Sunday, February 26, 2006

Broadband communication

More progress in progress.

I have posted previously that one of my primary goals is to help Bud become a broadband communicator who can receive and make meaning of information coming to him through multiple channels simultaneously, then respond automatically and appropriately. I have been using the RDI philosophy as a framework and guide toward that goal.

It's working. Here's how I know:

This weekend, we had a family birthday party and, with it, a house full of people. Bud was a bit more hyper than he normally is, but overall he was doing well. Shortly before dinner, I was in the kitchen talking to my mother who was checking the readiness of a vegetable casserole. Bud came zipping through the kitchen at top speed - a boy on a mission to somewhere - and ran right between my mother, her hands struggling to maintain an awkward hold of a steaming casserole, and the counter on which she hoped to place it. My mom swerved just in time to keep the casserole from falling onto either Bud's head or the floor. Bud never slowed his step, but just as my mother swerved and avoided the collision he called over his shoulder, "Sorry, Nana!"

He wasn't responding to any verbal statements; no one said "Watch out, Bud," or "Nana's going to drop a steaming hot casserole on your head." Bud was not carefully watching Nana or anyone else in the kitchen; his mind was clearly focused on something else. But in an instant - in a FLASH - he read the nonverbal message in my mother's rapid swerve; he interpreted the halt of conversation and ensuing moments of silence; he recognized the quick exhales in the room that signaled that the crisis had been averted. In a fraction of a second, his brain received the information, interpreted it, and responded to it - effortlessly and appropriately.

We're getting there. He's making the connections. Bud is learning how to navigate the interaction super-highway.

Thursday, February 23, 2006

Blogs, autism, and the moral conversation

I read a lot of blogs written by parents of children with autism. Sometimes I'm moved; sometimes I'm humored; sometimes I'm inspired. But increasingly in recent days I have been challenged.

Though I'm typically drawn to the blogs written by parents who share my philosophy, I've broadened my approach recently to read some by parents with alternative viewpoints. Even in many of my "regular reads" I've found people challenging themselves and each other, considering multiple perspectives, and taking some risks - and I really appreciate it.

To make sense of it all, I have found myself turning to the principles of the "moral conversation," an approach to considering complex issues that I first learned in graduate school and that I now recognize as the single most valuable piece of learning in my life so far. Developed by Dr. Robert J. Nash at the University of Vermont, the moral conversation seeks to provide a framework for engaging with others about difficult, potentially divisive issues in a manner that emphasizes the fundamental worth and dignity of all those involved. Its central premise is deceptively simple:

First, find the truth in what you oppose and the error in what you espouse.
Then and only then can you declare the truth in what you espouse and the error in what you oppose.

It sounds easy; it's not. The moral conversation is not about maintaining a superficial tolerance for ideas with which we disagree. It's not about listening politely and acknowledging to others that they "make a good point." It's about truly engaging with the ideas we resist: trying them on; walking around in them for a while; running them through multiple filters; and searching, searching, searching for the truths that lie within them. Because, usually, the truths are there. They are small "t" truths: not universal, not unassailable, but truths nonetheless.

But that's not all.

The moral conversation further pushes us to consider our own beliefs, opinions, and ideas. It requires us to delve deeply into the truths to which we've, consciously or unconsciously, assigned a capital T, and then to bravely, honestly, thoughtfully reevaluate our stances and change our cases.

Finally, it requires us to put it all together and articulate a new, more thoughtful, less universal, perhaps less dogmatic, but usually much more honest philosophy.

I've been using the moral conversation in many ways for many years. It has guided me through some of the most painful, confusing, conflicted times in my life. It has helped me in my profession, in my relationships, and in my parenting. It's difficult every time; but when I do it well (and I don't always do it well) the benefits are extraordinary.

And so, once again, it's time to let down my defenses, open up my mind, and engage in a moral conversation - with other philosophies, with other writers, and, ultimately, with myself.

Monday, February 20, 2006

Whirlwind

I'd be exhausted if I weren't in complete awe of Bud's staying power. His day (and mine) started at 5:30 this morning with a loud, all-out, full-scale song-and-dance routine. I believe it was something from Elmo's Wild Wild West, but it's hard to remember back that far. For the past fourteen (plus) hours, Bud has been going nonstop.

Nonstop sound.

Nonstop movement.

My day has been a blur of singing Hap Palmer Monster Clubhouse jumping making-puppets-with-hands "THE WILD WILD WEST!" It's a Big Big World shouting chattering skipping rolling crashing running talking "Everybody now!" commands to join in "Howdy, cowboy Bud!" dancing "Now it's time to get chased by a toy 'nelephant" screeching dashing escaping "Mama, what did I did?" marching "You try this, Mama!" Teletubbies "It's a great day in Suessville today!" Zoboomafoo "Furry feeling of the day!" "Now we're WATER CREATURES" splashing "YEEEEE-HA!" everybody sing the big finish as loud as you can "You and me and the curve OF THE WOOOOOOOORLD!"

Through breakfast, lunch and dinner.

Through an OT session.

Through Target and TJ Maxx.

Through much too much time in the car.

He's been in a joyous mood, with not a moment of fuss or disagreement about anything. But he hasn't taken a single breath all day. He's been manicmanicmanic gogogo. All. Day. Long.

I gave him his melatonin about an hour ago. He should be asleep by now. He's in bed; I'll give him that. But he's singing softly, with an occasional outburst of "Yee-ha!" And he's calling me, mostly to report that he's not scared.

The weather report says it'll be a mix of sun and clouds tomorrow. But my human barometer tells me there's a storm on the way.

Progress in progress

One of the greatest benefits of writing this blog is that it allows me to chart Bud's progress without relying on my (increasingly middle-aged and ever-fading) memory. This struck me the other day when Bud woke at 5:00 a.m. bursting with frenetic energy (how does he DO that?) and tried to rouse me from the blurry fog of sleep.

"I'm awake already!" he said.

"You sure are," I mumbled.

"Yes, I are. I am."

"Mmphlmm..."

"And I'm getting ready for my breakfast!"

As I laid there trying to will my body to move it struck me how far Bud's language has come. He's not just using tenses appropriately now; he's also self-correcting his errors. I thought about the post I wrote when I started to see the signs that this skill was emerging. When was that? Last summer? I couldn't remember, so I checked the blog.

Four months ago.

It was only FOUR months ago! It's startling; each day builds on the last and each evolving skill gets sharper in such small increments that it's easy to lose sight of the big picture. It's easy to focus on the deficits and the struggles and the things that still need work. But he's making progress; real, tangible, actual progress. And I've got the blog to prove it.

Sunday, February 19, 2006

Control issues

If you've been on the planet lately, then you've probably heard about Sudoku, the little number puzzles that initially seem innocuous enough, but upon closer inspection reveal themselves to be part of an insidious plot to take over the world.

I resisted the temptation of these puzzles (being all too certain of the effect they would have on me) until a recent bout of ill health left me speechless for the better part of a week. To pass the time, I started doing the Sudoku puzzles in the daily paper and very quickly I found myself in the throes of addiction. Before long I bought a book of Sudoku puzzles and it's been all downhill from there.

Luckily, my schedule is usually too busy to allow me to do more than a couple (okay, a few) puzzles a day. But this lazy Sunday morning I found myself with a stretch of unfilled leisure time, and while Bud watched PBS I sat next to him on the couch, pulled deeper and deeper into the vortex of the black hole that is Sudoku.

I finally emerged, dazed and breathless, tucked my pencil into the book, tossed the book on the coffee table in disgust, and exclaimed to no one in particular "ARGH! Sudoku is taking over my life!"

Bud perked up on the couch next to me. "No, it's not Sogadutu!" he chirped brightly, "It's MEEE!"

I stand corrected.

Friday, February 17, 2006

Reality check

I swear to you, I had no idea that I cackle.

Bud and I were playing and he was doing a big fake laugh - "HAHAHAHA" - that he does. He encourged me to join in, "You do it!"

So I jumped in with a fake laugh of my own: "HAHAHAHAHA!"

"No, like this - heh-heh-heh-heh-heh," he cackled.

"Hahahaha," I tried, in a different fake laugh.

"No," he redirected. "Heh-heh-heh-heh-heh."

"Heeheeheeheeheehee!"

"No. You try it - heh-heh-heh-heh-heh!"

The absurdity of the conversation combined with his impish little face cackling at me finally got to me and my fake laugh morphed into a real one.

And that's when I heard it.

"Heh-heh-heh-heh-heh!"

It stopped me cold.

I cackle.

I am a cackler.

Reality bites.

Thursday, February 16, 2006

Lover boy

Valentines Day is one of Bud's favorite days of the year; he calls it "Love Day." On Tuesday, after about a week of struggling with dysregulation during classroom transitions, Bud had a fabulous day at school. He was overflowing with warm feelings and, in the spirit of the holiday, spent his day kissing his teacher and classroom aide. Luckily, with only one exception - when he was moved by the spirit while the aide was standing next to his chair and he leaned over and gave her a big smooch on the thigh - his kisses were apparently appropriate and well-received. Much to my delight, his kissing fest has continued at home and I have been the lucky recipient of pecks and smacks and big sloppy expressions of affection.

He's reluctant to let Love Day end, and has been faithfully carrying around the small foam heart that Mrs. H gave him as he's tried to keep the feeling alive. He's also been wearing the adorable red beret we gave him instead of candy for Valentines Day. (He'd spied it - and coveted it - in a store before Christmas, so I'd returned to the store, bought the hat, and squirreled it away so well that I couldn't find it in time for December 25. Enter the Valentines Day present.) He looks dashing, and is so pleased with himself that he's even been wearing the beret to bed.

It makes sense, though. After all, French is the language of love, c'est pas?

Tuesday, February 14, 2006

Abstract Random

Now that 2006 is well under way and Bud has settled into the routine of the spring semester of Kindergarten, I have started obsessing about the thing any thoughtful, caring, neurotic mom obsesses about at this time of year: who will Bud's teacher be next year? I am so delighted with Bud's current teacher that I am maintaining a low level of (I realize, irrational) panic that his educational experience will all be downhill from here. So I've started thinking about what makes Mrs. H such a great fit for Bud, and what qualities I should be seeking in his next teacher.

An off-handed comment Mrs. H made a few weeks ago has gotten me thinking. She was telling me about the teachers' recent professional development day. In one of their workshops, they assessed their own learning styles. The model they used for the assessment is one developed by Anthong F. Gregorc, and my admittedly very limited understanding of it was gleaned from a one-hour workshop that the school principal gave for parents last year. Briefly, the model looks at two key factors: perception and ordering.

There are two types of perception in the model - concrete and abstract - and people usually show a preference for one or the other. Concrete perception is based on the information we take in with the five senses, the things we can see, hear, taste, touch, and smell. It is the literal, actual, reality of what is right here right now, and people who use it tend to think "It is what it is."

By contrast, abstract perception happens when we take in information by looking for themes and patterns, looking beyond what is actual to imagine the more subtle implications of what is possible, using intuition to form our ideas about what we are experiencing. People who use abstract perception tend to think, "It's not always what it seems."

The model also presents two styles of ordering - sequential and random - and, as with perception, people tend to prefer one over the other.

People who use sequential ordering tend to prefer organizing information in a linear, step-by-step manner, follow a logical progression, and take a traditional approach to problem-solving.

People who prefer random ordering tend to organize information by "chunks" in no particular order. They tend to leap into the middle of the problem they are solving instead of starting at a clearly defined beginning, and they jump around as they work, skipping steps when the step is not needed to get to the goal.

When people assess their preferences and abilities in these two areas, they typically discover that they fall clearly into one of four preferred learning styles:

Concrete Sequential
Abstract Random
Abstract Sequential
Concrete Random

When I did the assessment a year ago, I was not surprised to discover that my learning style is Abstract Random. I have worked a great deal with the Myers-Briggs Type Indicator, and my clear preference for INFP suggests the same sorts of attributes. I was interested to learn, however, that Mrs. H is also Abstract Random. Even more interesting was the fact that so is nearly every member of the team who works so well with Bud.

Fascinating.

As I read through the descriptions of each of the learning styles, it seems to me that Bud (and perhaps many others on the spectrum) is uber-Concrete Sequential. Some parts of the description that resonated most (thoughts in parentheses are my own):

What makes sense to them:

  • Working systematically, step by step
  • Paying close attention to details (that are important to him)
  • Having a (visual) schedule to follow
  • Literal interpretations
  • Knowing what's expected of them
  • Routines, established ways of doing things

What's hard for them:

  • Working in groups
  • Discussions that seem to have no specific point (that are of a particular interest to him)
  • Working in an unorganized (overstimulating) environment
  • Following incomplete or unclear directions
  • Working with unpredictable people
  • Dealing with abstract ideas
  • Demands to "use your imagination"
  • Questions with no right or wrong answers

Sound familiar to anyone else?

What is most interesting to me is that although Bud has such a strong (overwhelming?) preference for Concrete Sequential learning, he responds least to the educators and methodologies that are also Concrete Sequential. I suppose it makes sense. If Concrete Sequential educators are concerned with finding and teaching the Right Answers, it would be difficult for them to comprehend - never mind appreciate - the answers that are Not Even Wrong. For most Concrete Sequentials, the "correct" approaches, responses, and products are the conventional ones. But Bud's concrete reality enters his consciousness through a different filter; his sequence is always logical, but it is rarely traditional.

So, as I think about the teachers and classrooms in which Bud will thrive, I realize that he needs to be in an environment in which he is guided, challenged, and supported by Abstract Randoms:

What they do best:

  • Listen to others
  • Understand feelings and emotions
  • Focus on themes and ideas
  • Bring harmony to group situations
  • Establish positive relationships with everybody
  • Recognize and meet the emotional needs of others
What makes sense to them:

  • Personalized learning
  • Broad, general guidelines
  • Maintaining friendly relationships
  • Enthusiastic participation in projects they believe in
  • Decisions made with the heart instead of the head
The primary question they ask while learning: "How can I make a difference?"

It seems to me that it is the Abstract Random teacher who best understands the difference between consistency and sameness; who sees that while Bud needs consistency and predictability, it is the consistency of philosophy and the predictability of relationship, and not the routine of activity or behavior, that will yield success. He can deal with change; in many ways he thrives on change. But he deals with change best when he has an Abstract Random guide who can help shape his understanding of the change and help him to know that even in transition he is safe and life is stable.

Last year Bud had some testing with a wonderful child psychologist. As we were wrapping up, I asked him what I should be looking for in a classroom environment for Bud. He gave me a few concrete suggestions, then paused. "The most important thing," he said, "is that Bud needs to be with people who love him."

I knew that he was right. The teachers, the specialists, the paraprofessionals who are best suited to Bud are the ones who are primarily concerned with making a difference in his life, who believe in him and in the transformative power of education, who can hear the responses he gives that are not even wrong and without hesitation hone in on the parts that are so very right, who try new things and respond and adapt and change, change, change while always maintaining a centered, rooted, immutable Bud-focused philosophy.

Now how do I explain all that to a potential first-grade teacher?

Friday, February 10, 2006

Mind-reading and the illusion of understanding

I'm finished with Simon Baron-Cohen, et al 's Teaching Children with Autism to Mind-Read. I haven't read the whole thing, but I'm done with it.

As I described in a previous post, the book outlines a very structured technique for helping children identify emotions in other people. It's a systematic approach, and I'm certain that it works. But it left me with one question:

So what?

So what if my son can tell that you are happy/sad/angry/afraid? So what if he knows why you are happy/sad/angry/afraid? So what if he can predict that a particular set of circumstances will make you happy/sad/angry/afraid?

What does any of that matter if, ultimately, he doesn't care that you are happy/sad/angry/afraid?

It seems to me that this very structured (and, to me, rigid and inflexible) approach is a very "autistic" way to teach about human emotion.

The model suggests that solving problems like the following will help children with autism understand "desire-based" emotion: James wants chocolate ice cream. His mom gives him vanilla ice cream. How does James feel? (Choose one: happy or sad.)

It makes me want to scream.

Perhaps James feels neither happy nor sad. Perhaps he feels vaguely unsatisfied. Perhaps he first feels disappointed, but then feels the excitement of discovery as he experiences vanilla for the first time and finds he likes it even more than he likes chocolate. Or - gasp! - perhaps he won't perseverate on the ice cream; perhaps, instead, James will say to himself "It is a beautiful sunny day, and while I don't really care for vanilla ice cream it doesn't matter all that much in the broad scheme of things. I think I'll just skip the ice cream and play on the swings instead."

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. I need to help him become a broadband communicator - to read, interpret, and respond to multiple cues simultaneously and automatically. Since that's my goal, I need to choose the educational pedagogies and intervention models that are best able to help him get there; and for that reason, mind-reading won't be included in Bud's curriculum.

Thursday, February 09, 2006

Happy bloggiversary

I read once that when you are struggling to figure out what direction to take with your life, you should try to remember how you answered the question "what do you want to be when you grow up?" when you were ten years old. I don't remember the specific rationale, but I think it had something to do with ten being the magic age at which you knew enough about who you were, but had not yet begun to deal with the self-doubt and self-loathing of adolescence that often results in a lot of self-imposed limitations.

When I was ten years old I was certain that when I grew up I wanted to be two things: a mom and a writer.

I became a mom in 1998 when my daughter was born.

I became a writer one year ago today when I started this blog. I only recognize that in retrospect. When I started blogging, I thought it might be a fun diversion and perhaps a helpful way to keep track of Bud's development. I could not have guessed the extent to which my fellow bloggers would inspire me, challenge me, and drive me not only in my parenting, but also in my writing. I had no idea that a year later I would think of myself as a writer; that I would be a writer.

In many ways, this realization gives me a new sense of self, and with it the grown-up blogger-mom part of me is further inspired, challenged and driven to become better and to set the bar higher.

But my inner ten-year-old is positively gleeful.

Wednesday, February 08, 2006

One of these things is not like the others

Okay, I get that Paul McCartney lost album of the year to U2. I really do. How to Dismantle an Atomic Bomb is an extraordinary album. So okay.

And I guess I can see him losing pop male vocal to Stevie Wonder. Stevie Wonder is a legend, too, and while I'd have cast my vote differently, I can see it.

But losing best pop album to Kelly Clarkson? Something is very wrong with that.

It's a big, big, mellow world

It's all peace, love and tree sloths at our house these days: Bud is a fan of the new PBS show It's a Big, Big World. This delightful show is a mix of computer animation and puppetry and stars Snook, a slow-moving tree sloth who speaks in the listless, you-do-your-thing-I'll-do-mine kind of hippie-speak that the guy down the hall in college who smoked way too much marijuana used to use.

Bud has the sort of echolalia in which he not only adopts the words in a script; he also adopts the tone, the dialect, the inflection, the cadence - everything. He's the boy of a thousand voices: he sounds Australian when he's doing the Wiggles; he can do back-and-forth high-brow British and cockney accents when the Tubbies segment calls for it; and you have to hear it for yourself to truly appreciate his rendition of Ruby the Bunny as he tries to give Daddy a make-over, complete with beehive hairdo. So it's been a lot of fun lately to watch him do his slow sloth-like shuffle around the house, sounding totally - well, to be honest - stoned.

He greets his dad at the door with a sluggish, drawn out "Heeeyyyy... you came back to hang with us!"

His grandmother gets a different, equally lethargic greeting: "Heeeyyyy, Nana... how's it going?"

But my favorite greeting came as we drove down a rural street on our way home from school and I slowed the car as we passed a group of wild turkeys. One of the turkeys was primed for mating - his head held high, his wattle a brilliant red, his chest puffed up and thrust forward, his tail feathers in full plumage. He was strutting his stuff and was clearly out to impress the ladies.

And that's when I heard from the back seat, "Heeeeeyyyyy, turkey... lookin' good!"

I laughed so hard I almost drove off the road.

So, my thanks to PBS for a very sweet new show filled with lovable characters and singable songs and, mostly, for a lot of great laughs.

Peace out, man.

Everyday magic

I woke this morning nose-to-nose with Bud, as he loudly proclaimed "The magical spell was broken, and the night turned into daytime!"

Wow.

Isn't that the way we should approach each new day? Not as drudgery. Not as a to-do list. Not even as a fresh start.

As magic.

Monday, February 06, 2006

Farewell to a friend

Clay has left school.

I don't know the story, though I'm sure there is one. It was a sudden departure - well, sudden to me, anyway. It may well have been coming for a long time. There was no time for goodbyes, though. Clay was literally at school one day and gone the next.

So there are no more high-fives in the parking lot.

No more opportunities to explore the world.

No more friendly invitations.

No more magic birthday parties.

My heart is full of prayers and good wishes for Clay, his adorable baby brother, and their wonderful mom. But, really, my heart is broken as well. Bud, on the other hand, takes a much more philosophical view on the matter. Today another boy at school was out sick, and I wondered if Bud understood the difference, so as we drove home I said, "Tim wasn't at school day."

"He's sick," Bud told me.

"And Clay is not at school anymore either. Where is Clay?"

"He's home," Bud said. "He's playing outside. He watches PBS Kids on t.v. He's happy."

I hope so, Bud. I really do hope so.

Sunday, February 05, 2006

Bud(ding) logic

I'm currently reading the book Teaching Children with Autism to Mind-Read by Patricia Howlin, Simon Baron-Cohen, and Julie Hadwin, which outlines a systematic approach to helping children on the spectrum develop "theory of mind," or perspective-taking skills.

The authors suggest that there are five levels of emotional understanding that provide the foundation for theory of mind skills: 1) recognition of facial expressions (happy, sad, angry, afraid) from photographs; 2) recognition of emotion from schematic drawings; 3) identification of situation-based emotions (the dog is chasing the boy, so the boy feels afraid); 4) desire-based emotion (if a person gets what a person wants, that person will be happy; if that person does not get the wanted thing, the person will be sad); and 5) belief-based emotion (if the person believes that the wanted thing is coming, the person will be happy; if the person believes the wanted thing is not coming, the person will be sad).

They go on to provide tools to assess a child's ability on each of the five levels, and then activities to help develop skills based on the level at which the child is assessed. Tonight I sat down with Bud and the book to give it a try. Foolishly, I started the process in the evening, when Bud was already getting sleepy and was probably ready for bed. Nonetheless, he flew through the first three levels - identified emotions in photographs and in sketches of faces, and could accurately predict emotions based on the situations provided.

I knew we were done for the day when we started Level 4. I was following the book's instructions to the letter. 1) Show the pictures. 2) Read the statement. "This child wants x. The child's dad gives him x." 3) Question for comprehension of desire: "What does the child want?" 4) Question for comprehension of emotion: "How will the child feel when dad gives him x?" 5) Question for comprehension of justification: "Why will he feel that way?"

So I opened to the first scenario - pictures of a boy by a pool, chosen because I could tell that Bud's interest was waning and I thought I could hold him a little longer because of his love of pools. I began the canned routine:

"Look at this, Bud. Ben wants to go to the pool." I pointed to the first picture.

"Yeah."

"Ben's Daddy takes him to the pool." I pointed to the second picture.

"Yeah."

"What does Ben want?" I asked pointing to the first picture.

"His flippers," Bud yawned.

Not even wrong.

Friday, February 03, 2006

Great expectations

Bud and I were running late for gymnastics class today, so by the time we arrived the others were already busy bouncing, swinging and tumbling. The class has grown a little and we've missed two weeks because of illness, so I didn't recognize the two moms who were sitting in the middle of the room engaged in an intense and animated conversation. Bud and I scurried past them and got engrossed in the balance beam and bounce house, and I forgot all about them.

A little while later, one of the moms approached me. She lives in a town near me and her son (18 months younger than Bud) will be starting Kindergarten at his school in the fall. She told me that she is staring to look into which Kindergarten teacher is "best" so that she will be able to get her son into that class, and that she was going to "push for full-day" Kindergarten (our district has half-day sessions.) She asked me if Bud was in for the full day and I told her that he isn't and that, in fact, I don't think he could handle full days of school right now. Sometimes three hours is overwhelming for him.

"My son needs full days," she said definitively. "But I probably won't get it. I never get anything that I ask for."

She pointed to the mom she had been talking to earlier. "She's an advocate. I'm going to get her card. She lives in ThisTown - that's in the best school district in the state. Our district is terrible."

"Really?" I asked.

"Oh, yeah," she said. "Her son gets xyz hours of This Specific Intervention every week. It works great for him. It would work for my son, too. I know it would. Does your son get that?"

"No, he doesn't, " I said. "I haven't asked for it. I -"

"Well I have," she said, "and they told me he doesn't need it."

"Well, I think that This Specific Intervention is not right for all kids on the -"

"Have you ever tried it?"

"No, I -"

"Yeah, our district is terrible," she said, and walked away. I got the sense that I was being dismissed as an uninformed-and-gullible-parent-being-played-by-the-system as I saw her make her way back to the advocate mom to get her contact information.

I thought about the interaction all the way home. Our district is terrible? Can that be? Am I naive and gullible? Am I nonassertive? How is it that this mom who has been dealing with "the system" for 18 fewer months is so much more certain of what her son needs, what the district will fight her on, and how she is going to make her case? Do I have low expectations? Should I be putting up a fight about... something?

Because here's the thing: an hour before we left for gymnastics, I was in a team meeting with all of the people who work with Bud at school - his teacher, the classroom aide, the inclusion coordinator, the OT, the SLP, the learning specialist. They meet every week to discuss his progress, compare notes, test hypotheses, and develop strategies. They invited me to join them - this week, and any other week - and they involved me in the discussion and listened to what I had to say. And I left feeling great.

But as I drove home from gymnastics, I replayed the team meeting and all of the other meetings and conversations I've had with these folks and I wondered, have I done what I'm supposed to do as a parent? I've never brought in a list of specific requests that I want them to meet. Have my expectations been high enough?

The more I thought about it, the clearer it became. No, I've never suggested to the team that Bud needs blahdy-blah intervention for zippidy-do hours each week. But I've communicated my expectations clearly and consistently:

I expect you to know my son.

I expect you to learn to recognize the nuances in his behavior and to take advantage of the teachable moments that the nuances provide.

I expect you to expect him to change, to grow, to learn, to become.

I expect you to delight in his humor.

I expect you to make him feel safe - safe to be himself, safe to take risks, safe to make mistakes.

I expect you to be insightful, thoughtful, and creative.

I expect you to structure his school experience in a way that builds his sense of competence and confidence.

I expect you to be flexible, to try new things, to tweak what sort-of works, to set aside what doesn't work, and to go-go-go with what works while it works but not when it stops working.

I expect you to know your stuff, to keep current, and to share what you know.

I expect you to have high expectations of Bud, and expect that you'll provide high levels of support to help him meet those expectations.

I expect you to be vigilant about not letting him manipulate you... but I expect you to be delighted inside that he has tried to.

I expect you to see his strengths and his gifts, to encourage and feed them, to help him show them to others, and to help him develop a sense of pride.

I expect you to see Bud when you look at Bud, and expect you to know that autism is just one part of who he is.

I expect you to love him, love him, love him.

The team that works with Bud meets my expectations consistently. They don't have all the answers. They don't even have all the questions. But they collaborate, and they try, and they really, really care.

So, perhaps I'm naive, perhaps I'm gullible, and perhaps our district really is terrible; all I know is that I am terribly, terribly pleased.

Wednesday, February 01, 2006

Carrying home

When I arrived to pick up Bud from school yesterday, his eyes were a bit red and puffy. Mrs. H explained that he'd been crying and that the dysregulation seemed to spiral up out of nowhere.

He'd been perseverating on one of the cards from his visual schedule, insisting on carrying it around with him. Since his visual schedule is such a critical tool for keeping his day structured (and, therefore, for keeping him regulated) it's important that Mrs. H maintain control of the cards and the board. So, she asked Bud to put the card back... and he lost it: "No, Mrs. H. That's MINE! Give it BACK!", tears, and full-body hurling that resulted in a bumped head and more wailing sobs.

In my experience, when Bud has extreme reactions like this, there is a reason. They don't typically come out of the blue.

"Which card was it?" I asked.

"It was the HOME card."

A-ha. Now we were getting somewhere. When Bud was in preschool, he used the HOME card as a regulating tool. He carried it around in his hand the way other children carry blankies. It was his own little reminder that "home" was coming - a well-earned pay-off at the end of the school day.

I explained the preschool context to Mrs. H and asked if he'd been feeling homesick or acting out of sorts.

"Not until I tried to take the card away," she said.

I could tell we were getting closer to solving the mystery, but I just couldn't see it yet. I looked at his schedule board, and the little two-inch-square pictures velcroed in a line.

"Is this a new picture or anything?" I asked, looking at the HOME card.

"Well, that wasn't the actual card he was carrying. He found a spare one on the shelf." She walked to the other side of the room and took it down to show me.

Mystery solved.

Same HOME picture.

On a THREE-inch, not two-inch square card.

Just like in preschool.

Like many people on the spectrum, Bud has a hard time generalizing from the specific. Two-inch cards belong in Kindergarten. Three-inch cards belong in preschool. He is the only person from preschool who is in Kindergarten. If a three-inch card has appeared at Kindergarten, it must be his. Not even wrong.

My hunch is that Bud recognized the HOME card as a touchstone - a regulator, a comfort-giver. We all have them. We bring our favorite music in the car when we know it's going to be a stressful day, we wear crosses or Stars of David or flaming chalices on chains around our necks, we carry pictures in our wallets of the people we hold most dear; they are the small reminders that we take with us when we leave the security of our homes. We cling to them tightly, so that whenever we need to we can remind ourselves that this moment, this place, this circumstance is not all there is.

So it's not so hard to put myself in Bud's shoes. Let's say I have a favorite picture of my family that I carry with me every day and that brings me great joy and comfort during difficult times. Then let's say that I go through a long stretch of good, untroubled times and I don't take the photo out much to look at it, and without even realizing it I lose it. Then ten months pass, and I find the photograph tucked in a dark crevice where I never expected to see it. I realize that I had forgotten all about the picture, but I experience a flood of warmth and comfort when I look at it, and I'm delighted to find it again. Just then, someone scoops it up with a stack of papers and heads for the shredder.

I have a hunch that Bud experienced that sort of panicked feeling when Mrs. H took the HOME card away.

As soon as I gave her the context, she brought the card over to Bud and suggested that he take it with him. She told him he could keep it and he didn't have to bring it back to school. He could not have been more delighted.

He carried the card with him all evening, then fell asleep with HOME curled up in his fist. And, it's no surprise: in the morning, he very happily let go of his touchstone and left HOME and home to head off for another great day at school.