Friday, August 7, 2020

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.

Wednesday, August 5, 2020

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!

Saturday, August 1, 2020

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.