Tuesday, May 29, 2012

The Monkey Bars

We had just dropped off Anna at school and had decided to take a little ride and maybe get (mamma) a nice iced coffee from Dunkin' Donuts.

"Mom, can we go to the park with the barns?" Ethan asked from the backseat. "Northwest Park?

Northwest Park is a gem. There's a playground there, and also nature trails and a nature center; a pond with frogs and turtles; the animal barn. We hadn't been there since the fall. I turned the car in that direction.

Once there, I followed Ethan and marveled. I marveled at the way he stopped and looked in the pond for fish instead of racing by. I marveled at the way he was able to tell me the scores of birds nesting in the rafters of the barn "are hurting my ears" -- rather than just refusing to walk in or trying to run away. I marveled at the way he actually wanted to feed the animals.

Two years ago I'd plotted with one of his therapists how to actually get him into the barn and to stop and look at the animals. Last year he'd go in but only wanted to look at the animals' food and water, not the actual creatures. Sometimes these days with Ethan I feel perfectly blessed to enjoy the kinds of activities most people get to do with their two-year-olds. We may be a little late, but I wouldn't miss it for the world.

We went to the nature center. I couldn't forget the day two years ago when all he wanted to do was play with the door that led to a play room off in the corner. This morning, he grabbed two puppets. I was Squirrel and he was Frog. He wanted them to fly. He wanted them to go play baseball, "and if Squirrel gets a home run Frog will give him a prize." He said Frog needed to go to the doctor because he got bitten by a dog. He wanted them both to move to new houses. He generated the ideas on his own. These were not little games we had played; exact repetitions of what he'd heard.

Outside the nature center, a sight stopped me short. The ground was white. My first thought was that the park employees had been doing some sort of sheep-shearing demonstration for a group of school kids. I thought the fluffy stuff was wool. It covered the ground outside the building and spread into the grass, collecting in mounds at the bottoms of trees. The patches of white reminded me of melting snow. I knelt down and picked some up.

They were puff balls. Thousands upon thousands of those white puff balls that had been blowing off of trees, making people sneeze; those same puffballs that Anna liked to pick up and blow and wish on like dandelions gone by.

Thousands of wishes, gathered in one spot. They smelled so sweet.

On the playground, the trees were snapped and scarred. I'd forgotten -- we hadn't been there since the October snowstorm. I'd remembered reading the park had lost hundreds of trees. The small ones surrounding the play area seemed to be clinging to life, having lost so many branches. For a moment I stared at them at them with a heavy heart.

But the essence of the park is still here, I had to remind myself. Not all is lost. It's still beautiful.

"I want to do the monkey bars," Ethan announced.

"Go ahead and try." The monkey bars were just right for a kid Ethan's age, set close to the ground. He grabbed them and hung there. I could see his little fingers slipping. In a moment, he dropped into the wood chips, laughing.

"I want to try again!" He raced back up. I thought of Anna at just his age, maybe six months older, conquering the monkey bars for the first time. She was so darned proud of herself. For a moment the words of OTs and PTs, the typed paragraphs on reports about low muscle tone and lack of coordination came swirling back to me, and I ached at the thought of him having to work so hard, extra hard, with his body working against him.

Ethan's legs were swinging back and forth as he stepped off the platform, hanging. He managed to move one hand and then the other to the next bar. Then dropped.

"You did it!" I cheered for him.

"I want to do more!" he announced. Back he went. The next few times, he dropped quickly. I could hear the physical therapist in my head. The low muscle tone makes him tire more quickly than other kids.

"Ethan, keep practicing, and I know you'll get it. Maybe next time we come," I said, trying to give him an out.

He had other plans. I watched him at the platform for the tenth time, scrapes and bruises all over his little legs from where he'd fallen on our hike the day before. Then he proceed to bite his lip in concentration, muster up the courage, and go all the way across to the other side.

You would've thought the Red Sox had won another World Series, the way I cheered and muffled him with hugs. I might have been more excited than Ethan was. He mostly grinned. But the grin said so much.

The day was getting steamy. We walked back to the car, pausing to say goodbye to the fish, frogs and turtle in the pond full of downed trees. We kicked across the gravel and I remembered to remember.

I remembered to never, ever dare to underestimate what my boy might be able to accomplish.

Friday, May 25, 2012

My Hometown

Disclaimer: This post has absolutely nothing to do with autism. I was just in a mood to reflect.I guess this is more for me than anyone else. Thanks for bearing with me! 

Gilberville's covered bridge
I didn't notice for the first 7 or 8 years we lived in our current house. For whatever reason the thought never crossed my mind. It wasn't until I was sitting out on the back deck one night and heard the smack of an aluminum bat and cheers from the crowd up at the ballfield behind our house that I saw. I looked at the slope of the grass hill leading up to the ball field and the landscaping on the hill in our neighbor's yard. Their shed. The smattering of evergreen trees. The garden. In a flash I saw for the first time that I had felt at home when we visited this house looking to buy because it was a near-replica of my grandmother's backyard. Something about hearing the crowd cheer as someone ran the bases brought back a very distinct memory: of basil in my grandmother's garden, cartwheels done barefoot on her back lawn; hanging from the branches of trees getting sticky from pitch and singing the theme song from "The Greatest American Hero," and climbing the hill in those same perpetually summer-bare feet to watch the Gilbertville kids play Wheelwright or Hardwick or New Braintree.

My grandmother's house was one of my favorite places in the world. She lived up the street from us until I was 10. We both lived in row houses of four apartments -- my grandmother was the landlady of her house, though, and had an extra room built on that looked out onto our dead end street and the trails that led up to the ball field. This was my childhood. This was Gilberville, Massachusetts.
The abandoned mill...which had the post office in the front (right) 
Gilbertville is in the middle of nowhere, at least by densely-populated southern New England standards. It's in central Massachusetts, not far from the Quabbin Reservoir, which, when created in the 1930s to provide drinking water for Boston, flooded and ended the existence of four towns. We would often go to the Quabbin to walk or to slide down the great grassy hills of the Windsor dam there on cardboard boxes.

Gilbertville is one town over from Ware (Where? Ware!) was the joke told ad nauseum when I was a kid. Ware was a downright bustling metroplis compared to our town, having stop lights and even a McDonalds and a few pizza places. Gilbertville was a village or section of a larger town, Hardwick, but was not Hardwick. Hardwick was where the rich people and farmers lived. Hardwick had the pretty, quintessential town green and agricultural fair every August that claimed to be the nation's oldest. Hardwick was nice, and Gilbertville was, well, not as nice. At least that's the way my parents made it sound. Gilberville was a town for the working class, full of many families of Polish or French Canadian descent, with an abandoned mill with broken windows and more bars then churches, restaurants, or really anything else.
The main road through town

I didn't see those things, of course. Gilberville was what I knew and what I loved. I think most kids feel that way about the place where they grew up, about their "stomping grounds." Kids see with different eyes.

This is what I saw. This is what I lived. This is what I knew.

I knew that my town had an actual covered bridge that was a little creepy to cross but beautiful nonetheless, even with the missing boards here and there before it was renovated. We had abandoned railroad tracks and a penny candy store where I could get little wax paper bags of Swedish fish and the gothic-looking tiny library full of Nancy Drew mysteries. Gilbertville had "The Bugle," actually a tiny mountain (really a hill, at 1000 feet) called Mount Dougal, that you could hike up with squished sandwiches in brown bags and sit on the cliff and look down at the town below. 

Gilbertville had the lower elementary school and the upper elementary school and those old guys who used to sit in lawn chairs across the street every day when school got out so they could watch the kids and remember what it was like to be young.

Gilberville had cow fields complete with a rumored angry bull and trails in the back woods that supposedly led to old indian caves and "The Pool," a pond no one could swim in anymore but where I had won a fishing derby at age 5.

Gilberville had a tiny post office where my grandfather had been postmaster before he died in the late 1970s. Everyone in town had their own box in the office, and how I loved to go in there and see all of the mail sitting in neat piles behind all the little windows, waiting to be picked up.
My beloved library

In Gilbertville, I had my best friend (a boy) across the street, forts under the pricker bushes and an imaginary house in the spot where a few crab apple trees grew closely together. These were the days when parents still let their kids roam through backyards and down the street and even across town without someone fretting about weirdos or something terrible happening. No one wore bike helmets, but we did once lie down (several of us little ones) in the middle of my quiet street so that the big kid next door could attempt a jump a bike over us. Someone was always hitting a ball into Old Lady Novak's yard, and she was always opening her door and yelling. A game of hide and seek was almost undoubtedly going to crop up if we were all together for very long.

This was Gilberville, where every Halloween the kids in town dressed up and paraded around the American Legion while the judges watched and awarded best costume prizes. This was Gilberville,  staunchly Democratic Gilberville, where my grandmother kept piles and piles of newspapers on JFK and RFK in her attic and my dad was once yelled at on election day at the same American Legion for holding up signs for the Republican senate candidate challenging Ted Kennedy.

Protestant church in town
"Your father is turning over in his grave!" one of the town selectmen yelled over at him.

This was Gilbertville, with its one Catholic church and one Protestant church. My parents had left both and become decidedly charasmatic christians. That was in part what finally led to our leaving the town, when I was 10. They just felt they didn't belong anymore. Maybe I felt that way too.

A part of me will always be there. A part of me cannot think of summer without seeing my childhood self look out the window after being put to bed while it was still light outside and watching the bigger kids skateboard down our street listening to Michael Jackson's "Billie Jean" blaring from someone's window. A part of me cannot think of winter without recalling the sound of snowplows in the middle of the night, and the way they would push huge mounds of snow to the end of our street. In the morning we'd grab our sleds to go sliding (not "sledding," in Gilberville it was always called "sliding"). We'd tackle those two hills behind my grandmother's house, hills that ended with the giant snow piles that served as ideal ramps, sending us flying sometimes five or more feet into the air before we landed.

From the top of the Bugle
One afternoon, being alone at the top of the hill when everyone else had already whisked their sleds down to the bottom. I flopped down in the snow and looked out at the stillness of the ballfield. I listened to the silence that comes only with freshly fallen snow. And I told myself to remember this. Something in me whispered that the moment was worth remembering.

I took a drive back to Gilberville about a year ago. My grandmother is long gone now and the the town seemed to have an extra layer of grime. Nonna's back yard had become not much more than a big driveway with cars everywhere and junk seemed to be building up everywhere...overflowing out of trash bins and on porches and spilling out of garages.

You just can't go back. Childhood resides as a place in your mind. When I remember that, I know that Gilberville is not just the down and out place it seemed to be when I visited. It's not the trap my parents sometimes felt it was when they were young. It's the place where I learned to read and ride a bike. It was full of adventure and first friends and first steps. It tweaks my heart the way you feel about your oldest friends or close family, the ones who know all of your secrets and all of your stories and don't even care how many times you come back and revisit them.

Monday, May 21, 2012

It's A Seasonal Thing

Hiking in March...Ethan in the beloved red jacket
I've always thought that I had a little touch of what they call SAD, or Seasonal Affective Disorder. While I don't sink into a major depression as the days grow shorter and winter settles in, I do tend to feel a little melancholy from the time the leaves fall off the trees and baseball ends until about, oh, the Macy's Thanksgiving parade. Having more lights on at home during those evenings that come so quickly has seemed to help.

On the flip side, when spring comes, I'm bursting with energy. I'm up with the sun, even if that means 5:30 a.m. I'm ready to tackle projects and practically burst on the first warm spring day or on the Red Sox opening day, whichever comes first. On summer I ride the high, just as in January and February I try to weather out the storm of a winter that seems as if it will.never.end.

For awhile I'd heard people talk about how their kids with autism were affected by the seasons. Many people I know with kiddos on the spectrum talk about how spring and fall are difficult...about regression...about their children being more uncooperative and just not happy about all the change going on.

I'd never really thought about this in relation to Ethan until he started talking about it. Thankfully, he has not been a child who majorly regresses, but we have noticed little blips here and there, more struggles and more "off" behaviors, often in the spring.

A New England spring is such a tease. This spring has been particularly bad -- 70 degrees in February followed by snow and freezing temperatures in March. Weeks of sun followed by weeks of rain. I started wondering last month what month we really were in: Was it July? Or February?

Ethan has felt the yo-yo affect. "Do I wear my summer jammies or winter jammies?" he asks every night. Just when he gets used to one pair it's back to the other type.

"Why am I wearing short sleeves?" he asks after weeks back in the winter clothes. Or conversely, "I want to wear shorts. Why am I wearing pants this time?"

Then there is his spring jacket. He didn't wear it for a few weeks, but then we had to go back to it. Suddenly when the weather got warm again, he didn't want to give the jacket up: as in, he wanted to keep it on in class. The next day despite the not-so-warm weather I decided to send him to school without a coat. He reluctantly left his little red jacket behind, but he didn't forget about it.

This morning, forlornly, he informed me that, "Sometime I will get to wear my red jacket again."

In that moment, in a flash, I saw. I saw how confusing this must be for a child who lives and understands his world by memorizing the rules, by commiting to memory what they tell him in preschool. ("These are the things we wear in the winter. These are the things we wear in the summer.")

Even the light is baffling. "I CAN'T go to bed," he will tell me. "It's still light outside. Why is it still light outside?"

I remember myself as a child staring out at bigger kids on the street, playing in broad daylight although it was past 8 p.m., and how strange and unsettling that seemed, even to me.

Time changes...temperature changes...and now we are heading into school changes as the year winds down. Not only does the cycle move on but around here does so in a frustratingly unpredictable manner.

Is it any wonder kids on the spectrum struggle so much at these times?

When I think of that way, I feel profoundly grateful that right now Ethan's primary struggle is keeping that little jacket on even as he sweats through it...or insisting on wearing sandals...or stamping his foot at the thought of long sleeves.

He's protesting in his own little way to order his world, the way I turn on all the lights in early November; think of vacations in warm places; snuggle under the covers and try to embrace the half-remembered smell of the heat turning back on for the first time.

Thursday, May 17, 2012

Where I'm Looking

When I drop Ethan off at school each day, the routine is the same.

We walk in, stand in the hallway with the parents of other drop-off kiddos, and wait. We watch the kindergarteners march in from their busses. We watch several moms chase their rambunctious toddlers around. I watch another mom of an (I think) special needs little boy and try to think of a way to start conversation that somehow doesn't offend her for assuming her child has special needs.

And I watch Ethan's peers learn to chat; to become social.

At the beginning of the year, it was not like this. Earlier on, each of them kept to themselves, still in the shy adjustment phase and the typical world of three-year-olds who prefer parallel play; who don't reach out and chat in the hallway just for the sake of "talking."

But now the year is almost over, and everyone has turned four, and each afternoon they form a little group in the hallway. I don't know what they talk about. But I can see the change, see the way they seek out each other's company.

This, while Ethan sits at the bead table, playing alone.

Or this, while Ethan stands, back to the wall, refusing my suggestions to go over and say hi to his classmates.

This hurts.

I'm not sure what hurts. Is it the mamma bear part of me that knows how funny and outgoing and charming he can be, that wants everyone else to see it to? That wants kids to seek him out and see him for what he is and can be, when he's at home and comfortable? Is it the worried part of me that wonders: Will he ever make friends? First, will he want friends?

Or is it this troubling thought that cuts like a knife: What would be worse? For him to not want to make connections with kids at school, or to want to but not know how and to be painfully aware that he doesn't fit in?

There are some days when I think of how it would be easier to hide in the world of the special needs classroom. In the autism room, Ethan is the "shining star." His speech therapist told me the other day that out of all the kids in the program, she was most confident Ethan could handle something like swimming lessons with typical kids...or t-ball next year, as his PT suggested.

In conversations with the parents of kids with autism, I sometimes get comments that I understand all too well. The comparison comments. "Oh, my little guy's not that far along," one said to me. Another said something very similar. But wait! Don't write us off, I wanted to say. He still has his challenges! We can still relate! But I know where they are coming from, because I am guilty of the very same comparisons.

And so we have moved, as is nearly always the goal, to the world of the mainstream, to inclusion, which is oh-so-good for Ethan. It's so good when he's say, invited to a birthday party and I see him jumping in a bounce house with typical kids, laughing, calling out to his friends, having the time of his life (that was in April).

Some days it's just not so good for mom, standing in the hallway, watching.

One day as I sat and watched I heard very clearly God say, "Keep your eyes on him."

I knew exactly what that meant.

If I keep looking around and comparing, I only see Ethan in terms of how he measures up to everyone else. I am blinded to who he is and all of the wonderfully awesome things he's learned. I lose my sense of wonder and gratitude --

...that my boy gives me hugs and kisses every day and says his prayers at night

...and can count to 100 forward and backwards, count by 5's and 10's and is learning to tell time

...brings me dandelions plucked from the backyard

...has gone from rarely speaking up in class to being, in the words of his teachers, a chatterbox who just won't be quiet

...was dancing like crazy this morning in his room to something on the radio

...is starting to invent stories, actual stories about imaginary things he did

...the list goes on and on.

I realized, as I stood there and thought in the hallway, how grateful I was that God looks at each one of us and sees us as individuals -- not in how we measure up to everyone else.

"Keep your eyes on him."

Keep my eyes on Him.

So often so much depends on where and how we are looking.

Sunday, May 13, 2012

Never Give Up

All we wanted to do was take a hike on a nice day.

This was about 15 years ago. I was in Maine with my mom and brothers. I don't believe Dan and I were married yet. We were spending time as we often do at our old family camp on the lake a ways north of Augusta and decided to hike to a waterfall in a nearby town. The morning was beautiful. The idea of a hike seemed perfect.

This should not have been a big deal, even with Andy along. Andy loves hikes and the outdoors. Andy can walk for miles and not tire. Andy rarely acts up on these kind of excursions.

Only that day, he did.

Everything was fine until we got out of the car and actually stepped onto the trail. We had done what all of the other happy little families had done and parked our car on the side of the road in the dirt and headed enthusiastically into the woods, backpacks on, water bottles filled. Only something was upsetting Andy. He started to make his angry growling noises. He didn't want to cooperate. Then he was smacking his hands and whining. We had no idea what was wrong, but plodded on.

Andy was not settling down. We looked nervously at the others hiking nearby, blissfully heading out on their excursions not wondering if one of their companions might suddenly turn on them -- which was what Andy was doing. He had moved from the noisy stage to the grabbing and nearly biting stage.

"He's going to hurt someone," my mom said frantically. "We've got to turn around and get out of here."

And so, after a mere 10 minutes of walking, we turned around and dejectedly yet hurriedly headed back to the car. Oh God I hope no one gets hurt, I was thinking, in-between wondering what the waterfall might have looked like, had we actually made it there.

In the car, (wouldn't you know it?) Andy calmed down. We sat there for a moment. No one really said anything. My mom turned the key.

"I just wanted to take a nice walk and do something fun with my family," she said as we began to pull back onto the road.

That was all she said. The words had weight. I felt the burden on my back, the load, the wondering why this was the way things often went, with Andy. I felt the tears. I tasted them. This was not right. This was not fair. I slumped my cheek against the window and willed myself to stop crying. Then the anger turned to something else. The tears dried.

God, I pleaded. God, if you're listening, I thought, staring out at the Maine summer rushing by, please do something to change this. I need you to show me you are here...please do something now.

Not more then two seconds passed. My mom spoke. She was talking to herself more than anyone. "No," she said in a low voice. "No," she said louder. "I'm not going to give up. We're not going to give up. We can do this. We can't give up. We are going to hike to the waterfall."

My heart was pounding. "God please help us, help him," I think we were all praying, although my prayer had already been answered.

We pulled back into the dirt. We got out of the car. We walked onto the trail and Andy was absolutely.perfectly.fine. Not a peep. Not a pinch or a bite or a growl. Only smiles, as we did the thing he so loves to do.

We saw the waterfall, and it was beautiful. It was 20 times more beautiful than it might have been if we had not left and then turned around.

That night all I could think about was how in my moment of desperation, when every fiber of me had cried out for something, God had heard.

Today I realized that God always heard, but it took my mom being obedient at that same moment to make a miracle happen. Again I was reminded that often our choices are not meant for us only but for those who lives we  touch.

Things weren't always perfect when I was a kid, and Andy made them more difficult at times. But every time my mom scrubbed the unmentionable mess off the walls...every time she marched down to the laundromat in our apartment complex where people would sometimes steal clothes and come back with fresh new baskets for us... every time she would clean a new mess and take time to play and laugh...every time she would play the flute and make songs of worship come alive in the midst of the chaos, she was teaching me something very important.

My mom was quite simply teaching me, as Winston Churchill once famously said, to Never, ever, ever, ever, give up.

Thanks mom.

Friday, May 11, 2012

Happy vs. Holy

I came across a blog the other day. I'm always discovering blogs. I could spend my life exclusively reading blogs, there are so many I'd love to get to.

This one was a tad different. It wasn't an autism blog, for one, but about a man and a woman. Ian and Larissa. Six years ago Ian was in a devastating car accident and was severely brain damaged. He and Larissa had been dating for less than a year and had planned on getting married a few months after the accident. They ended up marrying a few years later. Ian is not fully recovered and barring a miracle never will be in this life. But Larissa didn't walk away. She stayed close. She became his wife. She doesn't have the man she dreamed of. Yet she chose him anyway.

I was sitting in a mom's group recently, watching a DVD about marriage, when the speaker posed a question that stopped me cold:

"What if the primary purpose of marriage was not to make you happy, but holy?"

The words echoed through my mind as I went about the rest of my day. At first they felt like a gut-punch. How could that be? Of course marriage is supposed to make you happy. I tried to figure out why I couldn't let go of the phrase, why it resonated so. And I wondered: What if? What if I didn't just apply the phrase to marriage but to caring for my kids, to friendships, to life?

It's Not About Me, rings the title of a Max Lucado book, yet we all live lives that are very much all about us and 99 percent of the time don't even realize it. When I stopped to think, to really think, it came to me that a great amount of the dissatisfaction I had with others and with circumstances in general was directly related to how I thought they were impeding my happiness.

If only she would stop making those blunt comments...
If only the vacuum hadn't broken...
If only he would be better about picking up after himself...
If only they had made better choices...
If only she would stop losing her temper...
If only I had more time to do things I want to do...

The more I thought about this, the more I became a bit indignant. We can't all be saints, I thought. There's nothing wrong with wanting to be happy. I can't just be a selfless martyr. I'm not Mother Theresa.

I was sitting in church last night. There was nothing but music this service, featuring a band from out in western New York. They began to sing a song I hadn't heard before:

Nothing else matters
Nothing in this world will do
Jesus you're the center
Everything revolves around you
From my heart to the heavens
Jesus be the center
It's all about you
It's all about you

In my mind I suddenly had a picture of the solar system. And I thought about the people of times long ago, people who were mistaken in their perspective, who were so certain that the planets and sun revolved around the earth. It took a few men to fight against the tide, against the conventional thinking. They realized that things just didn't add up. Something was off, something was skewed. They turned the world upside down by proposing something that seemed so opposed to the way everyone believed and everyone lived.

The sun is at the center. The Son at the center. Of course? The life source, the light source, would be in the middle of it all, has to be at the middle of it all.

People hear the word holy and think it means living a life devoid of joy or fun. They think of some sort of miserable Puritan. They think of a person who would never dance; who would never truly love. That is not the holy I'm talking about. This verse comes to mind:

"Each of you should look not only to your own interests, but also to the interests of others. Your attitude should be the same as that of Christ Jesus: Who, being in very nature God, did not consider equality with God something to be grasped, but made himself nothing, taking the very nature of a servant, being made in human likeness." - Philippians 2:4-7

We are born selfish but were born for something more than ourselves. We were born to serve. When you think about all of the great stories, all of the great movies, how many of them involve some kind of selfless act? How many are about sacrifce? There is something in us that deeply admires these things.

I'm not Mother Theresa. I never will be. But I can be just a little bit more like her -- like Jesus. When I just decide that I want to, I can hear the words holy and happy and, a little more each day, long for holy, not just happy. When we choose holy first we acknowledge that we are here for reasons far beyond just ourselves -- and that we won't be here for very long. We are living on borrowed time, practicing for eternity, when we pick up dirty laundry or choose to hold our tongue or push our damaged husband in a wheelchair. We are holy when we love first, as He first loved us.

Sunday, May 6, 2012

Theory of Mind

I often wonder what Ethan dreams.

I've tried to ask him. I never realized what a complicated thing it is to describe a dream to a child. This is another one of those areas that you never think about, with typical kids. At least I didn't. When Anna was little, one day she came into our room and said, "I had a bad dream." I didn't think, "Wow! She knows what a dream is!" I just asked, "Really? What happened?"

I have no idea what age the "dreaming milestone" is typically reached, but we've most likely passed it. Or maybe he's such a deep sleeper he truly doesn't remember his dreams. All I know is, I will ask Ethan if he had any dreams the night before, and he'll undoubtedly say, "Yeah!" And so then I will ask, "What were they about?" I'll then see his eyes scan the room and land on a certain object. "They were about...trains!" he'll announce.

Ethan, I have said several times, dreams are pictures in your head. You see them while you're sleeping.

I see pictures OUTSIDE of my head, he responded once, glancing at pictures on the wall.

We ran into a similar issue the other day, as I was cleaning with Ethan nearby, mildly irritated because yet another song from the kids' XM radio station was running through my head again and again and again.

"Arrrgh, I can't get that song out of my head!" I exclaimed, more to myself than him.

Ethan looked at me in a funny way. "There's no song on your head," he said.

I then attempted to explain what it meant to have a song going on inside your ears that you didn't sing out loud, feeling much like I was back in 4th grade, doing one of those assignments like "Try to Explain How to Make a Peanut Butter Sandwich to a Space Alien."

There's a lot of talk out there about autism and something called theory of mind, or namely: the ability to attribute beliefs, intents, desires, knowledge, etc. to oneself and to understand others have beliefs, desires and so on that are different from one's own. Some people have theorized that those with autism lack a theory of mind, and therefore can't take another's perspective or point of view, and have difficulty with empathy and interpreting others' emotions.

I see this in Ethan sometimes. The most humorous is in playing hiding and seek, where he still thinks that sorry, if he can't see me, then there is no way I can see him. He just doesn't get it. Or he will announce where he is hiding, not understanding that the point is for me to walk in a room and not see him and try to find him.

But, as with most people on the spectrum, he doesn't fit the stereotype completely. He gets other people's emotions. I mean, he's strangely intuitive. I will sigh and he'll ask me what's wrong. Dan's voice gets a little tense and suddenly he'll say, "I don't want daddy to be angry." Show him a picture of a person expressing almost any emotion and he can rattle it off. One time we loaded up a computer program for autistic kids that was about understanding other people's intent by following their eyes (What is the man looking at? Which ice cream flavor does he want to eat?). Ethan aced every question on the first try.

So with Ethan right now, we are dealing with a somewhat different theory of mind. It's really the ability to understand that we have minds. It's grasping what that silent world is up above our eyes that dances with thoughts and intents and pictures that aren't on paper and songs that aren't on the radio. I find it fascinating that he understands when someone growls in frustration that they must be mad or slams a door that they're probably angry, but doesn't get that if his hands are over his face, I can still see him.

There are all kinds of facets to learning about perspective. Sometimes with autism it's as if the learning is turned inside out and upside down. But I suppose it doesn't matter how you get somewhere, as long as you get there, or get further along than you were when you started.

An addendum: This morning, before I'd even had a chance to post this, I was in the kitchen with the kiddos when Ethan announced out of the blue, "We had a different car." "What do you mean?" I asked him. "In my dream," he answered. "We had a different car, and then the road was breaking." Well. Who would've thought?

Wednesday, May 2, 2012

Two Conversations

What is it about kids and bedtime?

What is it about that moment just before you tuck them in, when they decide now would be a good time to discuss and ponder things they've been holding in for, I don't know, years?

Every night Ethan reads a story with Dan and then I tuck him in. About a week ago, just after I gave him a goodnight peck on the cheek and started to walk away, Ethan pleaded, "Mamma, give me a hug, so then I won't die."

Oh God, I pleaded myself. It's the whole Easter story thing again. The poor kid is so confused.

I hugged him tight and whispered into his sweaty little head: "Ethan, you're not going to die."

And then, because I always have to be so darned honest, I added, "You're not going to die for a long time. And when you do die, you'll go to heaven to be with Jesus."

"I don't WANT to go to heaven," Ethan said stubbornly. "Where is heaven?"

Oh no. I'm not ready for this. I thought fleetingly of my own science fiction-like view, that heaven is not so much a different place "up there beyond the clouds" as in a different dimension.

Thankfully, or maybe not so, Ethan moved on. "I don't want to die. I don't want to die for real." His brown eyes were so big.

"Eth, everyone dies." I hated that I had to tell him this. "But most people don't die until they are very old."

"I don't want to get old," was his reply.

I know buddy. I don't want to get old either.


About three nights later, we were in the same stage of our goodnight routine, saying prayers and talking about some of the things that had gone wrong that day. I don't even remember what now, but I know it was one of those days when, let's just say "Ethan did not make good choices," as we would say in mommy or teacher-speak.

Ethan lay staring at the wall.

"I don't like when I do bad things," he said.

I wondered: did he mean he felt remorse, or that he didn't like getting in trouble?

"Ethan, it's okay. I still love you. I forgive you. And God forgives you."

"Where IS God?" he asked. Outside, the wind was whipping the new leaves around on the trees. Anna had ventured into the room to say goodnight.

"God is everywhere," she told her brother matter-of-factly.

"I can't SEE him," Ethan protested, almost frustrated.

I know, I know, hon, I wanted to say. How do I choose the right words?

"It's like the wind," I said. "You see the wind moving the leaves? You can't see it, but you know it's there because you see what it's doing."

"Mom," Anna piped up in a confiding tone. "This is going to be REALLY hard to explain to him." She turned to her brother as if she'd been schooled in deep theological matters for eons. "Ethan, God is everywhere and can be in a million places at once."

"He sees you," I said. "God sees you even when mom or dad isn't there."

"I don't WANT Him to see me. I don't WANT God."

I knew part of my little boy's words came from his tendency to grow negative and contrary about everything once he's grumpy about anything. But, there was something else.

That part of him down deep, that self, that Will that is becoming more defined, was asserting itself, protesting that it just isn't ready yet. It knows it does bad things and doesn't like doing bad things, but doesn't want to stop doing bad things.

I don't want Him to see me...Something about the words cracked my heart open.

"Eth, God's not here to push you. You have a choice. God doesn't make you do anything." I'm not sure how much he understood, but I felt I had to say it, to this four-year-old nestled under dinosaur blankets who suddenly was full of the universe's biggest questions.

He fell asleep within minutes, I'm sure, but I was left thinking: thinking of the way so often we all want to run and hide. We cower in supposed tight and perfect hiding spaces that in God's reality are oceans wide, thinking that turning our hearts over and our lives over to something greater than ourselves would be one great loss.

All of this, after the goodnight kiss but before I closed his door behind me.

All of this.