A few weeks ago we enjoyed a vacation on Kiawah Island, and I spent three hours bicycling the streets with Martin and his stuffed panda bear in a cart attached to my bicycle.

Every fellow cyclist and pedestrian greeted us. “Good morning!” “Why, hello!” “Happy New Year!” “Some kind of fine weather today, isn’t it?” Even the drivers waved from the luxury cars that drifted by, obedient to the posted speed limits. I hardly bothered removing my smile between encounters.

This is the good life, I thought. The whole scene—planned community, bicycle paths, golf courses, herons, salt marshes, palmettos, beach, fine houses neatly kept—felt Disney, if not Stepford, and I devoured the insouciance. It’s invigorating, to be carefree once in a while.

“Well, look at this guy,” an older woman said, fawning over Martin when I stopped to check my map. “He’s got the best seat in the house.”

“He does,” I said. “He’s just zooming along while I do all the work.”

I mounted the bicycle again and pedaled away. I was happy that the woman had admired Martin.

In a moment, I wondered, Would she have acted the same if she knew the kid in my cart has autism?

And, Would any of this be different if the kid in my cart didn’t have autism? Does it always have to matter?

In 2008 I attended a fundraiser for Extraordinary Lutheran Ministries, a group that facilitates ministry calls for openly gay (including non-celibate) clergy. Under the ELCA’s policy at that time, gay and lesbian clergy could serve only if they practiced celibacy; like everyone else at the fundraiser, I opposed that policy and favored allowing non-celibate homosexual clergy to serve just like non-celibate heterosexual clergy.

The ELM representative who attended, I remember, said something like this (I’m paraphrasing wildly, on several years’ sketchy memory): “The church policy might seem like the biggest obstacle in the world, right now. But it isn’t. The policy is like this cell phone.” Here she held up her mobile phone, then balanced it unsteadily on its side atop an end-table. “We can just knock it down.” She tipped over the phone. “We can just knock over that policy and move on.”

That’s the way autism recovery feels. Some days, ASD is the biggest obstacle in the world, this lurking beast that colors even a halcyon Kiawah bike ride. Other days, especially when Martin is showing growth, ASD is that mobile phone teetering on an end-table. It’s changeable.

In 2009, the year after that fundraiser, a Churchwide Assembly amended the ELCA’s clergy guidelines to remove the requirement of homosexual celibacy. ELCA churches now can issue calls to gay and lesbian clergy in committed same-sex relationships.

Which is to say, we knocked it over and moved on. And maybe it really doesn’t matter if the kid in my bicycle cart has autism.


Here are some things I’ve heard about Newtown—I guess we just say Newtown now—that may or may not be true. I heard that the shooter had autism, or some form of ASD. I heard that his mother tussled with the school district about his special education. I heard that she encouraged her son to “fit in.”

I thought, How terrible. How could the mother of a child with special needs tell him to do precisely that of which he is incapable—to fit in?

I thought, I would never do that to Martin. He is who he is. I will not chisel away his self-esteem by telling him to be like other kids, when he can’t.

As a child, I was boyish. There was no dress-up or experimentation with make-up for me. I had short hair; I preferred jeans to skirts or dresses or even slacks; I played sports and climbed trees; I didn’t mind when strangers mistook me for a boy, which they often did. Like other boyish girls, I faced persistent pressure to change, mostly from adult females, well meaning or otherwise. (“I can’t believe you’re not getting this right,” the art teacher chided, when used too little adhesive on my papier-mâché project. “You’re just always so messy.”) The effect was that I didn’t like myself. I believed that I should be girlish, but I wasn’t. That just wasn’t me. And so who I was—wasn’t right.

I’ve been determined not to tell Martin that he isn’t right. Martin should fit in with other kids only as much as he wants to or is ready for. That’s an easy call.

Still, Newtown and the rumors surrounding it got me thinking: Are there other instances when I tell Martin to do what he’s not (yet?) capable of?

There are. About fifty million per day.

“Martin, pay attention.”

“Martin, stop dawdling.”

“Martin, look at me.”

“Martin, no repeating. Say it only once.”

“Martin, eat.”

“Martin, hurry up.”

“Martin, walk like a big boy.”

“Martin, just go to the front hall and put the shoes on.”

The hard part is figuring out when Martin is just playing me. Example: Bedtime. Martin insists that I do his bedtime routine: potty, supplements, teeth brushing, reading, tuck-in. He’ll agree to take his bath for someone else (say, Adrian or Samara), but bedtime is all Mommy. In fact, Martin is so fixated on bedtime with me that perseverates on continual reassurance. Within five minutes of waking each morning, he has said, “Sleepy-time with Mommy!” at least once. He says it throughout breakfast and while he gets ready for school. It’s one of the first statements I hear when I pick him up from school: “Sleepy-time with you, Mommy!” Anytime that he senses I am about to leave, even if only to go to the bathroom, he becomes agitated and says, “Sleepy-time with you! Sleepy-time with you!”

On vacation last week, Adrian and I went out to dinner and left Martin with my parents. As soon as Martin realized that Adrian and I were leaving, he began to scream and cry. “I want to go to dinner, too. Sleepy-time with you, Mommy! Sleepy-time with Mommy!” He threw himself dramatically to the floor, grabbed Adrian’s foot with his right hand and my foot with his left hand. “You’re not going to go out! You’re going to stay here!”

We left.

Within five minutes I received a text message from my mother: “Everything fine here. Martin calm.” When we returned home later, I learned that Martin had done his entire bedtime routine and gone to sleep without complaint.

On the one hand, I know that Martin’s ASD and accompanying fixations make him cling to routines, and I need to indulge that. On the other hand, Martin wants me to indulge him, and he exploits my willingness to do so. When it comes to keeping pace and hurrying up, Martin is a heckuva lot more cooperative if he’s excited about where we’re going. Getting from our apartment to the school bus? It’s a ten-minute process. Getting from our apartment to the playground? He’s moving faster than I am. Am I wrong to tell him to hurry up and focus for the school bus? Same with meals. If the plate is beef bites with fermented cauliflower, I have to repeat some variation of, “Maybe you could take a bite?” at least two dozen times, or even just spoon it into him myself. A bowl of gluten-free oats with butternut squash and coconut oil goes down his throat like bathwater through the drain. Am I wrong to tell him to hurry up and focus on eating the beef?

One of my first reactions to Newtown was, “Thank God the shooter killed his mother first. It was an act of mercy; how could she have gone on?”

Looking back, I think that reaction—it was a gut reaction, and I am not saying that the Newtown shooter’s mother had anything to do with what happened on December 14; I know almost nothing about the circumstances—was my conscience expressing the responsibility I feel for Martin’s future. However far biomedical recovery takes us, I am the one who has to help Martin learn to live in the world and still love himself.

Holy crap.

Martin checking out a holiday train display.

Martin checking out a holiday train display.