Thursday, October 27, 2005

You've got to be joking

I seem to spend a lot of time thinking about Bud's "theory of mind" and looking for examples of his ability to use it. If Bud is going to learn to communicate - I mean real interpersonal communication, not just human interaction - then he needs to learn not only how to comprehend the words that are being spoken, but also how to interpret the intentions and motivations behind them. I try to provide a lot of opportunities for him to hone his skills.

The other day, Bud was playing with a basketball and he held it up to me. "Mama, what's this?" (Readers familiar with this blog will know that giving this kind of "pop quiz" is one of Bud's favorite pasttimes.)

I considered the basketball. "That's a monkey," I said.

"No, it's not a monkey," said Bud.

"Oh, right. It's not a monkey. It's an elephant."

"No, it's not a ..." Bud stopped himself in midsentence. Then he looked at me suspiciously, and said, "You're joking me."

He's on to me!

Tuesday, October 25, 2005

More chaos and creation

I posted previously about how much Bud and I enjoy Paul McCartney's latest CD, Chaos and Creation in the Backyard. Since then I've been thinking a lot about what an appropriate title that is for our life right now.

"Creation" is a primary goal for Bud these days. He is learning to string words together to create meaning, instead of using scripted language to approximate it. He is learning the art of creative problem solving, instead of relying on us to solve his problems for him. He is learning to assert himself and make his wants and needs and preferences and ideas and imaginings known - he is creating his self-image and, with our help, creating his place in the world.

At the same time, Bud likes routine and predictability. He likes knowing what's going to come next, and likes the satisfaction of having things play out just as they "should." Often, and especially in times of stress, Bud needs that kind of routine and predictability. However, I find that the student development theory I use with college students works with Bud as well. The theory suggests that to develop to their greatest potential, students require an environment that provides the right balance of challenge and support. In an environment that provides too much support and not enough challenge, a student will stagnate. In an environment that provides too much challenge and not enough support, a student will become overwhelmed and will shut down.

And so it is with Bud. He needs routine and predictability, but if we allow him too much of it he turns further inward and his creative ability slows. If he has too little routine and predictability, he is scared and anxious, unfocused and distressed. We must constantly reassess and readjust to find the ever-changing balance; we must preserve enough of the "known" to help him to feel safe, and find just the right moments to introduce an element of surprise, of uncertainty... of chaos.

These are not move-the-earth moments. They are tiny moments that are easy to miss, but they are of critical importance to Bud. One of those tiny moments happened last week while we were playing with his Teletubbies.

"Mama, what Tinky Winky's favorite color is?" Bud asked.

I knew the right answer. The right answer is purple. We have played this game a million times, and the right answer has always been purple. Tinky Winky is purple, so purple is his favorite color. To suggest otherwise in the past has been to start an argument. And yet... I went there again.

"Well," I said, "Tinky Winky is purple. But today I think his favorite color is orange." Bud considered my answer without comment. No argument, but no comment.

"What Dipsy's favorite color is?" And the game continued. I suggested that Dipsy liked blue instead of green, Laa Laa preferred pink to yellow, and Po would rather white than red. Bud accepted my answers quietly.

"Bud," I asked, "What do you think Tiny Winky's favorite color is?"

"Yellow," he answered.

One small step for a Teletubby; one giant leap for Bud.

Another moment, a few days later. Bud was playing with the Tubbies again, this time having them act out a script from a video: "Four happy Teletubbies hopping 'round the tree. One went to hide, and then there were three..."

"Yeah!" I said. "The Teletubbies can play hide and seek! Dipsy can be "it" and the others can hide."

Bud dropped his script instantly and set to work hiding and seeking, creating interTubby conversation, and helping them play the noncompetetive and highly collaborative Bud-version of this popular game in which the hider announces his location as soon as the seeker is in sight ("Ready or not, here I come!" "Here I am, Dipsy. I in the plant!") Another creative leap forward.

Then last night, as we were getting for bed we were playing a rousing game of "I Want To Wear Jammies," a game I developed a couple of years ago when Bud was first starting to use language. It's a game designed to encourage turn-taking, model the back-and-forth flow of conversation, introduce unpredictability, and provide opportunities for shared emotion. The format is simple: we take turns naming places where we'd like to wear our jammies, the more absurd the better. So, for example...

"I want to wear jammies... to school!" ("School? Hahahahaha...")

"I want to wear jammies... to church!" ("Oh, that would be so silly!")

You get the picture. While still a favorite game, I Want To Wear Jammies has outgrown it's usefulness, since Bud has mastered the skills it introduced. Now, in fact, it has turned into something of it's own script, since we tend to visit all the same places every time we play.

This time, though, Bud threw me a curve ball - a place I hadn't heard before: "I want to wear jammies... in space!"

"Space?" I said, my eyes as wide as I could make them. "I want to wear jammies in space, too! Let's go!" So we jumped into his bed (our spaceship), counted down from ten, and shouted "Blast Off!" as we hurtled into the sky.

"WOW! Look at that!" I said, pointing at the lamp. "Look what's out the window!" (Please, Bud, I thought, don't say you see a lamp...)

"Yeah!" said Bud, looking at the lamp. "It's stars!"

"Stars!" I said. Then I pointed to the toyshelf. "And look at that!"

"A moon!" he said, awe in his voice.

"And, oh, my goodness," I pointed to the ceiling. "Out there - it's p-"

"PLANETS!" he shrieked.

Outer space.

One giant leap.

Dissonance and discovery.

Chaos and creation.

Tuesday, October 18, 2005

Happy sadness

Sometimes it's his most difficult feelings that Bud expresses best. Last week I had to work late, and missed the dinner, bathtime, and bedtime routines. Though Daddy and Nana were here to make the process run smoothly, Bud grew increasingly dismayed as the evening wore on.

"I'm sad," he told Nana.

"What makes you sad, Bud?" Nana asked.

"I'm not..." he started.

"I don't..." he said.

"Mom nots..." he tried again.

Then slowly and carefully, he put his thoughts into words: "I don't...want...Mom gone." (And, for the record, if I can put my own thoughts into words for a moment - Mom don'ts wants to be gone, too.)

This weekend Bud and I were headed out for a day of errands, and Daddy was planning a day for himself. Bud seemed fine with the plan; he put on his coat, gave Daddy a kiss, and announced that he was off "to the Red Store!" (Target, of course.)

Bud went out to the garage ahead of me and I dashed back into the house to get something I'd forgotten. When I got to the garage 30 seconds later, Bud was awash in tears. Before I could look for blood or ask what had happened, Bud looked in my eyes and said "I miss Daddy!" We ran back into the house and Daddy wrapped his arms around Bud and held him tightly.

"Do you want me to come with you, Bud?"

"Yes."

"Okay, honey. It's okay."

Bud looked over his shoulder at me and smiled through his tears. "Dad's gonna go with him."

Of course, good parents never want to make their children sad. But sometimes... sometimes it really is worth it.

Saturday, October 15, 2005

Autism is a World

I finally saw the Oscar-nominated documentary Autism is a World. It blew me away.

Autism is a World is the story of Sue Rubin, a 26-year-old woman with autism so severe that for many years she was believed to be mentally retarded. She is mostly nonverbal, but through a communication device she is able to type words, sentences, paragraphs that are not only intelligible, but also profound. Through this technology, she communicates her insights about autism, her reflections on being autistic, and her frustrations with having her inner world of thoughts and ideas trapped under a shroud of disability. It supports - by irrefutable living example - the theory that inside every autistic person is a healthy non-autistic person waiting to come out.

I don't think I have a place in my head to file this one. I haven't had enough time to process it. I don't know what it means. And I don't know what to hope for. Do I hope that Bud is aware of his disability - that he has deep thoughts and feelings that he simply can't (but someday might) express? Or do I hope that he is blissfully unaware - that his perky, happy temperament is Bud through-and-through, and that there's no non-autistic Bud ready to be pulled to the surface? It's a tough question to ponder.

I think this is why, as I read through other autism blogs that are out there, I feel so torn between the "biomedical" folks, who subscribe to the DAN protocol and other interventions focused on finding a cure, and the "neurodiversity" folks, who celebrate people with autism just as they are and who focus their energy in trying to break down barriers to create a world that is fair to and accepting of people on the spectrum. There is significant debate between the two camps, much of it mean-spirited and destructive. But there has also been some civil discourse. A couple of months ago, on his blog Injecting Sense, biomedical proponent Wade Rankin got some healthy conversation going and created a few sturdy bridges. Despite that, this week another autism blogger, neurodiversity proponent Kevin Leitch announced on his blog Left Brain/Right Brain that because of the hostility he's encountered he is no longer comfortable posting about his daughter.

Autism is a World is a remarkable documentary, and it provides an important insight into one woman's experience. But I am reminded again, as I am reminded so often, that "if you've met one person with autism, you've met one person with autism." There are no universals in this universe. Autism is a world - one in which we must each thoughtfully, carefully make our way. But as we sort out this world as it relates to our particular person with autism, we must also create a village in which it's safe to raise all our children.

Tuesday, October 11, 2005

A Wild Ride Up the Cupboards

I recently read, and loved, this essay by Ann Bauer in which she recounts the story of a roadtrip to Fargo with her teenage son, who has autism. The essay prompted me to buy Bauer's first novel, A Wild Ride Up the Cupboards, which tells the story of a woman who (like Bauer) has three children, the oldest of whom begins developing the symptoms of autism when he is about four years old. In Finding Fargo, Bauer writes that the characters in the novels have similarities to her family, but are not her family. Therein, I believe, lies the problem.

I really wish that Bauer had written a memoir. In one short essay, she captures so many moments that I recognize instantly - despite the fact that my autism journey has just begun and she is the second decade of hers. The novel, however, did not have that same resonance for me. I enjoyed it and it held my attention, but I did not recognize it. There is one plot point in particular - one very critical plot point upon which the novel turns - that simply seems artificial. I believe that Bauer used it as a vehicle to demonstrate the level of desperation that her characters felt; I understand the desperation, but I just think it was the wrong vehicle. On the other hand, I have to consider the possibility that this very artifical-feeling plot point is one that is a direct lift from Bauer's life. I reflect on the times in my own life when I've thought, "if this all happened in a movie I'd think it was far-fetched and unrealistic." Life - and life with autism - can be like that.

Bauer also uses a sub-plot that explores her main character's family history and the potential autism connections that may have been floating in the gene pool. Though both very engaging, the sub-plot and the main plot never quite come together. They continue to float, in search of a connection that is never really made.

Perhaps that makes the novel itself a good metaphor for autism and parenting. We parents, driven by love and consumed with the mission to heal our children and create a safe haven for them in the world, search, seek, dig, divine, suppose, consider, react... and, in the process, travel a good many paths that lead to, as Bauer's character with autism dubs a stretch of road he's travelled, "the Nowhere Place." And - when we're lucky - along the way, there are moments of clarity, moments of insight, moments of magic.

Friday, October 07, 2005

Wild moo yonder

Bud's favorite toys are his character figures. He has full sets of his favorite casts - Blues Clues, Teletubbies, Sesame Street - and increasingly he uses these figures to create his own storylines, sometimes even concocting plots in which Clifford the Big Red Dog hangs out with Barney and Baby Bop.

What he really loves, though, is recreating favorite scenes from treasured videos and tv shows. He's a skilled director - framing the shot, working out the blocking, and even doubling as dialogue coach. When he doesn't have a full set of characters or when he needs a guest star, he is happy to improvise and pretend - so the Fisher Price dollhouse mom and dad regularly fill in as the Kratt Brothers when he plays Zoboomafoo, but can also serve as Steve and Joe when both are needed for Blues Clues.

This week he's been taken with a recent episode of Caillou, in which Caillou and his family take a trip on an airplane. Bud has figures of Caillou and his little sister Rosie, but the Fisher Price parents were called into action to play the roles of Caillou's Mom and Dad. The scene that got the most play was the one in which the family was invited to visit the cockpit (which, for some reason that most certainly exists but I haven't yet figured out, Bud insists on calling the "plane-tent.") In Bud's depiction of this scene, the players have consistently been Caillou, Rosie, their Mom and Dad, and a toy cow. Each time, the cow cheerfully greets Caillou and his family, "Good morning, young man! Would you like to visit the plane-tent?" and a tour of the cockpit ensues.

It took a few viewings of Bud's cow-in-the-airplane scene for me to understand what was going on. At first I thought the cow was flying the plane. Then it hit me. The cow wasn't the main pilot.

She was the co(w)pilot.

Thursday, October 06, 2005

We love us the bad grammar

I've posted previously about Bud's unique speech patterns, and his ability to retrieve sentences from his vast store of tv/ video/ computer scripts, change all appropriate nouns, and slide the adapted scripts into "conversation." He has really honed this particular talent to the point that he can often "pass," and even impress his teachers at school.

"It was so sweet," a teacher will tell me at pick-up time. "Today he told me that I could be his mystery friend and he likes my brown hair."

"Mmm-hmm," I'll reply. "Sesame Street Computer Caper."

Or, they'll meet me at the door with "He did a great job letting me know how he felt. He said his throat is sore and he thinks he needs his medicine."

"Yes," I'll say. "Caillou had the same problem this morning."

But sometimes he uses language that really impresses me and shows me that he is definitely making progress. This weekend we were pitching a tent in the living room and, as he tends to do when he's enjoying an activity, he asked me about it in a "pinch-me-so-I-know-this-is-real" sort of way.

"Mama," he asked with a big grin. "What we are set upping?"

My heart swelled. "What we are set upping?" A phrase never uttered by Elmo or Arthur. A real, honest-to-goodness constructed sentence with a mistake that proves without question that Bud recognizes that there are rules that govern language, and that he is learning to apply them.

"We are setting up the tent!" I announced.

"We are setting up the tent!" he echoed.

We continued our work, and his enthusiasm grew.

"Mama?"

"Yes, Bud?"

"What are we setting up?"