par-teh

Martin attended a classmate's birthday party today. There were many nice things about. Martin enjoyed the cake and ice cream. My husband, who took Martin to the party, got to meet more parents of autistics kids then he ever had before. It was like an impromptu support group. In a good way.

I was worried about one thing: the party was held at an ice rink. I was a little concerned about the setting. Martin doesn't like to try new things. He struggles to follow directions when told how to do new things. And it can be hard for him to tell his limbs what to do. I wouldn't say he's uncoordinated, but learning new physical skills is not easy for him.

To everyone's surprise, Martin happily put on skates when the other kids did. He held onto the instructors, and went out onto the ice. He stayed glued to their sides the whole time. But he did it. He stayed out on the ice with everybody else. A complete shocker.

This is a kid who gets upset when he visits a zoo that is not set up exactly like the one in Akron. This is a child who will eat strawberry jam, but not raspberry. But today he went to a brand new place, tried on skates, and went out onto the ice with absolute strangers. I'm taken aback. Par-teh!

postmortem ventriloquism

Postmortem ventriloquism? What is that? Well, it's one of my spouse's favorite phrases. He uses it to describe the way living people ascribe words to dead people, like funeral sermons that go like this: "If Bill were here today, he'd be thrilled that Uncle Pat is wearing blue jeans instead of a suit. And he'd be so glad there's potato salad at the luncheon after the service." For my spouse, these funeral moments are among the strangest things human beings do. So he made up a term for it.

I've found myself having my own little moments of postmortem ventriloquism today. Two writers I love died in the last two days. J.D. Salinger and Howard Zinn. Even though most people over 30 give up on Salinger, I'm still a huge fan. And not because of The Catcher in the Rye. Instead, I have an abiding affection for the characters that make up the Glass family in "A Perfect Day for Bananafish" and "Franny and Zooey." And maybe everyone over 30 also gives up on Zinn. He was a certain kind of historian. And maybe those of us who are working historians don't do things his way, but I'll never forget reading A People's History of the United States. About 15 years ago, it rocked my world.

But why consider these two men on a blog purportedly about autism? Well, I have to wonder about Salinger's fictional characters, their savant-like knowledge, their inability to fit into the world. I would never go so far as to say that all the Glass children seem autistic. But there is a space between them and the world that reminds of the space between Martin and world. A space and a sadness. Somehow, Salinger treasured that space and made it seem less lonely.

And I think of Zinn and the way he spent his entire career trying to point out that how you tell a story matters. That it matters for all the people left out, like the Taino people who encountered Columbus. Only in the last few years has it come to the public that there are autistic people in this country. You see billboards and TV reports and People magazine covers about it. But it's such a recent event. I think of a friend of mine who grew up with an autistic sister. His family could find no help for her. They even drove across the country to see a doctor they hoped would help them. That doctor promptly blamed the girl's condition on the mother. There's probably thousands of people with stories like that. So Zinn makes me think about how I'm lucky to be dealing with autism at a time when other people have at least heard about it. And it makes me wonder who we're still forgetting.

So farewell J.D. and Howard. I won't try to predict what you'd say from the great beyond. But I thank you for shining the light on so many hidden and forgotten spaces.

hey, universe

Martin was more pleasant this afternoon and evening than he's been in recent memory. He did not throw a fit, scream out in distress, or slam a door. I'm not sure what made it happen, but it sure was nice.

I'm gotten so used to frustration and fits that those things are the norm. That's not to say that Martin isn't a nice little kid. Sometimes he's positively angelic. But even more than typical kids, children on the spectrum seem to struggle so mightily when things don't go their way. It's the anger and frustration any of us would feel, coupled with the confusion that comes with having a language processing disorder.

I'm always reminding myself that even though Martin has made so much language progress, it's still not natural for him. He must feel - everyday - like some of us feel when we visit foreign countries and lack language fluency.

My hope is that Martin will someday catch up to his peers in language proficiency. Most of the professionals we work with think this is an achievable goal. In some respects, he has the chance of moving from the PDD part of the spectrum to the Asperger's end, which is marked primarily by social difficulties. Though I don't know what it's like to have an Asperger's child, I can't help but think that social awkwardness is easier to deal with than deficient speech. But maybe parents of kids with full-blown autism look at my experience and think it's a cakewalk.

Whatever the case, I'm glad for a good night. Thank you, universe.

games

Martin played a game with me tonight. He doesn't play many games. Taking turns is hard for him. Learning rules to games can be hard for him. Somehow he knows factoids about William McKinley but cannot figure out how to play Chutes and Ladders.

Tonight, Martin wanted to play a guessing game. He laid about some animal figurines in front of him and said, "I am orange with black stripes. What am I?" Sometimes he would wait for me to answer and sometimes he'd jump in and squeal, "A tiger," and laugh uproariously.

While this game is very simple, it contains forms of speech that Martin finds difficult. It involves describing. It demands asking questions. It requires waiting for another person to answer and offering them another clue if they don't get it right the first time.

I got Martin to take turns a few times. Being the guesser proved more difficult for him. I said to him, "I have eight legs and live in the ocean. What am I." Despite having an octopus figurine right in front of him, he looked at me and said, "I don't know. What is it?" Even with more clues, it was often hard for him to guess. But sometimes he got it.

Martin has a lot of days where he's not in the mood to play with me. He'd rather construct little tracks for his trucks or line up marbles or use his stuffed animals to act out Sesame Street episodes from memory. In these ways, he still shows all the signs of being a child on the spectrum.

Tonight included moments when it seemed like we might be off that spectrum for just a little bit. I know I shouldn't want my kid to be any different than he is. And deep down I don't want him to be anything other than himself. But my heart is cheered when I can play a game with Martin. It means a great deal to me when he can say something and I can understand it. And vice-versa.

the new

Here's how Martin deals with the new.......at least sometimes.

Today we decided for a trip to the Cleveland Zoo. Since our zoo membership at Akron gets us in free in Cleveland as well, the stakes were low. A little bit of gasoline. A little bit of time. We hoped for the best. And we certainly visited a nice zoo. The primates were especially fun. Two areas of the zoo were full of a variety of monkeys, gorillas, and orangutans. My baby daughter loved it. She spent a good 10 minutes communing with a tiny spider monkey that crawled up to the glass just inches from her. Martin concentrated on some ramps and the tram that took people around the zoo. If he wasn't thus occupied, he asked to go to the Akron Zoo.

Here's how Martin deals with the new.......other times.

Martin and his Dad work nearly every day on Spanish using Rosetta Stone software. It's a perfect program for autistics, combining words and pictures to aid memory. Martin not only knows a lot of Spanish, he has entire sections of the Rosetta Stone program memorized. He says phrases from the program and then imitates the noise the program makes when you get answers right. Typically, Martin answers questions and points at pictures while my husband operates the mouse. Last night, Martin said that he wanted to try. He sat in the office chair, put his tiny hand on the mouse, and navigated his way through several screens. He had never done it before. We hadn't told him how.

We never know what new things will work and what new things won't. Maybe we should try all new things inside the boundaries of the Akron Zoo?

my way

You know that song, "My Way," by Frank Sinatra? I hate that song. Not just because it's schmaltzy. But because it presents doing things "my way" as some sort of renegade thing that makes you truly human. Because I have an autistic five-year-old who struggles the moment anything doesn't go his way, I'm a little sensitive about popular wisdom that trumpets the self at the cost of other relationships.

Like so many kids, Martin wants things to go his way. In that way, he is not unusual at all. But when he's faced with something that gets in his way, he has fewer resources for dealing with it. Sometimes, he doesn't understand that his way isn't going to happen. Other times, he can't express his feelings about not getting his way. And still other times, he can express how he feels, but only in socially inappropriate ways. Maybe it would help if he could sing Sinatra? At least itcould help him channel his feelings?

My husband and I are constantly working on Martin's unwillingness to try other ways. It has hindered him in all of his school experiences until his current one. It's the reason he still attends a Sunday School class for preschoolers rather than the class for kindergarteners and first graders. It's why we tell babysitters to let him do what he wants to do, rather than leave them with a kid who might kick at them and scream.

I could handle all of those adjustments if I was not afraid that Martin's fundamental ability to relate to others is at stake. If you do things your way, where is all the wonder that comes at discovering something that someone else introduces to you? Where is all the joy (and terror) of risk because someone else asked you to do something you never imagined? Unlike Sinatra, I would regret it if Martin never knows what that experience is like.

the thin green line

Martin's class has gym once a week. The kids go to the gymnasium. The first thing they do is run laps. They follow a green line around the gymnasium.

Today there was a school assembly in the gymnasium. When Martin arrived, he figured it was time to run laps. He refused to budge from the green line. I guess he caused a little scene. After school, we found the following text (called a "social story" by educators and therapists) in Martin's backpack:

"The Green Line

In school, we go to the gym for many different reasons. We go for assemblies, pictures, and gym class. When I am in the gym, I do not always have to stay on the green line. I will listen to the teachers and go where they tell me to go. Sometimes I will play in the middle of the gym. Sometimes I will sit on the wooden bleachers. Sometimes I will sit on the gym floor. I do not always have to stay on the green line."

For some reason, autistic children seem to respond better to complicated social situations when words are written down or pictures offered. It helps them process it all. We went over this text with Martin tonight. I asked him what happened at the assembly. He still seemed confused. "The children were lost," he said. "They were singing and I do not have to stay on the green line."

These moments break my heart because Martin so clearly is at a loss. He can't figure out what the world expects of him, even when it's spelled out on paper in front of him. He just wants to go to the green line and run laps, just like he does every other time he's gone to gym.