Ten Words

"Stow, I got it. Just sit down and shut up."

On the bus ride home from school on the first day of October, Stow heard these ten words from the bus aide. The exchange was observed by another aide, reported to the principal, and responded to immediately. And, in the scheme of things, in a world where so very many bad things can happen to a kid, being told to shut up can seem insignificant. Somehow, though, this became the precipitating event to what has turned out to be another challenging fall.

I was there to meet him when he got off the bus that day because Ren was still very much in the throes of his post-op recovery and couldn't handle Stow on his own. When Stow got off that day, he explained that something bad had happened to a kid and that somebody was going to get into trouble and that it was ok because another grown up had dealt with it. It took three or four tries for me to get enough of the story from Stow to understand that the something had happened to HIM. Once I felt like I had a handle on the story--he was trying to help the bus aide on his special needs bus by telling her what to do and she told him to bug off--I sent an email to his IEP team. It was probably one of the shortest messages I've ever sent an IEP team.

Stow got off the bus upset because he says the bus aide told him to "shut up" and that he was annoying. Obviously, this is highly problematic, and we’d like to get to the bottom of what’s happened and the situation on the bus.  

Thanks,
Moe

Almost immediately, I got a call from the principal. He'd heard about the incident from the aide and called me as soon as his afternoon bus duty ended; he hadn't even had time to see my email. Our conversation was short. He assured me that they would act quickly to address the situation. Stow asked to talk to him, and when he did, the principal told Stow how sorry he was that someone had treated him like that and promised that everything would be ok.

I hoped and believed that it would, but fall has always been hard for the boys, and everyone who works with Stow knows how fragile his successes can be and how quickly he can spiral.

Day 1

The next morning, the aide was still on the bus. Sometimes things don't happen as quickly as we'd like. It took the bus company some time to find and review the video of the incident and then a little longer for them to find a replacement aide for Stow's bus. It broke my heart to see him get on the bus that next morning and to see the offending aide not even greet him. 

I tried asking him if it worried him to have the aide on his bus, and more than once, he said it didn't. I am sure that it's true that he didn't think it bothered him. But, what is also true, is that starting on October 2nd and for weeks now since, he has struggled behaviorally at school. Before the bus incident, he had day after day of truly positive behavior charts. In fact, not long before the incident, we'd met with his IEP to discuss scaling back some of his supports because he was doing so well. 

Stow rides the "short bus" because he finds it hard to manage the social aspects of the "long bus." On the long bus, kids get into conflicts and the driver yells. A kid like Stow can make terrible choices in that kind of setting, and the drivers aren't usually equipped to support a kid who struggles. Ironically, the very thing we were trying to avoid by having him ride the special needs bus not only happened but also triggered every anxiety he has about getting into trouble for trying to help. He can't articulate any of this; in fact, things like this remind us of how much of what he experiences/feels sits just outside of his ability to comprehend.

It seems unfathomable that something as little as this moment of impatience and a failure to self-censor could derail a kid so, but Stow's teacher and I both keep track of his behavior (because behavior MEANS things; it ALWAYS means things), and it has steadily worsened starting with the bus incident. At this point, we find ourselves in unchartered territory given the struggles he is having at school, and though his team knows Stow well, they can't figure out how to get him back on track.

This is autism, you guys. You figure out what works, and for awhile it works. Sometimes it works so well that you feel like you've unlocked finally cleared a level in the video game called Life With Autism. And, then suddenly, the littlest thing can send you right back to the beginning. For those of you out there dealing with these kinds of challenges or worse, hang in there! We’re with you!!

A Metaphor for Just About Everything

In the week leading up to the surgery, I started an 1000-piece puzzle that I'd bought after our trip to Colorado. As a fan of WPA posters of National Parks, I thought the puzzle would be a nice way to spend time with the kids during all the downtime and long periods of waiting that come with surgery and recovery. The puzzle turned out to be a total jerk, though, with purposely misleading shapes and impossible to identify markings. Friends who have done other WPA National Park puzzles later told me that this was a thing. I didn't know that when I started, though.

At the beginning

Soon, the puzzle became a pretty accurate metaphor of, well, of a whole bunch of things. It looked easy enough but was unnecessarily hard. On the outside, the puzzle seemed pleasant, almost peaceful, but on the inside, it was a jumbled, untangleable mess. Then there was the fact that I couldn't get anyone to actually DO the puzzle with me--not even Big Sissy who had come to help and who normally can't walk away from a puzzle once she starts.

In the end, I found myself obsessed with the stupid thing, staying up too late, drinking scotch, and watching Letterkenny, completely unable to walk away from it. And then, after working on it for hours, discovering I'd only managed to fit a handful of pieces into place. This went on for weeks. Ren's surgery came and went, as did his hospitalization. In the second week post-op, my brother came to help. Unsurprisingly, he also had no interest in the puzzle. As life post-op went on, I found myself stuck, making very little headway with it.

The state of the puzzle on the night before surgery.

Two and a half weeks post-op, on the night before school started for the kids and just over a week before my own semester started, I finally had a breakthrough with the puzzle. Sure, I stayed up too late and watched way too many episodes of Riverdale, but by the time I crawled into bed around 1:30, it felt like the end was in sight.

The next morning I woke up feeling more positive than I had in awhile. When Ren came rolling out with his walker, I said, "Look at the puzzle! I think it's really coming along" Pink was the first to ask me if I was being sarcastic. Ren just kind of stared at me.

Noooooooooooo!

You guys, I feel like I've become pretty good at taking a lot of things in stride. But, when I saw what the cats had done to the puzzle, my brain kind of short circuited. On the outside, I looked utterly calm and unconcerned, but in my head, I was sure this was the final sign that all hope was lost.

In a rare moment of insight, Ren and the kids seemed to know exactly what was going on even though I didn't say anything. Pink and Stow set about trying to fix it, and when I told them to just put it into the box, they did so as gingerly as possible. Ren encouraged me not to give up and suggested I keep going despite the setback, but I knew I didn't have the time or energy to do it all over again.

Waiting with the kids for the bus, I texted my brother to tell him what had happened. He asked if I planned to try to fix it, and when I said no, this is how he replied:

"Then I should probably tell you about the piece I took out and hid from you now?"

"It's in the top drawer of your coffee table...I couldn't resist...Sorry (not really)."

Suddenly, the puzzle became a whole new metaphor. It turns out that no matter how old you are, you can never escape the antics of your older siblings. Worse? Ren saw my brother hide the piece, making him an accomplice to this particular crime. Had I gotten to the 999th piece and found the last one missing, I would've been pretty upset. Had I then learned that my brother and the spouse I WAS SPENDING MOST OF MY TIME HELPING RECOVER FROM A SPINE SURGERY were pranking me, I'm not sure it would have ended well for Ren. As it was, I asked Ren why he didn't tell me about the puzzle piece. "I completely forgot about it," he said. Given his level of pain and the meds, I guess I could buy that.

I added the missing piece to the box and tried to forget about the puzzle.

But, I couldn't seem to let it go, and I found myself feeling more aimless and isolated than I had before the CATastrophe. It was about this time that the puzzle became a metaphor for not giving up and for trusting friends because the next day one showed up with a puzzle keeper and a few hours of free time and worked on the puzzle with me until it was almost back to its pre-cat state.

Almost back to its pre-CATastrophe state

A few days later, I put in the last piece. Only, it turns out it wasn't the last piece because, this puzzle wouldn't be a useful metaphor if it wasn't STILL MISSING THE PIECE IN THE VERY MIDDLE. I told my brother who swore that he hadn't taken two pieces. Knowing how much he revels in being the source of my unhappiness, his lack of glee convinced me he was telling the truth.

999 pieces

In Japanese, there's this phrase shikatta ga nai which comes in really helpful at a time like this. I mean, what was I going to do about it? Somehow over the weeks of the puzzle sitting in the middle of a high-traffic area, a piece disappeared. I looked for it, of course, but it was gone. So, I did the only thing I could do; I rolled up the puzzle and stood it in the corner of my bedroom, assuming that one day we would either find the piece or I would give in to the idea that 999 pieces of an 1000-piece puzzle was indeed the perfect metaphor for my life.

The 1000th Piece

In the end, though, I guess I don't know WHAT the puzzle is a metaphor for because once Ren started feeling okay, and once he started helping with cleaning and decluttering again, he found the missing piece at the bottom of an empty sanitary napkin box that Pink has been using to hold her colored pencils.

There. Analyze THAT!