Wednesday, September 17, 2014

Part Four: The Great Divide

Sorry for the fuzziness. Not easy to get an action shot!
My last post could really be summed up in a single sentence: Sky didn't do what he was told, so he had to sit out for part of trampoline class.

So, what? 

Exactly! So what.

See, when you have a non-typically developing kid, it's all the little stuff that trips you up. On the surface, Sky got what he deserved for being silly and not listening. But, on the other hand, he got put into a (very public) time out simply because he didn't properly follow John's instructions!

This is the part we have struggled with, still struggle with, and will probably, at least on some level, always struggle with. We want Sky to be typical in his interactions with his peers. We want him to be held to the same standards of behavior and to be treated in similar ways to his peers. After all, these things are necessary for him to make his way in the world without us. But, sometimes, he just can't bridge the gap between where he is and where his peers are. Sometimes the gap is like a crack in the sidewalk, easy to navigate and no big deal. But other times, it as big as the Grand Canyon. And there's really no guidebook for bridging a divide like that.

So, last Monday, I found myself standing in front of the parents' bleachers with a tearful Sky and no good idea of what to do. I couldn't send him back out to the floor to wither under the silent criticism of John, but I also didn't want him to quit doing something he loved just because he couldn't figure out how to get along with the instructor. Then again, I didn't want to talk to the gym manager, either, because I figured doing so would only escalate the problem. For a good 2 minutes, I just stood there contemplating the options while Sky cried silently beside me.

I decided the least bad choice was to talk to the gym manager. 

"Look," I said, "I'm sure John is a good coach, but if I can't at least give him a head's up when Sky is having a more challenging day, then I'm not sure what to do. I mean, I'd love it if Sky could come in every time and demonstrate consistently good behavior. But, if he could do that, he probably wouldn't have an autism diagnosis. I don't want to use autism as an excuse, but I also want to recognize there are still some areas that need work and punishing him for those seems unfair."  

I didn't say much else, because then she turned her attention to hearing and understanding Sky. He told her he was trying his best and he understood that sometimes he didn't do things the right way. He told her it was hard to wait so long for turns, and that sometimes he felt like the other kids laughed at him. He told her he wished John would believe him when he says he really is trying. She asked him if he liked trampoline, and he said, "Yes, I just wish I could do it by myself so people wouldn't misunderstand me so much."

It was kind of amazing and kind of heartbreaking all at the same time. All the joy, all the sorrow.

We left with a promise that she would talk to John and get back to me soon. A few days later, I got this:

After speaking with John, he and I feel that perhaps the best option for Sky is to find another class time or private lessons. I am willing to open up a class to teach Sky myself if we can find a time that works for both your family and my schedule. I know that you also have Pink in a class at the same time, so if you could give me a call, we can try and find something that works.
I would like Sky to feel confident and successful at the end of his class. While John is a wonderful teacher and I think he has been good for Sky, I'm just not sure we are all able to come to an agreement on the best way to work with Sky when he is having a bad day. 

So, we talked, and we set up a time for her to teach an "invitation only" trampoline class. Apparently, there are other boys who need the same kind of support Sky does. The first lesson, it was just Sky and his new teacher. She kept him bouncing and engaged the entire time, and he came off the floor excited and proud. "Did you see how awesome I did, Mom?" he asked When I asked him if he liked his new lesson, he said, "I loved it. It was the best ever!"

So, all's well that ends well, I guess. I mean, on the one hand, I'm really glad (and extremely grateful) that the gym manager recognized the need and was (finally) willingly made changes so that Sky could continue on with trampoline lessons. But, on the other hand, he's in a class by himself, separated again by the sometimes seemingly untraversable canyon between himself and his peers.

Tuesday, September 16, 2014

Apparently, There's a Part 3 (and Maybe Even a Part 4)

Remember back a few weeks ago when I wrote a letter to the manager of the gym where Sky and Pink do gymnastics/trampoline? Even though I thought the solutions we'd come to were imperfect, I was encouraged by my discussion with the gym managers and the coach's introduction of a visual schedule for class.

And, for a couple of weeks, things went well, but then Ren had another spine surgery and chaos found its way back into our lives. With the chaos came behavior regression, which impacted Sky across the board. He got into more trouble at school and spent quite a bit of time in his room chilling out with a book in his swing. Not surprisingly, the chaos impacted Sky in trampoline class, too.

The thing is, if it was possible for me to have a conversation with Sky's teacher John, I'm sure we could have worked through these bumps. Unfortunately, open communication is not really John's style. John's style is my way or the highway, even in his interaction with parents. I was a competitive athlete, so I get it, I really do. And, in an ideal world where my kid isn't on the autism spectrum and doesn't have to work his tail off just to appear "normal," I would want a hard-nosed coach like John pushing him to achieve his goals as an athlete.

But, that's not where we are right now. Right now our goals are much more mundane. We're working on helping Sky figure out how to wait his turn and how to keep from having verbal outbursts even with the sensory assault that comes with a gym full of kids doing a hundred different things.

Pairing sensory overload with Sky's unquenchable desire to jump can sometimes be a recipe for disaster. On good days, Sky can keep it together and do exactly what he's supposed to do when he's supposed to do it. Sure his social skills are a bit rough around the edges, and he can perseverate just a tad too much on Star Wars, but he actually does quite well. On other days, when all our ducks are not in a row for any of a myriad of reasons, trampoline is HARD. I suppose, on those days, I could just keep Sky home. Goodness knows I'd love to shelter him from all those things that are so much harder for him than for his peers. But, he won't learn anything from that, and he sure as heck won't figure out how to adjust and fit in.

I knew that trampoline class would be challenging the week after Ren's surgery, so we did what we could to prepare. We talked about Sky's nervous energy and brainstormed ways to manage it in the gym setting. We read through the list of rules John had given him. We discussed John's expectations, and gave Sky time to make sure he was ready.

Unfortunately, as soon as his feet hit the tumble floor, Sky became a ball of poorly-managed nervous energy; his voice volume was too high and his ability to hear, process, and properly carry out various trampoline-related tasks, too low. As much as I tried to will Sky into settling down and making the best choices, I couldn't help him get a handle on his increasingly out-of-control physical self. (When Sky is really out-of-sync, his body doesn't quite do what he wants it to do, and he looks a lot like a boy who's being disrespectful or goofy.) I saw all of this coming (indeed, I could have predicted it), but it was impossible to talk to John, much less strategize with him about how to head it off.

About 20 minutes into the 45 minute session, John sat Sky out for what looked like silly behavior on the trampoline. I actually think that having Sky sit out for a few minutes is appropriate and can serve to remind him to keep control of all of the conflicting impulses he experiences. But, John didn't just sit him out for a couple of turns. He had Sky sit through three full rotations of his classmates, about 15 minutes in all. At the start of the fourth rotation, when John still refused to hear Sky or to take a minute to talk to him about what had happened, Sky started to freak out. Sitting in the bleachers what felt like light years away from Sky, I knew what he was thinking--he needed John to know he didn't do the wrong thing on purpose.** But, John didn't care why Sky didn't do what he was told; he only cared that he seemed to be defying his authority.

When it became clear that there was no end to Sky's timeoutin sight, and when it also became clear that Sky was about to lose it FOR REAL, I relented and waved him off the gym floor. I probably shouldn't have, but I didn't see what another power struggle with John was going to achieve. This was one of the (many, many, many, many) moments in our lives with autism when there really was no good choice.

Once he had permission to leave the floor, Sky ran to me with tears in his eyes, and said what he'd been wanting to say to John, "I know he thinks I did the exact opposite of what he told me, but I really was trying. I wish he'd believe in me."

To be continued....

** If I had a dollar for all the hours of my life I've spent explaining to Sky the difference between intention and resultant action, I could take a first-class trip around the world. Twice.

Friday, September 12, 2014

Meanwhile, Stow.....

So, you guys know Ren is recovering from spine surgery, Sky is struggling to keep his cool despite the fact the world seems to conspire to create chaos, and Pink is fighting the high mold count with coughs and sniffles. But, what about Stow?

While he doesn't always appear in my posts, Stow has been actively working to keep all of us on our toes. In fact, he keeps us so busy (by causing more trouble than should be possible by a single human being), that I find it difficult to find the time to write about him in whole paragraphs.

The art of haiku seems best suited to describing his antics.

Though the air grows cold
Stow wears no pants or skivvies
potty train for months

Why use the toilet
when options are limitless
puddle on the floor

Sleep in big boy bed?
Oh, the possibilities
nighttime Lego thief

Hey, no one's watching
unexpected good fortune
eat all the cookies

Feeling kinda parched?
Raid the recycling bin
Mmm, back wash cola

Meds on the top shelf
childproof caps are for sissies
Mom, look what I've got

So long precious nap
no one sleeps but dumb babies
just wait 'til I'm 4

Just so you know, in the time it took you to read these haiku, Stow has taken over the world. Good luck. Trust me--you'll need it.

Have kids when you're young
that's what everyone told us
Stow proves the adage

Thursday, September 11, 2014

A Day in the Life--Seriously, Never-ending

6 a.m comes early when you've spent most of the night in theER. And when you're in your forties, serious lack of sleep leads not to the giddiness of your youth, but to a strong feeling of nausea....and of really, really, really wanting to go back to bed. Of course, past 40, the day after not sleeping isn't the worst. It's the two weeks after the day after not sleeping that drag on in torturous exhaustion.

The day after Ren's surgery, I was up at 6, kids fed, lunches packed, and non-asthmatic ones on the bus by 7:35. To work by 8, and all was well until about 3:15 when I got another text from my mom: "Ren's surgery nurse called for follow-up. Concerned about symptoms. Said to call surgeon."

Sigh. The surgeon's office closes at four, so I called right away. After a lengthy game of phone tag, I finally talked to his nurse. 

She promptly sent us to the ER.

After five hours of testing, with very recently post-op Ren resting uncomfortably on a mattress no thicker than three pieces of stacked cardboard, we were sent back home. The worrisome symptoms--his change in voice and shallow breathing--were, get this, A DIRECT RESULT OF HAVING ANTERIOR CERVICAL FUSION SURGERY (gosh, that would've been my diagnosis, too).

We got home at 9 pm. By that time the kids were in bed and I'd spent most of my non-working hours over the previous two days at the hospital with somebody or the other. 

When I sat down at my computer to catch up on work, the first e-mail I opened was from Sky's teacher:
I'm writing to let you know that Sky has had 2 difficult days. I am seeing behaviors that were not exhibited during the first weeks of the school year.  He has been interrupting in class very frequently, has been off task (an example is coloring his pencil with his Sharpie marker) during discussions and worktime, and has not been making the good choices that I know he can.....
This, you guys. This is what stinks about having a kid on the spectrum. When things fall apart at home, they fall apart for my kid with autism, too. Every. Single. Time. 

It's simultaneously heartbreaking and frustrating. Because just at that moment when stuff hits the fan and I really need him to keep it together and maybe even help his younger sibs chill out, Sky will do exactly 100% the opposite. And, not because he wants to cause trouble or because he is seeks attention, but because he Doesn't. Know. What. Else. to do. When unexpected things happen at home, it triggers a cascade of inappropriate behaviors and bad choices for Sky that can take days to undo.

Remember this?

Sky slipped this under my door on the morning of the third day. He knows when he can't keep it together (which is HUGE progress, by the way). He just doesn't quite know what to do about it. Disruptions, big or small, lead to a ripple effect that only intensifies the further it moves away from the point of disturbance.

Sky's teacher is fantastic this year, and his first couple of weeks were the best he's ever had, so I know everything will be okay in the end. I just hate, hate, hate it when we can't keep life stable enough for him. I guess we can only keep hoping that eventually he'll move beyond "I feel like this" to something slightly more proactive.

On the bright side, though: it's been six whole days since I had to take someone to the hospital.

Wednesday, September 10, 2014

A Day in the Life, the Never-ending Version

Spine surgery number four is in the books. All things considered, it went well. Before the surgery, the doctor told us Ren's previous lumbar surgeries would make the cervical fusion seem like a walk in the park. PSA: cervical fusion is waaaaaay easier than lumbar fusion. You, know, just in case you, too, find yourself in need of multiple spine surgeries.

Being a veteran back surgery spouse, I went into this last procedure with a clear plan and a backpack full of survival gear: my computer, papers to grade, a pack of mini iced sugar cookies, a southwest chicken salad, my fleece, and two rechargeable tablet devices to catch up on Netflix if things got desperate. It  may have been overkill, but Ren is famous for getting out of surgery and then taking approximately an eon to wake up in recovery.

By about hour five, it seemed pretty clear that this was going to be one of the smoothest surgery experiences we've had. Then I got a text from my mom: "Pink says she doesn't feel good. Says her asthma is bothering her. Her chest is hurting."

Pink hadn't had an asthma episode in nearly two years, so when she woke up with that familiar old asthma cough early the morning of Ren's surgery, I did what anyone in my position would do. I tried to ignore the signs. Then I realized my guilt would overwhelm me (and that not taking action could backfire in a thousand different ways), so I administered her puffs and sent her to school with a note for her teacher and the school nurse about her flare.

My parents have watched the kids loads of time, so they knew what to do. They gave her puffs from her inhaler and kept an eye on her breathing. When Ren and I finally pulled into the garage after 9 hours of surgery, recovery, and driving, Pink  met us at the door. She was wide awake and hyped up on the albuterol from her emergency inhaler. I could hear her wheezing and see her tummy working over time as the skin pulled in between her ribs when she took a breath, and as much as I wanted to ignore her symptoms, there was no question she was struggling to breathe.

Even though I was exhausted from a day of waiting and worrying about Ren (why sitting in a waiting room doing nothing is so darn tiring, I'll never know), none of us would get a good night's sleep unless I had Pink checked out. So, two hours after coming home from the hospital with Ren (who was now loopy from anesthesia and pain meds), I left him in the care of my folks and headed back to the hospital with Pink. We checked into the ER at midnight, true Pink P fashion, she was fine by the time the doc made his way into our room. Thankfully, he gave her a couple of breathing treatments, dosed her with a steroid for good measure, and sent us on our way. It was 3:30 am.

By the time we got home it was 4, so I slept for two hours and rolled out of bed with my 6 a.m. alarm to start all over again.

Thursday, September 4, 2014

I Feel Like This

This morning, I snuck into the shower for about 7 minutes while the kids were finishing breakfast and getting ready for the bus. When I got out, I found this:

Sky had folded it into an airplane and slid it under the door. I threw it away (since I am always finding airplanes lying around but never notes folded into airplanes). Fortunately, Sky persisted until I saw it.

And it kind of blew my mind.

We are making progress. It's slow and it's usually ugly, but we are definitely getting somewhere.

Tuesday, September 2, 2014

Bracelets for Brothers

When I started this blog a few years ago, I kind of worried that I would run out of post topics. That was before I realized that our lives, in all their insanity, have a way of keeping the interest level high. They also have an odd way of repeating themselves.

Today, I have this out again.

If you remember the a post I wrote just about 10 months ago, you know that this means Ren is headed in for another surgery. It's an odd kind of life when major surgery becomes old hat, but that's where we are with it. Today, he has another spine surgery, but this time, instead of his lumbar spine, they will be working on his neck. Supposedly, this is easier and the recovery is faster. For now, all we are thinking about is the liminal space between now and whatever comes after.

In case you're wondering, I'm wearing this.

Some surgeries I've opted for the responsible-adult look. Most, I've opted for comfort. Usually, this includes an inspirational t-shirt of some sort. Today, I thought I'd go for irony. It's funny how irony and humor work best in the midst of borderline tragedy. Maybe I should've been a writer.

Every day, now, I also wear this:

I bought this bracelet on June 23, 2014 at a department store near Kyoto station. It was Ren's brother's birthday. It was also the day he died. Two and a half months have passed since then, and given our distance as well as the surreal way in which he passed, I think neither Ren nor I are any closer to believing it. The bracelet helps me process it just a little.

Weird, I know.