Awards Day

Awards Day gets me every time. Part of it, of course, is that school is ending, leaving a vast unknown ahead of us. Before I had kids, I wasn't great with change. Then I had a kid with ASD, and change is even more anxiety-provoking. Besides the yawning abyss of summer vacation immediately before us, I also know that most of what we accomplished during the school year will need to be re-accomplished come August, and the thought of this makes my heart race.

So maybe I don't always go into Awards Day with the best attitude. I mean, I appreciate the idea of rewarding accomplishments and noting things that are notable. Thing is, my kid isn't going to get most improved. He will probably never be the best citizen in the class. And, his Christian attitude is easy to miss when it's camouflaged by his personal space issues and his tendency to say whatever's on his mind regardless of whether it's appropriate or not. He won't even have perfect attendance since he misses an hour every Wednesday for speech and OT (even though we get up extra early that day so he can get most of it finished before his classmates are even done with breakfast).

Sky's accomplishments are no less noteworthy than his classmates', though he will probably never be rewarded for them. He interrupted his teacher less this year. He had fewer meltdowns and panic attacks. He started to better grasp the concepts of personal space and turn-taking in conversations. He didn't hate school.

I know I'm supposed to take solace in the fact that he's making progress, but it's still hard to sit through Awards Day and not daydream about how things could be different. Part of the time, I find myself wishing Sky's struggles didn't distract from his learning experience, and part of the time I wonder if he has some hidden untapped genius like the Indiana kid who turned out to be an astrophysicist. I know I'm being ridiculous and that I just need to keep encouraging Sky's strengths and helping him overcome his weaknesses, but sometimes it's hard to stifle those thoughts especially when award-day activities slip from the first hour into the second one.

Fortunately, it seems like whenever I find myself obsessing about these things, Sky turns around and does something that reminds me we're doing okay as his parents.

Today, it was this:

In case you're wondering (if you aren't now, you will be by the end--trust me), he hijacked the Mary Engelbreit stamps I had in the garage sale pile. Of course, you will have to get to the end to find out why the robot got an "F" on his attempt to rule the world. And, I know some of you probably think I should stop posting these stories by my 8 year-old, but you see what he wrote in red. How can I say no to that?

I love two things about this picture:  the sense of perspective and motion, and the fact that the guy in the picture is making a Japanese sound effect when he flies through the air.

The good news is the robot seems to have an on-off switch. The bad news is that I have no idea how Sky knows the "I believe I can fly" reference. 

Some of this feels vaguely like Iron Giant, which would explain a lot. But not everything. I mean, where does he get this stuff? We don't let him watch much that's PG even, and besides one of the Star Wars films, he's not seen any of the stuff most boys his age have watched.

This is where the story initially ended, but I had more work to do, so I encouraged him to keep going. You can tell me whether you think it was a good idea. Also, in case you're wondering, the X's on the eyes are never a good thing.

More X eyes and smashed buildings. 

Notice the bird on this page and the one before it?

I kinda love this alien. It's as if he's a cross between Gumby and the Marshmallow Man from Ghost Busters.

But he's totally bad ass.

Even when running away.

Of course he was. 

Of course he did.

Of course they did.

I had to ask about this one. Apparently this little robot can only shoot from his feet. You'd think that might be a disadvantage.

But it turns out it's not.

I don't know about you, but I think the ME illustrations might add a layer of meaning that wasn't entirely intended.

Before I had a chance to post this story, Sky went to speech and OT and wrote this addition. I really heart it on a number of levels:

About the Author 

Sky grew up in [small town, state] with his family. He loves robots and is always curious about how they work. He loves to look at the detail in explosions. He likes to hear them too. He also loves to build and draw; that's why he made this book on June 3, 2013. He also has autism. He never lets autism get in the way of things, even though it's hard sometimes. Autism has made him really good at some things too, especially drawing. He made more books and comic books, like "The Wagon" and "The Wagon 2 Weirdo." He's very good at origami. His dad named Ren is Japanese. His mom Moe is American. He lived in Japan for a few years when he was young. He loves the trains in Japan, almost as much as he loves robots!

An Unbecoming Post in Which I Feel Sorry for Myself

There are probably thousands, if not millions, of ways life has not gone how I thought it would. And, for the most part, I've learned to let go of my expectations since things tend to turn out way more fun and interesting than how I imagined them anyway.

I mean, I didn't expect to spend most of my life in the Midwest. I didn't think I'd be a stepmom or end my tennis career with a torn ACL. I didn't expect to have a kid on the autism spectrum or to deal with life-threatening food allergies.  I could go on forever (but I won't) about all the things that I didn't see coming. I will say, though, that even when things haven't gone like I thought they would, something better has happened instead. I'm not a huge quoter of scripture, but I've often felt my life with Ren has been filled with the "immeasurably more than we ask or imagine" of Ephesians 3:20 (which happens to be the bible verse used in our wedding message).

Having a kid on the autism spectrum stinks, but it's also really interesting. Sky sees things so differently that it's kind of like living with someone on a never-ending trip. He's one non sequitur after another. And his quirkiness is often just enough to keep all of us on our toes.*** Despite his challenges, I'm sure Sky will become a functional member of society. Who knows, given the way he sees, hears, and conceptualizes the world around him, he may even do something amazing.

In other words, I have hope that Sky's ASD (and Pink P and Stow's allergies and asthma) are manageable and ultimately won't define them. But what I don't have much hope for is Ren's back. Ren's back is the shits, you guys. I don't think I'm exaggerating here. He can't stand for longer than a minute, and he can't walk more than 30 feet unless he's pushing something. He looks like a little old lady with a walker, which would be cool if he was old and if we didn't have three small kids. I mean, really.

Obviously, this means he also can't lift, which is totally awesome when facing an inter-state move. Yeah, it's inconvenient, but much worse than that is the fact we are staring down a much different future than we'd imagined. Ren and I started dating because of our shared love of hiking and camping. He convinced me that I wouldn't regret marrying an older man when he ran to the top of the mountain to check out the view for me (and then ran back down to tell me we should check it out together, which we did). I'm guessing we're never going to hike or camp again, so our kids will never know that part of our lives. Ren can't run or do judo or any other physical activity he used to love. He can't fly or drive for long distances. He can't give the kids piggy back rides or lift the baby. There are a lot of things he used to do that he won't be able to do any more, and it's heartbreaking to realize that the kids will never know those things about him.

Most days we try not to think about all we have lost since the back went south nearly 2 years ago. But with each back surgery (two so far) and the subsequent deterioration of his overall condition, it's hard to stay positive.  I'm not sure what to say to the kids when they tell me they can't remember Daddy ever being able to swing them around and carry them on his shoulders. All they know now is the daddy who can't come to their dance recitals and gymnastics demonstrations because he can't stand to sit for that long.

We haven't given up, not by a long shot, but I'm afraid it might be time to entertain the possibility that this is as good as Ren's back is going to get. And, I'm sure one day I will look back and be able to see that "immeasurably more" that I so wholeheartedly believe in. I'm just not quite there, yet.



***I'm not saying I'm glad he's autistic, I'm just saying that even though having an autistic kid is hard, it also leads to some really fascinating conversations.