Wednesday, November 30, 2005

Experience sharing

It seems declarative communication is catching on!

Like most kids on the spectrum, Bud uses mostly imperative language - "I want this", "Can I have some that?", "What is that thing over there?" I typically have to rely on other people - his teacher, the special ed team, Nana - to fill me in on the specifics of his day. I knew that Bud was eager to return to school (and to a predictable schedule) following an unsettling holiday weekend, but I was a little worried that he'd have a hard time settling in again. To my surprise, Nana reported that drop-off on Monday was a huge success. She typically hands Bud off to his aide at the front door, and he and the aide walk together down the long hallway to his classroom. On Monday, however, Bud entered the building with gusto, said a quick goodbye to Nana, threw back his shoulders, and strutted past his aide and toward the classroom. His aide raised her eyebrows and Nana, then followed Bud at a distance. Little Mr. Independent!

On Tuesday evening, I was toweling Bud off after his bath and he seemed lost in thought. Then his eyes sparkled and he looked at me and said, "Mama! I walk to Kindergarten ALL BY MYSELF!"

I almost fell over. He was proud... and he wanted to share his pride with me!

"You DID?" I gushed. "Wow! What a big kid you are!"

"Yeah!" he said. "I walk to the classroom all by myself! Like this!" He threw his towel to the floor, lifted his chin, puffed up his chest, and then - all grinning teeth, pumping elbows and poking ribcage - he marched across the bathroom floor to steal a glance of his big-boy self in the full-length mirror.

I could really get used to this experience-sharing thing.

Monday, November 28, 2005

I do declare

I posted yesterday about my efforts to give Bud more processing time when I ask him questions. I neglected to mention, however, how hard I'm trying to ask him fewer questions to begin with.

I've been working on integrating RDI into Bud's life, and one of the goals in RDI is to shift the way we speak to children on the spectrum to use 80% declarative language and 20% imperative language. Imperative language is the language that children on the spectrum tend to use most (99% of the time as opposed to 67% of the time for children with other types of developmental delays, according to one study.) Imperative language is that which is used for instrumental purposes like making requests, asking questions, and stating demands. It is the language of a black-and-white world in which there is One Correct Response.

Declarative language, in contrast, does not have utilitarian functions; it's goal is experience-sharing. Declarative communication does not require a specific response; instead, it's intention is to promote interaction, and share thoughts, ideas, preferences, and emotions with another person. It is a form of communication that by it's very nature says "I am interested in you, and I hope that you are interested in me, too." And it does not come easily to children on the spectrum.

As we work with Bud and try to help him develop language, it is really declarative language that we're working toward. He knows how to ask for what he wants. He even knows how to say please and thank you. He will be able to "get by" in the world with that kind of language. But I want more than "getting by" for Bud; I want him to engage with and be curious about people, to develop deep friendships, to fall in love and have someone fall back. So right now, I have to help him build a solid foundation from which to make those leaps. I need to help him learn to ask "how are you?", yes; but more than that, I need to help him care how you are.

And so, I try to role model declarative language for Bud, and give him small jumping-off points for experience-sharing conversation. Instead of "Bud, it's time for bed," or "Are you tired, Bud?" I try "You look a little sleepy," or "I'm feeling tired." Instead of "What did you do in school?" I try "I love the picture you brought home in your backpack." Instead of "Bud, put on your shoes so we can go," I try "It's almost time to go; I wonder what we should do next." It sounds easy, but I find that 80% is a real challenge. Imperatives roll off the tongue; declaratives take thoughtful intentionality.

And that, I think, is the point.

Sunday, November 27, 2005

Silence is golden

Yet more insight gleaned from the SCERTS seminar. During his presentation, Barry Prizant made frequent references to Ros Blackburn, a woman from England who has autism and often gives presentations at autism conferences. Like Temple Grandin, Blackburn is able to talk about autism in a way that gives neurotypicals real insight into life on the spectrum. One particular reference stood out for me.

Prizant said that he once asked Blackburn to name the thing that other people did that was most frustrating to her. She answered that other people don't allow enough time for people with autism to answer questions. Typically, she said, just as she is forming the answer the other person starts talking again. And not only that - they're not just repeating themselves, they are saying things differently.

It struck an instant chord. I do it all the time. I hear other people do it all the time as well. We honestly think we're being helpful.

We ask, "Bud, what did you do in school today?"

Pause.

We think, is he listening?

We say, "Bud, look at me. Was school fun today?"

"Yeah."

We think, good, he's listening. We repeat, "What did you do?"

Pause.

We think, maybe he doesn't understand what I'm looking for.

We ask, "What was your favorite part of school today?"

Pause.

We think, he still doesn't get it; I'll be more clear.

We say, "Did you play with toys at school?"

"Yeah."

We think, here we go! We say, "What did you play with?"

Pause.

And on and on it goes until we give up or have gotten enough yes/no responses to satisfy our need for the pretense of conversation.

According to Prizant, Ros Blackburn compares her experience of this sort of "conversation" to assembling a jigsaw puzzle. Someone asks a question, and she begins to piece it together - what are they asking? what is the expected response? what do I think about this? how do I put that into words? The piecing takes her full concentration, so she is silent while she thinks. She is silent, in fact, for a long time; long enough that the other person decides s/he needs to be "helpful". Unfortunately, by rephrasing the question, it feels to Blackburn as if the person steps in, grabs the puzzle she has almost completed, and hurls the pieces into the air. Now she has to start over, this time trying to assemble the puzzle with a heightened level of frustration. (And we wonder why people with autism get dysregulated?)

So I've been trying since the seminar to slow down my conversations with Bud and to stop "prompting" his answers. The conversations go something like this:

"Bud, what was your favorite thing in school today?"

Pause.

Pause.

Pause.

Pause.

Pause.

"I play Magic Letter Factory on the computer."

"Oh, that sounds fun. Did any other kids play with you?"

Pause.

Pause.

Pause.

Pause.

Pause.

"Sadie play me."

Pause.

Pause.

Pause.

Pause.

Pause.

"And Margo, too."

As the Dalai Lama says, "Remember that silence is sometimes the best answer. "

Thursday, November 24, 2005

Extreme dysregulation

It seems I attended the SCERTS seminar at just the right time.

As most parents of children on the spectrum know, the holiday season can be a challenging time for kids with ASD. Bud is no exception. Bud has been slowly winding up since Halloween, and hit full-tilt earlier this week. It actually started as birthday obsession. Bud's birthday is in September so it will be a long time before he celebrates another one, but he recently got a new Caillou's Birthday video and has been perseverating on having a birthday party. (Specifically, he'd like a Sesame Street birthday with an elephant cake.) This week was Nana's birthday, however, so there was a celebration, and some out-of-town family who hadn't seen Bud since his birthday came bearing gifts, so my insistence that "it will be a long time before your birthday comes" stood in contrast to Bud's real-life experience and only confused the issue for him.

And that's not all. It was a two-day week at school, which included a Charlie Brown Thanksgiving party. He spent a whole day with me at my office on Wednesday. We have out-of-town guests staying at our house. Daddy and I are home from work. We are eating meals at different times. We had our first significant snowfall. The tv has been playing football games instead of PBS kids. People are drinking and conversations are louder than usual. We cooked a turkey on the outside grill. Bud's sleeping has been thrown off. I've been cooking and doing dishes and talking to other adults instead of focusing my time and attention on him. It has been an unpredictable, upside-down sort of week for Bud and despite my efforts to talk him through each turn of events, the poor kid is simply on overload.

So today we had A Very Autistic Thanksgiving at our house. And this is why I am very, very glad that I've just attended Barry Prizant's seminar. As Bud went through his shrieking, throwing, banging, avoiding, refusing, protesting, ignoring, obsessing Thanksgiving Day, I was able to see his behavior for what it was: Bud was not being aggressive or difficult. Because of the wacky nature of the week, Bud was experiencing extreme dysregulation.

As Prizant and the SCERTS model explain, when a child is regulated he is in an optimal state of arousal and is "available" for learning and engaging. When a child is in extreme dysregulation (either because he has very low or very high arousal), he is no longer available for learning and engaging. Trying to engage in a "teachable moment" with a child in extreme dysregulation is futile. The primary goal, instead, is to help the child achieve regulation.

I kept the SCERTS philosophy in mind all day, trying in small ways to help him adjust and regulate as he encountered obstacles. As we approached evening, however, Bud passed the Point of No Return and all signs started flashing "meltdown ahead." I shuffled him quickly upstairs to the bathroom, away from the crowd and into his bedtime routine even though we were about an hour early. Daddy joined us to try to provide extra support and comfort, but Bud was having none of it.

"NO! I don't want to go to bed! I don't want to brush my teeth! I want to play my toys!" he wailed.

Daddy approached him, speaking in a low soothing voice, and leaned in for a kiss. Bud flailed wildly, belted Daddy in the nose, and sent his glasses flying across the room. Daddy's face registered shock. Bud's didn't show even a flash of acknowledgement that anything had happened. Barry Prizant's words flooded into my mind.

"Most "aggressive behavior" from children with ASD is not really aggression; it's dysregulation."

"But how do you know the difference?" someone in the audience asked. "I mean, obviously sometimes it's really aggression."

"Again, you have to look at the intention that's driving the behavior. Ask yourself why the child is doing this. If he's doing it to hurt himself or someone else, it's aggression. If he's not, it's dysregulation."

In a split second, I caught Daddy's glasses as they flew through the air and somehow (was it silently?) we agreed not to pursue a discussion with Bud about the incident. Daddy left quietly, and I continued helping Bud through his nighttime routine, not rushing it, making it as predictable and normal as possible. We got to his bedroom, turned down the lights, started reading a book, and before I finished page 3 Bud was sound asleep.

One day down; 31 shopping days to practice the art of regulation ahead.

Wednesday, November 23, 2005

Happy Thanksgiving

I spent yesterday writing a long post about Bud's amazing development, and yet when I see it in action it still takes me by surprise.

Today was a school holiday, so I brought Bud to the office with me. He loves coming to my office, but usually only accompanies me after hours when no one else is around. Today he was surprised to find a small number of coworkers when we arrived. He was characteristically shy at first, avoiding their eyes and hiding behind my back as they said hello to him, but as the day wore on he grew increasingly more comfortable.

A safety officer whom Bud had never met stopped by on rounds. "Hey there, Big Guy!" he boomed.

"Hi," said Bud.

"How ya doin'?"

"I'm good. How are you?"

Wow.

Later in the day, another coworker whom Bud doesn't know well stopped by to say she was leaving for the day. Bud was at the computer in the room next door to me, and I heard her say as she walked down the hallway, "Goodbye, Bud! Have a nice holiday tomorrow!"

There were a few silent beats, then I heard Bud's voice ring out down the hallway after her, "Bye! Happy Thanksgiving!"

Happy Thanksgiving, indeed.

Tuesday, November 22, 2005

Resounding echoes

In a recent post, I discussed my (thankfully short-lived) concern that Bud's classroom was adopting a square peg/round hole, just do your best to "pass," one-size-fits-all sort of philosophy. I based this supposition on a single element: a piece of representational artwork that Bud brought home and that I knew could not possibly be his because Bud does not do representational art.

Since the moment I clicked on the "publish post" button, Bud has produced nothing but... you guessed it, representational art. And he's not just producing it; he has developed a passion for it. On a nightly basis, he pulls out his markers and a stack of paper and gets working.

But I'm noticing an interesting phenomenon. Though he's producing representational art, he is not creating it from his imagination. So far, his artwork has been limited to what he has seen in videos: he draws the clues he's seen Joe and Steve draw on Blues Clues; he draws the scenes he's seen Oobi draw on Noggin. In the same way that so much of his speech is derived from videos, he is scripting his drawings. I've begun thinking of it as visual echolalia.

Framing Bud's drawing as echolalia also made me look at another phenomenon in a different way. In his blog, Patrick Fitzgerald searches for an explanation for his son Dan's recent habit of opening books in synchrony with the opening of the book at the start of his Disney movies. Patrick describes Dan's behavior this way: "He has gone around the house, gathering all the large books he can find. He then lays them out carefully around the room. As the movie starts and the on-screen book opens, he goes along his line of real books, opening them. At the end of the movie, as the on-screen book closes, he reverses the process." I recognized the behavior immediately, because it's similar to what Bud does. He doesn't watch Disney movies, but he does watch Clifford the Big Red Dog, and every episode has a "Speckle story" that Emily Elizabeth reads to Clifford. At the end of the Speckle story, the pages flutter and the book closes. Bud delights in recreating this grand finale - again and again and again. It seems to be some sort of behavioral echolalia.

At the SCERTS seminar I attended, Barry Prizant discussed the phenomenon of echolalia. Too often, he said, people view echolalia as a problem because it is such unconventional speech and, as a result, they respond to it with statements like "Now stop all that silly talk." Instead, we should look beyond the behavior itself and try to identify the function that the echolalia is playing for the child. The most important question when dealing with echolalia or most other "autistic" behaviors - the question that will help us remediate the problem instead of address the symptom - is "why?".

When I look at the evolution of Bud's echolalic speech, I see phenomenal developmental progress. Bud's echolalia seemed to start as strings of words that didn't have any particular meaning to him, but that he used as a means of self-regulation. As Bud developed, his echolalia became more complex and he began to use it in meaningful ways. If we were playing ball, Bud would pull out a line from a script that had something to do with playing ball and seemed somewhat relevant to the context. Later, he advanced to the point where he could use mitigated echolalia, substituting specific references from the script with salient details from the real-life situations to approximate conversational meaning. (He still does this masterfully.) Only then was he able to step out and take risks with creative language. Prizant frames this pattern of development,which is typical of many children with ASD, as movement from a gestalt mode of language acquisition (in which phrases and multiword utterances are the basic units of language) to an analytic mode (in which single words are the basic units of language). This sort of development, says Prizant, is a very positive prognostic indicator for the child's continued language development.

So what role is Bud's echolalic language playing now? I believe that Bud has used echolalia to create opportunities for what RDI's Steve Gutstein calls "productive uncertainty," and what I've called chaos and creation, to test the waters of communication to see if he's able to swim. He started using scripts because that was the form of language in which he had the most confidence. Bolstered by his success, he was able to take a bigger risk and start substituting words. That risk had a huge pay-off and allowed him to have real back-and-forth communication for the first time. Once he became comfortable and "safe" with that level of communication, he was finally ready to swim without his floaties and start to construct his own creative language.

Similarly, when I look at most of Bud's "echolalic" behavior - recreating scenes from favorite videos - I see that it has been an important step in the development of his capacity for pretend play. I think that in many ways it started as a way to connect. Because his real-life peers are unpredictable, socializing with them has been a struggle for Bud. But the characters in his movies? They are his perfect playmates - predictable, consistent, and always at the ready. Recreating scenes from their lives gives Bud an opportunity to be a part of their lives. And, as with his language development, it has given Bud the chance to take the risks and achieve the success that makes the idea of risk less scary and more appealing.

My hunch is that, bolstered by his achievement in language and play, Bud is using a similar process with his artwork. Early on, Bud was loathe to pick up a crayon, marker, or paintbrush. When his first tentative stray marks of paper earned praise, he got bolder and more intentional with his strokes and blobs. When those creations met with rave reviews he took the risk toward representational art, but is starting with pictures that he knows have a "right answer." My hope, and my hunch, is that before long he will move into creating pictures from his mind.

As Barry Prizant said, our attribution of a behavior - our perspective on the "why?" - frames our response to it. It's fascinating that when considered from a different angle, echolalia transforms itself from an annoying, frustrating example of disability, into a valuable developmental process. Prizant uses a quote from Wayne Dyer that I think sums it up nicely:

"When you change the way you look at things, the things you look at change."

And change and change and change.

Monday, November 21, 2005

Communication and integration

One of the great ironies in my life is that I teach a college course in Interpersonal Communication. To the students enrolled in the class and the college that employs me, I am (on some level) considered an expert on the subject. And yet, my son - the student who gets the greatest number of hours under my tutelage - finds that this is the very subject that evades him most. There is some sort of cosmic somersault at work here, I think.

I have found, though, that my life with Bud has greatly informed my teaching, and that the material I teach has provided a valuable lens through which to view Bud's strengths and challenges. I recently added a new perspective to the mix when I attended a seminar by Barry Prizant on the SCERTS model, which is "a comprehensive, multidisciplinary framework designed to enhance the communication and socio-emotional abilities of young children with Autism Spectrum Disorders."

Since the summer, we have been integrating RDI into our activities with Bud at home, and I really believe in the program. The downside of RDI, however, is that it is complicated. I've given the team who works with Bud some basics of the philosophy - slow down, use fewer words, wait 45 seconds for a response, use declarative language - and they've been great about implementing them, but the bulk of the work we do with RDI will continue to be at home with the guidance of an outside consultant.

SCERTS, on the other hand, is designed to be a curriculum-based assessment for use by professionals who work with children in the classroom setting. It is in line philosophically with RDI, but is packaged in a more user-friendly way with clear assessment tools that yield specific goals and objectives appropriate for each individual child. It is a program that I think Bud's team will find helpful, and even inspiring.

The SCERTS program addresses three domains for assessment and intervention: Social Communication, Emotional Regulation, and Transactional Support. Social Communication and Emotional Regulation are, of course, two main areas of challenge for children on the spectrum. In the area of Social Communication, SCERTS sets as the overriding goal "to help a child become an increasingly competent, confident, and active participant in social activities and events," by enhancing the child's capacity for joint attention and reciprocity, expression of emotion, and understanding of others' emotions. It seeks to help children become more conventional communicators and to enhance their abilities for pretend play and symbolic behavior. It seeks to help them become full partners in the intricate dance of communication.

Through a focus on Emotional Regulation, SCERTS helps children achieve and maintain an optimal level of emotional arousal to maximize their "availability" for learning and engagement. The focus in ER is trifold: self-regulation (using strategies to regulate independently), mutual regulation (achieving regulation through social transaction), and recovery from dysregulation (being able to employ these strategies in times of extreme dysregulation, when the child is no longer available for the learning process.)

Transactional Support is an area not addressed in RDI, but is extremely important in the educational setting. TS focuses on the collaborative efforts of everyone (teachers, parents, caregivers, siblings, peers) who work with a child so that the same goals and strategies are infused across a child's daily activities.

Fundamentally, SCERTS is about integration: integrating work across disciplines, so that SLPs, OTs, PTs, classroom teachers, special educators, school psychologists and parents are all working from the same guide book; integrating approaches and philosophies that reach core deficits, instead of focusing on treating symptoms; integrating strategies for communication development with strategies for emotional and sensory regulation.

And so I start the process of integrating SCERTS into our own little grassroots approach to ASD. It's not too difficult, really. SCERTS, RDI, my class in Interpersonal Communication: they all have the same goals, when you break them down. To use an analogy from RDI's Steve Gutstein, we are all trying to help our students become "broadband communicators", to trade in their 2800 baud modems for high speed cable, to download and interpret volumes of information in an instant and respond appropriately. SCERTS encourages students to simultaneously share attention, share affect, share intention, and share symbolic systems. RDI promotes dynamic intelligence through the development of emotional referencing, social coordination, declarative language, flexible thinking, relational information processing, hindsight, and foresight. And my class in Interpersonal Communication teaches students to view themselves and others as sender-receivers, to be intentional with and attuned to verbal, nonverbal, and paraverbal messages, and to remain aware of their filters of perception and attribution.

Different words; strikingly similar goals.

So I take it back, what I said about teaching Interpersonal Communication and having a child with ASD. I was wrong. It's not a cosmic somersault; it's a cosmic cartwheel. It's not one of the great ironies in my life; it's one of the very good fortunes.

Saturday, November 12, 2005

The art of education

One of Bud's favorite activity centers at Kindergarten has two easels, bright paint, thick paintbrushes, and reams of blank canvases of construction paper. Several times a week he brings home a masterpiece, rolled up in an rubber band, sometimes so fresh the paint is still sticky. One such masterpiece, a swirling collage of blobs and streaks of primary colors, is framed and hanging on the wall of our family room. Bud is proud of his artwork, and we are appreciative patrons of his art.

A couple of weeks ago he bounded out of school with a rolled-up paper peeking out of his backpack, but when I got it home and unrolled it I was speechless. There was a strip of blue paint across the top and penciled in next to it, in adult print, was the word "sky." There was a green strip of paint at the bottom ("grass"), a brown strip up the center with a green blob on top ("tree"), red dots on the green ("apples"), a yellow blob near the blue strip ("sun"), and an orange blob near the green ("cat").

It looked exactly like the work of a typical Kindergartener. It looked, in other words, nothing like Bud. My initial reaction was that he must have mistakenly taken another child's painting. But I flipped it over and, sure enough, there were Bud's initials on the back.

I was completely shaken. What is going on in that classroom? What are they trying to do? What are they trying to make him be?

What are they doing to him?

I began to wonder if I had completely misread the cues I'd gotten from the educators who work with Bud. I thought we were collaborating. I thought we were on the same page. I thought we shared the same philosophy. But this - this - this PAINTING changed everything.

I started rehearsing the conversation in my head. I pictured myself approaching his teacher, a wonderful, insightful, caring, tireless woman whom Bud adores, and who makes Bud feel like the center of the world. And I saw myself speaking, wondering if I'd be risking everything, wondering if my words would cast aside any progress we'd made, or - worse - if they'd reveal that there had never been any progress and that our mutual understanding was mere illusion.

I knew what I had to say: "That picture that Bud brought home: it was jarring to me. That's not how he paints. That's not how he expresses himself. That's not who he is." I wanted to tell her that I was concerned about the message that picture sent to me about the educational philosophy being used with Bud in the classroom: that it indicated a lack of respect for him, for where he is, for what he can do. It told me that there is a box -one single box labeled "correct" -and that the goal in this classroom was to make Bud pretend to fit into it - not, as I thought, to help him explore what he already has inside him and help him bring all the best parts of himself to the surface. It told me that the creative, colorful, dynamic artwork he brought home was not good enough. Worse - it told me that the message sent to him was that his masterpieces were not good enough. It told me that the product - and not the process - was at the center of the educational experience. It told me that they didn't get Bud, and that it seemed they weren't trying to get him.

It was a daunting message to think about delivering to a woman I like very much.

But the next day I steeled my resolve, took a deep breath, and entered the classroom. I lingered until the other parents were gone, then I launched into the speech I'd rehearsed.

"That picture that Bud brought home..." I started.

"I know," she said.

"It was jarring to me."

"It was jarring to me, too. Someone else was working with him at the time. But we've talked about it - you know, this is a learning process for all of us - and it won't happen again. It was very well intentioned, but..."

"But it's not Bud," I finished.

"No, it's not Bud," she sighed. She went on, and unrehearsed and impromptu, gave my practiced speech back to me.

We are in synch. We're on the same page. We share the same philosophy.

"Now," she said. "I've just got to figure out a way to be his teacher for the next twelve years."

Tuesday, November 08, 2005

Only a memory

For the past couple of days, Kristina's post about "splinter skills" on My Son Has Autism has been simmering in the back of my brain. Last night, when I posted about Paul Collins's new book, The Trouble With Tom, I quoted a passage from Collins about memory and shortly after that my mind began to boil over.

Collins wrote,
Every moment gets thrown out like so much garbage - which, in a sense, is what the past is. Memory is a toxin, and its overretention - the constant replaying of the past - is the hallmark of stress disorders and clinical depression. The elimination of memory is a bodily function, like the elimination of urine. Stop urinating and you have renal failure: stop forgetting and you go mad.
So, what if I've been looking at it backwards? What if Bud's "splinter skills" - remembering volumes of video dialogue with appropriate inflection and dialect, remembering the lyrics to every song he's ever heard, remembering the track number of every song on every CD, entering a store he was in once before several years ago and knowing instantly what he played with there - what if all these things are not because of an extraordinary ability or even an obsessive compulsion to remember?

What if they are because of a diminished capacity to forget?

The more I think about it, the more sense it makes. Perhaps Bud is overretaining some one-off interaction with a dog that happened so quickly I didn't even see it, but has rendered him pathologically fearful of dogs ever since. Perhaps it's the overretention of information that produces scripting echolalia; if he is unable to forget these lines, maybe obsessively reciting them is the only means he has of purging, of letting off some steam. Perhaps it's the overretention of memory that prevents him from cycling down with the rest of us at sunset, that keeps him sleepless, that wakes him early.

Doesn't it make sense that he'd be reluctant to interact with new people if he ran the risk of having to carry them all with him forever? Wouldn't it make him want to stick to the videos, the experiences, the foods, the everything he already knows he likes if he knew he wouldn't be able to sort out and discard the videos, experiences, foods, and everything that he didn't like? Wouldn't it make him want to put his hands over his ears in new situations to try to keep some of it from getting in?

Maybe this is where the computer metaphor for the autistic brain makes sense. Perhaps Bud's brain has enormous capacity for memory, but is unable to selectively delete the contents of his hard drive that he no longer needs. Maybe he needs help to defrag.

I think about the imperative messages I deliver to him all day in an effort to help him to focus, tune in, and attend to the world around him:

"Listen, Bud."

"Pay attention."

"Look at this."

Perhaps I'm overlooking the most important imperative of all:

"Forget about it."

Monday, November 07, 2005

The Trouble With Tom

I think that Paul Collins could write a telephone directory and make it compelling. He is that good a writer. The first time I read one of his books, he was writing about a subject dear to my heart, but since then I've read and loved his other books, which were about things I'd normally find mildly interesting and things I would not have pursued otherwise.

His latest release, The Trouble With Tom: The Strange Afterlife and Times of Thomas Paine falls into that third category; it's not the sort of book I'd typically seek out. It actually reads a bit like a prequel to Sarah Vowell's Assassination Vacation, and leaves me hoping that someday Collins and Vowell will take a trip together then co-author a book about the journey.

The Trouble With Tom is not exactly a biography, though it certainly has biographical elements. It's more a historical exploration, with a heavy dose of mystery whodunit, a bit of nineteenth century medical journal, and a great deal of comedic travelogue. It's... well, it's hard to pin down.

The book begins with the revolutionary Thomas Paine, and provides a brief account of his life. It is at his death, however, that the story gets rolling. Collins writes in a flash-back-flash-forward style as he retraces the steps that Paine's body (well, some of the pieces of his body, at any rate) took (well, may have taken, at any rate) from the moment of his death in 1809 until... well, it's hard to say when. Through Collins's narrative we travel to 1809 and the Herring Street boarding house where Paine breathed his last; we also join Collins on his recent pilgrimage to that hallowed ground, now a Grove Street piano bar filled with the sounds of Rogers and Hammerstein in bass-barritone. And it only gets stranger from there.

Along the way, we meet a variety of supporting characters who participated in the complicated catch-and-release of Paine's remains and others who searched for them as they remained perpetually out-of-reach. And we get a fascinating history lesson to boot.

My favorite moments in the book, though, are those in which Collins shares his own insights, perspectives and notions. He writes:

We forget all the time. We forget nearly every single impression that passes through our minds. What we ate for lunch: who our roommate was ten years ago: what we paid for a soda in 1982: what we just came from the living room to the kitchen for. It is constant and vital, and we only notice it if everyday useful things go missing. Every moment gets thrown out like so much garbage - which, in a sense, is what the past is. Memory is a toxin, and its overretention - the constant replaying of the past - is the hallmark of stress disorders and clinical depression. The elimination of memory is a bodily function, like the elimination of urine. Stop urinating and you have renal failure: stop forgetting and you go mad. And so it is that the details of nearly every single day that we have lived, nearly every single moment of each day, nearly every person that we have met and spoken to, the exact wording of the paragraph that you have just read... Gone.

The Trouble With Tom is overflowing with these thoughtful asides. It revisits long-since-discarded ideologies and theories. It depicts a history in which disparate characters and uncommon worlds collide. It paints the past as a series of mishaps and missteps, all stumbling sideways, askance and askew, but always in the general direction of the future. It is a remarkable book.

If only I could remember what it said.

Saturday, November 05, 2005

I think I've (finally) got it

Many months ago, I posted about a mystery that had me stumped, in which Bud had started calling the remote control to the portable DVD player a "miper." I knew there had to be a logical reason, but I couldn't for the life of me figure out what it was.

When Bud adopted the "miper" title, his obsession d'jour was using it to change the Teletubbies narrator from speaking with an American accent to speaking with a British accent, then back again.

Tonight, after days of listening to him beg, I relented and let him watch home videos of himself. I am usually loathe to do this, because 1) the videos remind him of old scripts he has stopped perseverating on, and reintroduces them into his repertoire for a while, and 2) the videos themselves start to become scripts for him to perseverate on. However, I did let him watch himself in action for about 30 minutes. In one of the segments, he was in the bathtub singing loudly into my round hairbrush.

An hour later, the videos were stashed away and it was bathtime and - true to form - Bud wanted my hairbrush so that he could recreate the scene he'd just watched.

"Mama, can I have my miperphone?"

"Your what?"

"My miperphone."

The fog lifted. A miperphone is a device that you talk into that changes the sound of your voice. So what would you call a device that you don't talk into that changes the sound - the accent - of a voice?

A miper, perhaps?

Not even wrong.

Friday, November 04, 2005

Reading my mind

There are a few things I've read recently that have been on my mind.

This post from Sal at Octoberbabies is the single best piece of writing I've seen to help neurotypicals understand autism. I sent the link to Bud's teacher, and plan to distribute it widely. It should be printed on the front page of the New York Times.

And speaking of the New York Times, this article by Paul Collins, which deals with the difficult decision of giving medication to his son Morgan, appeared there last weekend. Those of us who have struggled with similar decisions will recognize ourselves in the paragraphs. My real hope, though, is that the article will reach a much wider audience and will open the minds of those who have never been there but are nonetheless quick to make judgments about the rest of us.

And though I try desperately not to be conspiracy-minded, I simply cannot stop thinking about articles like this and this.

Wednesday, November 02, 2005

Sick or treat

After weeks of preparation and discussion about making the bold move to being a pirate after two years as a firefighter, Bud had to sit out the Halloween festivities this years. Plans were progressing smoothly until Sunday afternoon when we were out shopping and Bud recreated a scene from The Exorcist in a public restroom. All over the restroom. If you know what I mean.

So this year there was no pirate costume, no trick-or-treating-and-trying-to-hold-the-candy-bag-while-keeping-hands-on-ears, no Kindergarten classroom party or school costume parade, no nothing. I was disappointed on his behalf, but Bud was completely unphased by the change in plans. He happily collected his party booty a day late in school. He declined the opportunity to wear his costume to a Day of the Dead celebration on November 1 (though after viewing with fascination the elaborate altars with miniature sarcophagi and skulls made of sugar, he announced "Mama, I like this circus!")

And now the local retailers are moving quickly, sweeping the shelves clear of cauldrons and candy, and restocking them with twinkling lights and candy canes and wrapping paper. Bud has wasted no time in making the transition, either. He's announced that he wants drums for Christmas. Big drums with cymbals. I'm beginning to understand why he was so quick to write off Halloween. Enough with the preliminaries; let's get to the good stuff.