In which the optometrist finds another nail for my heart

A few months ago I took Kai to a pediatric neurologist. He’s the doctor that’s been helping me manage some of the medical aspects of Kai’s autism.

I like him well enough. He takes copious and deliberate notes when I talk, but he charges in fifteen minute increments. Sometimes I wish he’d write a little faster.

At our last visit, Ryan wanted him to check her heartbeat when he was done with Kai, which he did.

“I’m not paying for that,” I said.

The doctor chuckled, but our eyes met and I knew we’d come to an understanding.

In any event, the doctor saw a lot of good things in Kai, like when he asked Kai what was happening in one of the posters in his office.

“Dog is laughing,” Kai said.

“What’s so funny?” the doctor asked.

“Cow is jumping over the moon.”

The doctor looked at me. “That’s huge that he understands that.”

I took his word for it.

:::

At our initial evaluation, the doctor had a resident with him, a doctor-in-training from the University of Chicago. He pointed out things to her as he examined Kai. One thing he pointed out was the double cowlick on the crown of Kai’s head, the one his hairstylist is going to fight for his entire life. The resident nodded vigorously.

“Why did you mention the cowlicks?” I asked.

The doctor made a slow, laborious (read: expensive) note on his pad. “Fingerprints and cowlicks form in the womb, around the same time as certain parts of the brain are forming,” he said.

I went home and googled “Cowlicks and autism.” It turned up a lot of queries that started with, “I heard that…” and a paper on “Dysmorphology” that I keep meaning to read.

And in truth, it doesn’t really matter and I tend to forget about it except when Kai’s getting haircut.

And on days like Wednesday.

:::

Kai’s OT Emily suggested that I take Kai to the vision clinic at her therapy center. I don’t remember exactly what she said, but it was about Kai’s total inability to catch a ball, that he can’t seem to time the catching motion with the ball being thrown.

I assumed this was a depth perception thing, like maybe he needed glasses. I wear them for reading, and have since the third grade. Scott wears glasses or contacts all the time. He can’t see a thing without them. So it wasn’t outside the realm of possibility that Kai needs glasses.

So I hauled the kids out to the suburbs to get his vision checked.

Kai ricocheted around the exam room like a super-ball while the optometrist examined him. They tested him for color blindness, near-and far-sightedness. They tested his depth perception. He especially loved the 3-D glasses.

“Can I have some glasses like that?” he asked.

Kai stumbled over the last and smallest line of shapes he had to identify at a distance. They were clear as a bell to me, but then I’m far-sighted. I wondered if we would have to get Kai some glasses, and I thought about what a pain in the ass that would be for me, managing Kai’s freaking glasses. He’d lose them. He’d leave them at school. Or camp. Or art class. Or gymnastics. Or soccer. They would be covered in fingerprints. And paint. And ketchup.

When it was over, the optometrist sat down opposite me.

“I’d like to tell you what I can see,” he said. I assumed the pun was unintentional.

“Kai’s eyesight is 20/20. But his vision indicates an amount of dysfunction.”

I would learn later that there is a difference between “eyesight” and “vision.”

Kai and Ryan began to get restless, and the occupational therapists distracted them with expert ease so I could pay attention.

“Kai has trouble tracking objects with his eyes,” the doctor said. “That’s when you can hold your head still and follow something around the room just using your eyes.”

This was not what I had expected.

“He also had trouble with convergence,” he said. “That’s focusing on an object coming toward you.”

I nodded. I was beginning to understand.

“So, is this like an eye muscle thing?” I asked. “Or is this like a thing where his brain hemispheres aren’t working together properly?”

Totally the brain hemispheres.

I was told that we should start working on this as part of his regular occupational therapy and see how he responds. I was given a list of exercises that we could do at home. I was told to expect to need to go to vision therapy with Kai at some point, and that some kids needed it as often as five days a week. We’d know in time how severe the dysfunction.

I nodded. Five days a week. Awesome.

All so Kai could catch a ball. Have I ever told you that I don’t care if Kai catches a ball?

The optometrist could clearly read my rods and cones.

“It’s one thing not to be able to catch a ball. When kids like this start to read, the words jump and move.”

Of course they do.

:::

I gathered up my kids and headed toward the door. Kai held my hand but Ryan steadfastly refused.

“Where are we going now?” Kai asked.

“Starbucks,” I said. There’s a drive-through not far from the center.

“You need coffee?” Kai asked.

“I do,” I said.

As I buckled him in, I gave him a kiss on his nose, which he promptly wiped off.

As I pulled on to the street, I turned off the radio so I could think a little bit.

I don’t really ponder too hard about the origin of Kai’s issues. I can’t. I don’t know why Kai has autism. Kai didn’t suddenly regress like a lot of kids I know, kids whose parents have a pretty damn good idea why their kids are sick. But I thought then of his cowlicks, of the idea that something went haywire during week 8 of my pregnancy, the week his fingerprints formed. What happened during that seven days? It was late summer, 2006, the week I went camping in Wisconsin Dells. It was the week that I suddenly couldn’t stand coffee. I had pancakes that Sunday, the craving finally overcoming the willpower. But pancakes aside, I took such precious care of him. I was so instantly attached, so full of hope and expectation. I wanted so much to do a good job, to give him the best start I possibly could.

8-weeks.

What happened to you, child? This was the thought that I kept circling back to. I swear I did everything right. I swear I did. What happened?

And why? Why add one more problem to try and solve? And when are we going to find time for frigging vision therapy? And why are all the developmental optometrists way out in the suburbs? And how does this factor in to the masterpiece of an IEP we just wrote?

:::

I told Scott what had happened when I got home.

“This seems silly when I describe it,” I said, “but it could really affect things like reading.”

He listened carefully, and then shrugged.

“Oka-ay,” he said, slowly.

Scott flipped the dishwasher closed and hit the “clean” button. The machine roared to life.

“But he sure has no problem seeing every detail of the Angry Birds,” he said. “Kai sees what he wants to see.”

I think there’s some truth to that. And I think that when you go searching for problems, you tend to find them. But I also think that Kai’s been dealt a mean set of neurological cards.

I texted Kai’s teacher when we got home and told her what we’d found out.

“Hmm,” she wrote. “Kai’s so charming, does he really need to catch a ball?”

I’d had this thought already. He’s not Devin Hester. How hard do we really need to push him?

And then I read the literature that the optometrist gave me. It showed an approximation of what Kai sees when he looks at text: