Learning to Adapt, 2.0

Today marks three weeks since Ren's last back surgery. It feels a lot like something from Swiss Family Robinson as we stitch together life without all of its parts. Recovery is happening, but it's happening very slowly.

Glacially.

So, we make adjustments, and I try really hard not to lose my schmidt.

Take cleaning, for example. Despite the fact that EVERYONE KNOWS that vacuuming is possibly the worst thing you could do with a bad back, Ren did not. He was crestfallen when the doctor told him  he had to lay off the vacuuming for at least three months. And, the only reason it was mentioned at all is because I specifically asked, "So, can he vacuum after surgery?" The doctor looked at me like I was a complete idiot, but sometimes you have to take one for the team and ask the stupid questions so your spouse will finally realize that YOU CAN'T VACUUM AFTER YOU'VE HAD BACK SURGERY.

I would love to hire a person to help us clean while we are one parent down. Ren, being the parent down, and also the parent stuck at home, would rather not. Now I know some of you will say I should do what I need to do to survive this. But I also have to be able to survive grumpy Ren, and nothing makes him grumpier than back surgery and paying someone to do something he thinks we should do ourselves. So, we both came up with plans. His was to have the kids each vacuum a room using a vacuum their size. Due to his vacuum fetish, we actual have enough properly-sized vacuums to do this.

I don't know if I should admit that.

Action shot -- blurry because obviously I am incompetent.

Mine was to buy a Roomba. Now, while Ren's plan instills in the kids a strong work ethic and a sense of team work. Mine is shinier. And electronic. Plus, it has had the completely unexpected bonus of being the perfect playmate for our  mischievous 2 year-old. Stow can't get enough of it. If he could figure out a way to get it into his crib, I'm pretty sure he'd sleep with it next to his pillow. I have to admit that I get more than a little pleasure watching him chase it around the room, dance with it, and put small toys on it so they can go for a ride. Unfortunately, the Roomba is just about as spastic as Stow, so Ren's plan definitely worked better in terms of actually getting the carpet clean. And it did make the kids slightly more aware of the need to help mom out. So now they also clean the kitchen and help with the laundry. (And, no, I am not, not under any circumstances admitting that Ren was right here. If that's what you took from this story, you've obviously misread. Ooo, look, a cow on a vacuum.)

Sky insisted we name this ibot. Short vowel sound, thank you very much.

The other big adjustment we've made post-surgery is that Stow has started going to daycare. Ren's lifting limit is 20 pounds. He's also not allowed to bend, twist, or squat. None of these restrictions are conducive two wrangling a 30+ pound 2 year-old. Of course, Ren was totally convinced he'd figure out a way to take care of Stow despite the fact he can't walk, and, you know, do anything. I, on the other hand, was totally convinced that if I didn't find some place to put Stow while I work, we'd be headed for another back surgery. Fortunately, there's a great co-op right on campus, and they were kind enough to let Stow come hang out until Ren is further along in his recovery.

Which is awesome. Except it's not.

I mean, I didn't realize I wasn't actually ready to have Stow in daycare until it was too late.  He made it easy for the me the first few days, crying as I walked away, begging me to stay, acting as if he was sorry to see me go. But, by the third day, he was over that. Now he just takes his Shinkansen thermos and his zebra lunch bag and doesn't even give me a second glance.

Stow's first bento.

To drive his point home (you know, the point that he doesn't really need me at all), Stow decided to do two things at daycare he's never done at home. He started using his own name and he started potty training. I'm not going go lie, I'm thrilled to know he actually knows his name. He's been slow on these kinds of things. But the potty training? I think he's just trying to make us look bad. The first day, when I dropped him off at daycare, they asked me if I wanted them to put him on the potty. Sure. Why not? We hadn't really gotten serious about the potty training thing, what with the back surgery and with the fact that Stow had all the urinary tract and digestive problems. But, what the heck? If they wanted to put him on the potty, I certainly wasn't going to stop them. I did not expect Stow to actually USE the potty, though.

Has he no regard for my feelings at all?

Obviously not. He's consistently used the potty at daycare since the very first day. Of course, at home, he screams when I try to take off his pull up and weeps when I put him on the potty. He's totally playing me and then rubbing it in. I mean, he even used the potty for the high school girls who work at the drop-in care place at our local gym. I'm sure he's doing it just to spite me. Or maybe he's mad at me for making him wear Pink P's leftover princess pull ups.

I guess I could see that.***

Action shot.

*** Actually, he loves the princess diapers as much as the "boy" diapers. It just doesn't make for as good of a story.

Sigh

About a year ago, I wrote a guest post for Rage Against the Minivan (which is a great blog, by the way), and then I kind of forgot about it. It was posted last week, when Ren was still in the hospital. The title was "What I Want You to Know About Having a Child with Austism." In it, I was trying to help people understand the hard parts of having a kid with ASD because, frankly, sometimes it's really hard. If you've been reading this blog at all, you know that life with a kid on the spectrum is also sometimes crazy, sometimes fun, sometimes heartbreaking, sometimes very educational. In other words, having a kid on the spectrum is very cool and it's also very hard. That's what my post was trying to express. You can read it here.

I've been surprised by some of the comments, especially the strong reaction to my use of the word "lucky." Apparently, it's not possible to say someone is lucky without somehow implying that I am unlucky. I guess that makes sense. But, that's not actually what I was trying to say. I was trying to say that people who don't struggle with ASD on a daily basis should realize life is probably easier for them (though, as you can see, this is a much wordier sentiment than saying they're "lucky"). This doesn't mean that I don't think other people struggle or that I don't acknowledge other kinds of diversity and difficulty in the world. Do I wish Sky didn't have ASD? You bet I do. Life is so much harder for him than for his peers. He struggles daily to figure out how to fit in and how to make good choices in a world he doesn't quite get. Do I love him any less? Of course not. I love that kid like crazy and wouldn't change anything about him except for the parts that make life so hard for him. Isn't it possible to have these kinds of complicated and nuanced feelings about life with autism without being self-loathing, un-accepting or un-supportive? I think it is.

One person commenting hoped my son would never see the post. I don't feel that way. Sky knows how much we love him, how much we support him, and how much we all wish ASD didn't negatively impact his life. He also knows we think he's a super hero and that we are extremely proud of his ability and willingness to work hard and to teach others about the good and the bad of being on the autism spectrum.

If you haven't seen it already, please go read that post and tell me how I could have/should have said things differently to make my point.

And then tell me whether you think I should just give up on this whole internet blog thing altogether.

This Totally Made My Day

This is Jack. He's the son/grandson/nephew of old friends of mine. He's also nonverbal and autistic. His parents hadn't heard him produce language unprompted in the more than seven years since he stopped talking (when he was one). Earlier this week, they heard him repeating this phrase and thought it was just gibberish. And, then they listened closer and realized he was singing Katy Perry's "Roar." How awesome is that?

I don't know about you, but Jack has totally made me a Katy Perry fan.

Oh, and if anyone happens to know KP, please introduce her to Jack!

Follow-up 11/15/13:

Jack's story has made it's way to the national news. Still no word from Katy Perry, though.

Click here for the article about Jack on Today.com.

Halloween Recap

After two slightly "heavy" posts, I've decided to return to fluff and tell you about our Halloween. You can read my predictions here for background.

So, Sky went to school on Halloween with his Minecraft Creeper shirt on but no costume. Going from Catholic school to public school, he was completely unfamiliar with the Halloween parade. I tried to explain that everyone else would be wearing a costume, but no matter. There was no way he was wearing the costume to school.

The rain made the day much more complicated than it needed to be. Sky and Pink go to school in buildings that share a playground but are in no way connected. So, day-long rain meant the kids wouldn't parade in one long line around the parking lot but in two shorter lines in separate buildings at. Exactly. The. Same. Time.

Perfect.

The parades were both scheduled for 1 p.m. Both kids wanted me there, so I had to figure out how to make that work.  Over breakfast I'd told the kids that I'd go to see Pink first and then Sky, hoping that somehow they'd be staggered.

They weren't.

Despite the fact each school has more than 200 kids, Sky and Pink paraded literally simultaneously. Something I discovered only after I stood in a ridiculously crowded school hallway to watch tens of  preschoolers and kindergarteners shuffle past so I could high-five Pink P before running through the rain to the other building to try to catch Sky. I missed him. But I did see plenty of other kids sporting the same costume he refused to wear. This did nothing to relieve my anxieties about how he was handling Halloween. So, I invited myself to the class party and was deputized as a parent volunteer. When I got there, I encountered a very sullen Sky. Turns out he was anxious about all the forbidden food floating around the room, anxiety no doubt heightened by the fact I'd let him eat a Halloween cupcake at Cub Scouts a few days earlier and he promptly threw it up. After I double checked a few labels and reassured Sky that he could eat some of the stuff, he was much more cheerful.

By the time he got home from school, though, he had 102.5 fever, which probably explains most of his Halloween funk. It also answered the question once and for all of whether he would wear the costume and hit the streets for candy. He opted to keep the cardboard head on after pictures and pass out candies (and no doubt germs -- sorry other moms on our street) to trick-or-treaters. I know I should have banned him to his room, but I didn't have the heart.

As part of the Halloween festivities, we carved our first pumpkin in years. Sky retold the saga of our last pumpkin which amazed me both in its accuracy but also because I didn't realize four years had passed since we last carved a pumpkin. Turns out I was more traumatized by the fate of our last pumpkin than I thought.

Ren hasn't lost his touch. Though this one looks a lot like the kuchisake-onna from Japanese urban legend. Ren claims this was intentional, but I think he may have been trying to figure how to carve such an average-sized pumpkin with such an oversized knife. The kids loved the pumpkin, though. Plus, we have an awesome motion sensor light that makes the pumpkin scream and bark at passers by which meant that most trick-or-treaters didn't have to ring the doorbell because we could hear them scream.

Pink, Stow and I made the candy-gathering rounds in the rain. Neither seemed to mind. Stow acted like an old pro, announcing, "Hi-yo, Tricky, Thank you much!" to anyone who would listen (and even those who wouldn't). When we got home, no one, and I mean no one was going to pry his cold damp candy bag from his hands. Fortunately, all three kids seem to have a very short memory because the candy got put away and no one's asked about it since. Maybe they've just resigned themselves to their destiny of healthy eating.

I love this picture. Somehow this is what it's like to do Halloween at our house.

The Ring

During the first two years of our marriage, Ren lost his wedding band twice. At the time, it seemed so symbolic.

Before I can tell you that story, I need to tell you this: most Japanese men choose not to wear a wedding band. Apparently, they think it seems ostentatious. I'm not sure this is true, but I do know that you won't figure out a man's marital status by looking at his left hand. I also know that, while many Japanese women friends of mine received stunning diamond rings for their engagements, they placed them in safety deposit boxes instead of on their fingers. So, if we really want to talk about symbolism, we have to give Ren props for deciding to wear his wedding band at all--it certainly symbolizes a willingness to be different than the men around him.

Then Ren's wedding band just disappeared. It happened one day about 4 months after our wedding. Ren was mystified and spent the next several days looking for it. I couldn't believe he'd lost it--then again he did have a bit of a habit of losing expensive things (his wallet, his watch, cash), so I could totally believe it. It's hard not to read too much into your spouse losing his wedding band, though. So, I bit my tongue and let him search.

After days of searching, he finally dug it out of the ashes of our fire pit. How he figured out it was there, I'll never know, but when he finally uncovered it, it was totally black, coated with soot. Never have I been so glad we went with the platinum bands instead of gold. Gold would've melted in those flames. Once Ren wiped the band, it looked good as new, maybe even better.

The next time he lost it, we were spending our first winter in the Midwest. For a guy who grew up in southern (western) Japan, the snow was a totally new and somewhat unwelcome phenomenon. The night Ren lost his ring, we had 6 or 8 inches of fresh snow, and as he went to unlock the front door, the ring slipped off his finger and into a snow drift. It melted into the snow so quickly, there was no hope of finding it. Ren had to wait for the thaw to find it under a bush near the front porch.

After that, we had the band re-sized.

Since then, Ren's only taken the ring off three times. Each time has been for a surgery. In the 15 years we've been together, Ren's had six major surgeries: three shoulder, one eye, two back. Since the ring was re-sized, he's had three. Each time, he slips his ring off and hands it to me, and I hold on to it until he's out of surgery and recovered enough to get it back on his hand. There is no fire or ice, but holding his ring feels symbolic just the same. When I'm holding the ring, it feels like we have slipped into a liminal space--we are neither here nor there. We are waiting, wondering how our lives will be altered when the dust settles. I don't like holding the ring, but I know I am the only one who can.

Today, Ren took off his ring for back surgery #3. No telling whether this one will do the trick. We're hoping, at least, that he will regain some mobility.  Only time will tell, but in the meantime I will sit here, wearing his band on my wrist until he's ready to wear it again.

Nothing seems quite right when I'm holding the ring.

How Do I Not Fail at This?

"I don't think I want to do gymnastics today," Sky tells me as we wait for his class to start. Moments before he seemed fine, so I scanned the room to try to figure out what triggered the sudden change of heart. Then I saw William watching from the stands. William who keeps being mean to Sky at school. William who also happens to be Asian. William who has become the bane of my existence.

Of course, I say none of this to Sky, and instead respond, "What's up, Buddy."

"They'll make fun of me," he answers, without filling in the who or what or how. But I know.

Still, I ask, "What do you mean?"

"Well, last time William saw me at gymnastics, he told all the other kids."

"Really? What'd he say?"

"Sky does gymnastics."

Worse things could be said about Sky. Worse things have been said about Sky.

"Well, you do do gymnastics," I say.

"Yeah, but they laughed. And, they're wrong! Boys do gymnastics, even at the Olympics!" By now, Sky's getting fiery. And teary. And it's breaking my heart. But, I don't tell him this.

Instead, I say, "You're right. But, here's the thing: some kids are always going to be mean. And there will always be someone who tries to hurt your feelings. But, you. You are awesome, and you have already done amazing things. Be proud of who you are. You can't let anyone tell you who you should be."

I know he heard me. And understood me. But these are only words. Words from his mom who can't go out into the world with him, who can't really protect him from any of this, who sometimes forgets to be patient, and kind, and understanding.

How do I not fail at this?

At all of this. At helping a son--a son who struggles to fit in, who struggles to understand, and who is so breathtakingly sensitive--to become a confident man. At teaching my daughter not to equate her beauty and self-worth with the style of her clothes, with the color or her hair, and with the number of her friends.

I know this is an uphill battle, so I started early with my constant and not always subtle messaging:

Do what you like.
Be who you are.
Ignore the meanies and choose to be nice.
Embrace your cultural diversity.
Take joy in those things that make you different.

I know they hear these messages, but I can already see it's not really enough. My one single voice grows smaller, more difficult for them to hear, as they are bombarded with messages that tell them who they should be, what they should like, and how they can become popular. How long until my kids can't hear me pounding this drum, telling them they are so much more than any box others will try to put them in?

Oh, that we could change our society so that boys could cry and girls could fight and no one would bat an eyelash. Oh, that their sense of self worth would never be tied to what they are wearing or what sport they play or what grade they got on the last test. We are all, all of us, so much more than the ways our culture tries to define us, but how do our voices drown out the relentless messages that seek to silence us unless we choose to shout together?