Wednesday, November 25, 2015

To Speak or Not To Speak

Lately I've been trying to be mindful that I shouldn't always force Ethan to make small talk. Ninety percent of the time, he thinks it's a chore and nothing more. He's already got to deal with practicing this social stuff in his group at school (never mind all day at school in general). There are times when he very nicely, very bluntly, stops answering my questions and says, "Mama, I just want to be quiet right now." How can I say no to that? Especially when there are times when I myself don't feel like being interrupted from my thoughts to start gabbing.

But then this is usually the way things end up going (from a conversation last week in the car)...

"So, Ethan, which special do you have today, gym or music?" We were driving to school.

No answer.

"Eeth? Which special?"

Nothing. Then -- "Mama, I just don't feel like talking right now. Can we have silence in the car?"

"Okay. Is the radio all right?"


Thirty seconds of silence later: "Mama, did you know a whale is the largest animal alive on earth?"

"Really? Where'd you read that?"

"In something for school."

"Hey, wait a second." I decide to call him out. "I thought you said you wanted silence."

"I do. Mamma, stop talking."

"But wait! Are you saying you only want to talk if it's something YOU want to talk about?"

"Mamma! I said silence in the car!"

"But..." My voice trails off and the car grows quiet again. For thirty seconds.

"Mama, I kept winning in soccer every day during recess!"

"Good for you." I glance at the clock. "Rrrgh, it's late. We're cutting it close."

"Mama, I don't want you to comment about us being late or saying we're close."

"Why not?"

"I just don't."

"Is it because it makes you nervous?"


Back to silence again. Then I ask, "Ethan, did you just see the crossing guard with the turkey hat?"

No answer.


He's back in his own world.

"Why is okay for you to talk about something but not me?" Silly question. More silence. And so it goes.

I can't really complain. He does initiate conversation. It just usually has to be on HIS terms. The only thing that concerns me, and I've written about it before, is how this carries over with other kids. After a while they're going to get annoyed with someone who rarely answers them or comments on things that they bring up. And while we understand his need for peace, I'm not sure how kids his age will respond if he says, "I just don't want to talk at all right now. I like silence."

Recently we told Ethan about this conference that autistic people like to attend, put on by and for people on the spectrum, where there are people with signs that say things like, "You can talk to me" or "I want to be alone." He liked that concept a lot.

At first I could picture it: Ethan attending the conference with his little sign, reveling in whatever he wants to enjoy, and the power that comes from stating that you don't want to talk and you don't have to. But then, I couldn't really see it, because I know. As much as he hates the boring small talk that comes from typical people, and as much as he wants to live in his head, he actually enjoys people a lot. As far as autistic people go, he's an extroverted one.

When we've asked him: "Which do you prefer more, things or people?" and "Which do you prefer more, being with people or being alone?" He used to say things and alone, every time. But lately, without fail, he always says, "Both." I totally get that. I feel the same way.

Saturday, November 21, 2015

The Evening (and Night, and Morning) Things Went Horribly Wrong

The other evening was the kind that in retrospect will probably be really, really funny, but at the time was a disaster of epic proportions.

To set the stage: I had a rehearsal at the church that night. Part one was for the people on the worship team that Sunday, part two was our weekly meeting with the choir to practice for our Christmas service. At the same time, I had Ethan with me, as I was going to drop him off at a nearby friend's house to play (and someone would drop him off at the church later around the time I was ready to leave).

4:55 p.m.: We leave home for what should be a 15-minute drive to the church. I knew there'd be traffic, which is why I wasn't surprised when...

5:15 p.m.: We make it a mile from our house and are sitting in a line of traffic just to get to the highway on ramp. Around then Ethan takes it upon himself to become the World's Most Efficient Backseat Driver, meaning he has to offer me advice about every seven seconds. "WHY are you in this lane, mama?!" This is punctuated by palm slaps to the head. "WHY is everyone going so slow? YOU should not be going this way. We're NEVER going to get there." Then tears, and repeat.

5:25 p.m.: We make it a half-mile down the road and are finally on the highway. Barely. I decide to text my friend to see if she can pick up Ethan at the church rather than me going the extra 10 minutes to their house. "Mama, state law is no texting in the car!" Ethan yells. "Ethan, we're not moving." "I don't care, it's the law," he retorts stoutly.

5:35 p.m.: Joy of joys, we get by the accident that caused this mess and start to move more quickly. I text people at the rehearsal to say I'm coming but will be late. "I have the music!" I add, referring to the copies of the five songs we're going to be doing, for the vocalists and musicians.

5:50 p.m.: We make it past the traffic and start flying. Just five minutes and we'll be at the church. My friend says she can get Ethan. All is well until I start to merge from I-291 to I-84 and see that traffic is at a dead stop. "No way," I mutter. I have just sat in traffic for an hour. I will be the master of my destiny, I tell myself. I will switch lanes and get onto 384 and get off a different exit in Manchester to find my way there.

6 p.m.: I remember why I hate driving in Manchester. I always get lost. I search in the dark for addresses so I can punch it into my Google maps and have my phone tell me how to find the church. The directions give me streets I don't recognize and certainly am not driving past. I keep driving. I have to find something familiar eventually, right? "Mama, WHAT are you doing?!" Ethan is yelling from the back. More tears. "I'm not going to make it there."

6:15 p.m.: The rehearsal started 15 minutes ago and I have everyone's chord sheets. I decide to call Dan to see if he can talk me down from my stress and maybe get me some directions, since I'm obviously clueless. I try to say my phone number into the Bluetooth, only Ethan keeps purposely talking to mess it up so it won't work. Finally, I lose it, "SHUT UP!" I yell. He immediately starts crying. Then I do. Creep. Hypocrite. Yelling at my child on my way to church practice. Real nice.

6:20 p.m.: By the sheer grace of God, I see a route I recognize and turn. I know where I am now. I apologize to Ethan, which he gracefully accepts, although his keep muttering incredulously, "But you said shut up!" I still feel awful. Another test, another temper lost. When will I ever learn??

6:25 p.m.: I deposit Ethan with my friend in the church parking lot, go inside and practically throw music at everyone. I then attempt to calm myself down and act like a grown-up. We sing songs that feel too high for me. Or maybe it's just that my voice isn't quite what I wish it would be. Whatever the case, I feel frustrated. I feel as if I'm trying, trying, trying and not getting things right. Not getting anything right.

9:30 p.m.: Our rehearsal part two, in the church basement, has run a half-hour late. Ethan was dropped off an hour before and I've had to talk to him 23 times about not making noise and distracting everyone. I feel bad. He should have been in bed long ago. He also apparently decided not to eat dinner at his friend's house. He's hungry and bored. People are tittering at his antics. I wonder who's wondering why my kid is such a brat.

9:40 p.m.: Rehearsal has wrapped up and I decide as a last-ditch effort to get Ethan something from the McDonalds across the street. He's barely eaten a thing since lunchtime. We wait in line for 15 minutes behind one car. Stellar mom, getting your kid nuggets and keeping him up this late, I think. Ethan cries because it's taking too long.

10:10 p.m.: It's a school night and my child is finally tucked into bed, his stomach full of grease. Our coming home wakes up Chloe, who has been battling a fever virus and not sleeping well. She starts crying and then settles herself but doesn't fall back asleep.

11:00 p.m.: I crawl into bed exhausted after talking with Dan, figuring Chloe's got to fall asleep eventually. I lay there wishing...I had a better voice, more confidence,  more self-control, more everything. Chloe keeps babbling. Her babbling is keeping me awake.

12:30 a.m.: I wonder how Chloe can still be up.

1:00 a.m.: I wonder how Chloe can still be up.

2 a.m.: I wonder how Chloe can still be up. I go downstairs and after a while fall asleep on the couch.

4:00 a.m.: I wake up and at first I hear silence. Then -- no -- I hear Chloe again. In a desperate move I decide to take her in the car to get her to fall asleep. We drive down the same road where I sat in a traffic jam 11 hours earlier. Of course, the roads are fantastically clear now, because we're the only people insane enough to be up.

5:30 a.m.: We're home after a drive that burned too much gas and resulted in Chloe almost falling asleep three times but never quite getting there. I realize my kids are going to be getting up soon for school. I realize I don't know when I'm going to get to sleep. I realize that sometimes, being a mom is really, really, really hard. There is a part of my brain that knows these are first-world problems, that is grateful THIS is what I'm upset about, that thinks about ISIS and refugees and all manner of horrible things happening in this world and knows that I need to be still. There is another part of me that just wants a banner to pop out of somewhere with confetti and someone to shout, "You are still awesome! And talented! And not a failure! And a good mom! And yeah, it's not fair sometimes. But don't give up!"

And then there's a part of me that's just really, really tired.

We go inside. I start to make lunches, because that's what moms do. The sun is coming up, and for a few seconds I manage to stop and notice: it truly is beautiful.

Tuesday, November 17, 2015

Tragedy, Melancholy and Control

"Mama, why did the Titanic sink?"

"Because it hit an iceberg."

"I know that. But why did it sink?"

"Do you mean how?"

"Yeah. How?"

I've had this conversation numerous times with Ethan lately. Yes, right now the Titanic is big around here.

Interestingly, Anna hit a Titanic phase with a bunch of her friends at exactly the same age. And I think she discovered the story the same way Ethan did -- via the Magic Treehouse book series. I love the books because honestly, they are the only other chapter books aside from the Chronicles of Narnia Ethan is interested in reading. Plus, they've broadened his world by introducing him to a number of historical events. Now we're getting questions like, "Which came first, the Revolutionary or the Civil War?" and Ethan is starting to really, really long for some kind of time machine to whisk him away to other lands and other times.

The other day, at his request, I picked up some books about the Titanic from the library. Ethan proceeded to race through them, looking mostly at the pictures. At first Dan and I were foolishly waiting for the cliché -- for Ethan to start memorizing esoteric facts about the Titanic, maybe spouting off how many feet long or high the ship was or how many tons of coal it took to keep the ship going.

But no, Ethan is not interested in the facts and the engineering and much as he is the tragedy.

Oh, I know this so well. I am one who has always been drawn to melancholy and drawn to disasters. I have never quite been able to articulate why.

When those amazing specials come on the History Channel, "The Rise and Fall of the Third Reich," the ones with chilling home movies in color of people growing up in the era of Hitler, I watch with my mouth wide open in utter fascination and complete horror.

I had my own Titanic phase for a while when I was not much older than Ethan. I got out books from the library and cried as I read about the ship tilting higher and higher while the band played on with "Nearer My God to Thee." I could see it all in my head. It was just so sad.

Back when I was in 9th grade the country was observing the 25th anniversary of John F. Kennedy's assassination, and I went on a JFK kick. I read every conspiracy theory and watched every retrospective. I became well-versed in the Magic Bullet Theory and the grassy knoll, the Zapruder film and the Texas School Book Depository. But more than the controversy, I was most fascinated by the pictures of JFK and Jackie arriving in Dallas, smiling, unknowing what awaited them there.

9/11. I can tell you the first plane hit at 8:46. I can tell you the flight numbers and exact routes of each plane, when and how the towers fell. This all seems very autistic of me. But sometimes, when I think about 9/11, I remember spilling Dunkin' Donuts coffee on myself that day and being annoyed, and the video shoot we had for a work project that morning. We were filming residents at the hospital where I worked, going about their day. I watched the B-roll after in that same sense of fascination, horror, and sadness. Everyone was just living an ordinary Tuesday morning, having no idea what was going to happen.

"Mamma, what if the Titanic never sunk?" Ethan asked in the car the other day. And then, earnestly, "I wish I had a time machine." Not only has he been reading the Magic Treehouse books, in which they travel back in time to various historical events via a time machine, but we've also been watching the Back to the Future movies.

"If I had a time machine," he continued, "I'd go back to before 11:40 p.m. when the Titanic hit the iceberg and stop it from happening."

"Where can I get a time machine, mamma?" I gently told him there aren't really time machines.

"Yes there are! I really want one! There has to be one!"

I remembered the fascinating and startling book by Stephen King about a man who discovers a portal to go back in time and makes it his goal to stop Lee Harvey Oswald from killing JFK.

I realized that maybe, this whole interest in tragedies, for both me and for Ethan, had something to do with control.

We memorize the twists and turns that led up to terrible times and feel the sting of "If only..."

"Why didn't the Titanic have more lifeboats?!" Ethan keeps demanding.

We roll the questions around in our minds. Some of us think about the sequence of events and long to jump into our time machines with the knowledge we have now, to right egregious wrongs. Sometimes all we can do is jump into our dreams.

"Mama, I had a dream last night the Titanic was sinking, but it was daytime," Ethan told me yesterday.

"Where you scared?"

"Yeah, and the ship was tilting down and down. But then I woke up."

Sometimes I hope Ethan will not go my route and will not spend too much time in the land of tragedy and What Might Have Been. But then I wonder if it's such a bad thing. Maybe it's better to learn early to embrace that we are very much human. We are not ultimately in control. We don't always know why. We can't always change things. Weighty topics for a child. But if we can learn to sit with that uncertainty and still find joy, and peace, life can still be beautiful.

Thursday, November 12, 2015

Speaking Autism

As an English major and sometimes writer/editor, I spend a lot of time thinking about words and language. We grammar geeks get really happy about certain words (conundrum and serendipity, be still my heart!) and spend too much time internally editing people's Facebook posts.

Listening to your kids learn to talk and start using words is a thrill. Anna was a riot and so creative I was always rushing to jot things she said down. Chloe's just moving into this stage and I look forward to it. And Ethan takes it to a whole new level.

When he was younger we were more focused on him just learning and using words and having basic conversation. But now he's moved on to inventing words or attempting to use words or phrases he's heard somewhere else in an appropriate way, and things have really gotten fun.

Standing on the front steps last week, admiring a terrific traffic jam that stretched nearly a half-mile down the street, he blurted out, "There's a 24-hour traffic jam out there!"

"Ohhh...what does that mean?"

"Mama, it's an autism word. It means a really, really bad traffic jam."

When we were having a party with pizza, chips, and soda, and he saw all of the grown ups' cups of soda around the kitchen, he announced, "It's soda-Sylvania around here!"


"That means there's soda everywhere. I WANT some!!"

In the car, he was throwing around something that ended up bumping him on the side of his head near his temple.

"Oww! That just hit my hip-head bone!"

It goes on and on. He sat down to a plate of chicken nuggets he really wanted to eat and said, "Oooh, these nuggets are charmed!" Charmed? I think it was something he got from a Narnia book.

When I was helping him put on his soccer shin guards he kept yelling and simultaneously laughing, "No! Don't touch my leg bone!" At first I thought it was his shin. This happened numerous times before I finally figured out he meant his Achilles tendon. Apparently every time someone touches it he gets ticklish while at the same time fearing somehow his foot is going to detach from his body. I tried to tell him it's actually not a bone but a muscle (and his foot is not going anywhere), but he's not hearing it.

And then there is "heart check." One day I found Ethan stopped after running around in the backyard, holding onto his heart and listening intently.

"What are you doing?"

"It's my heart. I want to make sure it's still beating."

"Honey, I guarantee you -- if you're talking to me, it's still beating."

"Mama! Let me do my heart check!"

Heart check is not to be confused with what he calls "heart kiss." This is when Ethan walks up to me and gives me a kiss on the heart, just because.

That's one I don't have to write down to remember, because it's so darned sweet.

Wednesday, November 4, 2015

Decoding Elmo

So, Elmo has returned to our house after a several-year hiatus.

Back when Anna was about two, Sesame Street was the first show we'd let her watch, and she quickly fell in love with Elmo's World.

For those uninitiated, Elmo's World is a section of the show Elmo the red furry monster has all for himself. He explores topics like books, food, singing, bath time, and so on with help from his pet goldfish Dorothy, friend Mr. Noodle, and various other kids and Muppet characters. Over time, we began watching Elmo not just on Sesame Street but on a nice little collection of Elmo's World DVDs we collected since Anna liked him so much.

When Ethan was little he wasn't much into Elmo -- or maybe I was so tired of him I decided to turn other things on. But not long ago, both he and Chloe were pulling old DVDs off the shelf and Elmo ended up on TV once again. Chloe absolutely loved it...

...and so did Ethan. To the point where he begged to watch more. And started asking every day after school if we could watch Elmo.

This brings up an interesting side point that's come up a lot with people who have kids with special needs: age appropriateness. Many times for numbers of reasons these kids prefer toys, games or shows that are at a younger level, developmentally, than what their typical peers are "into."

This shouldn't be a problem. Kids should be able to like what they like and play with what they want to play with. But sometimes it becomes a problem...if your child is social and vocal and you know constantly talking about whatever it is they love could open them up to ridicule from other kids. Anna has rolled her eyes and asked why he wants to watch a show for babies, but I tell her to stop.

Right now this is not the issue. Rather, I've been trying to figure out what draws Ethan to Elmo.

Anna and I both thought at first it was the predictability. Elmo always says the same things and does the same things, in the same order. And in fact Ethan was scripting nearly entire episodes for fun a few weeks ago. Elmo talking to Dorothy. Elmo making his shade go up. Elmo asking a baby a question. Elmo pulling out his magical drawer and clicking on his computer.

Ethan denied this, but when I asked him why he loves Elmo so much, all I heard was, "I don't know."

As usual, all of this Elmo interest led to me Googling the show and learning they haven't made new episodes in nearly a decade. Ethan nearly began salivating when he saw how many episodes we've missed. Then he wanted to know why on some episodes, the crayon drawings on the wall behind Elmo danced, and on some they didn't. As usual, I hadn't noticed.

"Look it up on the computer!" he exclaimed, his answer to almost everything. But alas, I couldn't find anything that specific on the computer animation in Elmo's World, at least without doing much more digging than I felt like doing.

In the mornings Ethan has been pulling up his shade, talking Elmo, trying to make his shade go up the way Elmo does when he wants to see his friend Mr. Noodle -- then doing the same thing, struggling with his dresser drawer like Elmo's drawer, who seems to have a mind of its own.

Yesterday in the car Ethan blurted out, "I think my autism likes Elmo." While we never told him it wasn't something most kids his age liked, somehow, I think he knows.

"Why is that, Ethan?"

"I think it's because all of the objects are alive."

"You mean like the shade and the drawer?"

"Yeah, I like that."


It made perfect sense. I wondered how many other kids on the spectrum love Elmo's World for the same reason. People with autism often gravitate towards objects first before people. But these objects have personalities of their own and act a little bit like people.

I love the way Ethan provides this window into what it's like to see through a different lens. And while I know if you've met one person with autism, you've met one person with autism, I am still hoping, still wondering: if he is this articulate now, what will he be able to tell us about what it's like to live autism when he's older?

Amazing things, indeed.