Because I Said So (19 page)

having altered so drastically my perception of simple conversations between humans. I used to think that words simply conveyed information, but now I see the surface information as merely a ruse for interaction that is, in most cases, more like a dance that binds us as humans. We learn the steps very young. In the beginning, they are simple and repetitive:

“Wha’ that?”

“It’s a car.”

“Wha’ that?”

“It’s a girl.”

Question, answer. Question, answer. One, two. One, two. But the steps get more complicated as a child grows.

“Hello, how are you, little friend?”

“Fine, thanks, how are you?”

Greeting, question, term of endearment. Answer, courtesy, question. One, two, shuffle. Three, hop, four. They expand from these simple duets to complex productions that serve us for mat-ing, wielding power, arguing, aligning ourselves with others, and raising our children.

Some couples prefer a simple two-step. More dramatic pairs like the tango. My women friends and I enjoy immensely the circle contra dance. Many professors and trial lawyers thrive on solo performances. Whichever our preference, we need these interactions, and we need to perform these steps, in order to be part of a community.

For Max, the dances are very difficult. He recognizes that there are steps and he wants to join in. But mostly he’s relegated to standing on the sidelines observing and clapping his hands to the rhythm. Occasionally he tries the most simple moves, and because of his sweet nature, he can sometimes gain a partner.

In the beginning,
Max spoke in what I thought of as metaphors.

He had a large number of packaged phrases (most of which were parts of songs or nursery rhymes) that he used to get his point across. When he wanted to get in the bathtub with me, he would say, “Little pig, little pig, let me come in.” When he fell down and
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cried, he would sing, “Ashes, ashes, we all fall down.” When he was hungry, he would ask me, “You want a sandwich?” When he was sleepy, he would say, “You want to lie down with your mommy?”

After his diagnosis, I learned he was speaking in “echolalia.”

Young autistic children echo back what they have heard because their brains are not yet capable of creating syntax. When he was three years old, Max’s language expanded to simple phrases, many of which showed that he saw more than was apparent. One warm day, he walked circles around me, pointing down at my painted red toenails. “You got, you got,” he searched for words,

“you got your ladybugs.”

On another day, when we arrived at his grandparents’ apartment in San Francisco, he stared at their ornate red Persian carpet for a few moments, then said to them, “You got your spaghetti.”

Once, his father was bent in front of him waiting for a response to a question with his eyebrows lifted high. “You got, you got,” Max said, “you got your birds.” He touched Alex’s forehead, and there I saw that the creases created by his lifted eyebrows looked like flying seagulls.

Get in your car. Drive to a highway that winds and tunnels
through a mountain range. Turn on the radio. Find a station that
is clear for short stretches, then fades to static and muffled voices
from another station, then returns clear as a bell. Listen carefully
for a long while. That is how most language sounds to my son.

The world is sending
Max many signals, and he is constantly trying to interpret them. Animals send messages when they look at him. The trees are trying to tell him something when the wind blows their branches. But for Max, the most crucial messages come from signs. His favorites are icons with a line or an
X

drawn through them to indicate that an activity is prohibited. No food or drink. No bicycles. No Rollerblades. He seems to thrill at the idea that something is not allowed, and that he is
not
doing at the moment whatever is prohibited.

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For about a year, going places was difficult because Max wanted me to read every sign. When he started to read, I thought my burden would be lessened. But now that he can read, it has somehow become my responsibility to figure out what these signs are prohibiting. “What you can’t do there?” he asks after sounding out the words.

At first, I would try to reason with him, tell him that the sign was simply, for example, directions for how to get to the baseball field. “What you can’t do there?” he would ask again, his voice beginning to tremble.

So, I began to get inventive and say things like, “Those are the directions to the baseball field and you
cannot
play soccer over there.”

He would smile and look at me. “That’s right,” he’d say. “No playing soccer there.”

One evening we arrived at In-N-Out Burger for a healthy hamburger and fries dinner. As we walked from the parking lot to the front door, Max looked up at two palm trees in front of the restaurant that crossed at the midpoint to form a giant
X
with green fringe at the top.

“What you can’t do here?” Max asked, pointing at the trees.

I thought for just a moment. “You can’t eat fresh fruits and vegetables here. Only fried foods.”

This answer did not satisfy. “What you can’t do here?” he asked again.

“No eating fresh fruits and veggies here, like lettuce and car-rots and oranges and apples.”

Max brightened. “No eating apples here!”

“That’s right buddy. But we can have some French fries.”

Inside, we ordered our usuals and waited for a table. Max played with the sticker game that the cashier had given him.

When the food came, we ate silently. He brushed my forearm softly with his fingers. I responded by running a French fry along his forearm. Max giggled and did the same to me. As we were leaving, I realized we hadn’t spoken a word.

Out in front, the sky was dark on one side but purple and orange behind the palm trees. It looked like a tropical sunset right
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here in the desert of Sacramento Valley. Max paused to look up at his giant
X
wearing two green wigs and said, “No eating apples here.” We walked to the car holding hands.

Max may be a wallflower
at the language dance, but my older son, Nathan, is a virtuoso. A fifth-grade Alvin Ailey in braces. A pint-sized Merce Cunningham with freckles. It’s not that his syntax is more complicated or his vocabulary larger than that of any other eleven-year-old. It’s not that his classroom com-positions are anything other than average. If they were, I might picture him as a young Mikhail Barishnikov.

But what Nathan can do is harness words in conversation to capture abstractions, express doubts, or create a vivid picture in the listener’s mind. And he has always been inclined to talk about life’s most important questions.

It was this way even when he was very young. One cloudy afternoon, when we lived in San Francisco, four-year-old Nathan asked from the car’s backseat: “What’s the name of those guys in outer space?”

“What do you mean?” I responded.

“You know, those guys. They live in outer space, and they made the world and all the things in it.”

I was puzzled, but I took a stab at it. “Do you mean God?”

“Yeah, that’s them. Why did they do that?”

We sat at a stoplight and I stared at his reflection in the rearview mirror, wondering whether I should comment on the plural deity remark or go straight for an understandable answer. I chose the latter.

“So that people and animals could live their lives and sometimes be happy.”

I continued to watch his face in the mirror to see if the answer was satisfactory. He nodded just as the light turned green, and I exhaled in relief. But I had a premonition that I would be faced with many difficult questions in the future.

• • •

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Nathan and I stood outside
a theater last week, enjoying the warm evening air for a few minutes before going inside to get a seat for the movie. As usual, he brought up an important topic abruptly and with no warning.

“How much of Max’s autism will all this therapy get rid of?”

he asked.

I considered explaining that “get rid of” wasn’t really our aim, that “function at his highest ability” was a better way to phrase it, but I decided not to correct him because I knew what he meant.

“I don’t know. I just know it makes a difference,” I said.

“Because if he still talks like this when he grows up,” Nathan continued, “that will
not
be good. I mean, he’s just as smart as normal kids in some ways, but he just can’t show it with the way he talks. He remembers everything, and he figures out problems.

And he’s a pretty good reader. He just can’t communicate very well and he acts weird sometimes.”

I nodded.

“But one thing’s for sure: He’s going to get married,” he added.

“Why do you say that?”

“Because girls have always liked him. They think he’s good looking.”

It was true that some girls have really liked him. It began in nursery school. Each morning as we walked up the pathway to the school, one would have thought a young Elvis was arriving because of the chorus of, “Max! It’s Max!” coming from the five little girls waiting at the window for him. Many of his days there began with a group hug followed by an argument among the five over who would play with him first.

Nathan looked away from me. “No girls thought I was good looking when I was his age,” he said.

This took me aback. I had never before realized that, in Nathan’s eyes, Max could be considered a worthy rival.

“You’re just as handsome as your brother. Anyway, that’s not why girls like him. I think it’s because he’s different,” I said.

Nathan looked me in the eyes for a moment, then nodded.

“He’s not like other boys.”

We stood quietly for a few minutes, then walked into the theater.

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• • •

Davis is a bicycle town.
There are about sixty thousand people living here with about the same number of bicycles. The bike is held in such reverence that developers and city engineers must put in parks and bike paths before building new neighborhoods.

It stands to reason, then, that in a town like this, learning to ride a bicycle is a rite of passage. For some children, the skill is gained before entering kindergarten. For most, it happens between kindergarten and first grade. There are a few stragglers with training wheels still on their bikes during first and even second grade. They usually travel the less-frequented paths with their families and pedal behind bushes to avoid being spotted by approaching acquaintances. On rare occasions, I see a big kid riding a bike with training wheels, and I usually assume the child has some type of disability.

I was afraid that this would be Max’s future. He has problems with coordination and balance, and he had no desire to have his training wheels removed. But then I got word that Dr. Dick was coming to town.

Richard Klein, a retired mechanical engineering professor from the University of Illinois at Champaign-Urbana, travels to various regions of the United States with about a dozen contraptions he has invented in his retirement. Professor Klein decided to turn his attention to creating something that would help disabled children, and what he ended up creating were variations on the bicycle. Some have enormous tires in front, others have rolling cylinders where there used to be tires. What these contraptions do is slowly accustom a child to gaining balance while pedaling on increasingly less stable vehicles. I was told that the feat could sometimes be accomplished in as little as one week, the length of Klein’s bicycle camp. I signed Max up.

Day one: Max started on a bike with wide, gently sloping rollers. He moved through three different levels in two hours. Day two: Max flew through the various stages of cylinders and, by the
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afternoon’s end, was riding the most difficult bike with rollers.

Day three: Max began with rollers and quickly graduated to the two-wheeler with a fat wheel in front. He fell off and went back to riding the one with rollers. Day four: Max rode around the gymnasium twice on a bike with small cylinders and then, with the help of one of Dr. Dick’s aides, took off on a regular two-wheeler. I was ecstatic! This changed everything—we could really go places together. And Max would be able to do something just as well as other kids his age.

That night, Alex took the training wheels off the old red bicycle that had been handed down to Max from Nathan and that had served Max well for two years. Max was reluctant, but we convinced him to try it. He got started pedaling, then put his feet down and fell over. He refused to get on again after that and kept saying, “It’s too big.”

The next evening we tried again, with the same result. Then Alex said, “Max, you’re right. This bike is too big. We need to get you another one.”

The red-and-black Schwinn Falcon that came from the back of Alex’s truck the next day was enough to make any boy’s heart pitter-patter. Max walked around it and asked a few times, “This is mine?” Then Alex got on one knee and said, “Max, this is your new bike. It doesn’t work with training wheels.”

We took it across the street, parked it on the bike path, and said nothing more. Alex and Nathan started playing basketball. I picked grass and watched. Max circled the shiny two-wheeler, then stood looking up at the trees. He circled it again, then stopped to really stare. The black paint on the frame shone from the fine glitter in it.

The racing stripes and the word
Falcon
were in red. The patent-leather seat had silver adornments on the sides. Finally Max said in a small voice directed at no one, “Can I ride it?”