it was well past midnight, and I felt duly chastened for my uncharitable first impressions of Dalton (though I don't feel at all guilty about my strong animosity toward his bugle or the "El Shaddai" marathon he put us through.)

Early morning on the lake.

The next morning, I awoke before everyone and watched the sun rise over the still lake. Nearby, a blue heron made its way into the marsh, and I was reminded of exactly why I love packing up my car to go sleep on the ground.

This low-stakes first run turned out to be a pretty brilliant idea. We learned some important lessons like:

-- You should always travel with your own vinyl table cloth so that Stow won't freak out about bugs, and

--You can't trust Ren to bring the right stuff for sleeping or you will end up with too few air  mattresses and, inexplicably, a handheld vacuum.

We also learned that when we go camping, our car looks a lot like the one in the opening sequence on the Beverly Hillbillies, and finding things in it is almost impossible. So, a few days after our trip, we went to Home Depot and bought a couple of the awesome storage boxes Dalton had in the back of his minivan.

We've gone camping again since then, and we are in the process of identifying the prettiest camping sites we can find for future trips. We're working on pushing Stow out of his comfort zone re. hiking. (It turns out that he does A LOT better when there are no bugs.) And, Pink and Sky are learning to be more patient with the process. Things still aren't perfect, but the last camping trip was the first time we had the right amount of sleeping bags and mattresses for everyone, so I am feeling pretty hopeful that we might just figure out how to do this after all!

Bug-free hiking is the life for me (Stow)!

Summer of COVID-19

This has been a weird summer. Before COVID, the plan was that I would spend just over a month in Japan teaching and doing research, Sky would take driver's ed and go to tennis camp, Pink would go to sleep-away camp in the north woods, and then all of us would go to Europe for a couple of weeks before school started again. An ambitious schedule by most measures and maybe one that would have been a huge catastrophe. We will never know, though, because first my flights to Japan were cancelled, and then driver's ed, and then camp, and finally Europe. We went from having an exciting summer ahead of us to having absolutely nothing.

I know we are not the only family going through this particular reorientation, and I also know that it didn't start with the summer. But, it has gotten harder now that the kids are out of school, especially since I'm supposed to be working on my research. We are always in each other's space, and we all seem to cycle through pandemic-caused anxiety or depression pretty regularly. The lack of clarity about when this will end makes things harder; it's a lot to process. Some days I find the changes so overwhelming, I don't know how I will keep going.

But other days, like today, I feel like maybe I have things figured out. I/We have adopted some practices during quarantine and social distancing that I/we didn't have the time to do as much before, and when I think about where we were as a family and how things were going with me and Ren a year ago, I am amazed and even a little glad that the pandemic came along to remind me to slow the heck down.*

So, here's what I've been doing. I'm curious to hear what you all are up to and how you're handling this, too.

Sunset over soy field.

1. Family drives -- At the end of May, it became clear it was time to replace our aging minivan. Thanks to COVID and my mad negotiating skills (I'm not kidding--this is the one thing you don't want to go toe to toe with me on), we were able to save about $10K on a new one that has an entertainment system that makes the kids SO excited that they want to go for drives "just because." Ironically, of course, the pandemic and concerns about spreading it mean we don't really have any place to go, so many nights we just get into the car and drive. After living here for seven years, I finally feel like I am starting to get to know the place a little! Sometimes only Stow goes along. It's a great way to help him calm and settle down before bed. Other times, everyone comes, and we swing through the drive thru and pick up soft serve ice cream cones to eat while we explore the back roads and rural towns not far from where we live. Many nights, Ren and I watch the sunset with the kids settled calmly in the back seat and all feels right with the world.

Country road.

2. Family hikes -- Last summer, when we went to Colorado, nobody died, and everyone proved their  affinity for exploring the outdoors. So, since the big trip we had planned to France and Italy fell through, Ren and I decided that this would be our summer to visit as many state parks and forest preserves as we can, either on day hikes or on overnight campouts.

Three kids hiking.

If I am being totally honest, very few of these hikes have been easy or gone well. Sky starts perseverating the moment we get out of the car and Stow HATES bugs and  being hot, which is a challenge because he overheats very easily. Meanwhile, Pink ALWAYS feels left out since so much of my time on these hikes is spent trying to keep Sky and Stow from spiraling completely. Each time we go, I've been trying different things to see if it gets easier. I do a social story about hiking and explain exactly where we are going and for how long, and once we get to the site but before we set out, I pull Sky aside to remind him that no matter what, it will be ok --it turns out his biggest anxiety is that Stow will do something mortifying or dangerous. I make sure Stow has a towel and his own bottle of ice water, and I make sure to spend at least part of the hike walking with and talking to Pink (and Pink alone). One hike we managed to make it a whole 200 meters before things fell apart, so I am choosing to maintain hope! Even with the behavior struggles, I am trying to focus on taking in the sights and enjoying what I see, hear, and smell. I'm also trying to be grateful for the fact that we are together. It sure beats spine surgery!

Very hot Stow with towel.

3. Meal planning -- I think the biggest change to come from the pandemic is that I meal plan now. Ren and I have always cooked almost all of our meals, but we've never meal planned. That degree of thinking ahead seemed harder than just making something based on whatever we could find in the refrigerator or freezer. Between Costco, the Japanese grocery, and our nearby grocery, we always had the makings for gyuudon,** fried rice, or spaghetti, if nothing else. When things shut down, and our state enacted stay-at-home orders limiting unnecessary trips out, we went from two or three grocery trips per week to one. Ren falls in the COVID high-risk category, so I have been doing all of our shopping since this began (boo!). That means that every Tuesday since mid-March, I have taken my grocery list (another novelty for me) and gathered enough groceries to get us through the week. To make this work, I actually have to know what I am going to make and what ingredients I need BEFORE I get to the store. It's funny how accomplished I feel when I do this. I don't know why, but even though we are feeding the kids just as well as we did before the pandemic, being more intentional about what we will eat for the week makes me feel like such a grownup.

The kids can't believe I planned this one. Why would anyone intentionally buy so many veggies?!

4. Meditation/ Yoga -- Yeah, I started doing yoga and meditation regularly. It helps. Of course.

5. Writing -- You wouldn't know it from my painfully long silences here on the blog, but I have been writing a lot during the weeks we've been isolated from work and friends. During my teens and early 20s, I kept a journal. (NONE of what I wrote back then is worth being seen by anyone other than me, and it's even hard for ME to read it.) Once I was married and had kids, I started writing fiction and this blog and somehow lost the ability or the desire to journal. When the pandemic hit, though, I realized I needed to record what was happening, if not for future generations, then to help me remember this weird and challenging time. I fear that most of what I write in my journal is uninspired drivel, but writing has kept me from completely losing my mind, so that seems good. The problem with all of these journals from my 20s and now is that they need a good generation or two to marinate, so I am hoping that they won't be read by my kids or my grandkids. Maybe by the time my great grandkids come along, they'll seem insightful!

None of what I/ we have been doing is all that inspired. In fact, most or all of it is the kind of thing my therapist or doctor has recommended at one point or another to help me manage my depression. It's funny that it took a pandemic for me to slow down and try some of these things. Then again, that seems about right.

How about you guys? Are you all doing ok? How have you been holding together?






* Don't get me wrong, there is a lot that is really hard about this, especially given how challenging change and surprises can be for kids on the autism spectrum, but I am choosing not to write about that stuff right now. Also, COVID-19 sucks, so if we could have avoided it altogether, OBVIOUSLY that would have been better.

**Beef bowl