Tuesday, June 26, 2007

Cruella de Bud

Though Bud will be eight years old in a few short months, he has continued to be a fan of television made for preschoolers. While his peers are buzzing about Shrek and Spiderman, Bud's been content to focus his attention on the Teletubbies, Blues Clues, and Sesame Street. There has been a significant advantage to this: in the tv that Bud has always watched, there are no "bad guys" and the language the characters use is respectful and appropriate. As a result, because Bud still relies heavily on echolalia, his language - so often based on scripts from the shows he sees - has remained relatively innocuous and pleasant.

In recent weeks, though, Bud's been pushing the boundaries and taking a (tentative) walk on the wild side. He'd gotten a Disney book and cd set for Christmas, but had ignored it completely for months. Then suddenly - as he does - he pulled it out, dusted it off, gave it his full attention, and discovered the wonder that is 101 Dalmatians.

He's been reading along with the storybook as he listens to the cd. He's been listening to the cd in the dark each night as he falls asleep. And, much to my surprise, he has gone to the shelf that holds a wholly ignored and overlooked Disney video collection and pulled down the 101 Dalmatians DVD. For a while, he simply carried it around and looked at it. And then he watched it. Twice.

It has opened a whole new, thrillingly subversive door for Bud. I wondered what Bud's take on this new on-screen interpersonal dynamic would be: would he get the good-vs-evil interplay? Would he understand why we are cheering on dalmatians Pongo and Perdita and disdaining the evil Cruella de Vil and her thugs-for-hire, Horace and Jasper? But I needn't have worried. Bud understands it perfectly. He knows who the good guys are; he knows who the bad guys are. But for the first time in his life, he seems intrigued by - drawn to - not frightened of - the bad guys. So, suddenly, Bud's speech has become peppered with Cruella-speak:

"Why, you imbecile!" he'll shout at me. Or,

"You fools!" And, worse,

"Ah, shut up!"

Bud and I have started talking about time, place, and circumstance for words like that. We've talked about what makes Cruella a "bad guy" and why she uses words like that. He gets it.

"Mean words make people sad," I've explained. "We don't say mean words to people."

"Just to toys," Bud has offered.

And so I hear him as he plays with his characters, muttering under his breath as he makes Bert scold Ernie: "You IMBECILE!"

I recognize it as another double-edged developmental step forward. Bud's discovering another layer of the human condition. He's recognizing it within himself. And, truth be told, he's grooving on it.

He's channeling his inner Cruella. As for me - I'm just taking a deep breath and preparing myself as best I can for the tween years.

Sunday, June 24, 2007

You take the high road

In the summer months, Bud and I try to do our small piece to reduce the size of our environmental footprint by rolling down the car windows and keeping the AC off as much as possible. Bud calls it "having fresh air." The only time we forgo fresh air is when we'll be traveling at high speeds, when we know that: 1) the strong wind whipping through the windows will send our compact car flying all over the road; 2) the strong wind whipping by us, but still within reach, will prove to be too great a temptation to keep small hands and faces inside the car; and, 3) the strong wind whipping past our ears will make it impossible to hear the music on the radio - always one of the highlights of any car trip.

And so it was yesterday, as we pulled onto an on-ramp and Bud asked, "Can I have some fresh air?"

"Not right now," I reminded him, "We can't have fresh air on the highway."

"Just on the what?" he asked.

"Just on the ---" I started, then paused as I searched for the right term.

"Just on the low-way," he offered.

Yep. That'll do.

Friday, June 22, 2007

Unspeaking volumes

Sometimes it's the smallest moments that provide the greatest insights into the tremendous progress that Bud is making.

I've written a lot about Bud's language development - his earliest language, the flashes of development, my hopes for him to develop a flexibility and ease in dynamic situations. But sometimes it's difficult to recognize Bud's development as it happens. To be sure, our conversations have gotten lengthier and more complicated, his language more spontaneous and free - but as it happens day-to-day, it is sometimes only in retrospect that I can see how far he's come.

The other day, though, I recognized his progress in the moment. We were in the middle of the bedtime routine when I discovered that his toothbrush was missing. (Bud is a big fan of toothbrushes, and much to my chagrin he frequently carts them around the house to use as playthings and character stand-ins.) With a sigh, I instructed him to go downstairs to the other bathroom and retrieve his spare toothbrush.

I waited upstairs while I heard him pad down the stairs. Seconds ticked by, then minutes, and I heard him rattling around in the kitchen.

In an exasperated tone I shouted from upstairs, "Bud, did you find your toothbrush?"

His reply came instantly, also with a hint of exasperation: "Papa's in the bathroom!"

The conversation stopped me short.

In Bud's earlier logical, linear, concrete communication style, the question "Did you find your toothbrush?" would have had two possible responses: "Yes, I did" or "No, I didn't."

But Bud wasn't thinking in a logical, linear, concrete way. He was thinking in a flexible, dynamic, abstract way. He listened to my words, he listened to my tone, he considered the context, and he knew instantly that I was not actually asking him if he'd found his toothbrush. He listened to "Did you find your toothbrush?" but he heard (accurately) "I am getting frustrated because I told you to get your toothbrush and bring it here and you haven't done it yet."

Then, in a fraction of an instant, having considered my question, he responded. He said "Papa's in the bathroom," but he meant "Please get off my back - I am trying to follow instructions but I can't get into the bathroom right now and am just biding my time until I can."

Bud spoke only four words. But what he didn't say spoke volumes.

Thursday, June 21, 2007

Radio alert

Stay tuned!

Ralph James Savarese, parent of an autistic son and author of Reasonable People: A Memoir of Autism & Adoption will be interviewed on the nationally-syndicated National Public Radio program The Diane Rehm Show, on Monday, June 25.

I have not yet read Reasonable People, but I did link to an Op/Ed piece by Savarese in a previous post, and I have read great things about the book. Add to that the fact that Diane Rehm is one of the best interviewers on the planet, and it is sure to be a compelling hour.

To find out where and when the show airs in your area, click here. And if the show doesn't air in your area, you can listen to it live here from 11 - 12 Eastern Time.

Saturday, June 09, 2007

Passing on the funny

This post from Her (Hilariously) Bad Mother made me laugh so hard I spewed bits of chewed-up Granny Smith apple all over my laptop.

When that happens, it's a sign that you must pass it on.

Tell me lies, tell me sweet little lies

Like many children with autism, Bud's never been much of a liar. As I've written before, over the past year or so he has honed the ability to be evasive - to avoid speaking the truth while not overtly telling a falsehood. But I'd never seen him really tell a lie and weave a story in an attempt to wheedle his way out of something.

Let's face it - lying, as distasteful as it might be, is an important skill to acquire. Life is much more pleasant - much easier to navigate - when we can successfully crawl inside someone else's brain long enough to make a prediction with some degree of accuracy regarding what that person's response to a scenario might be. We need to be able to weigh that likely reaction against the relative merit of honesty in the situation. We need to be able to determine whether telling the truth in the scenario is important enough to trigger the reaction that is almost certain to follow.

In other words, we need to be able to figure out whether or not to tell someone their new haircut looks terrific even if it doesn't, and we need to be able to do it without preparation, in the moment, as it happens, with very little time for reflection. And for many of us, the development of this skill begins in childhood when we learn to spin a yarn to get ourselves out of hot water. But I had never seen Bud display anything close to this particular skill set.

Until today.

Today, I walked into Bud's room and I smelled something. I wasn't sure what it was, but I was sure that I shouldn't be smelling it in his room. I looked around quickly - nothing seemed out of place - so I began following my nose in pursuit of ground zero. It didn't take long to find the source of the odor - a very uncharacteristic swirling pattern on the wall, in a substance that appeared to have human origins. I was startled, as this is not at all typical of Bud of late, and I took a minute to try to figure out what to do - Should I call his attention to it? Is this an important topic for conversation? Or would it simply embarrass him? Would it establish this as an effective way to gain my attention? I decided to just clean it up without comment, and I headed to the bathroom for the 409 and some paper towels. Just as I was poised for the initial spray, Bud entered his room, looked at me, and asked "What are you doing?"

I looked at him and looked at the wall, and said "I was just going to clean this up."

"Yeah," he said.

"What do you think this is?" I asked.

He looked at it carefully, thought a moment, and said, "It's mud."

"Really?" I said, "What is mud doing on the wall?"

"It's covering the mirror," he explained. "And the walls, too."

"But how did it get there?" I asked.

He paused briefly, then said "The elephants sprayed it there."

"The elephants?" I asked.

"Yeah," he replied. "The elephants sprayed the mud on the wall."

"Well," I said, "Please tell the elephants that we shouldn't put anything on the walls. We need to wash in the sink. Okay?"

"Okay," he said cheerfully.

As I sprayed the 409 and began to clean the mess, I heard Bud turn to a toy elephant, a handy scapegoat on the shelf beside him, and launch into a lecture. "You silly elephant," he said, "You don't spray mud on the walls!"

My boy has learned the fine art of fabrication. I know it's a good and important thing. But like many developmental milestones, this one is double-edged: it seems that from this point forward, I may never really know what he thinks of my haircuts.

Sunday, June 03, 2007

Inactivism and the art of the one-handed mow

As you may know, I've been a bit absent from the blogosphere lately. Apparently, I've been even more absent than I realized, as I discovered when I read Joe's latest post over at Club 166, and read his opening sentence:

For followers of the blogs on the Autism Hub, one would have to have been asleep over the last several days to have missed it's mini identity crisis.

It seems I've been catching some Z's.

I followed the links from Joe's blog and more links from there and caught myself up on the conversation that has taken over the Hub, the crux of which seems to be this: it is time to clarify the mission and, perhaps, the membership of Autism Hub.

I'm all for it. To be honest, I've never really been sure if I was a good "fit" for the Hub. (This is not a veiled request for reassurance, so no comments that stroke my ego are necessary here.) When I became aware of the Hub in March, 2006, I sent two e-mails in rapid succession. The first was a request to join. The second was an apology and a request to rescind my previous request. After sending the first request, I'd spent more time reading the blogs affiliated with the Hub and noticed that most of them had an activist focus - and while I believe in the power and importance of autism activism, while I may tip-toe into it from time to time, it does not tend to be the focus of my blog.

A short time after sending my second e-mail, I got a reply from then-scary-to-me Kevin Leitch. I explained my dilemma to Kev - that it seemed to me that the Hub was designed for autism activism, and that I mostly posted cute stories about my delightful son. Kev said there was room at the Hub for cute stories and he welcomed me into the fold. For over a year now, I've been delighted to be in such wonderful company - but I have to admit that I've continued to wonder if I'm just a bit out of place.

So, this current Hub-identity conversation is, I think, a good (if difficult) one that will address important issues as the Hub continues to evolve: Should the Hub only include blogs that focus primarily on autism advocacy and activism? And, if so, should its primary emphasis be on bloggers who are themselves autistic? Good questions. Important questions. I'm glad that people are taking them on.

But, in contrast to my fellow Hub bloggers who are asking the hard questions and engaging in a powerful discourse, I will continue watching from the sidelines.

I thought a lot about the ongoing Hub debate yesterday while I was mowing the lawn. I thought a lot about my own inactivism - both my recent absence from the blogosphere and my tendency to blog more about Bud's sweetness than about the politics of autism. I thought about how I make decisions about where to put my energy - about why I am not more drawn to activism.

As I thought, I pushed the mower, its motor buzzing loudly, while Bud walked alongside me with his own Fisher Price mower in front of him, his shoulders hunched as he tried to muffle the noise from my machine. I turned toward Bud and saw his lips moving. I could tell he was asking me something, but I couldn't hear his words. I leaned down and put my ear next to his mouth, and he shouted his question to me: "Can I hold your hand?"

Bud was frightened by the sound of the lawn mower, but his desire to be part of the process was greater than his fear. Just the same, he needed some tangible, physical reassurance from me to know that he was safe. So I reached out my left hand and he grasped it tightly, and together we continued to mow the lawn. My right hand gripped the mower's handle and squeezed the power bar. I propelled the mower - uphill in the beating sun - with the power from my right arm and some heavy support from my abdomen, and we moved together, back and forth, uphill and down, cutting a little bit of grass and building a great deal of unspoken connection.

I thought about the parallel between autism advocacy and my unmown lawn. I need to think about both - I need to address both - for Bud's sake. He will always be an autistic person in a largely neurotypical world, and I need to do what I can in the world of activism to help create an environment that will both challenge him and support him, just as he will continue to be a child who wants to play in the yard, and who needs an environment free from the tall grasses that harbor deer ticks and other disease-carrying critters. He needs me to do my part with these things. In the big picture, over time, I need to make sure these things get my attention and my energy. I also need to make sure that I help him learn how to mow the lawn on his own, and how to become an effective self-advocate and, if he chooses, activist.

But in the moment, in the right-here-right-now, Bud needs me. He needs me to be his parent. He needs me to hold his hand. And so, for now, it is parenting and not activism that will continue to be my primary focus. Parenting will win out over blogging. Blogging about parenting will win out over blogging about the politics of autism.

That might make me a poor fit for the Autism Hub, depending on where the Hub goes from here. And I'm okay with that. I'll continue to support the Hub and I'll continue to read the bloggers who post there, whether or not I'm among them.

Right now, my lawn is one-quarter mowed. I couldn't sustain the physical exertion to do any more of it. If the rain holds off, Bud and I will do a little more mowing today - probably just a few square feet, possibly even blade by blade, but, almost certainly, hand in hand.