Saturday, March 31, 2007

My friend Bud

In this post on NT's are Weird, Joel invites people to share what they like about the autistic people in their lives. Joel reports that elsewhere on the Internet, "parents are all talking about how you know you have an autistic if they do various disgusting or horrible things," so he asks us to identify not what is difficult and not why we love them "in spite of the autism," but why we genuinely like the autistic people in our lives.

Let me tell you about Bud.

I love Bud. I love him in that primal to-the-gut way that momma bears love their cubs. My love for him is the essence of who I am. But that's not why I like him. If Bud weren't my child, I would still want him to be my friend.

Here's why:

Bud makes me laugh. He does it on purpose, in that way that good friends do - he knows what will make me laugh and he seizes opportunities to do it. And he laughs at my jokes, too.

Bud is genuine. He never leads with pretense. He puts his cards on the table every day, he makes himself vulnerable, and he trusts that his vulnerability will be safe with me.

Bud is forgiving. He gets angry at me, but after some cooling down, he is always willing to re-engage, to work it out, and to make it better.

Bud challenges my thinking and helps me to see the world in new and different ways.

Bud lets me be who I am, without imposing a lot of expectations about how I should act, what I should say, or who I should be in this world. Who I am already is just fine with him - and, because of that, Bud makes me feel good about myself.

Bud's enthusiasm for life is infectious. He experiences joy with his whole being - inside and out - and his joy radiates from him.

I could go on all day, but I won't - I've got even bigger things planned. You see, it's Saturday, which means that it's "Mom and Bud Day." There are adventures awaiting me - adventures with Bud, the boy I'm proud to have as a son and lucky to have as a friend.

Wednesday, March 28, 2007

Brainy days and grey matters

Yesterday was Brain Day on the blogs for me, as I read this post from Andrea at A Garden of Nna Mmoy followed by this post from Kristina at AutismVox, which both dealt with neurology and brain function. If you're a regular reader here, you may already know that Kristina is mom to almost-ten-year-old Charlie, who is autistic. Andrea is not an autism blogger, but - for me - her post had as much to do with autism as Kristina's.

I don't think I can summarize either Kristina's writing or Andrea's and do them justice, so please hop on over and read them.

Go ahead. I'll wait.

Pause.

Pause.

Pause.

Pause.

You're back? You read them?

See what I mean?

When read back-to-back, the two posts raise all kinds of questions for me about the nature of "mindlessness" and the nature of "mindfulness." Are they the same thing viewed through different filters? Or are they different things entirely? And what are their relative values? And by whose standards are those values determined?

I left a fairly lengthy comment on Andrea's post, but as she is not an autism blogger she said she felt ill-equipped to respond to it. I'd love to hear what anyone else thinks about any of these issues.

My comment, in case you didn't scroll down that far when you were reading:

This is a fascinating post for me on a number of levels, but primarily because my son has autism and language is a challenge for him. I wonder about his "internal monologue" - is it as constant as mine? Is it language-driven, as mine is, or is it altogether different? Is his internal monologue more experience-based, more driven by emotion, color, sound? (It seems to me that he is much more attuned to those things and experiences them more acutely than me, at any rate.)

So, then, I wonder - to what extent is Bud experiencing - really, genuinely EXPERIENCING - more than I am, with all my words spilling over and diluting the experience itself?

And then... what does that say about the way we look at and define "disability"?

You wrote: "I have, once or twice, used the opportunity of a long meeting in which I had nothing to contribute or a presentation to enter a mini trance, and then had a question directed at me--and the difficulty of understanding, first of all, that the sounds had meanings, and I was expected to do something with them; and then determining what those meanings were, and what meanings I should be directing back, and how; and the sensation of those words coming from a long way away, as if I were unconnected to them, and the sounds coming out of my mouth were unconnected to me, was odd, though not unpleasant ... Even the feeling of speaking is different, as if one's mouth and tongue and throat are thick. Speaking is effort."

And I wonder: Is this what my son experiences every day?

Saturday, March 24, 2007

A big day

I've mentioned several times before that I often try to get a sense of Bud's reactions to a day's events by asking "Was it a hard day or an easy day?" In the past, I have always gotten a quick, straight answer: it has always been either a hard day or an easy day.

Today, Bud's answer came more slowly and more thoughtfully. "It was," he said, "a big day."

I waited a little while and asked him again, but the answer was the same: "It was a big day."

As I reflect on the day we've had, I can see that he's right. This was not a black-and-white, good-or-bad sort of day. It was somewhere in between - perhaps more grey than gray.

Bud lost another tooth yesterday - his fifth, and one of the top front ones. The tooth fairy left him two dollars and he wanted to head out to spend them right away. He knew exactly what he wanted - a new Teletubbies DVD he'd seen online. That was all easy.

We couldn't go shopping first thing today. That was hard. The reason was that he had a ski lesson - which would have been totally easy, if it wasn't standing between him and the Teletubbies. We headed to the mountain on a beautiful sunny day (easy), for what he knew would be his final ski lesson of the season (hard).

He had a new instructor who was less guarded and protective than the instructors he's had for his last couple of lessons. They spent the whole lesson on the bigger hill instead of starting off on the smaller one (easyhard - excitingscary), and Bud had more freedom (easyhard), he took more risks (easyhard), he was more independent (easyhard), he moved down the hill faster (easyeasyeasy), but fell more (hard). His instructor urged him beyond his comfort zone and he was more successful than he knew he could be (easy), but the instructor kept pushing when Bud had decided that he was done for the day (hard). My husband and I also encouraged "one more time" after he'd taken a break, which probably felt like we'd joined the opposing team (hard). Bud stood his ground, and we packed it in with no more runs (easy). There was big cookie waiting in the Lodge (easy) and we got to ride the shuttle bus back to the car (easy), and then we were off to spend Bud's tooth fairy money on the new Teletubbies DVD (very easy).

Toys R Us didn't have the DVD (hard).

I suggested that we look at Target (hard - because Bud knows that I tend to need to look at just one more thing every time I enter Target and Bud is not a fan of shopping), but he refused. Then he asked if I would go to Target but not do any other shopping. I agreed (easy) and we were off. But Target didn't have the DVD either (hard).

Neither did Borders (hard). But after long deliberations (hard), Bud decided to buy a Boohbah DVD instead (easy- just not as easy). Bud's dad had promised that we could have a pajama party and watch the new DVD before bed (very easy), but that meant he wouldn't be able to watch it as soon as he got home (hard).

Luckily, when we got home we discovered that the mail had arrived and in it was the Teletubbies book we'd ordered through a seller of used books on March 2, and which had apparently been shipped via pony express. It had been a very long wait (exceptionally hard), but the wait made the book's arrival feel like a holiday of the grandest nature (exceptionally easy).

Bud spent the rest of the afternoon with his book (easy), and after dinner we all gathered for our pajama party and the inaugural viewing of the new Boohbah DVD (easy). We watched all three episodes on the DVD (easy), but drew the line at checking out all the "special features," as it was already well past bedtime (hard).

As we got ready for bed, we talked about what we'd do tomorrow. I suggested that we might go to church (hard). Bud suggested that we should play outside, and got a non-committal answer from me (easy? hard?)

Then Bud and I started talking about his day. I asked him lots of open ended questions about the things that were hard and the things that were easy, and he struggled to find the words to explain to me what was weighing on his mind. And what was on his mind was this: today was hard because he was thinking about yesterday. And yesterday, I yelled at him.

I have almost no recollection of this event.

According to Bud, I yelled at him because he was screaming. Then I vroomed him. Then I "terrificked" him.

I asked him what it sounds like when I vroom him, and he made an exasperated growly sort of sound in his throat (which, frankly, sounded more like me than I'd care to admit). I assume my "terrific" was some sarcastic response I made to him - this boy who doesn't really understand sarcasm.

I felt about two inches tall.

"Wow. That was hard, Bud," I said. "It was hard because..."

"It was hard because you hurt my feelings. You're sorry you hurt my feelings."

"I am sorry I hurt your feelings, Bud. I'm very sorry I hurt your feelings."

"That's okay."

"Well... thank you."

"You're welcome."

I finished the bedtime routine, then slunk out of his room to try to mop myself up. I can't believe I vroomed him and terrificked him and hurt his feelings and barely remember the incident that he's been carrying with him all day. That's really hard.

On the other hand, he told me what was bothering him. He explained his emotions. He explained the cause-and-effect of how my actions affected his emotions. He talked it all through until he got it off his chest and felt better. That had to be a hard conversation for him to have. But I'll bet that having it has made it a lot easier for him to get to sleep tonight.

And what's more - Bud has fully grasped the complexity of his day. He didn't seize one particular moment and let it define his day: his day was not the yelling, or the skiing, or the movie, or the book. His day was not hard or easy; it was just big.

A little over a year ago, I wrote this post, in which I discussed my frustration with the strategies outlined by Simon Baron-Cohen and his colleagues for helping children with autism to "mind read" as they learn about human emotion. My concern was that their approach treated emotion as black-or-white, without any consideration for the extraordinary percentage of emotional responses that are driven by grey. At that time, I wrote:

If I want Bud to be successful in the world, I need to help him understand and make sense of the flexible, evolutionary, constantly changing world of human emotion. I am doing him a disservice if I set low expectations and define success as a rigid understanding of a series of "if this, then that" scenarios.

And here we are, thirteen months later, with Bud reminding me - teaching me - that some days cannot be summed up by either "hard" or "easy" - that sometimes you spend your days skiing through the slopes of emotion and you slalom between the hard and the easy; and even though you know just exactly what you want, you find that you can't always get it right away - but, the alternatives are not so bad, and sometimes there are even exciting surprises in store for you; and mostly, at the end of the day, you remember that it's okay to get angry with the people you love and that even though they sometimes hurt your feelings, you know that you still love them and they still love you.

Bud was absolutely right: It was a big day.

Wednesday, March 21, 2007

The insanity is in the details

I've mentioned my word thing before.

I've mentioned it more than once.

I'm about to mention it again. Well, a variation of it, at any rate.

For the past forty-eight hours, ever since I started writing my last post, I've been thinking - okay, I've been perseverating. It's gone something like this:

Gray.

Grey.

Gray?

Gray.

Gray.

Grey.

Grey?

It's making me crazy.

Grey - or gray - was a key word in my last post. I had to choose one spelling and stick with it. I started with "grey". Then I made reference to Carol Gray, so I went back and changed all the "grey" to "gray" - you know, so I'd look more clever.

But the "gray" bugged me. It bugged me so much I had to go through and change it all back to "grey".

Then I started to panic, so I did what I always do when I'm starting to panic: I turned to Google. I was surprised and, frankly, relieved to find that I was not alone in my grey/gray conundrum, especially when I found this post by Bernie Zimmerman from May, 2004... and its 146 comments.

Zimmerman explains that both spellings of the word are acceptable, but he sums up the difference this way: "Gray is a color. Grey is a colour."

Fascinating. Why, then, is it grey that speaks to me? I mean, really: despite my fascinations with Paul McCartney, Colin Firth, and Sarah Ferguson, I will never actually be British. Though I live in a cold climate and support socialized medicine, I will never actually be Canadian. I'm an American. I wait in lines, not on them. I go on vacation, not on holiday. If I wrote the word "colour," it would feel like an affectation.

But I am all about the grey.

Maybe my brain is making a subconscious connection to another recent obsession: Grey's Anatomy. I think it's more likely, though, that I'm being driven by a connotative meaning of the word that Wikipedia describes this way:

"Some American writers tend to assign wistful, positive connotations to grey, as in 'a grey fog hung over the skyline', whereas gray often carries connotations of drabness, 'a gray, gloomy day'."

That's it, I think. In a post that celebrates grey - that celebrates Bud and his unique grey matter - I was driven to steer clear of connotations of the drab and the gloomy.

So grey. I'm sticking with grey.

By which I mean no disrespect to Carol Gray.

Or Macy Gray.

Or Gray Davis.

Oh, no. Here we go again...

Monday, March 19, 2007

Black-and-white is not my favorite color

We got the written report from Bud's day-long assessment at the developmental clinic. Honestly, I have no right to be disappointed. They didn't promise anything more than they delivered and, in fact, they tried to warn me about the limitations of their assessment. But I heard "interdisciplinary," and I made assumptions: I assumed that each specialist would gather information in his or her own area of expertise, and I thought they'd drop it all together into a pot and look for what bubbled up, watching closely for the subtleties in the aromas, for the ways that the flavors mixed together, and then try to capture in words the unique delicacy that emerged.

My assumptions were only half right. Each specialist gathered information from his or her own area of expertise. Then they put each bit of information in a tidy little pile on a plate, spacing the piles out so that the flavors complemented each other but never really mingled together. And then they wrote a report that described each item on the plate, clearly and accurately, in black-and-white terms.

It's the black-and-white that I find most disheartening, I think. I'm not typically a fan of black-and-white. I prefer greys - and even then, I want to know more about them: are they more charcoal, or more slate? Are they a smokey grey, or more opaque? But there are few greys in this report. Instead, the report is a series of results from standardized assessment tools. It lists scores and averages and percentiles and standard deviations that, ultimately, have no real-life meaning or relevance to me. The end result is a stack of pages that reflect the testing process, but that do not seem to reflect much of my son.

In fact, I find myself getting defensive as I read the lists of percentiles. Part of it, I know, is simply the reaction of a mom who refuses to acknowledge that her son is anything less than "best" ("What do you mean my son won't be the starting pitcher for every little league game this season?") Beyond that, though, I take issue with the assumption that these tests are useful as a measure of Bud's ability, of Bud's performance, of Bud's intelligence.

Without question, these scores and percentiles are an accurate measure of Bud's ability to take these tests. But I would submit that these tests are not designed with Bud's unique ability in mind.

I was talking about it recently to a friend, who asked, "But didn't they use versions of the tests that weren't language-based? Didn't they assess nonverbal intelligence?"

Yes, yes. Of course they did. But they assessed nonverbal neurotypical intelligence. It seems to me that the only thing they confirm is that Bud is not neurotypical. They confirm that he's autistic.

And we already knew that.

My hunch is that if we really want to assess how Bud thinks - how well and how differently he thinks - then we have to cast aside our preconceived ideas about the ways we measure intelligence. We need to do more than try to measure the same things in different ways. We need to determine how to measure different things entirely.

We need to start working in a whole new paradigm.

Interestingly enough, it was a Gray who started me thinking about paradigms. I recently attended a presentation by Carol Gray, the originator of Social Stories (TM), in which she talked about the idea of paradigm shifts. She quoted Joel Barker from The Business of Discovering the Future: a "paradigm is a set of rules and regulations (written or unwritten) that does two things: 1) it establishes or defines boundaries; and 2) it tells you how to behave inside the boundaries in order to be successful."

Gray contends that if you're not operating within the correct paradigm, then it doesn't matter how hard or how efficiently you're working. Even the best made, most detailed map of New York City, she says, won't help you find your way around Chicago.

And that's just how I feel about much of the testing that was part of Bud's evaluation. It tested his ability to navigate a city he'd never visited. It neglected to ask him questions about his own hometown.

And, in retrospect, I can see that they told me that this might be coming. They cautioned that I might be disappointed. They told it to me in black-and-white.

But I was listening in grey.

Sunday, March 18, 2007

Rules

Oh, what a book. What a gorgeous, gorgeous book.

I just finished reading Rules by Cynthia Lord, which is a book geared for children in Grades 4 - 7. In other words, it's ostensibly too old for Bud and too young for me. But we both love it, albeit for different reasons.

Bud loves the book itself. I bought it a couple of weeks ago and added it to the stack of books-to-be-read that clutter my bedroom. Bud found it there and adopted it. He carted it around with him from room to room. He tucked it into his bag when we left the house. He browsed through it while he ate his breakfast.

He seemed captivated first by the cover art:


I think it spoke to his artistic sensibilities.

Beyond that, I think he enjoyed the book's heft. The book is lightweight and manageable, but its hard cover and lack of illustrations may have made it feel Important and Grown Up to him. And he seemed particularly delighted to find that when he opened to the first page of this Important and Grown Up Book, he could actually read the words:

"RULES FOR DAVID: Chew with your mouth closed... If someone says "hi," you say "hi" back... No toys in the fish tank."

What Bud didn't know, of course, was that he was reading a list of rules composed by the book's narrator, twelve-year-old Catherine, to help her eight-year-old brother David navigate the world. David loves rules, Catherine tells us. David has autism.

David is, in fact, quite a lot like Bud, which made me fall in love with him almost instantly. But Rules is not really David's story; it's Catherine's. And it's beautiful.

I won't say too much, because I don't want to spoil it for you. The story passes too quickly as it is - I started the book yesterday, and sped through until there were no more words to read. So I won't ruin it by giving you summaries and synopses and overviews.

I'll just say this: Rules is a book about being a parent, being a child, being a sibling, and being a friend. It's about ability and disability and about how we all manage through life with a healthy dose of both. It's about growing up and growing wise and making mistakes and making things right again. It's about integrity and respect and understanding and love. And it is, very deservedly, a 2007 Newbery Honor Book.

Two things before I end this post. The first is a tip:

I bought my copy of Rules at big box bookstore, but later discovered that I could have ordered a personalized autographed copy through Cynthia Lord's website. I'm sure I'll have opportunity in the future: this is a book that demands to be given as a gift.

The second is a Rule:

When you start this book, read slowly. It will come to an end long before you are ready to say goodbye.

Wednesday, March 14, 2007

Declarations of independence

"When in the Course of human events, it becomes necessary for one people to dissolve the political bands which have connected them with another, and to assume, among the powers of the earth, the separate and equal station to which the Laws of Nature and of Nature's God entitle them, a decent respect to the opinions of mankind requires that they should declare the causes which impel them to the separation." - U.S. Declaration of Independence, 1776

I was browsing the CDC website today and discovered a checklist of developmental milestones for “Middle Childhood," which they define as 6–8 years. I don't typically spend much time with developmental checklists. In fact, I pretty much stopped looking at them when Bud was an infant - he was already doing his own thing in his own way, and I discovered that even a cursory glance through What to Expect the First Year made my blood pressure start to climb.

But today I threw caution to the wind and took a look at what the fine folks at the CDC had to offer. They write (italics and embedded links my own):

Middle childhood brings many changes to a child’s life. (True enough.) By this time, children can dress themselves (Pretty much, except for the snapping and buttoning, but I’ll call that a check), catch a ball more easily with only their hands (More easily – yes, sure. Check.), and tie their shoes (Nope - but, in fairness to Bud, we usually go with Velcro.). Developing independence from family becomes more important now (Check). Events such as starting school bring children this age into regular contact with the larger world. Friendships become more and more important. Physical, social, and mental skills develop rapidly at this time. This is a critical time for children to develop confidence in all areas of life, such as through friends, schoolwork, and sports. (Check, check, check.)

I have to say: for a child with developmental delays, Bud seems to be startlingly on target.

His quest for independence is especially striking. And for Bud, it’s not just about doing things without assistance. It’s also about doing things on his own – about striking out as a free agent – about establishing himself as an individual person, unique and separate from his parents.

Last Friday was “Wacky Hair Day” at Bud’s school. It was Wacky Hair Day, that is, for the other children at Bud’s school. Bud made his needs quite clear in the days leading up to the event: For Bud, Friday would be Brown Hair Day.

Dark Brown Hair Day.

Regular Dark Brown Hair Day.

At the end of Wacky Or Regular Dark Brown Hair Day, Bud’s class was scheduled to gather for a rousing rendition of the Chicken Dance. When I dropped Bud off in the morning, Ms. Parker invited me to join them for the Chicken Dancing. She said she’d watch out the window for me and would open the back door when they were ready to begin.

I arrived on time, fifteen minutes before the end of the school day, but the back door to the classroom remained closed. I sat in my car and waited as the minutes ticked by and, eventually, dismissal time arrived. Ms. Parker emerged with Bud, and explained that he’d decided not to have me join them for the Chicken Dance. Bud himself offered no explanation, but hugged me when he saw me, then happily climbed into the car.

I didn’t bring it up again with him, but on Sunday, privately, at home, when the two of us were on our own, Bud invited me to do the Chicken Dance with him. We stood together in front of the full-sized bathroom mirror, clucking with our chicken-beak hands, flapping our chicken-wing arms, shaking our tails feathers down to the floor, and laughing, laughing, laughing. Bud didn’t talk about it directly, but I understood his meaning: “It’s not you, Mom; it’s me. I love you, Mom. I have fun with you. But there are some things I need to do on my own.”

It was good preparation for me, actually, because it eased me into the conversation that Bud and I had this week when he came home with a flyer about an upcoming first-grade field trip to see a children’s play. Parents are welcome, the flyer said, but get your tickets soon!

I read the flyer out loud to Bud and asked if he’d like to have me come along on the field trip.

“Just me and the other kids,” he answered quickly. “And Ms. Parker.”

“Some of the other moms and dads will be there, Bud.”

“Okay.”

“So maybe I could come, too?”

“No. You can wait in the car. At school. You can wait and pick me up when it’s over. Okay?”

"Okay, Bud."

And it is okay, Bud. You’re growing up. You’re stepping out. You’re moving on.

It’s hard for me. But it’s good.

It’s really good.

And we hold that truth to be self-evident.

Tuesday, March 13, 2007

Coffee on the rock

Paul McCartney is merging with Starbucks.

Okay, not quite. But almost. Here is the speculation. Here is the (admittedly somewhat sketchy) confirmation.

I swear I am not behind this.

I know, I know - corporate sponsorship and blah, blah, blah. But McCartney is not new to corporate sponsorship. His recent tours (and by "recent" I mean, of course, within the past twenty years) have been underwritten, first by a major credit card company and then by a financial investment firm. So, really, if it's going to happen anyway, then Starbucks is at least a step in the right direction.

As I wrote yesterday, Paul McCartney is a touchstone for me. But coffee is at least a runner-up.

So, really. Let's look at this: Great coffee at the concerts. Great music at the coffee shop.

This partnership rocks.

Monday, March 12, 2007

Everybody needs a rock

I've had a book on my mind all week.

It's not Portia Iversen's Strange Son, although my post about that is what sparked my thinking about this book. This comment and this comment made me think about it even more.

The book is Everybody Needs a Rock, a children's book by Byrd Baylor. Here are some excerpts:

"Everybody needs a rock. I'm sorry for kids who don't have a rock for a
friend."


"Not just any rock. I mean a special rock
that you find yourself and keep as long as you can - maybe forever."


"If somebody says, 'What's so special about that
rock?' don't even tell them. I don't. Nobody is supposed to know what's special
about another person's rock."
In two scenes toward the end of Strange Son, Portia Iversen talks about the rock that her son Dov carries with him. In both scenes, Dov loses his rock and becomes visibly upset and dysregulated. Dov needs his "special rock;" it grounds him. It is his own, very literal, touchstone.

I've been thinking about Dov and his special rock for the past couple of weeks because I've noticed that Bud has recently had a tight grip on a metaphoric touchstone of his own: the Teletubbies.

Bud has been a fan of the Teletubbies since he was a year old. We don't know why the Tubbies are so special to Bud; we only know that they are. In his early years, Bud was consumed with the Tubbies. His earliest language and his earliest echolalic scripts drew heavily from Tubby-style baby talk. The rest of us had a love/hate relationship with the Tubs - or "the guys," as Bud calls them. We hated their slow-paced repetitive sequences, their infantile words, the banality of their plot lines; we loved how happy they made Bud.

In recent years, Bud's passion for the Teletubbies has come in waves, with each wave seeming to lessen in intensity as the Tubby tide appeared to be going out. In recent months, especially, Bud's interest in other shows and other characters has continued to grow, and while he still played with Tubby characters, the books and the movies sat untouched as Bud seemed to be moving on.

In the past couple of weeks, though, the Tubbies have made a comeback, and life is once again All Tubbies, All the Time. The Tubby movies are in high rotation, the Tubby toys are the only ones getting attention, the Tubby books are strewn throughout the house. I found myself feeling discouraged by their reemergence, and regarding it as a setback. I started wondering if Bud's peers would start to tease him - this seven-year-old who likes baby things. I started to bristle when I saw Bud engage in Tubby-play.

Then I read this post on AutismVox, in which Kristina draws a parallel between the Tubbies and the other "Fab Four" from England: The Beatles.

And that helped me regain some perspective.

What I remembered is this: The Beatles in general, and Paul McCartney specifically, have played the same role in my life for the past thirtyish years that the Tubbies have played in Bud's for the past six. They have grounded me. They've been my rock.

The Beatles didn't really make my first car run smoothly. But as I drove away from the dealership having made the first significant purchase of my adult life, I flipped on the radio and heard the opening strains of "Drive My Car," and I was certain that it was a sign that I had purchased well.

Perhaps Paul McCartney didn't intend to write a song that would make me feel close to my children. But when I listen to his album Flaming Pie, and I hear him sing "It was written that I would love you from the moment I opened my eyes...I'll hold you for the rest of my life," I am certain that he did.

And I know that The Beatles didn't really get me out any faster when my car was stuck in a snowbank last week. They didn't keep Bud and me from being an hour late to school and work. But, even so, as we sat waiting for rescue with the engine running and listened to the radio play "Help me if you can I'm feeling down, and I do appreciate you being 'round," I felt strangely reassured.

My connection to the Beatles hasn't kept me from branching out. I listen to lots of different music. I have a wide range of interests. But despite that, the Beatles always lurk on the periphery of my life, and now and then - especially in the midst of challenge - they take center stage.

I imagine, though I wouldn't ask (because "nobody is supposed to know what's special about another person's rock"), that the Tubbies provide the same sort of comfort, shelter, and sense of home for Bud. In that context, I can see clearly why the Tubbies came back in full force during what probably felt to Bud like an extended period of upside-down: a week of too-sick-to-go-to-school, followed by a week of school vacation, followed by a week of Nana-and-Papa-are-on-vacation-and-every-day-is-a-little-bit-different-from-the-last. Though Bud has been revisiting the passion he's had since he was a baby, he is not reliving his infancy. He is approaching the Tubbies as a seven-year-old: working with me to add his Tubby books to his Library Thing account, reading their stories out loud to me, inviting me to help him create elaborate Tubbylands on the kitchen table, playing Director as he makes his characters act out the scenes on the videos he's watching, filling pages with gorgeous abstract art in purple, green, yellow, and red.

He's not talking like a baby. He's not "retreating into his own world." He's not regressing.

He's grounding himself.

And we all do that in some way, don't we? Sometimes the things that ground us are actually made of stone. Sometimes they're fuzzy and they play movies in their bellies. And sometimes they just sing silly love songs.

But everybody needs a rock.

Sunday, March 04, 2007

Snow wonder

Picabo Street.

Alberto Tomba.

Bode Miller.

Bud.

Artists of alpine. Masters of the mogul. Superstars on the slopes.

Bud had his very first lesson today through an adaptive ski program for people with disabilities. I hadn't prepared him very much - we'd talked about it, of course, but I'm not a skier, so I couldn't give him the step-by-step of what he could expect. Luckily, Bud didn't need the preparation; he was a natural.

We were greeted by the two instructors who would be working with Bud for the day. They helped him get fitted for boots, helmet and skis, then we headed to the bunny slope. Bud was comfortable on his skis from the start, and after just a few minutes of sliding on the level ground at the bottom of the slope one of the instructors asked my husband and me if we'd like to take a break. I took his point right away - Bud would be better able to pay attention to their instruction if he wasn't so focused on us. I told Bud that his dad and I were going to find the bathroom and that we'd be back in a little while. To my surprise, Bud was fine with our departure and as we walked away from the slope, he turned back to his instructors to get his lesson underway.

We wandered over to the lodge for coffee, and after about 30 minutes we decided to sneak back to get a view of him, just to make sure that he hadn't gotten worried because we'd been gone so long. As we walked back to the children's area, we saw another staff member from the adaptive ski program walking toward us.

"Are you headed back there?" he asked. I immediately pictured Bud in tears, inconsolable, believing he'd been abandoned.

"Yes," I said.

"Good," he said. "They asked me to come find you so you could see him in action. They said he's doing a great job. Try to stay where he can't see you, okay?"

"Okay," we answered, resisting the urge to break into a run. We got back to the children's area and slipped into a warming hut with a wide window. They were right: Bud was doing a great job. He was riding a little lift to the top of the slope, then gliding gracefully to the bottom. His instructors struck just the right balance of staying close enough to make him feel safe and far enough away to make him feel independent. Each time they ascended the slope they took him a little further up. As he descended, he held out his arms and bobbed his head from side-to-side. Though I was too far away to see his face or hear his voice, I could read his body language clearly: Look at me, he said. I'm flying!

About 90 minutes into his two-hour lesson, his instructors stopped to consult with each other (to determine, I found out later, whether or not to move over to a larger hill.) I watched Bud as the instructors chatted. He faced away from the slope, and his face scanned the group of strangers collected at the bottom of the hill.

"He's looking for us," I said to my husband. "I think he's starting to worry." As if on cue, his instructors turned their attention back to him, and after a brief interaction the three of them headed toward us.

We exited the warming hut and joined them. The instructors had picked up on the same change in Bud's demeanor as I had, and they responded right away. We were scheduled for an afternoon session as well, and they thought that Bud would be ready for a larger incline once he'd had a break. We asked Bud if he'd like to ski again after lunch, and he said that he was tired and ready to go home. We decided not to push it and to end on a positive note, so we all headed back to the office to return Bud's gear and cancel the afternoon session.

As I got Bud unbundled and ready to go, my husband chatted with one of the instructors. Bud had done incredibly well, the instructor said. He'd made more progress than most kids do in their first lesson. "He's going to be a great skier," he said.

We stopped at the lodge for an apr├Ęs-ski chocolate chip cookie, which Bud munched as we headed back to the car.

"Bud," I asked, "Was it a hard day or an easy day?"

"An easy day," he said.

"What was your favorite part?"

"The skiing."

"Do you want to come back another day and ski again?"

"Yes."

Yes.

Without question: A gold medal day.

Friday, March 02, 2007

More reading and thinking: Strange Son

If you've been watching my sidebar, then you know that I've been reading Portia Iversen's Strange Son: Two Mothers, Two Sons, and the Quest to Unlock the Hidden World of Autism for weeks. My husband says that my slow progress through the book tells him all he needs to know about what I think of it.

But it's just not that simple.

Last week, as I was reading, I did a lot of thinking about thinking, and especially about what and who makes me think. I realized that I'm usually drawn to like-minded writers - to those who make me think more about things I already think.

But I also recognize that sometimes my best learning - by best thinking - comes as a result of reading things written by people who think very differently from me. Sometimes those different-thinking writers help me appreciate perspectives I'd not considered before, and alter my own perspective; sometimes they make me better able to articulate why I'll continue to think what I've been thinking all along.

That's the spirit with which I tried to approach Strange Son, because it became clear to me almost from the outset of the book that Iversen and I differ in our approaches to parenting a child with autism. As I read, I reminded myself that our boys are very different from each other: Iversen's son Dov is almost entirely nonverbal, and for many years Iversen felt unable to reach him. I reminded myself that Iversen's life, experiences, and parenting journey were undoubtedly different from mine, and that I could not possibly know for certain what I would have done - what my choices would have been - what approaches I might have tried - had Bud been less like Bud and more like Dov.

I could not possibly know.

And yet, I could think.

And what I think is this: I think that no matter who Bud had been when I met him - whether he'd been nonverbal or deaf, whether he'd had seizures or been hyperactive, whether had he been unresponsive or typically developing - no matter who he'd been, I think that at any point at which I felt like I couldn't understand him - at any point at which his behavior seemed frightening - at any point at which I felt out of my element - my first instinct would have been to spend more time trying to engage with him, trying to understand him, and trying to let him know I was there - for him, and with him.

Unlike Dov, Bud is verbal and visibly engaged with the world, but I think - I believe, though I can't know - that if he wasn't, I would have had the same philosophy. If Bud spent his days staring past me, not responding, watching dust mites in a sunbeam, I believe that - for a while, anyway - you'd find me sitting next to him, feeling the warmth he felt, watching the patterns he saw, and thinking: how can we use this? what can we do next? what can we do here together?

Iversen took a different approach, and in the first half of Strange Son she outlines the journey she took in the years immediately following Dov's diagnosis, as she invested herself fully into learning about the science of autism - the biology, the neurology, the genetics - and into raising money and recruiting researchers. Together with her husband she founded the Cure Autism Now foundation, sponsoring research, fundraising efforts, and national conferences. With the financial support of CAN, she brought Tito Mukhopadhyay, a young man "nonverbal and severely affected by autism" and his mother Soma to the United States from their home in India. Under Soma's direction, and despite his "rocking and flapping and staring ahead as if he (didn't hear) at all," (p. 49) Tito learned to communicate by pointing to letters on an alphabet board, revealing his IQ of 185 and his talent for writing poetry. Iversen lobbied researchers and scientists in the U.S. to raise awareness of Tito and Soma, and to promote research that might make this kind of communication possible for other people with autism.

Iversen's efforts were exhaustive, focused, and intense. She devoted every bit of her time and energy to her work with autism - to the work she did on Dov's behalf. But throughout most of Strange Son, it remained unclear to me how much of the work she did was actually with Dov. Dov remained a stranger to me for most of the beginning chapters of the book. Iversen's love for him is palpable; but, so too is her sadness, frustration, and fear. As I read, I got an increasing sense that, despite the long hours and hard work she put into studying, lobbying, and networking around autism, she regarded spending time with Dov just too difficult a task.

In the second half of Strange Son, Dov became a larger presence, as Iversen recounted Soma Mukhopadhyay's work with him, teaching him to use an alphabet board the same way she'd taught Tito. In a short time under Soma's tutelage, Dov was using the board and Iversen discovered through Dov's own words that he had been able to read for years, that he understood everything he heard, that he'd been paying attention to news reports on NPR, and that he was a smart, engaged boy.

I would have imagined that this would read like a moment of triumph - this unveiling of the "real" Dov - this moment in which mother and son could finally connect. And yet, it was one of the most heartbreaking moments in the book, as Iversen realized that her nine-year-old was a stranger to her. She writes, "After all these years, I had a thousand questions to ask him and a million things I wanted to tell him. And yet, I couldn't think of what to say. 'I love you,' I blurted out. My words hung strangely hollow in the interior of the car." (p. 291)

I imagined that the rest of the book would lead to a denouement of lessons learned: the importance of recognizing your child's own unique talents and gifts, the need to savor every moment that you have with your child, the importance of connection. But the lessons never came, and Iversen remained a stranger to me.

As a result, the more I read, the less inclined I was to keep reading. The science that Iversen presented was thought-provoking. Her description of scientific studies about the arousal states of children with autism was fascinating. Tito and Soma's story was interesting. But it was Dov whom I longed to know.

So I kept reading - until, toward the end of the book, Iversen described a presentation by Dov at a CAN annual scientific meeting. He was scheduled to appear with Soma in front of a room full of people to give a demonstration of how he used the alphabet board to communicate. When the presentation began, Dov seemed anxious and tense and pointed out the word "rock." Soma pushed him to name three types of rocks, and his anxiety and anger grew as he growled, pinched, and head-butted Soma, but ultimately typed the words igneous, sedimentary, and metamorphic.

It was an extraordinary achievement, especially given the conditions under which Dov was asked to perform. And yet, Iversen describes her reaction this way:

"I was relieved when it was over and Soma and Dov joined Erika and Tito and they left the room. I rationalized to myself that at least this was a demonstration of how even such an out-of-control, behavioral wreck of a person could still be intelligent." (p. 352)

An "out-of-control, behavioral wreck of a person."

Her son.

I put the book down, and thought perhaps I was done with it.

A few days later, I returned to it. Perhaps, I thought, the next page would reveal her regret, her learning, and her determination to do better next time.

Instead, I read this:

"The room was emptying out for the morning break when Gino came over to me.
'I found this under the camera tripod,' he said, handing me a rock. 'I think Dov
dropped it on his way up to the stage.' I turned the rock over in my hands. It
was Dov's rock, the one he had been carrying around for days, a security blanket
of sorts. ... I now realize that Dov spelled 'rock' because he had lost his rock
on the way to the stage. He wanted his rock; he needed his rock. But when
Dov spelled 'rock,' Soma pushed him, until he spelled out what she wanted him
to."
(p.352-353)

I was relieved that Iversen gained this insight - that she recognized Dov's need for local coherence, and understood the loss of local coherence that came with the loss of his rock. I was certain that this knowledge would make her realize that Dov's dysregulation in the demonstration was an understandable reaction to that loss, and did not make him a "behavioral wreck of a person." I scanned the pages ahead, looking for the conversation in which Iversen apologized to Dov for failing to pay attention, for not working harder to understand what he was trying to say, for pushing him to perform in the midst of overwhelming and unreasonable conditions, and for blaming him for his reaction to them.

I hope that the conversation happened in real life. It didn't happen in the book.

At least, I don't think it did. I'm about 25 pages away from the end of Strange Son, but I've finished reading it.

It may be that Dov's story is not really the story that Iversen intended to tell with this book; unfortunately, it was the story I wanted to read. Though the book's subtitle calls it the story of "two mothers and two sons," at its most basic level, Strange Son is a book about one woman's take on autism - one woman who knows a lot about the science of autism. I learned a great deal of information through her writing, and she made me ponder issues I'd never considered before. But, really, I am not particularly drawn to books about the science of autism. I am drawn to parenting memoirs; and, to my mind anyway, at its most basic level, Strange Son is not a parenting memoir.

And so, I've stopped reading just a few chapters from the end of the book. I realize that there may be great insight in these final chapters. There may be a glorious "a-ha" moment ahead. But that will be for another reader to find out.

I'm off to spend time with my son.

3/2/07, 6:00 p.m.
Addendum to Original Post:

In the interest of full disclosure and in response to some commenters who seem to have interpreted this post as an unprovoked attack on Portia Iversen's parenting, I'd like to add this: I received a complimentary copy of Strange Son from Iversen's publicist for my review. I knew when I accepted the book that I would need to post my reaction to it, no matter what that reaction was. I'm certain that both Iversen and her publicist would insist on getting an honest review. Anything less would compromise the integrity of us all.

This post is intended to be a review of Strange Son, and not a commentary on Portia Iversen or her parenting. And among the positive reactions that I had to the book (Iversen presents compelling information about the science and research of autism; Iversen writes with great intellect; Iversen's account of her tireless efforts in promoting autism research is impressive), were less positive reactions (I found some of her language when writing about Dov jarring; though the book promotes itself as the story of "two mothers, two sons," Dov struck me as a supporting player with a minor role for large segments of the book; I would have found the book more engaging if she had written more about her parenting and delved more into her life with Dov.) I've tried to capture all of that in the post above.