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.

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