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.

i love you, MLK, but...

Another crummy day. Out of sorts. Unhappy for no apparent reason. Willing to go to the mat over eating a few green beans.

I can only go with Martin's one request (besides to watch the Muppet Movie). He asked me this morning if he could go to school.

Good thing tomorrow is not a holiday.

for what it is

Inexplicably bad behavior. Despite a nice morning, an afternoon visit to the ice cream shop, and friends for dinner, Martin was a P-I-L-L. He asked for The Muppet Movie at least 100 times. He disobeyed. He swatted at people and tried to kick. No fun at all.

Sometimes Martin gets really out of sorts. I have no idea why. There are two problems in this situation. First, the world doesn't slow down when he's in this kind of mood. The people invited to dinner more than a week ago will still arrive on cue. And second, the things that normally help him snap out of a funk don't seem to work. If ice cream can't make a 5-year-old happy, what will?

My only guess is that Martin - like other typical kids - gets tired and cranky and takes it out on everyone around him. I guess that makes him like some adults as well.

So I'm not in the best blogging mood tonight. Like Martin, I think I just need a good night's sleep and a clean slate in the morning.

the perils of bowling

Martin's class went bowling yesterday. He scored a 69. According to his teacher, Martin seemed to have a lot of fun once he got the hang of things. But the first few rounds were fairly stressful. Martin did not want to take turns.

For some reason, autistic kids have a hard time learning how to take turns. Part of Martin's therapeutic program last year included reading stories about taking turns, rewards for taking turns, and games about taking turns. He's made progress. He can sit through a game of Crazy Eights (with other rules modified). But Martin did not want to wait for his turn to bowl yesterday. And he was upset about it the rest of the day.

I could tell that Martin was upset for two reasons. He misbehaved all afternoon and early evening. And then close to bedtime, he became mournful. He came to me, with tiny tears in his eyes, saying, "The arrow was not pointing at me. It was not my turn. And Mrs. S said I should wait and Mrs. F said it was not my fault." All of these sentences referred to bowling, but then Martin moved on to other things he thought were sad. "I saw a picture of a baby in the sky. And it was baby Jesus. Let's go find the baby....And I think the Muppets are scared because it is nighttime."

I'm not sure if bowling was so upsetting that Martin had to experience a full-on, makes-no-sense, depressing evening, or if he just connected anything he feels confused about to his frustration at the bowling alley and needed to say those things out loud. I just let him sit on my lap and tell me about the bowling and baby Jesus and the Muppets. I offered him a bowl of cereal, which seemed to make things almost better. Then I tucked him into bed - surrounded by stuffed animals - and he fell fast asleep.

I'm reluctant to try bowling again.

strange and unstrange

Tonight we had one of the most pleasant meals in the last two years. Both children sat at the table. No one cried. Both kids ate all their food and got a treat of chocolate ice cream. There was no food on the floor, well, not counting some stuff that landed there yesterday.

It's not that Martin never eats a full meal. If we serve spaghetti with peas and applesauce, we've got a good shot at a clean plate. He also eats sandwiches and other pastas and pizza. But tonight was a stretch: omelettes. My husband cooked a cheese omelette and I cut it in half, one slice for each kid. I expected Sasha to eat hers. She's like a 20-pound garbage disposal. I had no aspirations that Martin would eat his, unless bribed to take one bite in order to get a helping of applesauce.

When Martin arrived at the table, he looked at me and asked, "Is this a pancake?" Immanuel Kant be damned, I answered, "Yes, it's a type of pancake. It's an omelette-pancake." Martin started to eat. And even though omelettes don't taste like pancakes, he kept going after the first bite. He ate the whole thing. Then he gobbled down some carrots and some applesauce. I was completely amazed. I wondered if this is how parents of typical kids feel all the time.

I knew we couldn't get through the whole evening without a little bit of funkiness. Just before bed, Martin happened upon some stamps that had arrived in the mail (from one of those insidious companies that sends you stuff you don't even know you might want). The stamps were from Liberia, a set commemorating the U.S. presidents. Martin was elated. Indeed, he was sure he could not go to bed without the stamps. In fact, I think I hear him monkeying around upstairs, probably pining for the stamps.

As he glanced at the set of stamps, he looked up at me in wonder and said, "Look, it's John Adams." Strange. But tonight he was also a little boy who tried some new food and ate it all. Unstrange.

words

I was giving Martin a bath tonight. While he was splashing around, I asked him who he loves. He got a big grin on his face and said, "I love me." He noticed my amused reaction and repeated it, "Yeah, I just love me." It was one of those late 1970s, free-to-be-you-and-me moments.

While Martin brushed his teeth, I told him that I loved him, too. He seemed to both get it and not get it at the same time. He knows what the phrase "I love you" means. But his earlier efforts to be playful with the phrase posed a problem. He looked at me quizzically and asked, "Do you I too love me?" If you need to return to that phrase, it's not because you're a bad reader. It makes no sense. Martin, however, seemed unphased when I couldn't answer his question. He just kept brushing.

Martin's little sister is starting to string words together. She can say, "Where's Mart?" and "Go downstairs." I wish I could better remember Martin's verbal life at the same age. I know he said lots of single words. Our housemate at the time made a list to keep track of them. I know when Martin said zebra for the first time. But I wasn't looking out for developing sentences. I had no idea that every phrase he used was simply repeated from memory with no real sense of what the language was doing.

Martin still has many moments when language trips him up. Things that seem relatively simple - if they're new to him - can be utterly baffling. He looks up blankly even though were not speaking Chinese.

But I him too do love.

empty of bologna

Last night, Martin and the rest of the family picked me up at the airport. I returned from a wonderful, three-day conference in sunny San Diego. Did you know that fish tacos are a perfectly appropriate breakfast food?

Unlike other times I've returned from trips, Martin was quite talkative. He told me he had gone to church in the morning. He told me our friend, Alex, had visited. He told me of his plans to go to the Akron Zoo - immeadiately. I turned around to him, reminded him that it was late at night, and asked him if he was full of bologna. He put his arms on top of his head, felt around a little bit, and replied, "No, I'm empty of bologna."

Martin had a good few days while I was gone. Each school day gets better and better. No time-outs today. On Thursday, his class is going bowling. On Friday, his grandparents are coming for a visit. He seems to be in a good space. I can tell this because he was in such pleasant spirits tonight. He read books aloud. He tried a "different cheese sandwich," even though we didn't prepare it the way to which he's accustomed. And he went soundly to sleep after thanking God for zoo animals.

I agree. He is empty of bologna.

got to admit

How does that Beatles song go? Not the one about Scandinavian trees, but the one with the line, "I've got to admit it's getting better, a little better all the time." That's school right now. Day two involved just one timeout, at lunchtime. Day three had no timeouts, but did include a meltdown at "grooming time," when the whole class brushes their teeth and washes their cute little faces. Because he had no timeouts today, Martin got a reward of chocolate ice cream.

Today was important not only because Martin made progress at school, but also because he met a new friend. Let's call him Jake. As far as I can tell, Jake is a sort of play therapist. He works with all sorts of kids on the autism spectrum. Somehow, ostensibly because he's going through a school transition, Martin qualifies for some time with Jake. (Don't tell my insurance company that my kid's autistic. That's just between you and me.)

Martin had his first appointment with Jake today. They played some games. They worked on things like taking turns, putting things away at designated times, and talking about feelings. I got to sit in on the last 15 minutes of the session. Martin didn't do everything Jake asked, but he enjoyed working with him. And when Martin and I got ready to say a prayer before supper, I asked Martin what he was thankful for. "Jake," he replied. I just had to squeeze him.

Things aren't perfect at school. I'm really glad that the teacher works on "grooming." It's a huge challenge for Martin. He doesn't want to get haircuts, have his fingernails trimmed, or (I hate to admit) wipe his bottom. I'm thrilled that a teacher is working with Martin not only to learn to read better, but also to stretch him in the areas where the real world is the hardest for him. I'm hoping that if I send his favorite toothpaste along, things might get easier.

By June, I hope we'll be singing about strawberry fields.

grades

Drum roll, please..........

The first day at school was.........

A resounding "OK."

Martin had a mostly uneventful day in his new classroom. He refused to listen a few times and found himself in timeout. He told me that he played some games. He told me liked his teacher. He was in good spirits this afternoon and evening. He went to bed without a peep at 7:50, a little earlier than usual.

Having vivid memories of Martin's other first days of school, I consider this day a victory. When Martin was just three, he got politely expelled from preschool after four days of his refusing to do anything the teachers said. (This was just prior to diagnosis.) When he started in a special-needs preschool program just a few months later, he had to be carried into the classroom as I walked away sadly. Even with a tutor helping him last year, Martin struggled for the first six weeks in his mainstream preschool class. And you've all read how he did with no tutor this year. We decided to use that old college romance tactic of breaking up with the school before they could break up with us.

Martin went to school by himself today. And it went just OK. But just OK - even if it involved some disobedience and timeout sessions - is something I welcome. And this seems perfectly fine for me, even if I was a kid with enviable report cards back in the day. Before I had a kid, I would probably have expressed a lot of ambivalence about having a kid who gets a "C" on a good day. I'm fairly tough on the kids in my classes. Having Martin hasn't made me want to promote every C into an A. Instead, I just don't care that I have a kid who gets Cs, as long as he seems relatively happy and healthy and is learning how to be kind to people.

Tonight, I remembered something important I had forgotten to mail. Martin saw me rush into my room, dig through my handbag, and search for the lost envelope. He touched my arm and said, "Relax, Mama."

A+

i love ya, tomorrow

The big day is almost here. The Muppet lunchbox is out of the pantry. The yoga mat is tucked in the penguin backpack. School starts tomorrow.

While I feel fairly certain that this classroom is the best place for Martin right now, my relief comes mostly from the fact that he simply cannot be expelled (at least for being autistic...I guess he could get the boot if he brought a gun to school). I'm not going to get a phone call that Martin is misbehaving and the teacher doesn't know what to do. Martin might misbehave. He might frustrate his teacher. Nevertheless, there has to be a place for him at public school, just as he is, no matter what. After a year-and-a-half of walking on eggshells, I can breathe a sigh of relief.

It might seem like low standards when your most powerful feelings about a school stems from your kid's lower chance of expulsion. Of course, I care about how Martin will spend his day, who he'll get to know, and what he'll learn. But Martin finds a way to learn even in the worst circumstances. Despite all the craziness of this past fall, his language exploded and his reading totally took off. Even if his new classroom is only average in comparison to other autism-specific classrooms, it will be far more suited to him than his classroom or homeschool experiences of the past semester.

In the end, tomorrow's transition might mean the most to me and my husband. We hope that it provides the stability we've been searching for and a break from all the work we've done on our own. If it does even a little bit in either of these two areas, I can easily say that I love the new school.

stories

Have you ever watched "The Muppet Movie"? If you've never taken acid, this movie might be a close approximation (although I'm just speculating). We watched "The Muppet Movie" this evening for our family movie night. We often choose older films because they move a little slower than contemporary movies and are easier for Martin to understand. Going for movies from the late 70s and early 80s, however, does not guarantee Martin's comprehension. How is he supposed to know that Steve Martin's waiter costume is hilarious? Why would he be amused by references to Hare Krishnas?

We started to let Martin watched little movies when he was about 18-months-old. He liked one of those Baby Einstein (aka Middle-class Paranoia about Children) movies about farm animals. He also liked a collection of Sesame Street songs. But we never even tried a full-length movie with him. I had heard of other kids, sometimes only 3 or 4, who could sit through "Finding Nemo" and other Disney offerings. I had two reactions to this information. First, I couldn't imagine Martin sitting through a movie that lasted 80 to 90 minutes. Second, I was secretly glad that my kid didn't have an attention span that could be owned by Disney.

But I should have known that something was up. As I've mentioned in a previous post, Martin watched "My Dinner with Andre", practically the whole thing, when he was two. He just watched with a blank expression. I have no idea what he got out of it. Even now, I'm not sure what he gets out of movies. Tonight, he said things like "The dog [Rolf] is playing the piano" and "The frog and the pig are in love." I can't be certain that he followed the dialogue. I think most of his apprehension came from the characters' physical actions.

Watching Martin watching movies makes me wonder what movies (and stories) are for. Is sitting down for an evening with "The Muppet Movie" supposed to be a little acid trip away from from one's regular life? Is it there simply to make no sense and offer us a little silliness? If so, I think Martin gets it and enjoys it. In fact, I know he loves family movie night. But if watching children's movies is supposed to train us to love and understand stories, so that we might devour more of them as adults, I'm not sure it's working with Martin. And even though he sees movies sometimes and reads dozens of books a day, I'm not sure that the thrill and charm of stories has yet to work on him. I have yet to see him get carried away.