Sunday, August 30, 2015

Summer Lets Go

We were saying our goodbyes. The packed van lumbered down the quiet highway on a Saturday evening. Most people were already where they wanted to be: home, already in the routine of school and fall, or away for one last splash of summer leading up to Labor Day.

We danced in that in-between world, headed south for the long trip home, twilight falling, memories dancing in those happy places in our minds -- the kind that keep you warm and make you smile in the midst of a gray November day or deep New England freeze. The echoing of loons off the lake as night falls. The hum of a motor boat far in the distance; someone fishing, slowly, thoughtfully. The sight of looking up, up, up at trees that dwarf us. Happy shrieks and splashes as someone jumps off the dock. Just-picked berries staining fingers. Ice cream dribbles. Crickets chorusing.

We were on Interstate 95 heading faster and faster away from Maine and back to the real world, when we noticed people gathered on one of the highway overpasses, looking south. A few miles down, there were more. Some had flags. On some bridges, there were ambulances and fire trucks; first responders with their lights flashing. Down not far from the Maine border, two firetrucks had a giant American flag hoisted from the middle of their raised ladders. On another, a family hung a large flag over the side of the overpass.

Then I remembered: the week before a civilian contractor from Maine had been killed by a bomb in Afghanistan. He was my age, with a family. This was going to be his last tour in Afghanistan, and he had planned to return home to become a state trooper. Now he was coming home for the last time, and as darkness fell, Maine gathered to say goodbye and pay their respects.

We drove and looked up again and again at the solemn crowds and I marveled at the melancholy that is summer, that is life. No sweet thing lasts, not in this world. There are always goodbyes. There is always something precious in the dark, if we look hard enough.

I thought of summers long ago, of driving home on this very highway at the end of summer and seeing people on the overpasses, waving to the travelers, waving summer goodbye.

I thought of the friend last year who lost her fight with breast cancer; about her three children starting another school year without her.

I thought of this man, as we saw the hearse, the processional go by, and wondered if his family felt any measure of warmth, any comfort as they saw so many stand to pay tribute in the growing darkness.

I looked ahead towards home and the promise of new teachers and soccer and books and challenges and how there are very wonderful things about fall in our little corner of the world.

We reached the green bridge and the last of the light illuminating the Piscataqua River and the smokestacks of Kittery, Maine and Portsmouth, New Hampshire. Anna didn't see the smokestacks. "It's so beautiful!" she oooed.

Chloe caught sight of the moon, full and orange, and began to laugh. For miles, they kept up a game of peekaboo as the moon disappeared behind trees and when we changed direction. "Moon! Moon!" she kept calling out.

On the radio, Coldplay was singing "The Speed of Sound:"

Look up, I look up at night,
Planets are moving at the speed of light.
Climb up, up in the trees,
every chance that you get,
is a chance you seize.


And I tried not to cry at the people saying, at summer saying, goodbye. I tried to remember that love and loss and change are part of this finite world we live in. I tried to remember it is fruitless to hold on to the past or fret at the future. I don't, in the end, have the control I thought I had.

What I could do, I knew, was to listen to the sound of Chloe laughing at the moon. To love every memory, to make all my plans, without holding so tight that I couldn't fully see what was right in front of me.

Godspeed, Corey Dodge.

Saturday, August 22, 2015

Thank You, C.S. Lewis

"Mama, how did Aslan kill the witch?"

"He pounced on her."

"But how did he KILL her?"

"I'm not exactly sure."

"Can you go look it up on the computer?"

Which is why, recently, I was sitting down and Googling Aslan and the White Witch (a.k.a Jadis) from The Lion, the Witch and the Wardrobe.

The Chronicles of Narnia have been huge in our house this summer. Huge. They've been a godsend, actually: serving as that one thing Ethan decides to latch on to do when he can't play Wii, have water play, wrestle Chloe to the ground (well, not literally), or get into other general mischief.

For the most part, I couldn't be more delighted. I love The Chronicles of Narnia. I love C.S. Lewis. I remember being surveyed once for some kind of corporate work activity and being asked which person, living or dead, I'd most like to meet. He immediately came to mind.

I love C.S. Lewis because he was a thinker, and a believer (and former atheist). And a writer, of course. He asked hard questions. He struggled at times with answers. He wrote about the process of struggling, of grieving (the loss of his wife, never mind the general suffering in this crazy, mixed-mixed up world).

I discovered the seven books in the Chronicles of Narnia when I was about Ethan's age and fell in love. The stories weren't written to be complete Biblical allegories (although some are very obvious) but demonstrate, in creative ways, many Biblical truths, especially about the nature of God. Not to sound sacrilegious, but there have been times in life when I've understood God better through these books than in the pages of the Bible.

As a plus, they're really good stories. At this point I must have read each book 50 times. Ethan's probably read them 50 times this summer.

Which is why my tidy little collection of Narnia books, stored in the wooden box, are now falling apart. Let's call them well-loved. A number of covers as well as backs have come off. I need to get serious with some tape or something at this point.

But he's reading, and understanding. And if he doesn't understand, he'll ask. He wanted to know what a "shrill voice" was, or "speaking sharply." He asked what the word "empress" meant. Sometimes he'll even ask about different plot points and why a character did this vs. that.

Most of all, he loves the battles, and he loves good vs. evil. He thinks it's pretty darned awesome that Jadis used a Deplorable Word to wipe out everyone on her planet. (I try to throw in there at these times that Aslan, the "good" lion, is even more powerful than the witch.) He likes reading about sword fights and bows and arrows and evil being stomped out. Last year in school they had to write about their favorite character in a book. Ethan, who at the time had only had the books read to him, instantly chose Aslan, because "he can do anything."

The other night at dinner he quoted a paragraph almost verbatim from The Lion, the Witch and the Wardrobe -- the pivotal scene where the witch kills Aslan -- while Anna and I sat there, mouths gaping.

Yeah, sometimes he likes these fighting parts a little too much. Online, I found one other person in the Google universe who also wondered exactly how Aslan killed the witch. No one had an answer for him.

"Mama, but HOW did the witch die?" I heard for the umpteenth time.

"I don't know, he pounced on her, like a lion does."

"And...?"

"And he ripped at her throat until all the blood came out of her body." I can't believe I'm doing this, I kept thinking.

"And then her heart stopped beating?"

"Yeah."

"But HOW?"

Sigh.

I'm sure some of the higher level themes of the books are flying past Ethan's head right now, as they did mine when I was his age. But I'm thrilled to be able to share something that's been so significant in my life with my own kids.

Even if right now we spend a lot of time discussing blood and Deplorable Words.

Sunday, August 16, 2015

The Talk

And just like that, we took the plunge.

We were in the car. This was a month or two ago now. I'm not even sure what we were talking about, but suddenly Ethan asked, "Why is Uncle Andy not like a regular grown-up?"

And I knew. I knew I couldn't tell him just about Uncle Andy and autism. I had to say something more.

"Well, Uncle Andy has something called autism. His brain works differently than ours, and it makes certain things hard for him, like having a conversation."

I hesitated. "Do you know you have a little bit of autism?"

"I do?"

"Yes. Your brain is wired a little differently than the average person, too. See, Uncle Andy has a lot of autism, which makes things really hard for him sometimes. But you just have a little bit. So sometimes your autism makes it hard to do things like have conversations with people. But other times it helps you to be super good at things, like math problems, or memorizing things, or having really good hearing or a sense of smell."

"Oh."

I waited, but we were apparently done talking about autism for the time being.

For the longest time I'd wondered how and when this type of conversation would take place, and like so many other situations I've learned there are some things in life you can't craft in advance or agonize about too much. You just know when the time is right.

About the semantics here: Is he autistic, or does he have autism? Oh, I don't know. There's so much talk about this. There's been a lot of mud-slinging, actually. I'm at the point where I really don't care. We'll see how it goes. We'll see what he prefers. We'll see if it even matters.

The time will come (it has to, even if things seem far from that now) where Ethan is going to get mad at autism. He might wonder why he struggles in certain areas and others don't, or be hurt by others teasing at his sometimes unconventional ways of communicating and/or playing. This is why I've decided to play up this whole "autism superpower" angle. Not because I want to douse my child with accolades and give him an exaggerated view of himself. I just want to make sure he remembers when he's hurting that there are some pretty cool things that he can do that don't come easily to the average person. Like memorizing every kid in the class's reading level.

Or scripting. It will never cease to amaze me how people on the spectrum can extract a random line from a book or movie and drop it appropriately into conversation. I talk about this all of the time, but it's because I'm darned impressed.

Ethan is still working on fine-tuning his scripting skills. The other day he bashed Anna in the mouth with the swing (not-quite-accidentally) and then claimed we had to take her to the hospital because she was "particularly harmed!" After some digging we learned he had borrowed from a Ramona book (he's quickly becoming a Beverly Cleary fan, too!), although what her big sister had said was that she was "practically dying of hunger," not "particularly dying."

"Yeah, you're gonna have to work on that superpower a little bit," I joked with him. It mostly went over his head, but I don't know. He is taking some of this in. The other day I asked why he was getting so worked up about...I don't know, I can't remember. It had something to do with a TV show. Bottom line, he responded with: "WELL, I have autism!" As if that explained everything.

This will be a fine line to dance, between not encouraging him to be the victim who blames everything on a condition while not expecting him to always see or respond to situations in a typical way. I'm sure we're going to mess this up at times. I'm just glad that for now, he's gaining a little glimmer of understanding. And we're surrounding him with lots of love, and laughter (when we can!) in the process.

Wednesday, August 12, 2015

What My Son Is Teaching Me About "Religion"

Ethan had just finished Vacation Bible School a few days before when he developed an annoying rash. I'm not really sure what the problem was, because I couldn't see much, but he kept talking about how he was itchy. "I keep praying to God to take it away, and it's still there!" he shouted out at one point. "Why isn't God listening?"

I knew, I just knew, he was repeating something he had heard at VBS. Something about God hearing our prayers, about believing and God meeting your needs. People on the spectrum are very literal. Tell them to pray and God will answer, and they will pray and wait for an audible voice. Immediately.

It's amazing the way autism can help strip everything you think you believe down to the bare bones and make you really think.

I know I have some friends (and readers of this blog) who consider themselves "non-religious," and many friends who are whole-hearted Jesus-followers. This post may bore (or anger) both camps. So for the three people left reading (and of course, myself), I'll continue.

There are those who grew up with a kind of religion based purely on fear and duty. Do this -- get that. Don't do this. Or else. Pray this. Say that. Get your ducks lined in a row and perhaps you'll be spared God's judgment.

This is not the kind of faith upbringing I had, however. My roller coaster journey through Christianity could literally fill a book, but for the sake of time let's just say my brand of religion tended to scoff at bad things ever happening to people who really had enough faith. My upbringing looked down at staid, stiff churches that only sang hymns with congregants who struggled and seemed to want to live in defeat; in poverty. It was false humility, we'd claim. God WANTED us to be prosperous...God didn't send horrible diseases on people...we could have faith and move mountains and do amazing things!

Maybe it's not what everyone got out of it, but I grew up with a vision of a Santa Claus God. But what happens if you have a child-like faith and Santa doesn't show up?

I can remember being Ethan. I can remember sitting in church services while everyone prayed for a sick person, and then hearing that the person died.

I felt crushed. I wondered why no one else seemed that phased. I was a kid. I was spectrum-like in my belief that in some instances there should not be gray areas. Not when it came to explaining why a good person had died, even though we had the faith. We followed the scriptures? Why?

I inwardly asked the questions that Ethan blurts out now, demanding answers. This is a place where many of us have been. And many walk away, because the whole thing, indeed, feels like a sham.

Over many, many years, I've come to the realization that I don't want to walk away. I just want to change my perception. I've begun to see that through all of my very valid questioning (I believe with all my heart that questioning, doubt, even disappointment with God is not always a bad thing), what I was really asking was, "Why wasn't God following my formulas?"

Most people on the spectrum love formulas. They love equations. A plus B equals C. But the Creator of the Universe can not be captured or predicted. The moment I can explain God, I've made Him something less than God. I've grafted my own god.

For all of my faith talk over the years, I've learned that sometimes maybe we don't get what we want. And we might never know why, in this life. But we can always learn something. We can always grow. There is always something that can be redeemed, and God can be glorified.

There is something utterly magnificent and freeing about throwing our arms up in the air and saying, "You are God and I am not. I'm going to believe whether you do everything I want you to, or not."

"Ethan," I said to him that day. "Sometimes we pray and God heals. There are miracles that have happened that no one can explain. Sometimes God wants us to wait. Sometimes we need to learn patience. Or maybe perseverance. Or maybe it's that we need to face our fear about going to the doctor to have something checked out."

I wondered how much he listened until the other day, when I was rushed and stressing because I couldn't find one of Chloe's shoes. "Grrrrr!" I was just about growling, until Ethan said simply, "It's okay, mama. Maybe God is trying to teach you something."

The me of my past would shudder at that...What wrong thinking, that God would allow trouble, that you were meant to go through something difficult!

Instead I had to laugh. "Maybe I need to learn to calm down," I didn't need to pray for shoes to instantly appear. What I needed to do was slow down and take a deep breath.

I still believe in a miracle-giving God. Just not magical thinking. Not the Santa Claus God in place to meet my every whim and remove any chance of discomfort. I hope and pray my kids will do the same.

It's not about what God can do for us. It's about who He is. He's not a gumball machine. He breathed galaxies into existence. He's the breath in my lungs; the lens through which I see. I'm learning to stop ordering Him around...to know it's okay to be small, and it's okay to not understand. We are just the littlest yet utterly valuable sparks in His infinite story.















Saturday, August 1, 2015

Why Video Games are Good for My Child

They had just arrived home from a weekend in Maine with their grandparents and cousins, and the kids were clamoring over each other to share how things had gone. Somewhere in-between the stories of tubing on the river and tasty s'mores, Anna mentioned they'd played a lot of "boys against the girls" games. In the cabin they'd had a boys room on one end up the upstairs and a girls room on the other, and had spent a good deal of time tormenting each other (in good fun, of course!).

"And you should have seen Ethan!" she exclaimed. Ethan had a shy smile on his face. "Sah-nny Screw Attack!" he said in a little vicious voice, and Anna burst out laughing again.

Puzzled, I waited for more details. Apparently, the girls (Anna and her six-year-old cousin) had been leaving all sorts of mock-threatening notes on the boy's door about what would happen if the boys (Ethan and his nine- and four-year-old cousins) came into their room. So at one point Ethan burst into their door and shouted "Sah-nny Screw Attack!" and started mock-hitting them.

Later, there was "Sah-nny High Jump Boots," in which he'd bounce high up and down the catwalk between the two rooms, and "Sah-nny Roll Attack," in which he'd (of course) do summersaults towards their room.

"What do those things mean?" I had to know.

"They're from Metroid," he answered. A game on the WiiU. "They're different attacks you can do. The Sah-nny is from Charlie and the Chocolate Factory. Remember the fat shopkeeper that calls Charlie 'Sonny,' and I wanted to know what that meant? I changed it to Sah-nny."

Ahh, now I understood. As in so many other instances, Ethan had mined a video game (and one of his favorite books!) for ideas, and they'd helped him figure out a fun way to play with everyone.

I don't think I need to go into detail about how much Ethan adores screen time. Let's just say he has told me "Screen time is what makes me happy" and "I want to go to heaven so I can play Wii forever."

It's hard when the activity your child adores most is becoming more and more demonized. The parenting magazines and blogs are all wagging their fingers, telling me how my child needs less time with electronics, how terrible it is, the way kids are so "plugged in." It's hard when, even though I know my kid isn't quite a typical child, I'm still pounded again and again with the old adage "just give them time away from the screens and they'll come up with something to do" or "all kids can be creative if you just give them time and don't turn their brains to mush with electronics."

I hate to say it, but most of the time, that's not how Ethan's brain works. His screen time actually gives him the ideas he has trouble coming up with on his own.

Ethan has made some wonderful, wonderful strides since first being diagnosed with autism, but one thing I've learned will most likely always be "non-typical" about him is his play habits.

I have tried; oh, how I've tried. Since he was two I've gotten down on my hands and knees on the rug with him and encouraged him to play. I've attempted to model play ideas (animals in the farm; building with blocks; superheroes, etc.). I've provided a range of toys and for the longest time worked to discourage electronic ones. I've offered incentives for playing; I've made lists of play possibilities when he seems "stuck."

What I've learned is that he just.doesn't.play.like.a.regular.kid.

He loves books. He loves board games. I'm so grateful for that. He likes to think of one thing to do with Legos and build it over and over. He will sometimes do puzzles or build circuits or Kinex or some of the things you'd expect a kid on the spectrum to like. He adores making waterways in the backyard with the hose (creating big mud pits) or tying up different areas of the house with string or whatever else is on hand.

But what we've learned is that Ethan's brain when it comes to play is like a switch. If he's not really motivated to play with a certain toy, there's no real way to turn the switch to On. And no amount of modeling, cajoling, or banning screen time helps to turn the switch On.

So that leaves us with what so many call "the easy way out." Screen time. I know the conventional advice. I try to follow it. We can see the way, when we allow Ethan to indulge in very long bouts of screen time, it becomes increasingly difficult to tear him away. The obsession grows.

At the same time, I've become more lax, I have to admit. I think it started when his developmental pediatrician, of all people, said he just might need more screen time than the average kid. But it's not just that. I think it's when I realized that for Ethan, video games aren't just games. They provide a rich landscape for him to harvest and use in other ways. Best of all -- they help him find a way to relate to others he might not have had, otherwise.

There still need to be limits, of course. He must leave the screen and engage in real life because, well, that's real life. And most importantly we have to be careful about which games he's playing so that he's not picking up the wrong kinds of ideas. But slowly, I am letting go of my play expectations...and as so often when I do, Ethan surprises me. I love when our kids do that.