Shattered

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

*****

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

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

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

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

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

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

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

*****

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

*****

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

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

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

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

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.

Right Ball

On the evening of the first day of e-learning for the kids, Stow spilled a huge cup of Sprite on Sky's computer and notebooks. Sky had accidentally left his computer in our gaming space when he collapsed on the nearby sofa, worn and full of anguish from an anxious day of doing school online. Unexpected changes and lack of certainty are hard for all kids, but they can be crippling for a kid on the spectrum, and Sky was spent. The next morning, when we discovered that the computer was fried, I knew there was no way we were getting through the pandemic and e-learning if Sky didn't have a working computer, so I got him in the car, we drove to Costco and we bought another one. Sometimes, even when money is tight, it makes more sense to take the hit.

Since then, we've had four school Chromebooks (for the younger two kids) crash and my work computer go kaput. We've also had a PS4, an iPad, and a kindle stop working. Pink has started referring to our house as a tech black hole. The only way I finally managed to get the internet to work fast enough for me to teach online was by using an ethernet cable (thanks, IT!!) long enough to snake through the living room, through my study (which had been taken over by the kids), and down the steps to my temporary office in the basement. Even then, when conditions weren't right--and almost ALWAYS related to Zoom--the internet for the whole house would go down. The weirdest day was when my Zoom meeting worked, but no other internet in the house worked.

My ethernet cable making its way in the world.

That's kind of how our pandemic has been going. Today marks the beginning of our twelfth week of social distancing. The kids left school for the weekend on March 13th and never went back. My classes let out for spring break the week before that, and by the end of my spring break, I knew I'd be teaching remotely for the foreseeable future. Like so many families, we experienced lots of heartbreak. Sky missed his first high school tennis season. Pink missed her first flute concert. We had finally gotten Stow set up with a one-on-one aide and were looking forward to see how that change helped him. We haven't been able to see my elderly parents for months and don't know when we will again. We've missed birthdays and other special occasions.....*

It has been HARD. Change of routine and loss of support structures has led to daily meltdowns, some quite traumatic. We've seen regression and loss of skills that make us nervous going forward. The challenges of parenting kids whose inflexibility, anxiety, and inability to really grasp why this is all happening can make a day seem eternal  Not being able to go out for a walk or a drink with a friend to vent has been exhausting. To be honest, the combination of increased stress and uncertainty and decreased in-person support has challenged me and Ren to dig deep into our resource reservoir. And what we've discovered is that we don't have enough to manage this on our own. But, we also have figured out different ways to take turns burning out.

The days are long!

Then, somewhere around week six, it struck me that we were somehow uniquely ready to deal with this situation in a way that many other families might not be. I realized that although this was all Very Hard, we were doing ok--the kids were getting along, Ren calm and relatively pain free, and I wasn't completely paralyzed by stress. That's when it occurred to me that much of what we've experienced up to now had prepared us for this. Thanks to Ren's seven spine surgeries and thanks to special needs parenting, we've had our lives stop in their tracks, and we've had to learn how to adjust when something that was working stops working.

Talk about pandemic readiness skills! Every time Ren has a spine surgery, we go from doing tons of activities to doing nothing. The world around us keeps going, but we freeze in place. Depending on the surgery, this can last anywhere from a couple of weeks to several months. If you've read my posts from those times, you know that there is always a moment where I worry that things will never be ok again. I worry that the surgery and all of the trauma surrounding it have taken us so far out of our "normal" lives that we might never find our way back. But, every single time we have come out the other side wiser--and a little more weathered--but ok. The waiting is the hardest part, but I am learning to lean into it and to believe that everything is going to be ok. It's going to look different. It may not be easy. Some of us will lose more than others along the way, but somehow it will be ok.

I'm also trying to laugh. A lot. This (see pic below) made me laugh yesterday. I don't know why I didn't see it before. I'm sure it has been in the garage FOREVER. Maybe I just didn't pay attention. In Japanese, it says denkyuu, or light bulbs. And, to be fair, the word for baseball is yaKYUU using the same kanji character, but I haven't laughed this hard in a long time.

Right ball

Make sure you're paying attention! Laugh together. Cry together. Keep making your way together. It will be okay, somehow. Even if it doesn't feel like it, it really will!

Right ball, you guys. Right ball.

*These are just examples, of course, and I also know we have been lucky to not have lost as much as so many other people have lost.

** Also, this post is completely insignificant in light of what is happening to black people all across our country right now. Please, listen to black voices, support them and don't ask them to tell you how to help. Stand with them, listen to them, and let them tell you their experiences without being questioned. Also, here are some places you can help.

The Alpine Slide

Remember how I said I was going to get the kids to the mountains this summer if it was the last thing I did? Well, we made it, and it went about how you'd expect it to go.

There were the meltdowns and freak outs that come with any change in routine, and, like usual, Stow was ready to head home after 72 hours away. Still, I had a chance to hike and canoe and breathe mountain air with the kids, and that was pretty amazing.

Canoeing on Grand Lake

We landed in Denver and picked up a rental car that all three kids disliked because when they sat in the back their bodies touched. "Why didn't you get one of those big SUVs?" one asked. "This is a vacation," chimed in another. "Why do you have to be so cheap?" Three minutes into our drive from the airport, Sky wanted to know exactly when we would see our first mountains, and Stow wanted to know when we'd be stopping for lunch.  Fortunately, once we hit more mountainous terrain, all got distracted by trying to determine the types of rocks and outcroppings they were seeing (score one for just enough geology knowledge to keep them occupied!).

We spent our first night in Estes Park in a tiny motel with magnificent views and a place to build our own campfire (which went ok until Stow became increasingly brazen in his efforts to show us how well he could snuff out the tiny side fires he kept lighting). Sky fell in love with the mountains around Estes Park and the shirt he bought as a souvenir there (this last piece of information may seem random, but it will make more sense in a minute--I promise), and he was sad when we headed into the park and across Trail Ridge Road to our second destination.

Stop along Trail Ridge Road

Since Ren couldn't really hike, I was pleasantly surprised by all we could see and do as we made our way across Trail Ridge Road. The short hikes we could take from various stops and the wildlife we saw along the way thrilled the kids, even as I knew that a younger more mobile version of myself would have ridiculed people like us for being such lazy tourists.

We spent the bulk of our vacation in Grand Lake, the small town where I worked for a summer as a college kid. Sky didn't like it because it wasn't Estes Park, and Stow didn't want to leave our rental cabin because it had a bunk bed and cable, and we'd been away from home for 72 hours so clearly this was our new home. (Have you ever tried explaining the difference between being on a trip and being "homeless"? Because, it's not as easy or as obvious as it sounds.)

Grand Lake and Stow

On the fourth day, we drove to Winter Park where we bought ridiculously expensive day passes so we could enjoy the gondola, alpine slide, putt-putt golf and other activities. Day four is where the trip really started to take a Moe Family turn. We went to Winter Park so the kids could ride the alpine slide (described as Colorado's longest alpine slide with "over 3,000 feet of heart-pounding track"), but the alpine slide requires a ski lift ride, and a ski lift ride for three children, two of whom are on the spectrum, requires, at least at first, two adults.

See the conundrum?

The guy selling the day passes told me that Ren couldn't ride the lift up unless he was willing to take the slide down. He also told me that Ren's spine issues wouldn't prevent him from riding the slide. When I conveyed this information to Ren, he decided it was a perfectly cogent idea for him to take the lift up with Stow and to ride down on the slow track.

On this first trip, Sky led the way followed by Pink. I took the middle with Stow behind me and Ren bringing up the rear. Everyone made it down safely, though I think I probably triggered an adrenaline rush for Pink when I nearly rear-ended her. And, I am sure the group of teenagers who came behind Ren weren't thrilled by his snail's pace.

Alpine Slide

Yay! We made it down safely and the kids had fun!

The logical next step would have been to walk away from the alpine slide. But, our passes were for limitless rides, and we're nothing if not passionate about getting the most for our money. So, I told Ren I'd take the kids on the slide again.

"I'll come, too," he said.

When you live with someone who has a life-altering and painful physical disability, you learn not to tell them how you think they should live with that disability. So, even though I really wanted to tell Ren to quit while he was ahead, I didn't want to stop him from something he felt like he was capable of doing.

My second ride down the mountain was faster and more exhilarating than the first. As each family member arrived safely at the bottom, I felt buoyed by the fact that we were doing something so....well....so normal. But, then Pink came in with Ren close behind, and before she could tell me about his spill, the attendant at the bottom of the slide was explaining how to get to first aid.

Do you know what's hard to do if you have a titanium rod from neck to tailbone? Bend. Bending is impossible and also completely necessary if you get going to fast on the alpine slide and need regain your balance. Since Ren can't bend, when he started to tip, he couldn't recover without relying on contact between his arm and the side of the slide. Today, three months later, he still has slide burns--they're healed, but the scars look like no other injury we've seen.

When we got to the first aid tent, my biggest worry was that the open wound on his arm would prevent him from being able to have surgery. The nurse gave us some petroleum jelly and some bandages and told us how to keep the wound clean and moist for quicker healing, and after a few gondola rides and a round of putt-putt golf, the kids decided they were ready to take on the alpine slide on their own.

On your second visit to the first aid tent, you know it's time to walk away from the alpine slide. While Ren managed to get a shallow slide burn that covered most of his forearm, Sky got a small deep one on his shoulder that closely resembled a golf divot. The Japanese last name I gave the nurse when we arrived at the tent the second time made her raise her eyebrows, "I thought you looked familiar," she said to me. Armed with more petroleum jelly and clean bandages, Sky and I found the rest of the family, and we all agreed it was time to head home.

"I can't believe how unlucky I am," moaned Sky, who was distraught about the hole in his new t-shirt, and whose day had been ruined by that last ill-fated alpine slide run.

Ill-fated shirt

"Look," I said. "Don't let that one moment ruin a really good day. I mean, it WAS a pretty great day, right?" Reluctantly, he agreed.

I suppose our trip to Colorado taught us all that every day is full of a lot of good and a little bit of bad and we that can choose which of those things will be our focus--

--which isn't to say that I didn't have to spend a chunk of the last few days of our vacation looking for a shirt to replace the one with the hole, because I totally did.

My Heart

I am sitting in the cramped hospital room watching the nurse keep her eye on Sky's vitals. His heart rate keeps falling and setting off an alarm. She tells me not to worry, that the medications they used during his procedure just worked a little too well.

Procedure. I've always hated this word in reference to something being done to a human body subdued by anesthesia. All week Sky and I debated the line between surgery and procedure. Now that he's a teen, we don't agree on much, but we both agree that if cutting and repairing are involved, it should be called a surgery.

"Besides," he says with a grin, "I want to be able to tell people I had heart surgery this summer."

This is out-patient, 2 or 3 hours under general anesthesia in order to thread a catheter up to his heart and put a roadblock in the spare electrical pathway that keeps causing it to race. It doesn't matter to me what they call it; the pre-op process and the time spent waiting for updates from the surgical theater are more than enough to trigger memories of so many surgeries past. Ren and I get out long enough to get some overpriced, ridiculously-healthy, oddly-paired food at the "Asian" salad bar, but soon we are back and waiting in the room that suddenly seems cavernous now that Sky's bed has been rolled away with him in it.

When the nurse calls to tell us all is fine but that they have to cross into the left atrium, I thank her for the update and then try to focus on the tiny tennis ball high on the tiny TV screen. It's the first round of Wimbledon, and we don't get cable at home. Ren wants to know who called and what they wanted. I find it hard to explain in Japanese as my anxiety rises in my chest and settles in my throat. I know that crossing to the left increases the risk of dangerous clots and stroke.

The room has no windows, and I have to traverse a maze of hallways in order to reach one. The prospect of tracing my way back to the sunlight seems particularly daunting, especially since the hospital lobby is a dizzying combination of cows and farm theme and old cars. I'm at a loss as to how to keep my shit together. This surprises me given the vast experience I have with hospitals and surgeries. Ren barely takes his eyes from his iPad. Apparently his coping strategy works better for him than mine does for me.

And, then, suddenly, it's over and the doctor comes in and explains what he did before we're asked to wait for ten minutes in the hallway while they get Sky settled in his room. Twenty minutes later, we are still waiting, so I knock on the door. The nurse says that most parents don't handle seeing their kinds on breathing support well, but she knows how many surgeries we've been through with Ren and tells us we can come in if we're ok with it. I'm more ok sitting with Sky than I am in the hallway with strangers, so I tell her we'll be fine. Like Ren, Sky comes around slowly after anesthesia, and it takes his body even longer to deal with the various meds on-boarded during the surgery.

The lighting in the room sucks--our options are a massive, blinding fluorescent ceiling light or  a depressingly dark headboard light. We wait for Sky to wake in near darkness while tennis continues on the television. When he finally opens his eyes, he wants to know if it's done. He wants to get out of bed. He wants to watch something else on TV. He switches to National Geographic, some show about the Sphinx and the Pyramids. He's still trying to watch it when they come in to do an echocardiogram.

I often wonder if I am doing right by my kids, by Sky, who is my oldest, my practice run, my test case. Every phase he enters, every new challenge he faces, I am doing it with him for the first time. Most of the time, it doesn't go smoothly and I am convinced I am blowing it. But as I watch them track his heart on the screen, I am transported back to the first time I ever saw that heartbeat. Back to that moment fifteen years ago--before I had a baby, before I learned to doubt myself so deeply--when I was simply awed to see that life growing inside of me. Watching Sky's heart beat so perfectly on the screen I am flooded with gratitude--gratitude that I've been able to hold and to love and to protect and to help grow this heart in this boy.

It's his heart, but as I look at it in the darkened hospital room, I realize that it is my heart, too. It always has been.

My heart four days post-op.

The Heart, It Races

"Let me start with the takeaways," the pediatric electrophysiologist began. "There are two big ones. First, this won't kill you. Second, it won't go away unless we intervene."

Supraventrical tachycardia (SVT). Thirteen months (and just 81 hours) after I got home from a work trip to Japan, we finally had an answer to the inexplicable heart thing that has been plaguing Sky. Getting to the diagnosis was a combination of frustrating waits and missed symptoms and a last-minute act of, shall we say, well-timed disobedience.

SVT reading

It started early last summer when Sky came in from basketball on the driveway reporting that his heart fluttered and he felt like he was going to pass out. Because the symptoms coincided with a significant growth spurt, we figured that it was a one-off. When he reported similar symptoms once or twice a month for the next couple of months, I reached out to our pediatrician, and she ordered an EKG. The normal report was both reassuring and frustrating, especially for Sky, who wanted to know why his heart felt so funny. Two different pediatricians told us that his symptoms most likely resulted from his rapid growth and dehydration.

In the spring, when we were in to see Ren's cardiologist (that's a whole other story, btw), I described Sky's symptoms and asked what he would advise. He suggested an echocardiogram and a 24-hour Holter monitor. We followed through with both, and both came back essentially normal. By now, Sky was getting anxious. He worries about a lot of stuff a lot of the time, and the unilluminating test results made him feel bad.

You've probably noticed that life tends to be chaotic around here, so three "normal" test results sent Sky's heart issues to the bottom of my concern list. He continued to get light-headed easily and to have heart "spasms" from time to time, but since we'd been multiply assured that there was nothing wrong, I wasn't sure what else to do. Then, the week before I left for a 12-day work trip to Japan, Sky started tennis camp. On each of the four days, he had increasingly concerning issues with his heart, ending on the fourth day (a Thursday) with him going temporarily blind. I contacted our pediatrician and Ren's cardiologist early Friday morning. By the end of the day, Sky had a do-not-exercise restriction.

Some problems seem unsolvable, especially when it's Friday at 4 pm and you're leaving before dawn the following Monday and you're not established with a pediatric cardiologist and the local pediatrician has just left the practice. Fortunately, we have a pediatrician back in Indiana who sees the kids once a year and who is amazing in all sorts of ways, not the least of which is that she doggedly pursued Ren's cardiologist until we had a plan and means to get Sky hooked up to a 30-day monitor. It took a few middle-of-the-night phone calls from Japan (sorry, travel mates, I know I was being a bit loud), but we got Sky set up with both the monitor and someone specializing in pediatrics to keep an eye on its readings.

Summer in Tohoku--my job's pretty awesome (#breathedeep)

By the time I got home in the early morning hours of Saturday, Sky had been wearing the monitor for four days and off of sports and exercise for two weeks. He was frustrated because he hadn't been cleared to go back to tennis (we were told the doc wanted a baseline before he did), and he was worried we were wasting time and money on the monitor (this is a huge thing for him, despite our constant reassurances). Given the haphazard way I'd strung together the medical coverage for this, I imagined that the lack of response from the doctor had much to do with the fact that Sky wasn't actually anyone's cardiology patient.

So, I made a decision that would turn out to be either brilliant or catastrophic (did I mention how HARD parenting is?)--I sent him to tennis on Monday morning with strict instructions to stop and record anything amiss. I also sent messages to both the pediatrician and Ren's cardiologist letting them know I'd done this. Sky and I both knew the weird heart thing wasn't going to happen as long as he was sitting around chatting with friends on Discord.

I dropped Sky off at 9, and by 11 am, I had a call from Ren's cardiologist's office telling me that he needed to stop whatever he was doing immediately. Within an hour, we had an appointment scheduled with the pediatric cardiology specialist for the next morning (an appointment I'd been told wouldn't be able to happen until August at the earliest when I called from Japan).

Summer Midwestern Sky (#breathedeep)

So 13 months and 81 hours later, we finally know why Sky's heart "spasms." We are trying to wrap our heads around how we got here and exploring the various available interventions; fortunately, the condition seems highly manageable. Sky is back at tennis this morning, and I am reminded of my mantras: "Breathe deep," and, perhaps less inspiring but still extremely helpful, "Everything will be ok."

After the appointment, I took Sky for pizza and a little shopping. Not sure Taro approves of Sky's purchases, but I think if you can match the ties to the eyes, you're doing something right!

Taro is not amused.

Forest Bathing

The summer I was 20, I lived and worked at a youth hostel and retreat center in Grand Lake, Colorado. An Indiana girl, I had before then only ever dreamed of living in the mountains. I spent much of that summer in Colorado wondering why I was born in the flat land of corn.

The job required me to spend three out of every five days running the registration desk, cleaning toilets, and cutting vegetables (not all at the same time, obviously). But, the other two days, I was free to roam, and little by little, I covered most of the western side of Rocky Mountain National Park, walking alone for hours surrounded by rocks, trees, and bodies of water whose grandeur was a constant reminder of how small and insignificant my life was next to the vastness of the universe and the expanse of geologic time.

My days on those trails were spent encountering unexpected wildlife and discovering new vistas around every turn. In the mountains, I was completely present. Everything seemed clearer. I felt like I could breathe for the first time. I left that summer in the mountains restored.

Me, Colorado circa 1992

One of my good friends from college spent the same summer at Ghost Ranch in New Mexico. In those pre-email days, I was a fervent letter writer, and she was one of my most reliable pen pals. I wrote about my anguish at knowing my time in those mountains was limited since, come August, I had to go back to the stifling humidity and relentless flatness of the Midwest. She wrote back, "Breathe deep the mountain air and save it for the rougher days."

I'm not sure I've gotten such good advice before or since.

Back at college, I tried to live by those words and draw upon the lessons I learned during those hours alone in the mountains. And, when the last reserves of mountain air seemed to leave me, I drove along the lonely country roads of rural Indiana searching for any vista that could appease my wandering soul.

I've had chances to be in the mountains since then. Ren and I met and started dating because of our love of hiking. For three years I lived on the side of a mountain in rural Kyushu and rode my bike along rivers and rice paddies. I spent weekends with Ren exploring Kuju and Aso and Kirishima. But, our struggles with autism and allergies and the (god forsaken) spine have left us landlocked in a barren landscape. It's hard to imagine hiking and biking and camping given the set of challenges we face, and it's even harder not to feel completely hemmed in by the fears that these challenges bring. But, it has also become abundantly clear to me that I need the mountains and woods like I need the air in my lungs.

*****

Just after sunrise at camp.

As things have fallen apart the past few weeks, I've felt myself drawn to the woods (flat though they may be). Walking along creeks or lakes in the early morning or evening, I try to find some of that "mountain air" that makes it possible to breathe.

In Japan, they acknowledge the restorative power of nature by emphasizing the importance of "forest bathing" (shinrin yoku). Forest bathing highlights how simply being in the woods can heal our souls.

Sunset at camp.

I've started taking the kids with me when I walk or bike. It seems they could use some restoration, too. It thrills me to see them drawn to the trees and streams and rocks. They haven't lost their ability to let nature speak to them.

Near home.

We had already started planning a two-week road trip out West when we learned about the broken rods, so yesterday after we got home from the surgery consult, I had to tell the kids the trip was off. Their responses were quick and unfiltered; they were angry and sad and scared. They wanted to know why they have to spend so much of their lives waiting for their dad to have surgery or waiting for him to recover from surgery. They wanted to know if we would ever get to go to Florida or Colorado or Hawaii or any of the many places their friends visit in the summer. They worried about starting middle school and high school less than two weeks after the surgery. They know how much life turns upside down when Ren has surgery, and they were worried about what this seventh spine surgery would mean for all of us.

Whereas with previous surgeries, I could convince them (and myself) to look on the bright side, this time, I found myself at a loss for words. They're right. This is scary and unfair. None of us deserves this.

Near home.

Today, I decided we'd go to the mountains anyway. It will be a shorter trip, and we will have to fly instead of drive. I'm trying not to worry about the cost of it as we head into another avalanche of medical bills. Maybe forest bathing is what we need to get us through this time. I don't know, but it's certainly worth a try.

"The mountains are calling and I must go." 
John Muir

Nerf Karate Panda Party

Stow has been talking about his birthday party for months. He kept suggesting grand plans that sounded, well, hard. And, expensive. He wanted to go to Great Wolf Lodge (So. Overpriced. Also, no way am I spending the night at a water park with other people’s kids. I know my limits!). He wanted to go to Chuck E. Cheese (This is my wish for you, dear blog reader; may you never, ever have to do a party at Chuck E. Cheese). He wanted to do a swimming nerf party (Gah! Water, water everywhere, and not a drop to, well, you know. Plus, the last time we tried to do a swim party on his birthday, it was cold and rainy and everyone ended up inside watching a movie they’d all already seen).

“Let’s have a karate party,” I suggested more than once, but Stow resisted the idea. The anxiety Stow developed during the basketball season had carried over into karate, and he missed a lot of lessons during the winter. This made it difficult to help him get back into the swing of it. For weeks, I'd been kicking myself for not anticipating the ways that changing his karate routine might mess up the awesome vibe he'd developed there.

Two equally compelling reasons drove my persistence with the karate birthday party suggestion, though. First, it would be a cheap and easy party. They provide the karate instruction and the space as well as a free (!) month of lessons for each kid, and all I had to do was bring food and decorations. After a long semester and a fifth-grade campout, I couldn’t imagine a better way to manage a birthday. Second, I hoped having a party at a place where he’s been successful would give him confidence and maybe even reignite his passion for karate.

So, I enlisted Pink’s help. Whenever the topic of Stow’s birthday party came up, she knew to casually say, “A karate party would be so cool! I wish I could have one.”

Up until two weeks before his birthday, Stow continued to change his mind about his party. He wanted a shopping mall party (???), a movie theater party, a Build-A-Bear party. It seemed that every encounter in his life held the potential of being the world’s best birthday party.

As he started to finally settle into and do well at karate again, I decided to ask one last time.

“What would be your favorite party ever?” I asked him on our way home from a karate class.

“A nerf gun panda party!” he replied, without missing a beat.

“Well, we can’t do a nerf party at our house, but I can ask about doing that at the karate place.”

“Yay!” He replied.

And, so finally, he agreed and we found ourselves hosting the first (and probably last) ever Nerf Karate Panda party:

Nerf battle.

Makeshift panda cupcakes.

Party favors--Panda sleeping masks.

And, it turned out to be a perfect little party. The kids had fun. It was low stress for me. Best of all, many of the boys said it was their favorite party ever. The only downside?

Finn. He's been following me around the house ever since the party, staring at me with his flat affect and soulless eyes, oddly stiff arms and legs that don't entirely bend at the waist...Every time I turn around, there he is. It's hard to get things done when Finn stares at me like that. 

Parenting is Hard

Yesterday was Sky's 8th grade National Junior Honor Society awards ceremony. He got inducted last year based on his academic performance and community service. Of course, Ren and I are both very proud of how hard he worked to overcome the challenges of autism and various developmental delays to become a lot like his peers--a sharp, funny, sarcastic teenager. But, this blog post is not about that.

You guys, every piece of the outfit he selected for the ceremony last night was too small. Oh, and it clashed. He wore a black and red horizontal plaid shirt a green and a (different shade of) red diagonal plaid tie. Apparently, he couldn't find any of his non-Christmas ties. The only thing in the ensemble that fit was his shoes (though goodness knows why THOSE still fit). The sleeves on his shirt, a good three inches too short. And, his pants? Well they reminded me of the time Bobby Brady tried to do his own laundry. Seriously, if the kid wasn't a total string bean, he would not have been able to even get these clothes on. On the bright side, his socks matched, though he did also forget to wear his NJHS pin.

At LEAST three inches.

These children, they make it hard to parent them. They don't listen when I ask/tell them to do something, and 9 times out of 10, I am asking or telling because I know how it's going to play out. Given that it's the end of the semester and that the various spring events are in full swing, I knew I wouldn't be able to solve any last minute wardrobe issues. That's why I asked him to try the stuff on the night before. I suppose I should have made Sky come down and show me the outfit he planned to wear, but honestly? Couldn't he tell they were a bit on the tight side? Isn't part of my job to teach them agency?

As far as I could tell, he was the only kid with clothes that were two sizes too small. When he walked, he pulled at the tail of his shirt and the cuffs of his sleeves. He slouched a bit more than usual. He ran his hands through his unruly hair that's three weeks past time for a cut (but that he wants to grow out), and I felt pretty bad for him. Guess I learned my lesson--parenting is hard. Also, I probably need to take him shopping more often, even though he hates it.

Success?

Here's a post I shared with some friends this weekend:

Sometimes this is what success looks like. He’s supposed to be playing a basketball game right now. We were there on time and tried to get him to play, but even before we got into the building, he seemed off.

When we got into the crowded hallway, he fled to a dark, isolated corner and told me he couldn’t do it today because he was “freaking out.” Indeed, he was clearly on the verge of losing it.

We tried for awhile to get him to stay and watch from the bench, tried to talk him through what was bugging (too many new things he said, including a scraped knee and the fact Sky was gone). He said he couldn’t get it back together and that he needed to go. We went together to tell the coach he was going and then we sat with him in the car in the parking lot for a bit. We told him how much we loved watching him play. He struggled to keep it together and begged us to drive him home. So, we did. And then we sat with him in the car in the garage for a little longer.

He got out and opened my door and hugged me. By this time I had tears in my eyes because it’s not easy to know what to do and watching your kid fall apart is hard. He said, “When I’m freaking out, my tummy is purple because I feel sick and my head, arms, and legs are red like fire.” Then he pointed to his heart and said, “And, this is blue because it feels calm but also really sad.” On the way into the house, he said, “I’m sorry you couldn’t see me play. I’m freaking out and it isn’t safety for other people and it isn't safety or for me.”

So, this is what success looks like sometimes. He knew he’d hit his limit, he was able to tell us and insist when we tried pushing. Not only that, but he could describe what his body felt like and understood he needed to do something different in order to stay safe.

I’m sad I didn’t get to watch second-grade basketball because it’s a total hoot, but I’m so glad that for this moment on this day he was able to tell us what he needed and get it.

*****

Friends responded to the post telling me how well we handled it and how proud they were of Stow. But, in the moment, it felt like Ren and I were doing everything wrong. Autism parenting feels like that a lot. The things we thought we knew, the things we thought would work, the things that we thought we could do--all of it--turns out not to be quite right. 

Stow is a conundrum wrapped in a mystery tied up in creativity and unpredictability. He has these moments--moments where he can so clearly articulate what is going on in his head, moments where he can advocate for himself BEFORE the meltdown happens. When conditions are right, Stow can demonstrate some top-notch reasoning and self preservation skills well beyond the capabilities of his brother at the same age. But, he also has a whole lot of other moments when his brain short circuits and the only thing that makes sense to him is to fight or flee. Nothing teaches you your limits as a parent quite like having a kid who toggles unexpectedly between these two extremes.

I know I haven't been writing as much these days. The short explanation is that writing blog posts used to help me figure out where we've been and where we're going. It used to be that I could see the storyline and understand its general arc. But, that's just not true anymore. I am not sure how to write about what I don't know. I have no idea how this story ends. And, if I am being totally honest, it scares me. 

Into the Vortex

Our first winter here five years ago, it snowed in early November and didn't melt until March. That was the winter of Ren's first spine fusion, so he didn't leave the house those four months except for the occasional doctor's appointment. In the meantime, as a novice to the ways of the Great White North, every time it snowed, I managed to make the entrance into our driveway smaller and smaller until I could barely fit the car between the two massive piles of snow I'd created and feared would never melt. (Here's a blog post about the various sensory bins I made to cope that winter). That we didn't pack up and move south after that first winter kind of blows my mind now. With Ren out of commission and the kids five years younger (so 9, 6, and 2), the polar vortex of 2014 was a long winter of snow shoveling and single parenting for me.

In the intervening five years, winters here have been pretty mild and the kids have become more self-sufficient. Sky loves to snow blow and Stow loves to shovel, so the snowfall we've had has been utterly manageable. This week that all changed, though, because in the last 10 days, we've accumulated more than 18 inches of snow and find ourselves staring down another polar vortex, one that looks to be worse than the last one. With windchills expected to get down to -50F or lower, schools are closed; work is closed; even the US Postal Service is closed. After a few dumps of snow and temperatures too low for any of it to melt, this place is starting to seem a lot like Hoth. I'm thinking about trading one of the cars in for a tauntaun. Tauntaun's seem somehow warmer. And, fuzzier.

Started our polar vortex "party" on Tuesday night with an indoor cookout.

Our main goal, this go around is to keep everyone in the house, especially Stow who likes to wander when stressed and who often refuses hat and gloves. To that end, we started by making a list of things we could do once homework and morning jobs were done.

The list they created for Wednesday.

Same sensory bin, five years later.

Car World, apparently.

By 10 am, we'd gotten through most of the list, endured three meltdowns, and broken up one brawl. So, then we stepped it up a notch and started to use the cold to our advantage, if it's possible to do that when it's -26F with a windchill of -50F.

Freezing boiling water.

Freezing bubbles.

Waiting for water to freeze.

Almost frozen and joined by pineapple.

Welcome to the Arctic!

I was so busy trying to keep Stow occupied that I totally forgot to put the chili in the crockpot, so all hands helped. Stow manned the can opener while Sky cut veggies and Pink browned the ground beef. Ren did some magic with onions.

Browning the beef.

Demonstrating how to cut a pepper.

It's not even noon on the first day yet (school and work are cancelled through Thursday). I started this post last night and squeezed in these sentences while the kids play "Don't Rock the Boat" and "Quick Cups." I have no idea how we will get through 36 more hours of this, but at least we have heat and a kotatsu.

Catan and kotatsu

If you don't hear from me again, you'll know I didn't make it.

Slow Learner

I know I haven't posted in awhile. After 475+ posts, it seems I no longer know what to say. I mean, I want to encourage you, to inspire you, to tell you you're not alone, to make you laugh. But, man, we're struggling right now. We have been for awhile. Way too many years into this autism journey, we still find ourselves a bit lost.

What do we do when the therapies don't quite work? When behavior gets so out of control it disrupts the whole family? When all of our skills just don't quite seem to be enough? These questions (and many more) and their seemingly unknowable solutions clatter around inside my brain, like the spinning of a thousand tiny hamster wheels.

All the hamster wheels in my head, in graph form.

I'd like to say that all these years with autism, food allergies, spine issues, and the mental health stuff have taught me how to be more "zen" about the things I can't control. But, honestly, I get through most days kicking and screaming. Trusting the process, going with the flow, adopting an attitude of acceptance, having a beginner's mind--whatever you want to call it, I'm pretty bad at it. At this point, I am convinced that all of this is meant to help me grow as a person; the problem is that I've always been a slow learner.

When the second diagnosis comes six years after the first and you find yourself once again parenting a newly-diagnosed kindergartener, you might think you have enough experience to actually know what to do next. But, no two kids are alike, autism or not. Whereas Sky broadcasted his impending meltdowns by an ever-quickening agitation that turned him into a human pinball and tumbled out in a tsunami of words, Stow has always struggled to communicate what's happening inside him. So, when the triggers come (and it appears there are many), he panics and fight or flight mode kicks in. Without going into too many details, I'll just say that it is physically and mentally exhausting to help Stow figure these things out while keeping everyone safe. It has also become more and more clear to us why the average life span for people on the spectrum is half that of the general population. The ways in which Stow can find himself in precarious situations never cease to catch us a bit off guard.

These signs around the house remind Stow of his other options.

So, at OT, we work with Stow to identify when his heart rate has quickened and his body feels out of sorts and to help him understand how his body moves through space so he's less likely to break things or run into/over people. At speech, we work with him to develop the ability to access the words he needs when his body and his brain are telling him to panic. The behavioral therapist helps Stow untangle his big and confusing emotions. Karate gives him a highly-structured environment where he can practice hearing, processing, and then doing what is instructed. His school IEP team has doubled down on support, keeping an aide close, especially in unstructured times, and switching him to the "short bus" to help relieve the social anxiety those long minutes on the bus can cause.

First day on the "short bus."

At home, we have been sticking as close as we can to the gfdf diet and striving to have as little change as possible. We've all but stopped taking trips longer than an hour and try to keep every day exactly like the last. When we do have things to do, we talk about them in advance and make sure he knows exactly what to expect.

Ren's spine pain returned a few weeks ago, along with several troubling new symptoms. Surely the meltdowns and the stress are part of the back problem, but it's a catch-22. Because, once the spine goes south, so does Ren's mood, and our routine, and the overall ability for the household to stay on an even keel. Ironies abound as I continue to learn how to support him, too.

I don't suppose I'll ever know how we ended up with our particular constellation of challenges. As a person who looks for meaning in everything (I'm a literature professor, after all), learning not to ask why and simply to embrace this chaotic mess of a life is surely the biggest and most important lesson I will ever learn. Here's hoping I "get it" sooner than later!

A Post at 4 A.M.

They say if you've met one kid on the autism spectrum, you've met one kid on the autism spectrum. In other words, no two kids with autism present in the same way. Seven years ago (almost), as a parent of a newly diagnosed kid, I found this truth to be especially galling. Friends would introduce me to acquaintances with kids on the spectrum, but our conversations would hit one dead end after another as I tried to figure out how I could learn from their years of experience when there seemed to be so little that our kids had in common. That's how I ended up on the internet and why I started this blog. Parenting a kid with autism felt a lot like shouting out into the void.

In February, Stow received an autism spectrum disorder diagnosis, too. While I wasn't surprised given all the ways he has struggled and the various developmental delays that he continues to wrestle, I also wasn't sure I believed it. I mean, Stow's behavior and struggles seemed to look very little like Sky's. In fact, despite the fact that Stow showed various delays, his issues didn't present themselves enough like the autism we knew to convince us to seek out a formal diagnosis. And, presumably, we should know better. We're already autism parents. In February, when we went to the neurologist, we weren't looking for or expecting ASD. But, that's what we got.

Since then, I've started to see it. It looks SO different than Sky's, but I am pretty sure it's there. Currently, we're in the process of getting a second opinion in the form of a very thorough evaluation at one of the leading autism centers in the country, which will help us better understand all that is going on. Will they also diagnose Stow with autism? I don't know. I do know that they have already diagnosed him with a significant expressive and receptive language disorder. And, the sensory processing disorder continues to "stick." Early next year, he will get the final phase of the eval done, and I suppose then we will KNOW. But, do we ever really know? And, does it really matter? I suppose the diagnosis changes nothing. The struggles he has will continue to be the struggles he has, and second-opinion diagnosis or not, we will continue to work with him to manage those struggles in the best way we know how.

So, what's my point? Actually, none of the stuff above is my point, really (Sorry! I'm working on little sleep). My point is that this is hard. It's hard for all the ways I've talked about before--the meltdowns, the inflexibility, the unpredictability, the chaos, the interventions, the therapy appointments. And, it's also really hard because it takes a long time to figure out what is going on, and even as we are trying to figure it out, we still have to go to the mat for our kids and push back against teachers, strangers, and often even friends and family who don't understand.

For the first four years of Sky's school life, we had him in a private school (the best of our options at the time) that did not offer special education services. Every single day, (EVERY! SINGLE! DAY!) I was at the school talking to his teachers about one issue or another. Once he got the diagnosis, I had the words for what I was trying to tell them, but even though I was still learning what it all meant myself, I advocated for him daily and made sure they understood why he did what he did and accommodated him accordingly. Then, I got the job I have now, and we moved to an area with excellent public schools, and for the first time as an autism parent, I got to see what the right amount of accommodation by teachers who understood ASD could do. You can read posts here, here, and here (not to mention here and here and here and here and here) about the struggles we had with Sky in school back then. And, you can notice that I rarely talk about school any more. When schools handle special needs right, there's not much to write about. Stow does a lot of the same things Sky did in school at the same age, and because the teachers and the principal know how to handle it, I don't have to explain to them about sensory seeking behavior and poor social skills and intentionality. There are 7 people on Stow's IEP team who "get it," and just like that, my life is 1000 times easier than it could have been.

But, there are still a lot of people who don't get it, and I'd like to be able to tell you that I don't care about them anymore. On some level, I guess, I am so deep into parenting kids with autism, that I'm oblivious to the stares and the judgment of strangers who can't believe I "let" my kid hit me or that I give my careening pre-teen a device to calm him down despite the fact he's being "a baby." What still bugs me, though, is when people who know us question our reality. After all these years, I still have friends and relatives (some of them quite "close")*** that believe our kids' issues lie squarely in our failure as parents because we just don't discipline our children well enough. There are still people who know us well (enough to know better) who question why we need to make accommodations--things like not trying to do too much in a day or keeping a pretty steady routine or sticking as closely as possible to dietary restrictions--and who assume it's because we have raised three fragile (entitled? selfish?) snowflakes. I don't know, you guys; this sh*t is hard enough already. Wouldn't it be heavenly if we had lives full of people we love and care for who care for us and love us where we are and for who we are? These days, I'm working hard to see if I can't make that happen for my family and for myself. And, to be honest, I think, maybe, this might be the biggest challenge on this journey.




***For the record, if you're reading this blog, I am probably not talking about you. There are many people who struggle to know how to help or what to say, but they are trying and we know they are trying. Trying means a lot to us!