Hyperlexicon

Subtype: Goofball

2012-01-25T11:29:00.001-08:00

I've been noticing that autistic characters, or characters with autistic traits, have been showing up in lots of TV shows and movies lately. Joseph Kahn at the Boston Globe noticed this too and wrote an article about it.

I like that this is happening. Autistic traits are, after all, part of the spectrum of human traits, and they deserve to be represented in a variety of ways (not just in a Hallmark Hall of Fame tragic way) and they can make for pretty interesting material for character development and interaction within a story.

But what I've noticed is that when I see autistic/Asperger's characters in popular culture, they often conform to a fairly narrow type: overly serious, fixated, unemotional, occasionally non-verbal but with amazing superpowers.

I enjoy watching Max on Parenthood, for example, but it kind of bugs me that I can't recall many - if any - episodes where I've seen him laugh, or even smile.

The Big Bang Theory's Sheldon's logical, literal, loquaciousness is great comedy material, but Sheldon himself is a pretty deadpan guy.

My favorite character with autistic traits is Abed, on NBC's Community. He's clearly an Aspergerian guy, though the show doesn't belabor a diagnosis. He's obsessed with pop culture, and given the best story lines on the show (interestingly, creator Dan Harmon discovered he himself was on the spectrum while writing for Abed) but even Abed doesn't smile or laugh much.

These characteristics aren't totally inaccurate. In fact, one of the characters I've developed for Flummox and Friends, Milo, is more serious and intense. Frankly, because it makes good fodder for the story, the interactions, and the teachable moments about flexibility and receptivity to others.

So while I applaud the trend, I think there's still opportunity to expand people's notion of what autism looks like across that oh so broad spectrum. And for me, there's something - maybe a "subtype" - missing from the current array of characters: the picture of autism that I see everyday at home with my son.

The goofball.

And when I say "goofball" I mean a kid who wants to practice spit takes at dinner, who skips everywhere he goes, who acts out Looney Tunes scenes in the aisles of the grocery store, who directs his parents in comedy sketches, who laughs his way to sleep at night thinking about funny things in his head, and rehearses the "Who's on First?" routine until he's doubled over with hiccups.

Yes, he can also be fixated, anxious, socially clueless, sometimes even emotionally unresponsive, but primarily, he is a goofball: craving laughter and fun, sometimes to the point of perseveration, to the point of his parents and friends have to ask him to put a lid on it once in a while.

And I know he's not the only one. In fact, just recently, I discovered there's a comedy group, Aspergers Are Us, comprised of a group of young Aspies.

Breaking news: autistic people have a sense of humor.

So I hope to someday see a character with autistic traits in popular culture that's more of a goofball, who will smile a little more often, laugh a little more often, and maybe even quote Daffy Duck once in a while, because that's a big part of what autism looks like to me.

It's been a good week

2011-12-09T18:43:00.001-08:00

You said "yes!"

2011-12-01T14:43:00.001-08:00

On Monday night, I watched as donations to Flummox and Friends came in one after another, pushing us closer and closer to the $30K goal. But along with all the excitement, I was, frankly, exhausted.

It's been quite an eventful fall, with this video project being just one of several things I'm juggling (though none quite as fun as this). We were $600 away from the goal and I assumed we'd hit it in the morning.

"Wake me if we go over," I told Chris, somewhat as a formality, and got in bed.

Ten minutes later, he shouted for me to get up and yes, we had gotten a donation that pushed the total to the $30,000 we needed, assuring that we could collect all of the pledges made to date.

The experience has been humbling and inspiring. Getting support from hundreds of people that don't know me or the other team members personally, but who said "yes" on the merits of the idea alone shows me that we're on to something. Something exciting.

This is a note I sent to our supporters on Monday night:

And here are a few links to articles and interviews about the project that you can check out and share with friends who might still like to donate up until December 9th.

***Just released!*** My interview with Jeremy Fuksa of The Cocktail Napkin podcast. Download audio or video versions.

Jean Winegardner's article in Washington Times Communities

Shannon Rosa's interview with me in The Thinking Person's Guide to Autism

I hope you'll follow along with our progress by liking our Facebook page, following us on Twitter, or, if you haven't already, pledging a few bucks to our Kickstarter campaign so you can receive the backer updates that we'll be sending to all of our supporters so they can watch us spend their hard earned cash making the pilot episode of Flummox and Friends.

Thanks to all of you made donations, to those who blogged and re-blogged and tweeted and re-tweeted, who cajoled and nudged your friends and family and coworkers to help make this happen.

Fist bumps all around and stay tuned!

Data visualization

2011-11-05T16:05:00.001-07:00

(Disclosure: I stole most of this post from my husband Chris' Tumblr.)

After years of resisting art and non-homework-related writing, Ben has taken to drawing in the last couple of weeks in an astonishing way. Our dining room table is now covered with sheets of paper with his drawings and he'll happily sit for up to 30 minutes at a stretch, drawing scenes of from his favorite stories and movies.

This one is my favorite. It's so revealing of how Ben's mind works. I'm glad he's found another way to express what's going on in there.

(The description and reference image is from Chris.)

Data visualization of the National Spelling Bee, as portrayed in A BOY NAMED CHARLIE BROWN.

In which color indicates the proportion of correct (green) and incorrect (red) answers given by each contestant.

Charlie Brown appears in the lower center, his face mostly green, reflecting his 2nd place ranking overall.

Walking and reading

2011-10-30T22:47:00.001-07:00

This might be my favorite picture of Ben ever. If you want to know who he is, this picture pretty much says it all.

Taken by Chris, via Instagram

3-2-1 LAUNCH!

2011-10-26T16:08:00.001-07:00

I meant to write this earlier, but I've been too busy refreshing my screen every few minutes.

Last night, we finally launched the Kickstarter campaign for Flummox and Friends and I've been giddy and transfixed watching the "Likes," the "Shares," the comments and, most of all, the donations come in.

We've raised 25% of our $30,000 goal in fewer than 24 hours.

I was thinking I'd write something profound about the power of social networks and community and putting your work out there without asking permission from the usual institutional gatekeepers...

And I was thinking I'd write something profound about why we need a show like this: a show that knows our kids are funny and smart and won't talk down to them and why that's a bigger deal than most people understand...

But to be honest, I'm just so freaking happy that so many people are saying nice things in public about this project and I'm not going to be able say anything profound.

But I can say this:

You think you have a good idea, but it sounds kind of crazy to actually try to do it.

But you do it anyway, because you can't not do it.

And you try not to think about the whole thing and how crazy it is and how hard it's going to be and how you're probably going to fail, you just finish each tiny step - whatever is - that's directly in front of you.

Send an email. Make a call. Write something. Get help from someone who knows how.

Pretty soon, you're doing it. All those steps add up to the thing.

Then when other people see it and tell you that it really is a good idea...well it's kind of unbelievable. And then, when they pitch in to help:

Also. Unbelievable.

I hope you'll help me make a smart, funny show for our smart, funny kids.

Now if you'll excuse me, I have to go back to refreshing my Facebook feed.

Fifteen years ago

2011-09-21T07:30:00.001-07:00

I normally use this space to write about parenting. But I would not be the parent I am without my co-parent, my husband Chris.

Fifteen years ago today we were married. The vows we took said:

In times of triumph, joy, and laughter,

I will be with you.

In times of hardship, loss, and heartbreak,

I will be with you.

In all the in-between times, days that quietly slip by,

I will be with you.

And as the years unfold, as our lives stretch out ahead of us,

I will be with you.

As you are now, and as you are becoming,

I will be with you,

and I will love you, simply, and with all my heart.

I wanted to revisit those vows so many years and life changes later, and share them here - as an encore presentation, a second public acknowledgement of what we promised.

But I'm not very good at grand, romantic gestures. The fact that I needed Chris' help to find, access and convert the fifteen year old Word file we used to create the script for our ceremony pretty much undermined any last shred of off-the-feet-sweeping.

It's fitting, I guess, because that's marriage, too. The vows are there for the times that aren't fun or glamorous or romantic.

So for our fifteenth anniversary, I am proposing a few amendments to our vows that are inspired by the real world of marriage, family, change, learning, and love that goes on.

On the way to the emergency room at 2 a.m.,

I will be with you.

When another major appliance breaks down,

I will be with you.

When we both decide to change careers in the middle of a major economic downturn,

I will be with you.

When the only way to get through the weekend is to nap in shifts,

I will be with you.

When we feel like there's no freaking way we can act out the "finding the golden ticket" scene from Charlie and the Chocolate Factory one more damn time,

I will be with you.

When we step back and feel proud of what we can do together,

I will be with you.

And I will love you simply, with all my heart.

Happy Anniversary.

From Firefly to Flummoxed

2011-08-31T12:08:00.001-07:00

Many months ago, I wrote about a project I was starting called Firefly and Friends, a pilot for a children's video series that teaches social skills.

Although I haven't written much about it lately, I - along with Jordan Sadler and Liesl Wenzke Hartmann and a small-but-growing team of independent artists - have been slowly but surely moving the project along.

We discovered last January that Firefly and Friends isn't a viable name for trademark. So, after a quick lap around all the stages of grief, we got help from a team of real-life naming professionals led by uber-namer Matt Gordon, husband of Firefly co-creator Jordan Sadler.

And that process led to our new name, (drum roll) Flummox and Friends!

We decided to use the name change as an opportunity to re-brand the show, so for the last several months, we've all been behind the curtain working away. I thought I'd let Hyperlexicon readers take a peek:

1. We're designing a new logo and website.

2. We're planning a fundraising campaign that will appear on Kickstarter.

3. We're casting the actors who will appear in the pilot.

4. We're shooting the "pitch" video that will support our fundraising campaign.

We hope to unveil the new Flummox and Friends site and start our fundraising campaign this fall, so STAY TUNED for more updates as we get closer to the big launch.

Free to be...boys.

2011-07-18T12:54:00.001-07:00

Remember Free to Be You and Me? The record album and book, created in 1972 by the Ms. Foundation for Women, was a collection of stories and songs designed to show boys and girls that they could break free of traditional gender expectations.

Rosie Greer reassured us that it's all right for boys - even NFL stars - to cry. Alan Alda taught us that sometimes boys want to play with dolls. And Marlo Thomas sang about how Mommies can actually hold down a job.

It was the old switcheroo technique. Supply kids with narratives that completely reversed traditional gender expectations in order to blow their minds and set them free. Encourage girls to be more like boys. Encourage boys to be more like girls. Stir well and liberate.

The "swim against the stream" message of Free to Be You and Me was pretty groundbreaking at the time, when images of gender in kids' books and popular culture stuck to the narratives we roll our knowing, liberal eyes at today.

But 40 years later (Wait. Forty? Are you kidding me?), Ben doesn't have to be convinced by a folk-pop soundtrack that girls can be strong. He sees plenty of female characters wielding swords, braving monsters, saving the day and their male counterparts. He sees men expressing emotion and tenderness, in pop culture and in his life.

And now Free to Be's approach of making boys better by making them more like girls seems, well, quaint.

Phil Weglarz thought so too. He's a therapist here in the Bay Area with an interest in using creativity and play in his work with kids.

Playing with his nephews, shooting homemade remakes of Star Wars movies, made him think about the positive aspects of the forms of expression to which many boys are drawn.

They like to explore power relationships in black and white/good and evil terms. They like dramatic action with elements of danger, aggression, and destruction. Sometimes, things are dark and scary, or loud and chaotic. And some research suggests that boys actually benefit - developmentally - from this type of play.

He also saw that in many children's arts and drama programs, these narratives were viewed by the often female, Free to Be-influenced instructors as disruptive and unhealthy. For a boy to "express himself" and "be creative" was great as long as it was "nice."

Phil wanted to create a program that would allow boys to express themselves through the stories and ideas that interested them, and where he, as a teacher and therapist, could funnel those impulses into fostering self-confidence, cooperation, teamwork, respect for differences.

So he created Active Imagination camps and workshops. Ben's been participating now for several months and just finished Phil's first summer camp.

It's a perfect fit for boys who love imaginative play, who might not be as into team sports as some of their peers, or whose creative expression needs a little more latitude than formal music and arts programs sometimes allow.

And I think you will not be surprised when I tell you that lots of the boys are on the quirky side.

In the Active Imagination program, boys learn about restraint and self-control while they stage mock battles, they learn about their bodies and their breath as they do yoga in preparation for their transformation into superheroes, they learn about collaboration and cooperation as they make movies about defeating villains.

It's a place where they can feel safe being their own unique selves, wherever they happen to land on the continuum of gender - or neurological - expression.

"Every boy in this land grows to be his own man..."

And that's exactly what Free to You and Me was all about in the first place.

One of the AWESOME videos from Active Imagination Camp for Boys. Ben is the one in the red kimono and the snorkeling mask.

Leaving your kid in the woods (a.k.a Summer Camp)

2011-06-21T17:54:00.001-07:00

At seven and a half, Ben has now aged out of the familiar, comfortable, low-maintenance options for summer camp he's enjoyed since preschool.

So this year, like most other working parents in our area, I researched the hundreds of different nearby day camps, read parent recommendations online, compiled - I kid you not - a spreadsheet of options by week, sent in my forms and crossed my fingers that we'd be okay.

Ben is an in-between kind of kid when it comes to summer camps. In the past, we haven't enrolled him in summer school through his special education program or camps designed specifically for kids with special needs. But we can't simply drop him off at a local rec center and expect things to go well.

We're starting our summer with a couple weeks at a nearby outdoor science camp with rave reviews and a reputation for a quirk-friendly environment.

As the first day approached, I tried to prepare Ben, to let him know what to expect. He was nonplussed. "I know, I know..." he told me, exasperated, using his latest tactic to end conversations.

He happily got in the car the first day. No sign of anxiety or reservation. He walked down the path to the clearing where the campers gather in their groups.

His group's counselor was a very nice college student who mentioned she likes to paint rocks.

Now, I should admit that I've developed a bias against nice, quiet, artistic young teachers over the years. They don't tend to make an impression with Ben. He responds better to someone funny or dramatic or a little in-your-face. Plus, she hadn't read the tip sheet we sent with our forms: the "instruction manual" for Ben we prepare for any new teacher. I started to get worried.

None of the kids in his group were particularly gregarious or outgoing. But they were the normal kind of kids, who, when an adult says sit on the bench and color your name tag with a marker, they sit on a bench and color their name tag with a marker.

Ben, not being that normal kind of kid, roamed around the clearing, silently picked at pieces of bark, and investigated the details of a chain link fence. He wasn't distressed, but also not enthusiastic.

"Why don't you go sit with your group and make a new friend?" I suggested.

"I can't. I can't make a friend." He didn't sound discouraged or sad or lacking self-esteem. He said it as if he was simply stating a fact.

"Do you think you're going to be okay?" I asked, more for me than for him.

"Yup." he replied stoically.

I decided it was time to go. He didn't protest, but as I walked back down the path, he ran after me. "Promise you'll pick me up?" he asked.

Then he watched me go with his hand raised in a somber goodbye, a moment I knew he was re-enacting from the final scene of Disney's Pocahontas, where the brave Indian maid watches from a cliff as John Smith's ship returns to England.

And then I got in the car and cried because I had just left my kid in the woods with a bunch of people neither of us had ever seen before.

I tried to keep busy and ignore the gnawing, burning feeling in my stomach. I clutched my phone like a talisman all day, waiting for the call where the director nervously and euphemistically tells me that "he's been having some trouble," and that I "might want to come and get him."

The call never came, and eventually it was time to pick him up.

He ran up the path to greet me. "Camp! Was! Great!"

The nice, rock-painting counselor agreed he'd had a good day. Maybe she didn't need the tip sheet after all.

"Did you make any new friends?"

"Yes."

"What are their names?"

"I don't remember. Never mind that. Let's pretend we're in an airplane and..."

And on the way to the car, he settled into the comforting mode of improvised storytelling and recitation. His version of Miller Time.

Later, I asked him why he never opened his lunch box.

"I'm sorry I didn't eat lunch, but I was too bored."

"Bored? Do you mean you were too nervous to eat lunch?"

"Yes."

Camp was great. He was bored. He was nervous. He couldn't make a friend. He did make a friend.

It's all true. It's possible for him to be okay being dropped off in an unfamiliar setting, for him to not like it, but to do it anyway.

There's room for all of these things to exist at once, perhaps because his psyche is spacious enough to hold these contradictions comfortably, even when mine is not.

Here's hoping your summer is spacious enough to hold lots of things at once.

And here I thought it had something to do with having hair and bearing live young.

Independence

2011-06-06T16:16:00.001-07:00

Occasionally, I've been letting Ben walk home by himself for the last three blocks of our drive from school. It started when we stopped off to mail a letter and Ben announced that he knew the way home from there and asked if he could walk.

I suggested a compromise: that I would let him out on our corner so he could walk up the hill by himself. But the next time we stopped at the mailbox, he insisted he could walk the whole way by himself.

I surprised myself by letting him do it.

Two of those three blocks are along a fairly busy downhill street. He has to cross one intersection, watching behind him for turning traffic. I drive as slowly as I can and am never very far out of sight. He runs most of the way, with a grin that signals his excitement of being independent.

Each time I've done this, I have a moment of panic. "Is this really a good idea? Is it dangerous? Is this street too busy? God, what have I done?"

The last time, along the way, he struck up a conversation with a utility crew and gave me a report on what they were doing when we met up back at home. We're they charmed by his outgoing curiosity or were they were thinking, "Where the hell is this kid's parent?"

In the end, the idea of Ben developing independence, being able to walk three familiar blocks, seems more important than my second-guessing and feelings of panic.

I need to know that someday he'll be able to get places, take a bus, look at a campus map and leave enough time to get to his class, find the address of a job interview, use good judgement, keep himself safe.

And I'm never NOT going to panic, so that criterion is pretty useless.

It makes me think of the books of Ezra Jack Keats. I've written before about the special place "A Snowy Day" has for us. In the world of these books, Peter and his friends rove around their urban neighborhood, run errands to the store, experience a new snowfall, mail a letter, explore a vacant lot, all without adult interference.

And it makes me nostalgic for my own very comparatively free range childhood of biking and swimming and just doing nothing in particular without direct adult supervision.

I've come to terms with the fact that Ben will spend his childhood being chauffeured more often than roaming free. But when he wants to walk three blocks, or do that next thing that's totally reasonable but scares me anyway, I'll try to let him. And I'll try not to panic.

And I'll probably panic.

Honesty

2011-05-14T09:22:00.001-07:00

Me: (singing)

Ben: Stop singing.

Me: That's a little bossy. Besides, I like it when you sing.

Ben: Your singing annoys me.

Me: (Attempting to create a teachable moment) That hurts my feelings.

Ben: (Reassuringly) Well, I didn't say that your singing REALLY annoys me.

Seven Years Old

2011-01-21T07:15:00.001-08:00

Today you are seven years old. One of the big kids now.

But you're far from turning jaded or sullen. Not you.

Your primary mode of transport is skipping. You sing your heart out, just for your own entertainment, without a drop of self-consciousness.

You are almost always in the midst of improvising an action adventure movie or a comedy skit.

"This is the part where we're running away and the cave is collapsing and there's going to be an avalanche. Ready? Ahhhhhhhhh!!!!!"

"Mommy, I'll take a drink and then you tell me something surprising and then I'll spit it out. Okay! Go!"

When, occasionally, you can't find the words for something, you come up with your own, infinitely more interesting, way to say it.

"Do you want to know why I didn't finish my breakfast? My food microbes are not at 100 percent."

_______

You know all your math facts and frequently correct adults' grammar, yet you still seem to enjoy school, thanks to a teacher who (most of the time) lets you sneak away to the bookshelf when your classmates are parsing "the cat sat on the mat" and asks you to read aloud to the class while she needs some time to prep.

The kids in your first grade class seem to like your charisma (that we adults call "bossiness"), your boldness (that we adults label "tactlessness"), your array of movie quotes for any situation. More than one boy has boasted to me at pick up time,"Ben is my best friend."

________

You're starting to ask yourself the Big Questions. Sometimes, you take out the kids' bible we bought you and you study it for a long time - the stories of kings and battles, angels and miracles. You rarely want to talk about it with me, except the occasional question that tells me you are grappling with these mysterious stories in your own way.

"Mommy, why were people so mean in Noah's time?"

"Did these things actually happen?"

I know that you've inherited my skill for imagining the catastrophic. You worry about things going wrong, about losing control of yourself. You invent worst-case-scenarios that hook themselves into your brain.

"Mommy, what will happen if I go to a play and I shout a grown-up word so loud that the actors hear me and the actor comes off the stage and yells at me?"

Sometimes, you're afraid of making mistakes, of not being perfect. And sometimes, you need the people around you to be perfect, too.

Despite this, you are learning that most of the time it's better to say "Oh well." or "I'll be okay." than come apart. And every day that gets a little easier.

__________

And most days you have a smile on your face when you get up in the morning and a smile on your face as you get into your bed at night. Usually, because you're recalling something funny from a book or a movie or your own imagination.

You already have so much of what you'll need in this life.

You already have so much of what I wish for you.

Intelligence, creativity, compassion and most of all, joy.

Happy birthday to my big kid, my sweet boy.

Making comic strips

2011-01-18T16:23:00.001-08:00

We've been having a lot of fun lately using the Make Beliefs Comix online comic generator.

It lets you create three-panel comic strips with a variety of different characters and standard comic strip elements. The interface is a little clunky, especially if you're familiar with any other kind of drawing software (or have an iPad), so Ben acts as the creative director and I do the actual manipulation.

Using this tool has helped me see how facile Ben is with the visual and narrative conventions of comics, even though he can't draw very well himself. He comes up with the storyline, the characters, and the dialog on his own and knows exactly how to insert storytelling devices such as using "meanwhile" to indicate a parallel plot development, or foreshadowing events by showing characters lurking in the background.

Since the tool includes several different emotional states for the different characters, this might be a fun way to have kids create their own social stories or experiment with cause and effect. The three panel design could also be useful for helping younger kids with basic sequencing.

And because Ben and I do this as a collaborative activity, there's lots of opportunity for spontaneous conversation and give and take.

Ben especially likes to print out the panels and assemble them into entire pages. He gets a much more "finished" end product than he can draw himself and it's helping him learn that he can channel his storytelling abilities to create permanent artifacts, not just in-the-moment imaginary play scenarios.

Try it out next time you're looking for a rainy day activity.

"Monkey" and "Other Monkey"

2011-01-16T21:03:00.001-08:00

I'm not the only one who records bits and pieces of our quirky life. I implore you to read Chris' piece about Ben's longtime companions, Monkey and Other Monkey. Find it here, on his outstanding Tumblr page.

We felt odd naming it, even though the boy couldn’t speak to give it a name of his own, so in time “Monkey” stuck.

We wound up ordering two additional monkeys, first Backup Monkey, who was called upon when Monkey was pooped and/or barfed on.

Backup Monkey disappeared not long after he arrived, misplaced in the home of the woman who cared for the boy during the day, and was never seen again.

Then we ordered Auxiliary Backup Monkey, who we left in a drawer too long. By the time he was called into service (Pretty sure, barf that time.), Original Monkey had already been worn down enough that the boy could tell that this softer, shinier wasn’t the same.

READ IT ALL

Collections

2011-01-12T14:16:00.001-08:00

It's all about collections right now.

Ben is constantly inventing and describing and assembling collections of books, collections of DVDs, collections of video games.

Thanks to the marketers who know that bundling products together is the best way to get customers to spend a little more than they were planning in the first place, he's become fascinated by things like the pamphlets that come in DVD packaging or promotional cards tucked into magazines or the "Also by this author" lists on the back covers of books.

The idea of creating or completing a collection must feel so satisfying, so compelling, for someone who is, like Ben, both a pattern-seeker and completist.

Every time I come around a corner these days, I seem to encounter a neatly laid out grid of DVDs or books, arranged into a collection: in the middle of the living room floor, the hallway, on the sofa.

He now asks for books and DVDs based on how they would enable him to complete a collection rather than an interest in the content.

And he invents his own collections. Several times a day we have a conversation like this one:

"Mommy, have you ever heard of the 3 DVD set called The Dr. Seuss Complete Collection?"

(I take the bait) "No, I haven't. Tell me about it."

"On Volume 1, it has Green Eggs and Ham, The Cat and the Cat, The Cat in the Hat Comes Back..." (He lists five or six, or ten or twelve more titles, organized into volumes.)

"Wow! That sounds like a great collection!"

"And... have you heard of the Dr. Seuss Complete BEGINNER'S Collection with special BONUS FEATURES?"

And we continue like this for some time. He enthusiastically pitches and I ooh and ahh and say, "Tell me more!" as if on the set of our own QVC show.

Sometimes, from another room, I'll hear him in his announcer voice burst out with: COMING SOON TO OWN ON DVD, THE GREATEST DISNEY BLUE RAY COLLECTION OF ALL TIME!

If only the copywriters who slave away on package copy or voiceover scripts for video trailers knew how much he appreciates, and believes, their tired hyperbole. If only they knew what a devotee they have in a hyperlexic, echolalic child.

Hyperlexia Revisited - part 3: lost in books

2010-12-30T16:25:00.001-08:00

This is the third in a series of posts where I attempt to provide a snap shot of hyperlexia beyond the "my toddler can read" stage. I want to describe some of the ways that hyperlexia might manifest in addition to early reading.

Previously, I wrote about how Ben's linguistic sophistication coexists with a lack of social sophistication. In other words: language is easy, conversation is hard.

I also wrote about The joy of text: the fascinating ways that Ben's brain seemed specially tuned to language and text.
_________

I remember being in a restaurant when Ben was about three years old. As we ate our meal, Ben sat at the table with a stack of books, content to read quietly. A mom at a nearby table, with a boy of similar age, looked over at him and said to me, "You're SO lucky! I wish mine would sit still like that!"

I acknowledged her comment with some humor, and managed to resist chirping back, "And I wish I could get mine to talk to me!"

Seeing a child engrossed in a book probably ranks second only to watching a child sleep when it comes to the Precious Moment Index, so it's difficult to describe how something that so many parents work very hard to promote, to cultivate, to make into a habit can be - at times - the source of a dilemma.

For Ben, books function a little like a transitional object. Typical transitional objects tend to be pacifiers or security blankets or a favorite, essential stuffed toy: things that offer comfort and reassurance. Individuals on the spectrum may not outgrow the need for a transitional object as they exit toddlerhood the way most children do.

Like other transitional objects, books seem to be healing, regulating, distracting, enveloping and calming.

But they also can be the source of perseveration.

When Ben is engrossed in a book, it's nearly impossible to get his attention by speaking to him. Sometimes even a tap on the shoulder will not be sufficient to break his concentration.

When I manage to get him to look up, he usually does for a moment, until his head is pulled downward again by what appears to be an invisible magnetic force that is beyond his control. It's not that he's ignoring me, it's like he's really trying to look at me but can't.

I gently try to lift his chin sometimes. Again, after a moment of eye contact, the force pushes against my fingers and pulls his eyes and face back to the book. It is not a stubborn act of rebellion or willfulness. It just seems he cannot stop his eyes from returning to the page.

Occasionally, when I try to gently shut the book, he forces it back open, pleading, "Wait, wait, wait, wait!" as if I'm taking away an oxygen machine.

The best way to get his attention when he's reading is for me to lean down and cover the entire page with my forearm or place another object over the page. Not subtle, but effective.

The real dilemma with the book-as-transtional-object situation is that books have become a survival tool rather than a choice.

Because reading is such a socially acceptable activity, I've been happy to let Ben use books to his heart's content to survive restaurant meals, our dinners with adult friends, and other social events that I know won't hold his attention for long. Our bags and backseats are stocked with books we can pull out to delay, distract and disarm whenever needed. They've made our life easier.

But probably as a result, Ben is barely able to sit at a meal without a book. He paces, he squirms, he asks to be excused as soon as he's had two or three bites of food.

Give him a book, on the other hand, and he'll happily sit through a long dinner and clean his plate.

I'm not making much headway with this because I tend to choose nutrition over therapy when dinnertime rolls around, but we have attempted a "no books for the first ten minutes of dinner" project with limited consistency and success.

Which makes me wonder if I'm equally dependent on books - on Ben using a book as a transitional object - as a way of easing the day-to-day, moment-to-moment difficulty and uncertainty.

When a child gives up the pacifier, isn't it really the parent and the child giving it up together?

___________

What about you? Are you ever ambivalent about your hyperlexic child's dependence on books to get through or get out of certain situations? Would your child rather read than face the hostile environs of the dinner table? And how many books are in the backseat of your car right now?

Our assumptions, their agenda

2010-11-12T09:56:00.001-08:00

I should be working right now, or at least working on the draft of the third in my Revisiting Hyperlexia series. (It's coming, eventually. I promise.)

But I saw this video courtesy of one of my parenting (and life) role models, Shannon, and I felt compelled to drop what I was doing and share it with you.

It reminds me of how easy it is to make assumptions about our kids' behavior without stopping to try to see it from their point of view. Sometimes, what they do makes no sense to us, or looks odd, or even appears manipulative or defiant, maybe, in the case of the video, disturbing.

If we stop to ask them (or try to read their cues if they can't tell us with words), "What are you trying to do?" or "What do you want to happen right now?" we often find out their agenda is rational, even creative or enterprising.

I remember a time several years ago before Ben had very much language when he was eating crackers. I cut him off after what I judged to be enough. He reached and struggled for the box, yowling, "Box! Box! Box!"

"No more crackers." I said holding my limit-setting ground.

Frustration and its attendant trappings ensued, until he finally got the box and started reading the copy on the back.

He just wanted to read the box.

I think of that moment often, usually when I find myself, for example, feeling impatient with his close-up investigations of unusual sidewalk features or his frequent de-contextualized experimentation with Bugs Bunny-inspired 1940's slang, inappropriate for a first grade classroom.

He's a curious boy, with lots of ideas. He absorbs more than he can process. His feelings sometimes overwhelm him. He isn't at all concerned with the idea of "fitting in."

And usually, he's not pushing a limit. He just wants to read the box.

Hyperlexia revisited - part 2: The joy of text

2010-10-02T15:14:00.001-07:00

This is the second in a series of posts where I attempt to provide a snap shot of hyperlexia beyond the "my toddler can read" stage. I want to describe some of the ways that hyperlexia might manifest in ways other than early reading.

Previously, I wrote about how Ben's linguistic sophistication coexists with a lack of social sophistication. In other words: language is easy, conversation is hard.

Part 2: The joy of text

Ben's brain seems optimized to interact with text. He is often noticing different fonts and unusual lettering. He's wondered out loud, for example why there are two kinds of lower case "a"s. (Single-storey versus a double-storey a, in case you were curious.) And even though he has some fine motor delays and handwriting is hard for him, he painstakingly draws his letters, experimenting with different styles.

He spots typos and editorial inconsistencies like a seasoned copy editor. A few nights ago he casually pointed out, looking at the name of a villain in a Batman book, "It's 'The Scarecrow' on this page and 'Scarecrow' on that page." If there's a typo in the copy on toy packaging - you'd be surprised how often there is - Ben will spot it.

Occasionally, I'll type while he dictates an improvised story, and he will look over my shoulder, correcting any mistyped words or even suggesting improved punctuation.

Once, a few days after I typed a dictated story for him and printed it out, he wanted to go back and change it very slightly. He described the change he wanted to make without looking at the printed story and it was clear he had remembered the text exactly and planned the edit in his head.

His relationship to text is more than analytical. It's emotional, too. He experiences pure delight at unexpected or unusual words or letters. When we visited the main branch of the Berkeley Public Library for the first time recently, he laughed on and on about the Roman-style lettering carved into the cornerstone of the building, even pointing it out to a passerby so they could share in his delight:

We still refer to it as the Berkeley Puh-vib-lic Library.

Of course, I don't expect that Ben's characteristics are universal for every hyperlexic kid at six or seven years old. But the literature that's out there now often focuses so much on toddlers and not enough on older kids. What are your observations of your older child or yourself if you're an adult with hyperlexia?

Hyperlexia Revisited - part 1: Language is easy, conversation is hard

2010-09-28T21:08:00.001-07:00

Since I started writing about Ben, I've been fortunate that so many parents have reached out and shared their own stories with me. Many stories follow a now-familiar pattern: our toddler was reading and we assumed he was gifted, but then he went to preschool and they told us he was autistic.

Though the word "hyperlexia" suggests the condition is simply an overabundance of ability, there's a bit more to it than that.

In reality, it means that a normal ability - reading - develops before the necessary cognitive foundation for reading is laid: the ability to make meaning, to understand context and perspective, to use language to communicate. And the absence or delayed development of these abilities is part of what distinguishes the autistic brain.

Which is one reason why most hyperlexic kids hang out somewhere on the autism spectrum.

So sometimes it feels like hyperlexia is a really delicious entree that comes with a side dish you didn't order. And you can't tell the kitchen to hold the side dish, and there are no substitutions.

I've been revisiting these ideas about the nature of hyperlexia recently for a couple reasons. One is that I recently read an excellent piece by lingusit Aya Katz that gives one of the best explanations of hyperlexia I've come across.

And Ben started first grade.

In first grade, it's not unusual to find your garden-variety socially-typical early readers. What will it mean for Ben to be hyperlexic when his ability to read is no longer a difference? And what happens now that Ben's reading comprehension has caught up with his reading ability?*

Does hyperlexia simply go away or become absorbed into an autism spectrum condition?

I'm going to attempt a series of posts that capture a bit about what hyperlexia looks like now, at six going on seven, because I think it continues to shape how Ben thinks and learns and interacts with the world in unique ways that go beyond the usual "early reading" definition.

Part 1: Linguistic sophistication without social sophistication

If language were music, Ben would be a music theorist, not a performer.

He seems to have a natural sense of the structure of language, the rules, the variations and patterns. He loves language as a thing unto itself, not necessarily as a means to an end.

He recently read a book to me and changed every verb from present to past tense without a single error. "I'm not going to say the Ss," he announced before starting. "I'm just going to say what people did." I remember that he did this once before. When he was 3.

He correctly uses advanced grammatical constructions like "neither/nor" in a sentence. He stops himself and restarts a sentence again and again until he knows he has the grammar just right.

But ask him a simple question: Ben, do you want a banana in your lunchbox today? And more often than not, I get a blank stare until I ask the question several more times.

He's great a greetings and conversation openers because those can be learned, memorized, but like anyone learning a foreign language, once the other person starts talking, pat words and phrases won't help: you need to think on your feet and invent language in the moment, make assumptions, inferences, know which of the 5 different meanings the speaker is using and respond all without missing a beat.

It's really a wonder that any of us can carry on a conversation.

I've started a game at dinner where we each have a pile of pennies and we put them in a dish each time we take conversational turn. When all the pennies are gone, he can bring a book to the table. It went well for the first couple nights.

But tonight he dumped all his pennies in the bowl at once and announced, "I'll just say a bunch of boring junk sentences."

Language is easy. Conversation is hard.

___________

*A significant gap between decoding ability and reading comprehension is one of the primary diagnostic criteria for hyperlexia.

Introducing: Firefly and Friends

2010-08-09T15:47:00.001-07:00

I've written a bit about how Ben connects so strongly to, and learns so readily from videos, movies and TV shows.

He doesn't so much watch videos; he studies them, turns on captions so he can read the dialogue, memorizes scenes and acts them out, mashes up the stories and characters into his own creations, and eventually generalizes the ideas into everyday life. After writing about it, I heard from other parents there are plenty of kids out there who do the same thing.

I found myself thinking, "Someone should take the shows Ben loves and learns by heart and fill them full of social thinking content. That would be a great idea for a children's television show."

After all, it would probably appeal to families with kids who aren't even on the spectrum. I've been in more than a dozen conversations with friends who have typically developing kids and when I tell them about the social skills group Ben attends they ask, "Why can't MY kid get that?"

This idea would not let go of me.

Pretty soon, I had written a decent treatment for a show that I was going to somehow convince someone else to make.

Chris informed me that I was, in fact, making the show, as much as I might protest that I couldn't possibly do it.

And while it seemed crazy it didn't seem entirely impossible. I've developed scripts for educational videos and online content and written a children's television show in college that won a College Emmy award (okay, that was 20 years ago). On top of that, I thought about the amazing people in my network who work in film and video, as animators, musicians and performers who might be willing to help get something off the ground.

Chris encouraged me to just write, come up with something awesome, and worry about the details later. So I did. Then I quietly and nervously sent it to Jordan Sadler and Lisel Wenzke Hartmann of Communication Therapy to see what they thought, from the point of view of a practitioners. I was thrilled when they liked it so much they said they wanted to work on it with me.

So now we have an official project that's taking shape and gathering steam:

Firefly and Friends, a series of videos designed to teach social smarts to kids ages 6-10 using humor, story and music.

Think of it as The Electric Company for the bright-but-quirky set.

Our goal is to write and produce one pilot episode that we can use to convince a sponsor or production partner to fund an entire series. At some point, I'll ask you to kick in a few bucks to help us do this, but not right now.

In the mean time, please check out the website and follow our blog to keep tabs on our progress. Share the link with people you think might be excited to know that we're doing this*.

And please comment and let me know what you think: Do you have potential Firefly and Friends viewers in your family? Would you buy a DVD like this? Educators, would you use this in your classroom?

Firefly and Friends is a bit of a long shot, maybe even a big long shot. But for the moment I'm trying to ignore that fact and just keep working bit by bit as if it's really going to happen.

Maybe, with your help, it will.

____________

* Especially if those people happen to include any experienced video producers located in the Bay Area. Or rich people. Very, very rich people.

Getting it

2010-08-06T11:52:00.001-07:00

Today's post on The Thinking Person's Guide to Autism, How Do People React When They Learn Your Child Has Special Needs? by Emily Willingham is terrific and I suggest you read it.

When she writes about how it feels to meet professionals and other parents of children on the spectrum who "get it," I was reminded of an experience I had two years ago when I crashed the BlogHer conference in San Francisco, where a then-new friend of mine, Susan Etlinger, was moderating a panel of special needs parents who blog.

After the panel, I accompanied a group of women from the panel and others out to dinner in Chinatown. All of them were parents to kids with special needs or professionals who worked with that population.

I hadn't met any of them before, except Susan, but I remember thinking how easy the conversation was, how it felt I had known these women for years, how grateful I was for being people that didn't need much of an explanation of my kid or our life and how I could just get to the really funny and interesting bits right off the bat.

And mostly I felt really fortunate that these women, who obviously had all been close friends for years and years, invited me - a random newcomer - to join them at dinner. I wrote about it at the time, referring to them as My New Old Friends.

Only much later did I find out that the group was not a bunch of longtime friends (well, a few were) but that many in the group had only just met in person for the first time at that conference.

And that's the thing about finding people who share your story or some important thread of it. There's no audition process, there's no probationary period where you have to prove yourself worthy, there's no casual acquaintance stage.

You're in. You're with us. We get you. As Emily says, "We get it."

I'm thinking a lot about those women this week and others to whom I feel close from our online connections because many of them are convening again and BlogHer in New York right now. I wish I were there to tell them all in person how much they mean to me, but a solo trip was neither in our plans nor in our budget this year.

I know that in their group this week, at their gatherings and at their table, there will be no newcomers and everyone is a longtime friend, even if they are meeting for the very first time.

What's new?

2010-08-01T19:34:00.001-07:00

Hello? Is this on? Hello?

Regular readers may have noticed posts have slowed to a drip lately. But that doesn't mean that our lives are uneventful.

Ben finished Kindergarten and is now, in the parlance of his schoolmates, "a grader." The year ended with, among other things, a tearful goodbye between him and his amazing aide who (sniff) is leaving next year to complete her master's degree. She cried and hugged him. Ben wiped away her tears and told her, "I love you."

He's running with the NTs this summer at his former Montessori school with several kids he knew from preschool. When he arrived, they actually jostled and shoved each other out of the way in order to be the first to hug him. The staff have all remarked on how much he's grown, matured and mellowed out since they saw him last summer.

Not every moment is rosy, of course. I could have done without the 3 a.m. visit to the ER with croup, for starters. But there have been way more ups than downs and no classic summer regression and that's pretty damn good.

There's a small group of parents-writers-advocates extraordinaire that I've had the great fortune to get to know over the past couple of years who have started a blog and book project called The Thinking Person's Guide to Autism. They're publishing amazing essays and no-nonsense resources - a new one every weekday! - and I'm honored to have a guest post on their site. I've written about the joys and complications of having a child who "passes" for typical.

Over the last several months, my focus has shifted from blogging to a project that's in the early stages: something I promise to write about very soon.

It's a leap of faith, inspired by the mindset that is captured in this post by Dave Holmes that I found via my Twitter feed (where people you hardly know point you to great content from people you don't know at all!) He nicely nails the necessity of being aggressive with your big ideas, even if it seems crazy. And this is a mindset that's quite foreign to me at this stage in my life.

Pretend you’re giving it all up and going back to school in a year. Act like you have one year to make it work before you give up and try something else. What haven’t you done? Where aren’t you being aggressive enough? Go do it and embarrass yourself with your pushiness- after all, you’ll be doing something else in a year anyway, so who cares what people think? Push until you feel uncomfortable, and then double it.

The trick is: when you do that, good things start happening right away, and you get yourself to a point where you can’t imagine giving up, one year from now or ever.

Good things are happening. Stay tuned.

One of the guys

2010-07-14T11:56:00.001-07:00

Several families from Ben's kindergarten class and his teacher got together last weekend for a summer play date at a nearby park.

One of the boys brought a football and instigated a six-year-old's version of touch football. This consists mostly of running and chasing each other while someone holds the ball. They also spent quite a bit of time in a huddle, the purpose of which seemed to be to come to consensus on a team name.

One of the boy's dads joined in, throwing perfect spirals a gazillion feet in the air while all the boys waited to try to catch the ball. Then, they ran and chased the ball carrier with wild glee and shouted for the dad to do it again. And again. And again.

Ben was right there with them, in the mix, one of the guys.

I'm treasuring these moments, and especially these other boys, who for the time being, accept him so fully and unreservedly as one of their pack.

(Ben is the one in the brown shirt and the denim shorts and the Red Sox cap. Simmer down, Yankees fans. He picked it for the B.)

Using the force

2010-06-29T10:32:00.001-07:00

Back in March, we had Ben's yearly IEP review. His team agreed that he was doing well on all of his goals. He was working above grade level academically and didn't require any curriculum adaptations or academic support. We agreed that he no longer needed occupational therapy since his handwriting had progressed to the typical level for a kindergardener. He was doing well in his social skills group, demonstrating an understanding of social thinking concepts and starting to generalize them to other settings.

But there was one blemish on an otherwise stellar report. Ben was having a hard time controlling his emotions, and when anxious or upset, he had a tendency to bolt from the classroom, shout inappropriately, or hit classmates and even adults. This was happening, at the time, an average of once per day.

We needed to come up with a way to help him and his team suggested we create some type of incentive system specific to Ben, separate from the existing stars and stickers that the teacher was already using for the class.

An incentive system seemed like a good idea since he had responded well to a system we created at home in which he receives wooden beads in a jar for good behavior and loses beads for poor choices. He collects the beads and trades them in (according to an improvised currency exchange rate set by me and Chris) for new DVDs and other in-demand items.

So after thinking through several different possibilities, we came up with The Light Saber Chart.

The light saber chart - inspired by Ben's devotion to Star Wars mythology - is a daily chart on a narrow sheet of paper with a light saber for each period of the school day. The top features a picture of Yoda, with the quote, "A Jedi uses the force for knowledge and for defense, never for attack."

The bottom of the chart describes what it means for Ben to "use the force." He has to 1) keep hands, feet and other objects to himself 2) stay in the classroom with his classmates 3) ignore kids who are bothering him.

If he used the force during a period of the school day, his aide would circle a light saber. If he wasn't able to use the force: no light saber. But - and this was important to us - he had several more chances during the day to succeed. We didn't want an all-or-nothing system, for fear he would give up if he, for example, had a bad morning.

The connection to the Star Wars stories and the frequent positive reinforcement worked wonders. Pretty soon, he was coming home each day and pulling his chart out of his backpack to boast about his 6-light saber day.

"Mommy, guess what! I used the force today SIX TIMES!!!"

These kinds of days at school translated into beads in his jar, so the incentive systems were connected.

By the time we finished the school year a few weeks ago, incidents of challenging behaviors had gone from 1 per day to 1 per week, which I would argue, is about par for the course for a 6 year old boy.

These types of incentive systems won't have the same effect for every kid, but for Ben at least, it gave him a reason to be excited about his success and to put it into terms that connected to a story, to something he's passionate about right now: the ways of the Jedi.

And because it helped him make an emotional connection to his own success, I didn't feel it was "bribing him to be good." Instead, framing good behavior as "using the force" gave him meaningful, intrinsic motivation rather than just saying he had to "behave" or "be nice."

Ben is at a "mainstream" summer camp right now. And while it's a familiar place with some familiar faces, he doesn't have an aide or specialized support. I've been more than a little nervous about it.

Luckily, it turns out his summer camp teacher is schooled in the ways of the Jedi. Chris filled her in on how Ben is learning to use the force and she responded, as if on cue, "Ah, like a padawan*?"

I sense that the force will be with us this summer.

* Jedi in training

Reading aloud

2010-05-25T16:47:00.001-07:00

For the past few nights, Chris has been reading the book Stuart Little to Ben at bedtime.

This may not sound like a big deal, but it is.

Unlike most kids his age, Ben has never allowed us to read chapter books to him. He would rather read by himself, or listen to audio books while he follows along in the text. He seems to want control over the experience.

Part of if might be that he prefers to hear a story and see the words at the same time and that's difficult when reading chapter books in bed. Part of it might be that he craves (ahem, requires) completeness and can't bear to stop mid-story.

Another reason might be that his because of his hyperlexia, reading - the very act of decoding text - has always been a comforting and regulating activity for him, his go-to strategy for decompression. He has no need to let someone do it for him, just as I wouldn't ask a friend to get a massage so I could relax.

When he does ask us to read to him, it's usually a book that has become a bedtime ritual, like A Child's Garden of Verses. He listens to it, drifting off, as if it were an incantation in Latin rather than a story.

And all this while, I've wondered, despairingly, if we'd ever read chapter books together, if I'd be able to share all those books that meant so much to me as a child.

My second grade teacher, Mrs. Casey, read aloud to our class every day. We may not have realized it at the time, but she had impeccable taste in literature and introduced us to the cannon of essential children's books.

That year, we made our way through Charlie and Chocolate Factory, James and the Giant Peach, Charlotte's Web, Stuart Little, The Lion, the Witch and the Wardrobe, the Homer Price stories, and many more.

These books have everything an eight-year-old desires - humor, fantasy, danger, the grotesque, even ideas about life and death. Every day, we all sat cross-legged at her feet silently listening, waiting to hear what happened next, craning our necks as she stopped to show us the occasional illustration.

We all cried when Charlotte died and when Aslan was horrifically defeated by the White Witch. We all gasped when the birds lifted the peach over the ocean and when the glass elevator went through the roof.

Hearing these books read aloud was easily one of the highlights of my early education. Unfortunately today's standardized tests can't possibly measure the value a child gets from hearing beautiful language spoken aloud and being exposed to the often complicated ideas in great literature.

So, I'm crossing my fingers that reading chapter books at night will finally catch on, as much for my sake as for Ben's. And when it does, I have Mrs. Casey's reading list and I'm determined that we'll work our way through it book by book.

Career counseling

2010-05-19T21:13:00.001-07:00

I used to worry about not being able to have conversations with Ben, wondering when - no, if - we would ever just talk. But in the last couple of years, Ben's language skills have progressed to the point where we can have fairly sustained, back and forth conversation.

He still struggles much of the time and I'm not saying it's like My Dinner with Andre around here, but there are times now where we really do just talk.

Like last night while getting ready for bed.

Ben: Mommy, I wish I could go on a real adventure.

Me: What would you do on a real adventure?

Ben: Warrior things. I would fight bad guys. I would fight in the Civil War.

Me: The Civil War was a long time ago. And warrior things are really for grown ups. So if you want to be a warrior, you can do that when you grow up. You can join the Army. People in the Army protect us.

Ben considered this for a moment as I continued, trying to be matter-of-fact, knowing - hoping - that he'd forget this conversation long before he reaches the age to enlist.

Me: But when you're a warrior, or solidier, you have to live far away from home and I would miss you.

Ben considered this again. Then I heard a familiar tremble in his voice, the one he gets when he's on the verge of tears.

Ben: But, mommy...What if there's a bad guy...what if I get killed?

Me: Yes, being a warrior is very dangerous.

(beat)

Ben: I think when I grow up, I'll have a job in a big office.

A poetic take on Hyperlexia

2010-05-04T19:12:00.001-07:00

Occasionally, the Google Alert I've set to inform me when someone writes about Hyperlexia turns up something notable or interesting. But rarely do I come across anything as delightful as this moving poem by Edward Byrne, a poet, professor, and editor of the Valparaiso Poetry Review.

AUTISM: HYPERLEXIA

My son eyed the large and wide print
. . . . . stenciled across an interstate billboard.

At three, he’d already taught himself
. . . . . to read over a year earlier, even before

he could tell anyone how well he knew
. . . . . to spell words we had never heard him

say. My wife and I were surprised
. . . . . once again by the way he spoke terms

learned through no method we know,
. . . . . on this day reciting lines of a highway

advertisement shining under bright
. . . . . summer sunlight, its bold gold and red

lettering—Family accommodations,
. . . . . adventurous activities, and exhilarating

attractions ahead—sending a message
. . . . . to tourists that now seems meant more

to us as a lesson we only discovered
. . . . . somewhere much farther down the road.

—Edward Byrne

Exhilarating attractions ahead, indeed.

He kindly gave me permission to share this here. The poem is featured in the Spring issue of the Bellevue Literary Review. You can visit Edward's Byrne's blog, One Poet's Notes, to read more and to leave a comment about how much you like this poem.

Untangling

2010-04-04T11:55:00.001-07:00

By now, many of you have heard the story...

Once upon a time there was a blogger named Smockity who took her kids to the library one day and found herself next to an autistic girl and the girl's grandmother.

Smockity went home and wrote a blog post about how she considered, "jabbing a ball point pen into her eye" rather than endure the autistic girl's unusual behavior and grandmother's indulgence of said unusual behavior.

I'm going to spare you a link to the original piece (it's gone now anyway) but as you can guess, lots of other bloggers including JennyAlice and MOM-NOS and Jean Winegardner and many others - responded with their own posts about tolerance and compassion and giving kids and their families the benefit of the doubt. A tsunami of backlash eventually prompted Smockity to write an apology.

I don't need to pile on. These posts are insightful and heartfelt and echo my feelings on the subject.

However, the whole incident did get me thinking about situations where I feel particularly self-conscious, where I feel like onlookers like this Smockity woman might be thinking that Ben is spoiled or a badly-behaved brat due to my permissive or inept parenting.

One of those situations is when Ben is perseverating.

Perseverate: (verb) To repeat something insistently or redundantly.

There are probably as many ways to perseverate as their are kids who do it. It could be opening and closing a toilet lid, or opening and closing a mailbox, or watching the same 5 seconds of a TV show over and over and over, or lining up objects, or asking the same question again and again.

Perseveration probably functions in a few different, but related, ways.

Repetition can be calming, and a way to block out unwanted stimulation. It can produce the OCD-related high of compulsion completion, as Squidalicious describes. It could be the result of pattern seeking. It could be a desire to exert control on a world that often seems chaotic and unpredictable.

One of Ben's current perseverations is to demand that the people around him recite or act out various scenes from books or movies. This is not the hey-let's-play-robin-hood imaginative play. This is an insistent, almost anxious barking of stage directions and lines, often to befuddled friends or family members who don't realize they've been cast in a very SPECIFIC production.

Or it might happen in a public space, where passers-by might not understand how it could be really important for a boy and his mom to stage a scene from Toy Story 2 in a grocery store or museum gift shop.

I'll acknowledge that this particular fixation is a lot easier to disguise as typical play than things like hand flapping or banging objects together. But like most perseverative activities, the problem is less the activity and more what happens when the activity is interrupted.

Redirecting and interrupting perseveration is a delicate task.

I think of dealing with perseveration as trying to untangle a bunch of small fragile necklaces that have become knotted up with one another in a jewelry box.

You can't simply yank them apart or the tiny chains will break. You have to patiently, gently tease them apart. It takes patience, focus and loving perserverence. While you're doing it, you feel like you're not making much progress, and sometimes even making it worse by getting the chains in more complicated knots.

I can't tell Ben, "Just STOP IT NOW!" when he gets into a perseverative mode because this will result in a much more difficult problem than a fixated child.

I normally allow him to continue what he's doing for a bit, but try to find an opportunity to get his attention - I ask him to press the "pause" button on his nose - to tell him calmly that that this isn't a good time for pretending so we need to find a place to say "to be continued..." in the story, or that we can tell the story for two more minutes and then we're going to switch activities.

It doesn't always work the first time. But after a few (or several) attempts, he'll usually agree to the deal. Other times, I can interrupt his intense focus on books or objects by saying, "Ben, we're going to switch gears in 5, 4, 3, 2...okay: switch gears."

I think many of you probably have developed your own strategies of gentle, not so immediate or abrupt, redirection of perseverative activities. You know what it looks like when the chain links are yanked apart and it's not pretty. You know that spending a few extra minutes to gently untangle is so much better than the alternative.

But to an outsider like Smockity, these strategies probably just look like indulgent, permissive, wimpy parenting: "Why doesn't she just tell him to knock it off?" "Who's running the show here?" "Why can't she control her kid?"

The truth is that some chains can withstand a little yanking, but others can't.

Jean Winegardner says it much better, and without the tortured jewelry metaphor, so I'll leave you with this thought in honor Autism Awareness Month.

...I ask that next time you see a child acting unusually, or next time you see a person who is acting in a way that you consider inappropriate, take a minute to consider that you don't know the whole story. Understand that there might be factors at play that you aren't aware of, whether they be behavioral, emotional, medical, or something else. Remember that some disabilities are invisible. But mostly understand that the wonderful diversity of all of our members of society makes our world as a whole better.

Just say thank you

2010-03-25T20:00:00.001-07:00

So I'm picking up Ben from school today and I end up chatting for a moment on the playground with the dad of one of Ben's classmates.

The dad is one of those guys who has a big friendly handshake and a big friendly smile. He's the guy you want manning the grill at your backyard BBQ, the guy you want to show up to help you change your flat tire, the guy who probably routinely says, "The more the merrier!" and means it.

And his son "J" seems like one of the most easy-going, friendly kids I've ever seen. It's no wonder J was the first kid that Ben identified as his friend when he started kindergarden last fall.

J's dad and I talked about the nice weather returning, how we should plan a pot luck picnic for the class at a park this spring, and what our kids were up to.

He mentioned that J was starting baseball this week.

"Would Ben ever be interested in playing baseball?"

Okay. What I should have done is accept this conversational volley as the open door it was meant to be. What I should have said is, "I don't know, but I heard Ben hit a home run in the baseball game in PE this week! I'll ask him!"

But instead, I rambled on about Ben not being quite a team sports kid yet, that he didn't really understanding the give and take that team sports requires. That we were doing gymnastics and swimming this summer, but maybe stuff like baseball and soccer were still a bit beyond him.

Then I felt that eyes-glazing-over chill suddenly go through the air.

And then imagined the sound of my hand slapping my forehead.

Why? Why? Why did I blow this?

Why did I feel compelled to spell out Ben's differences for this guy? It's probably true that Ben isn't ready to be on a baseball team, but who cares? This guy was nice enough to ask.

Oh, and did I mention that he's the coach of his kids' team? The coach of a kids' baseball team was asking if Ben might be interested in baseball? I don't want to say he was trying to take Ben's cleat measurements, but it was clearly an invitation of some sort.

I think sometimes we get so wrapped up in our kids' special needs and differences that we observe them with almost clinical precision. We start to think about our kids in terms of their IEP goals: Is Ben using suggestive rather than commanding language when making a request of peers in 4 out of 5 observed attempts?

To which a lot of people might just say, "Oh well. Aren't a lot of six year olds bossy?"

And maybe we're so used to advocating for them and making others aware of their needs and being on alert that we go into "full disclosure" mode out of habit.

I need to remember that sometimes, people see Ben and don't just see his differences. They see a playmate, or one of the kindergartners in room 6, or a kid who could be on a baseball team.

And that's what I want, after all.

That, and a chance at a do-over so I can go back and accept this man's lovely overture with the grace and gratitude that it deserved.

en garde

2010-02-21T15:10:00.001-08:00

Ben is not a dabbler. He is not a generalist. He is a serial expert. His interests come in waves and they seem to engulf his brain completely.

Ben's current obsession is sword fighting.

Every day, for example, several times each day, we re-enact this scene from the 1938 Errol Flynn version of Robin Hood.

(This version has subtitles in French for some reason. We prefer our subtitles in English, at least for the moment. )

I play the Basil Rathbone role, plus any other characters. Ben is Errol Flynn of course.

But in our homegrown version, he's actually not Robin Hood, he's Ben. That's because every adventure story we act out is a chapter from "The Adventures of Ben," a mash-up of three different versions of Robin Hood, Star Wars, and an obscure animated version of Babar.

In the Adventures of Ben, Ben the hero fights the villain, Rex. Rex has a host of nameless henchmen. "Chris" and "Christa" are Ben's loyal compatriots (loosely based on Little John and Will Scarlet). Sometimes there is a wise master who dies midway through the story and talks to Ben as an invisible spirit. This character is based on Obi Wan Kenobi, but is always named, "Martin" after Martin Luther King, Jr.

Side note: One outcome of an Oakland public school education and no solid theology at home is that you pretty much grow up assuming Martin Luther King, Jr. is God.

I can't begin to describe how tired I am of sword fighting and light sabers, of prison rescues and storm troopers, of the same scenes over and over again. But I can't pretend I didn't play a part in encouraging this.

It starts out as something that seems like a positive - even a breakthrough. Maybe it's inspiring imaginative play or creativity, maybe it's something that connects your child to other kids and gives him an age-appropriate conversation topic. Maybe it's just different than the current obsession. ("Great! Something other than trains!")

You start to reinforce it. You start to help him explore it because you love seeing him excited and engaged in something new.

Pretty soon it takes over. Pretty soon it starts to seem less like an interest that connects him to others and more like another perseverative ritual that gets in the way of real interaction.

You wait to see if it will burn out, or just come and go over time.

But this particular obsession, unlike trains, is focused almost exclusively on fighting. If all he's thinking about is defeating evil, does he take that combative mindset to school?

Based on an increase in incidents with other kids at school over the last few weeks, my sense is that it does.

Kids have to explore conflict as they grow up, and I know that boys tend to do that physically. I get that. I'm okay with that.

But how well is Ben able to detach from the emotions of the pretend story? After all, Ben and kids like him are not exactly Jedi masters of their own emotions.

I wonder if the aggression he acts out in the story continues to reverberate around his brain, like an echo. And does his body respond to those mere echoes as real?

So I've started to explore distractions and alternatives. I'm thinking about better ways to set limits without turning the obsession into the even more attractive forbidden obsession. I'm trying to find ways to talk about pretend versus real life.

And so far, it's all been pretty unsuccessful.

If you have any ideas, let me know. I'll either be on the Death Star or in my foreboding castle, with my sword and light saber, and my army of henchmen and storm troopers.

Feel free to drop by anytime.

A visitor from the sun

2010-02-11T14:11:00.001-08:00

So far, 2010 has been off to a rather dreary start.

For one thing, we've had days and days of rain, punctuated by oppressively gray days with no rain, and the rare and fleeting sunny day that serves as a cruel reminder of what we've been missing.

I don't ski, so unlike many Californians, I don't become giddy with visions of powder on the slopes when the rain falls. I work at home in a rather dark downstairs room that feels like a cave on days like these.

And the weather is amplifying the general malaise-y feeling I have of being stuck.

But last Friday evening I was momentarily jolted back into good cheer when the sun returned; or more accurately, when an ex-pat from the sun paid us a visit.

I'd better back up a bit.

Two years ago, some friends on our block returned from a trip to New York and brought us a DVD: Gustafer Yellowgold: Have You Never Been Yellow.

Gustafer Yellowgold is a very unusual and delightful character and the creation of singer-songerwriter-artist Morgan Taylor.

Morgan writes and animates songs about Gustafer, who came from the sun to find a cooler place and ended up, appropriately, in a lake in Minnesota. His friends include a pet eel and a pterodactyl with exquisite fashion sense. His hobbies include eating pine cones and finding creative ways to crush desserts.

If none of that makes sense, it really doesn't matter. His songs and drawings are so beautiful and engaging, so whimsical and dreamlike that you, like us, may convert to the Church of Gustafer after just one viewing.

Gustafer Yellowgold is art that an entire family can enjoy together, and that's hard to find these days.

Sure, there's great entertainment out there that engages different ages on different levels. Pixar is masterful at this. But there's something about Gustafer that doesn't require narrative segmentation, as in: The kids will love this and (wink, wink) here's a little something for you grownups to enjoy.

After becoming quickly enamored with Have You Never Been Yellow? we bought Morgan's two other Gustafer DVDs, we went to a live performance in a local record store, and Ben even dressed up as Gustafer for Halloween two years ago.

The DVDs are ideal for hyperlexic kids, since the lyrics to the songs are part of the illustrations and kids can read along. The DVDs even include a "sing-a-long mode" where the vocal track is removed - karaoke style - with the lyrics showing on-screen.

Morgan's wife Rachel Lozack told me that more than one family with a child with autism has commented on how attached their child has become to Gustafer.

That might be because the characters' expressions are very simple, and because there's no dialog - only simple animations with minimal movement. This probably makes it more accessible to those who might have challenges processing a lot of information at once.

So, back to last week.

When Chris found out that Morgan might have a free evening on an upcoming west coast tour, he schemed with the same friends on our block who introduced us to Gustafer in the first place to host a house concert where we and a bunch of friends could enjoy Morgan's music in an intimate setting.

It worked, and last Friday, Morgan, his wife Rachel and their little boy Harvey pulled up to our house in a van with Gustafer's face emblazoned on the side. Morgan performed for a group of very appreciative and captivated Gustafer initiates.

Ben got to sing a little of his favorite song for Morgan before the show even had the thrill of being the announcer. "Ladies and gentlemen! Boys and girls of all ages..."

I urge you to go to the web site or YouTube and experience Gustafer's world yourself, especially if, like me, you could use a little extra something from the sun right now.

Steps. Maybe forward.

2010-01-12T15:26:00.001-08:00

Last week I told you about having a helpless feeling about Ben's recent struggles with aggression and impulse control.

In the midst of that helplessness, a thought occurred to me.

The first incident that was unusual in its intensity and duration (relative to his behavior in kindergarden so far) happened not long after Ben started taking some daily asthma medication. It's a corticosteroid called Flovent.

After his hospitalization for an asthma attack, the doctor suggested that he remain on this daily low-dose preventative over the holidays when catching a cold - his asthma trigger - was likely.

While behavior changes aren't part of the official list of side effects for this medication, I found a convincing amount of of anecdotal information (hey, it's the internet, after all) about children behaving more aggressively and impulsively while on the medication.

The next morning we skipped Ben's "puffs" in the morning and have kept him off the medication - with this pedicatrician's approval - ever since.

And Ben has had six good days in a row.

(Please don't jinx it. Please don't jinx it. Please don't jinx it.)

I don't mean to suggest that Flovent was causing Ben's challenges of the several weeks. He was on a low dose - less than half the normal amount. I do wonder, though, if it was an exacerbating factor. He seemed more anxious, high strung, and prone to switching into flight or fight mode at the drop of a hat.

Several times at school, when given a chance to chill out, he would appear calm and give all the right answers to the questions that one uses to assess whether the storm is over. He appeared to be a kid who was ready to control his behavior and rejoin the group.

Then, as soon as he would return to the classroom with all its unpredictability, the anxiety spikes and resulting aggression quickly returned.

But, this week, he seems to have his emotions under more control. He still has moments of anxiety and acting out, but they are so much milder and he is able to think his way out of them.

Case in point: This week, Ben has learned what it means to "ignore" another child - in a good way. I gave him the suggestion and he's used it three times this week to overlook annoying behavior by his peers.

We still need to work on the nuance. He loudly and dramatically announces, "I'm going to IGNORE you, [child's name]!"

At least he's getting the idea.

And in fight or flight mode, he isn't able to make that kind of choice. Not by a long shot.

Trying to reason with Ben once he's in that mode is like trying to reassure someone with a deathly fear of heights who is standing on a tall ladder, "Just relax. You're not going to fall. Pull yourself together."

(Which is why his challenges are different than the manipulative or attention-getting behavior of typical peers. But, ho nelly, that is a whole other post.)

So we've agreed that the Flovent will come out only when he has a cold and we'll watch and wait and to see what patterns might emerge.

So this must be the one step back

2010-01-05T08:53:00.001-08:00

I normally don't write when I'm in the midst of an emotional situation. This isn't designed to be my diary or a place for me to process my feelings in public view.

I tend to write after I've had some analytical distance from an event, hoping to provide some Big Insight that might also help one or two of you, or maybe just validate some Big Insight you've had yourself.

I tend to write after something good or funny has happened, so I can celebrate with a community who understands that a small step forward can feel like a leap.

And I tend to write for that mom who is frantically googling Hyperlexia or Asperger's at 2 a.m. looking for answers and reassurance that the world has not actually ended. Maybe that mom will find a story about Ben telling me "I love you" on Valentine's Day and feel better, or read about a particularly creative use of echolalia and get a good laugh.

But right now, I'm In The Middle Of It.

And I'm going to write anyway.

After a stellar start to the school year, Ben has had several discouraging days at school. Not that many: a string of them before winter break and then on the first day back.

Many, but not all, of the episodes start when he misses out on something the class is doing. He explodes, and can't seem to pull himself together.

He's bolting out of the classroom.

He's shouting insults and teachers and students.

He's hitting, shoving, and even in one case, biting other students.

That one landed him the principal's office for the first time. (How's that for a milestone?)

It's not like he doesn't have support at school. There are good people who are on his side, trying to figure this out.

And he's able to talk about the episodes with us at home more than he's ever been willing or able to do in the past.

Some of his reflections sound like he gets it and that he's sincerely sorry, but then in the midst of reflection, he'll say something like, "I never want to be anyone's friend anymore." "I don't want to be YOUR friend anymore either." "I'm going to be SO naughty that I crash the WHOLE WORLD.""I"m going to teach [insert child's name here] a LESSON!"

My worst fear is that these self-defeating thoughts simply create a vicious, inescapable cycle in which he doesn't believe he can do well.

My second worst fear is that these behaviors will stamp out the tiny, green shoots of real friendship that have started to grow with some of his classmates this year.

At our parent-teacher conference last month, his teacher told us that he is doing well academically. He's doing the work, mostly unprompted. It's the lack of impulse control that causes the struggles. He doesn't want to take breaks because he doesn't want to miss out on what the class is doing.

I know so many of you have faced this and so much more. So many of you have looked at your phone every five minutes waiting for The Call From School. So many of you have waited until your child wasn't looking to let the tears come.

Anne Lamott says there are just two prayers:

"Thank you, thank you, thank you." and

"Help me, help me, help me."

So, this is where I am right now, this moment. Saying a lot of the second one, and hoping that today is a good day.

Pencil and paper

2009-12-11T11:32:00.001-08:00

When Ben was about eighteen months old, he liked to color on a flip chart I brought home. He'd sit on the floor and fill up the entire thing with crayon scribbles over the course of several scribbling sessions. He used many different colored crayons and his strokes were big and bold and confident.

Then around age two, the coloring stopped.

Instead, he preferred Chris to draw characters and scenes from his favorite books. Chris' impressive drawing skills met Ben's intense need for verisimilitude. For awhile, we had drawing pads full of Chris' lovely sketches of Maurice Sendak characters, but no scribbles from Ben.

Because of his fine motor delays, drawing was hard. And things that are hard aren't fun.

And why struggle with scribbles when he could simply outsource his art to daddy and get a better result?

Optimistically, we kept bins of crayons and markers and paper on low tables around the house, knowing that if the urge to draw would ever strike, Ben would be only steps away from art supplies.

But over the next several years, they went almost entirely unused.

When he started his special education preschool and occupational therapy, we saw handwriting assignments that proved he was writing at school, but it wasn't something he ever chose to do at home.

As kindergarten approached, I was anxious about his lack interest in writing and drawing. After all, at school, the primary means for demonstrating what you know is still with pencil and paper.

But his new occupational therapist did something I wasn't expecting.

She didn't pull him out of class to work one-on-one with him on handwriting drills. Instead, she worked out a deal with his classroom teacher that she would come to class once a week and work on handwriting activities with the whole class, then focus on Ben and one other student with OT services during the independent work.

Brilliant.

Lots of kindergardeners without IEPs need help with handwriting. The whole class is benefiting, and best of all, Ben isn't singled out as getting "special" help, nor is he missing out on classroom activities to leave for OT.

As a result, his handwriting has improved and he's needing minimal prompting in class to do the work. And he's doing something he never did before: occasionally writing and drawing at home on his own.

Exhibit A: Wall-E and Eve

Exhibit B: A roster of the Superfriends

Exhibit C: Self-portrait (created at school)

Exhibit D: non-required coloring (in the lines! multiple colors!) on a homework assignment

And then there was this.

One morning this week Ben had one of those out-of-nowhere meltdowns that just kept going on and on and on. He would scream at us, go in his room, slam the door, come out several minutes later to provoke another confrontation, go back in his room, slam, scream, sulk, slam, scream, repeat.

Then he stomped into the kitchen. He quietly and methodically collected a black marker, a piece of paper, and a roll of tape, made this neatly-lettered sign and taped it on his door.

Right after that, the tantrum was over. He was his sweet self again and he apologized. It was the first time he'd used writing as a communicative act.

Perhaps in the process of planning out how to make the sign and write the words, that frontal lobe logical brain had to turn on, deactivating the fight or flight lizard brain for a moment.

Whatever it was, there is indeed power in the pen.

Homework time

Our asthma initiation

2009-11-29T16:38:00.001-08:00

Since he was less than a year old, when Ben got a bad respiratory illness, it usually manifested as croup.

I'm not sure how many times he had it, but I know it was often enough that whenever Chris and I were awakened by the familiar seal bark cough, we could spring into SWAT team-like action without exchanging many words.

One of us would gather Ben up in a blanket and bring him outside in the cool, damp night air. The other would fling open the doors and windows in the house, start the humidifier, and get a popsicle out of the freezer.

Other times - fairly frequently actually - Ben would just wake up with a garden variety cough and we would blame it on dry air caused by leaving the thermostat too high by mistake. We'd open his bedroom window and wait for it to subside.

The doctor even gave us an albuterol inhaler two years ago during a really bad cold when his cough included wheezing.

But no one ever called it asthma.

Until last weekend, that is.

Ben was sent home from school on Friday with a bad cough. When it didn't get better at home, we tried the inhaler but it seemed empty. I called to get a refill, but the prescription was two years old, and the doctor's office wanted to see Ben before a issuing a refill.

Our plan was to bring him in to the urgent care clinic the next morning.

A couple of hours later, Ben couldn't finish a sentence without wheezing, and with the blessing of the on-call nurse, we headed for the emergency room.

At this point, Ben was cheerful and energetic. He ran and skipped into the emergency room, singing along the way, and goofed around in front of the closed-circuit video monitor. I was expecting we'd get an inhaler and be home in an hour.

The triage nurse examined him and typed "Respiratory Distress" into her computer. The respiratory specialist was incredulous that we hadn't brought him in sooner, given the severity of his asthma.

Asthma? Did I mention he was skipping and singing?

After an hour of inhaling albuterol through a mask, the doctors still heard too much wheezing in his lungs. They wanted to admit us for the night.

I convinced Ben we were going to have an adventure in the hospital and that I would stay with him. He wasn't happy about it, but he stayed mostly calm, given that he had three wires stuck to his chest, a mask and a monitor strapped to his finger.

The really hard part came when we had to tell him he had to stay a second night.

I think Ben was stable and healthy enough to go home, but I get why they were so cautious. Especially if you consider that many families who come to Children's Hospital in Oakland don't have a primary care pediatrician. For some, this is the sole touchpoint to ensure that the family understands and will stick to the "Asthma Action Plan" that will keep the child from coming back.

A nurse sat down with us to make sure we understood what to do: yellow zone, red zone, two puffs, peak flow, identifying the triggers, long-term controllers and quick relievers.

We have a plan, and drugs, and we know what to do now to keep this from happening again, just like 1 out of 6 families in Oakland who have also a child with asthma.

Ben is home, healthy and doing just fine.

Mostly, I'm heartened that he was able to make it through an experience that was a sensory nightmare, that kept him from nearly every important ritual in his life, and one in which he faced nearly constant, difficult limits (like being confined to his bed for two and a half days).

He fussed, sulked, cried, and screamed bloody murder at us several times, but he also happily watched videos on a portable DVD player, read books, and played with the up-down controls on his hospital bed over and over again.

(Can I just tell you how much he loved the bed?)

If you would have told me last week, "Ben is going to have to go to the hospital on Friday night and stay for a couple days," I would have suffered a major anxiety attack.

But, surprise: there we were. And we did okay. He is capable of quite a lot. More than I ever would have expected.

Do you think I'm spoooooooky? (Ben mugs for the camera in the ER)

Anything is possible: two stories

2009-11-10T22:10:00.001-08:00

Many of you regularly read the same special needs parenting blogs that I do, so it won't be a surprise when I say that I found myself stopped in my tracks, wiping away tears, and pumping my fist in the air all at once while reading two of my favorite writers recently.

For those of you who have not yet discovered the wonderful MOM-NOS or Drama Mama at Like a Shark, I direct you to these two stories and implore you to stop whatever you are doing and read them.

Every smile a memory: Cassidy, Dierks, and the transformative power of friendship

ability

These are stories about friendship, and about connection, and believing that amazing things are possible when individuals connect with something they feel passionate about.

Enjoy. Bring kleenex.

non sequitur

2009-11-03T17:03:00.001-08:00

As Ben runs down our sidewalk
Me: What's wrong? Do you want to run away?
Ben: Yeah.
Me: Why?
Ben: All you need is caffeine

Not on my birthday
Ben: Mommy, it's your very last birthday.
Me: Why?
Ben: Because you're the only one who gets a present.

Ben: Daddy took me to the doctor and the doctor said that one day you went to the doctor and said that you used to take a bath in the morning.

Ben: I have a question for you. What if you open six packages and one suitcase?
Me: I don't know. What?
Ben: It will turn into dollars.
Me: Why?
Ben: Because you forgot to put dollars into it.

Me: Can I have a kiss?
Kiss
Ben: As well as you like!

After waking up in the morning, while still lying in bed
Ben: C'mon. It's under the bed. The table set. There's a cut through the wall.

_______________

I'm alternately baffled and amused by Ben's fascinating use of non sequiturs.

I've been trying to collect them over the past six months or so in order to share them with you. I've been mostly unsuccessful, usually forgetting to write them down, but I did manage to get a few.

We hear these non sequiturs and scrambled syntax pretty often. They linger even as his language skills continue to take leaps.

And Ben still has trouble getting words assembled when he's communicating something fairly novel. Sentences will often come out like this:

"Can you... Can you... Can you... Can you... get a piece of tape for this book? The page is ripped."

Sometimes he has to walk around while he's waiting for the words to come.

I imagine his feet powering gears his brain.

I imagine a spinning icon on his forehead that says "loading...loading...loading."

I'll admit that this post started as one of those, "Isn't he delightful" pieces, but as I assembled this list of quotes, I began to wonder: Is this a specific, clinical phenomenon? Does it have name? Is it common? How is this addressed by speech therapy?

What's your experience with language patterns like these? Do you see them in your child with ASD? Your typical child? Do you have them yourself, if you're on the spectrum?

Send me your thoughts as fodder for a follow-up post on this phenomenon.

I'm going to my room (post script)

2009-10-28T10:52:00.001-07:00

I realized, after corresponding with a few of you about my last post, that I'd left out an important bit of nuance.

We aren't "sending Ben to his room" in the traditional time-out sense. In fact, it's been really important that we don't treat this as a punishment.

Again, thanks to Jordan at Communication Therapy for framing it this way.

We suggest to Ben that he go to his room the way a helpful but deadpan maitre'd at a fancy restaurant would offer a very important, stinky cigar-smoking patron a booth far from other customers.

"Sir, I believe you would be much more comfortable in our private booth."

Prompting Ben to go somewhere else to cool off doesn't focus (overtly) on stopping the behavior, it's just about moving it to another location. So it's a relatively unthreatening proposal.

The result is that the behavior does stop - but this happens because Ben self-regulates rather than responding to threats of punishment (which can just pour gasoline on the fire).

And, more importantly, I think that Ben is starting to grasp the real consequences of his actions: "You hurt people's feelings when you express anger this way."

The focus isn't on the anger, but on the expression of it. (Wow, I feel like I'm channeling Jordan right now.)

That's not to say that we aren't trying to teach better ways of coping to begin with, but once we've passed the point of no return in the rage cycle there's not a lot of learning going on.

Reflecting on this made me recall a recent Slate article on how lowering the emotional intensity with which we respond to our kids' behavior is often the best tactic for changing it.

Discrete Trials of Frustration (or: Thank you, Wii)

2009-10-25T23:50:00.001-07:00

We have a Wii at our house. Wii is this Nintendo video game where you move around like you're really doing stuff and these characters in the game really do what you're doing and, well...

(So, okay. If you are Amish, or have been backpacking for the better part of two years, or are able to be blissfully unaware of popular consumer culture and you don't know what I'm talking about, it's a little hard to explain. You can go here to find out what Wii is.)

Anyway, we have one and Ben really enjoys it.

He likes the standard Wii games that come with the whole console-controller-thingy: like bowling, baseball, golf, and boxing. But he really loves the newer Wii Sports Resort, in which the Wii avatars visit Wu Hu Island, a sort of Wii Club Med. There, you can pick from archery, fencing, wake boarding, ping pong and frisbee, among other activities.

I credit the hours Ben has spent so far with Wii to introducing him - conceptually - to many sports that never would have come across his radar. Familiarity with different sports and games - even if you're never going to actually play them - is a useful sort of social currency.

After all, knowing things like what a pick-up game is in basketball and what it means to be on the fairway versus the bunker in golf gives you just a few more ways to join a conversation.

It's also helping to build real honest-to-goodness hand-eye coordination and gross motor skills.

Ben's ability to hit a softball in the real world increased dramatically after he mastered it in Wii. He went from not even knowing how to stand or hold a bat to actually being able to connect with the ball in the span of about a week.

(I'm sure some occupational therapist post doc is writing a doctoral thesis on Wii at this very moment.)

But there's another benefit to Wii that I did not anticipate, and it's probably the most powerful and most valuable one. It's also the most painful one for Ben.

Wii teaches you how to lose.

Ben has inherited a double dose of the perfection gene and this is amplified by his spectrum traits. One of the chief triggers for him coming unglued is failure: not being successful at something that he really wants to do.

This is a little different than being competitive. He doesn't need beat someone else to be happy, he just wants to be perfect.

But Wii doesn't care if you're a kid. And Wii doesn't care if you're really cute. And Wii doesn't know that you're on the autism spectrum and after all, successive approximations are really what's important, right?

No. If you miss the shot in ping pong, you lose the match. Your avatar hangs his head and the words YOU LOSE flash on screen.

There are plenty of activities - real and virtual - that provide this brutal, inevitable lesson for Ben, but the thing about Wii is it doles out lots of success along with the failure.

Unlike in the real world, Ben can get a strike in bowling and make par on a the golf course, so he's motivated to keep trying.

Wii ends up being a little like discrete trials in applied behavior analysis, a common therapy used with children with autism. You present the person with frequent, repeated opportunities to perform a skill that's just on the edge of their competence. The frequency means that there's lots of positive reinforcement with success, and failures don't have high stakes, because opportunities to try again just keep coming.

At the beginning of the summer, losing Wii games was one of the triggers for the explosive verbal and physical rages that Chris and I wrote about.

I began to think that I wanted to place a moratorium on Wii for awhile, that he just wasn't ready for it, he wasn't equipped with the coping skills he needed and that the frustration was outweighing the fun.

On the other hand, these frequent outbursts gave us frequent opportunities to try a new strategy for dealing with rage: just letting him be mad, but making him to go to his room and cool down by himself.

The regular frustration that Wii served up like a disappointment batting cage gave Ben lots of opportunities to practice his coping skills, too.

Jordan over at Communication Therapy gave me great coaching on setting this up with something like this: "You can say those words when you're mad, but they hurt our feelings, so if you're going to say them, you have to go in your room where you can't hurt anyone."

At first, retreating to his room was something he did towards the end of the rage cycle, with our (usually physical) prompting.

Then, little by little, Ben would go to his room by himself even earlier in the cycle. Next, it became a regular part of the ritual. Often accompanied by a dramatic door slam and in one case the declaration, "I'm going in my room to (screaming) CALM DOWN!"

Lately when he's upset, Ben often goes to his room and slams the door, with no prompting from us, rather than exploding in a verbal rage or physically acting out.

Usually after five minutes, we hear him happily telling a story with his trains or we peek in to see him engrossed in a book. Sometimes, he even comes out calmly and apologizes.

I think many of you know how amazing this is, what a huge corner I feel we've turned, what a don't-write-about-it-or you'll-jinx-it moment we're in.

Ben's emotional outbursts are still happening and he still has a long way to go to learn the skills that that will let him say, "Oh well - whatever." more often. The period before he goes to his room is not pretty, but it's getting a lot shorter.

And he is learning that he CAN let go of those feelings and not stay hooked. Maybe he is starting to understand that he is the only one who can get himself back to a state of equilibrium.

And I think I have, at least in part, a video game to thank for that.

Dispatches from Kindergarten (and a blatant fundraising appeal)

2009-10-06T10:48:00.001-07:00

A few weeks ago, Ben started Kindergarten in a big public school. It's the kind of school where there are bells for each period, and students line up on the blacktop before school starts, and everyone has an assigned desk with his or her name on it, and the hallways have shiny linoleum floors.

At Ben's new school, the students call the teachers "Ms." or "Mr." rather than by their first names, and the principal comes to work in a neatly tailored suit every day, even when the temperatures climb into the 80s. Families are encouraged - but not required - to send their children to school in a uniform.

And there's homework.

Toto, I don't think we're in preschool anymore.

I was nervous about the transition into a much more formal, traditional school environment where expectations would be higher and routines would be more rigid.

But Ben is doing great, possibly because of that high degree of structure and predictability.

His teacher and the whole team of professionals that support full inclusion and his IEP goals - with things like a social skills group and extra help with fine motor skills - are excellent.

And like most schools, a parent organization works to raise extra money to pay for things that public funding no longer can: a library and a librarian, a computer lab, and enrichment activities from local arts organizations.

So here's where you come in. You knew this was coming, didn't you?

Ben's first fundraising activity is a walk-a-thon on October 24th. Students will walk laps around the school campus (ten laps for Kindergartners) and donations will go to the school PTA to support a variety of programs and services for the students.

So if you like the blog, if you support public education, and if you're not also shaking down your friends and family to support your kids' school, click on that Donate button over in the right margin and put a couple bucks in our PayPal account that we can pass along to the PTA on behalf of Ben.

Thanks!

How to watch TV

2009-09-14T19:43:00.001-07:00

Here's a primer on TV viewing from Ben (as imagined by me)
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First of all, let's get one thing straight. When I say "TV" I mean DVDs of movies or other shows you can get from NetFlix, the video store, the library or the bookstore. Also shows that my dad downloads for me on the big computer.

I do not understand why anyone would watch just whatever is "on" at the moment or anything that doesn't have scene selection. I have some movies and shows on VHS cassette, as opposed to DVD. These do not have scene selection, and they are not optimal.

First, when you start your movie, go to the DVD menu and turn on captions. Movies make so much more sense when you can read what the characters are saying. This will also help you memorize the movie, of course, or at least the funny parts.

Compare the movie to the sneak peek

Watch the trailers, or sneak peeks, at the beginning of movies and memorize them.

Ask your mom or dad to get the movies in the sneak peeks from NetFlix or the video store. When you get a new movie, scan through the movie or use scene selection to confirm that every scene from the sneak peek is, in fact, in the movie.

You can also recreate the sneak peek this way on your own. Be forewarned that you will discover, for example, that some scenes from the beginning of the sneak peek are actually in the middle or at the end of the movie.

You may also discover that the footage in the sneak peeks is sometimes different than the actual movie and this may be very upsetting.

Read-along narration

I recommend choosing movies that have been adapted into a Read-Along storybook. Read-Along* storybooks, which come with an audio CD, have narration that explains what's going on, which is helpful because sometimes it's hard to tell.

Get the book, start the movie, and read the narrator parts from the book as you watch the movie. Sometimes, it's hard to fit the entire narrator line in before the character talks, so you have to practice these parts many, many, many times to make sure your timing is perfect.

(And if you don't know the difference between narration and dialogue then you must be, like, eighteen months old or something.)

Make up your own narration

Some movies don't have Read-Along books or even Read Aloud books** to go with them. I know this is hard to believe, but it's true.

For these movies, you just have to make up your own narration. Make sure you stand right in front of the screen and describe what's happening in the movie. You may not be able to do this until you've seen the movie several times, but that's okay.

Punctuate your lines with something like "suddenly" or "meanwhile" and use a very dramatic tone of voice. This is very effective.

Match the frame

For movies that have books to go with them, see if you can find the exact frame of the movie they've used on each page of the book. This will require you to watch the movie almost frame by frame, but once you practice your remote control technique, you'll be able to do it.

I'll warn you that it's very frustrating when you find out that the picture in the book is different or doesn't even exist in the movie to begin with. VERY frustrating.

I should note that this technique also works if you have the View Master of the movie. Once you become really advanced, see if you can compare the frame of the movie, the picture in the book and the View Master to look for inconsistencies and discrepancies.

Important!

All of these techniques require that you are all by yourself. I can't stress this point enough.

No one else can be in the room while you are watching movies.

These activities require an enormous amount of concentration and you can't allow some well-meaning adult to make some comment or ask you a question about the movie like "Oh, what is he doing now?" or "Why do you think Mulan is sad?" to make you lose your focus.

Occasionally, my mom and dad have something called "Movie Nights" where they invite my cousins or one of my friends over to my house and make me watch a movie with them without scene selection and without the remote control.

This is NOT ideal, but I'm willing to put up with it since there is always popcorn and right after everybody leaves, they let me have the remote again.

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*Do not confuse Read Along storybooks with Read Aloud storybooks. Read Aloud storybooks are fine, but they often have words that are different from the movie. Also, don't even try this with Golden Books, which are completely different and therefore useless.

I have recently discovered Junior Novelizations of movies which actually describe everything in the movie and have just about every line of dialog!

I will be investigating these further in the future. Another advantage to these is that it allows you to recreate the ENTIRE movie in the backseat of the car!

** I also highly recommend the entire Scholastic Video Collection with adaptations of all my favorite books. Watching the videos and reading the books at the same time has been one of my favorite activities for a long time now.

End of the Summer

2009-08-31T10:27:00.001-07:00

And I had a dream, it blows the autumn through my head,
It felt like the first day of school,
but I was going to the moon instead,
And I walked down the hall
with the notebook they got for me,
My dad led me through the house,
my mom drank instant coffee,
And I knew that I would crash,
but I didn't want to tell them,
There are just some moments when your family makes sense,
They just make sense.
So I raised up my arms, and my mother puts the sweater on,
We walked out on the dark and frozen grass,
the end of summer.
It's the end of summer,
When you send your children to the moon.

Dar Williams, The End of the Summer

We made it through the summer that was packed with new experiences and big changes and came out just fine.

But along the way, I kept steeling myself, preparing for worst-case scenarios that never materialized. This is my twisted strategy for ensuring I'll either be 1) happy to be wrong or 2) disappointed, but smug - but never, ever taken by surprise.

Ben made it through mainstream summer camp and swimming lessons at his pre-school without the help of an aide, even changing into his swim suit and dressing himself each day, usually coming home with an inside-out and backwards shirt to prove it.

He took to swimming like, yes, a fish, and even swam fearlessly in the ocean for the first time during a trip to San Diego.

Ben attended two weeks of "Itty Bitty Arts Camp" run by an extraordinary organization called Glitter and Razz here in Oakland.

While Glitter and Razz's theater camps are not designed for kids with special needs per se, they have good reputation for, well, speaking French (or at least French-Canadian.)

The weekend before he told us he didn't want to go, and I assumed that Chris would have to be with him each day, cajoling him to participate and bargaining with him every five minutes to stay for just a little while longer.

But the first morning, he skipped into class and told the first teacher he met, "I was nervous, but now I'm okay." and proceeded to tell Chris, "You can go home now."

And despite the fact that his participation in group activities was a little spotty without an aide to guide him, he seemed to enjoy the experience, going gladly each day and performing in the Friday afternoon plays each week.

I appreciated the fact that no one at Glitter and Razz seemed to mind too much when Ben decided that he just needed to lie down on the stage or walk in circles, completely take over the narration, or provide unscripted foreshadowing.

"Don't worry! You're going to be saved later by an airplane!" Ben shouted from offstage to a character who had just been captured by an evil dog.

Ben, as a warrior, confronts the ice snake and saves the princesses

This was also a summer of saying "good-bye" and big, scary changes.

Ben was processing his departure from the two schools he had attended for the last three years in direct and less direct ways.

"Are we ever going to go back to Growing Light and Tilden again?" he asked, as the finality was hitting him late this summer.

"Maybe someday, just to visit." we told him.

And one night, he cried and cried, but in a controlled having-a-good-cry way that's unusual for him.

He kept putting his beloved Monkey in the garbage can and saying:

"I'll miss you so much. I love you so much. But now it's time to say goodbye."

Monkey didn't actually stay in the garbage permanently, but I think it was Ben's way of working through his sadness - through a kind of performance - about all the goodbyes that were happening.

And last night, when I reminded him that we wouldn't be hanging out with him at Kindergarten, but dropping him off, he started to cry again.

"I don't want to go to Kindergarten."

"What do you think will happen at Kindergarten?"

"I'm worried the classroom will be too noisy...I'm worried the classroom will be too busy...I'm worried the classroom will be too scary."

He cried for a long time, but he was able to listen and process with me and something must have seeped in, or he was able to work through a lot of his anxiety because this morning, he didn't fuss or stall or cry one bit.

We all got in the car and headed to the moon.

I mean Kindergarten.

And when we got there, Ben checked out the books in the classroom and must have decided it was okay.

We started to leave and as I was heading out the door, I blew him a kiss and he jumped up.

"Wait!" he yelled.

Uh oh, I thought. Here it comes.

"I forgot to hug you!"

And we hugged, and Chris and I left and walked together across the blacktop, across the surface of the moon, and headed home.

Thoughts on the film Adam

2009-08-24T14:14:00.001-07:00

I want to share some thoughts on my experience of seeing Adam, the new film about a young man with Asperger's who enters into a romantic relationship with a neuro-typical woman.

Spoiler alert: If you're planning on seeing the film and don't want to know too many plot points going in, I suggest you skip this post until after you've seen it.

I was trying to imagine how someone might react to the movie if they were just out to see a romance and didn't have someone in their life with the same condition as the main character. And I found it difficult to parse my reactions to the film as a movie-goer versus my reaction as the parent of a child with Asperger's.

Even though I couldn't connect much of my own goofy, often over-enthusiastic child to Hugh Dancy's rather mannered and serious Adam, I was really quite moved by the film and especially by Dancy's performance.

He seemed to bring out his character's intelligence and tenderness rather than simply focusing on the quirks or anxiety or odd behavior.

But just stepping back and looking at the structure of the story, the fact that Adam had Asperger's was not necessarily essential to the basic plot outline.

An unlikely romance between people who experience the world in very different ways is well-tread ground in movies.

Adam could have been a foreigner or refugee, from an entirely different culture, speaking a different language, struggling to understand and be understood. Or how about an Iraq war veteran with severe PTSD that forces him to develop odd rituals and coping behaviors to avoid flashbacks or panic attacks?

It still works.

The point is that Adam's behavior makes perfect sense to him, while it appears confusing or off-putting to others. Asperger's is one of several traits you could give someone in a movie to drive aspects of a plot.

And maybe in the future, we won't need to have "Asperger's movies" but instead we'll have characters in whom we recognize aspects of the spectrum, because they are necessary for the character and storyline.

(I think my favorite "spectrum moment" in any movie is actually in Diner, when Daniel Stern chews out Ellen Barkin for filing his record albums incorrectly.)

Hugh Dancy gives a great performance under pressure to play a person with Asperger's as if there's one type of person with Asperger's.

I'm not qualified to judge if his performance represented AS accurately to adults who actually live with it, but at least one blog post I've read - Sandy at AspieTeacher - says he got it right without being condescending.

And in general, it holds up pretty well as a genial bittersweet romance, and thank goodness no one cast some actress like Kate Hudson or Katherine Heigl as the love interest.

But my attempt at movie criticism doesn't go much farther than that because I was mostly watching Adam with my parent hat on.

As I watched Adam face a number of difficult hardships - his mother and father are dead, he loses his job, he struggles in a romantic relationship - I could not help imaging my own son as an adult someday and shuddering at the thought of him having to cope with such adversities.

And along the way, I found myself wanting to leap through the screen and shelter Adam the way I run into Ben's room when I hear the rumblings of a meltdown. Seeing his character in a state of emotional turmoil set off my "on alert" mother response.

And what certainly didn't help my critical distance was that Adam's freezer is stocked with the exact same brand of macaroni and cheese that Ben eats exclusively.

(Maybe Amy's Kitchen needs a new tag line: The official Mac and Cheese of Aspies!)

I kept feeling frustrated with his love interest, Beth: how insufficient her support of him was and how limited her understanding of him felt to me.

Of course, she's bound to be confused at first. Sure, this improves as she begins to know Adam, and Asperger's, better. But even after we see her character read Pretending to Be Normal, a well-regarded first person account of AS, she kept committing what I saw as clueless blunders.

My critical faculties non-operational, I wanted to grab her through the screen and say:

"Really? You're going to take him to a noisy restaurant with a club atmosphere on Halloween? That's a terrible idea. Take him to a nice quiet neigborhood restaurant and phone ahead for a booth in the back."

"Don't take him to a party to meet your friends for the first time. Give him a chance to meet them individually, in a less socially-charged environment. Maybe meet at a museum."

But I'm really not being fair. There were several moments in the film, for example, where she thoughtfully and non-judgementally rephrased what she was saying or asking in a way that Adam could understand. And I don't blame her for being afraid after witnessing a full-fledged adult meltdown.

But my tendency is to overlook these moments and focus on what bugged me.

I suppose that my tsk-tsking of Beth represents my desire for people and the world to adapt to Ben rather than asking him to do all the adapting. And I suspect that whatever romantic interests he brings home, I will disapprove of their ability to really understand and appreciate him.

On the other hand, if Beth had somehow become an Asperger's expert and advocate during the course of this film, figured out how to perfectly communicate with and totally accept Adam, despite their differences, living happily ever after, it would have been SO wrong.

It would have made this the kind of film where the person with a disability or difference - The Other - both is saved by and saves the "normal" person.

Thankfully, the film doesn't do this. In the end, Adam and Beth can't be together. But the film doesn't end without hope.

My favorite moment in the film comes at the very end when we see Adam in his dream job, giving tours of an observatory. He's going into a little too much depth about lenses to a high school tour group and manages to gracefully extricate himself from his ramble when he notices he's lost them.

Before the group of students moves on, their teacher thanks Adam and gives him a smile that seems to say: I think I may know what your struggles are, and I think you're doing great.

And this tiny exchange made the entire movie for me. It left me with the feeling that Adam would find out that there are people who don't think of him as spooky or odd, and that adapting means that sometimes people can meet halfway.

My Wooden Trains

2009-08-23T08:55:00.001-07:00

Unless you have a child who is both 1) an avid collector of Thomas the Tank Engine merchandise and 2) an avid YouTube watcher, you probably are not aware that there is an entire genre of videos that we call the "train collection" video.

In the "train collection" video, young train collectors display and enumerate their collections using pretty much the same introduction, camera angles and vocal cadence.

This genre - or is it a meme? - was started (we think) with a video by a kid whose YouTube persona is Waylon8tor. Countless kids copied it, including Ben.

For a long time, Ben would just line his trains up in his room and narrate his collection in the style of the videos, without actually wanting to capture a video.

But yesterday, he allowed me to turn on the camera. Chris made some minimal edits to cut out a spot where Ben needed to re-arrange the trains and get them in the right order.

So here is Ben's first official entry in the "train collection" genre under his YouTube persona, "accidentshappen99."

Enjoy.

The new June Cleaver? Hint: She's sporty.

2009-08-20T20:45:00.001-07:00

One of the people I follow on Twitter* posed a thought-provoking question awhile ago: Who is the new June Cleaver?

I'm too young to have seen June Cleaver on prime time TV and by the time I was watching her on syndicated afterschool programming, she was already relic of another era. I much preferred Mary Richards or Sabrina Duncan as an aspirational model of womanhood.

But the question got me thinking: is there really a contemporary equivalent? What is today's archetype for the perfect woman?

Nowadays, popular culture tends to poke fun at ideals rather than create them. Reality and talk shows seem to be a continuous pageant of emotional train wrecks. Oprah Winfrey or Martha Stewart might be idolized, but few people's aspirations reach so high that they can actually identify with them.

I was ready to give up on the question and conclude that we were past the era of perfect womanly archetypes, and then it came to me.

In my mailbox.

The Title Nine catalog.

Title Nine, besides being the landmark piece of legislation that prohibited gender discrimination in high school and college sports, is also a women's activewear clothing retailer here on the West Coast.

The photos in the Title Nine catalogs show "real women" rather than fashion models.

At least we're supposed to believe they are real because their hair isn't styled, they wear minimal makeup, and have laugh lines. We are told a bit about each one: names and occupations, aspirations and childhood nicknames, favorite places to surf or rock climb, the location of their last vacation.

We see, for example, "Lida." A lovely 30-something riding a bike in her smart Haymaker vest and Samba long sleeve shirt. We learn that she's a "climber, teacher, master pizza maker and above all else, mother and teacher to her 2 kids." We also read that Lida commutes and grocery shops on her Xtracycle and "takes the simple life to a whole new level. Litte known fact: delivered both her kids at home!**"

Oh, I see. So not only is Lida thin and in perfect shape after having two kids, but she gets regular exercise while reducing her carbon footprint. No doubt that she makes her pizza from local ingredients she gets while biking to the market and look: no C-section scar! She probably also composts.

Wait, no. It's "Elizabeth" on page 47 who composts.

Elizabeth is depicted smiling in a cuddly fleece R&R jacket along side her bins of compost and worms. She also is a mom, a homeschooler and math teacher who likes to cycle.

There's "Alyson" who's training for her first triathalon and Xterra off-road Olympic distance (whatever the heck that is) and "Lita," a nutritionist who "obsesses about good food. Whole grains, sauces, fruits, dairy...you name it!" and loves climbing El Capitan.

For me, the Title Nine-wearing woman perfectly captures the new ideal: energetic and supremely confident, youthful but not inappropriately so, healthy and fit, with interesting hobbies that she can enjoy frequently due to the excellent childcare she has for her beautiful children. She's engaged in saving the world and wants to help people, but most of all, she never neglects her own needs.

And with a wardrobe of pieces like the Everywear Skort and the Back-to-Basics Zen top, she always looks great without even trying.

Unlike June Cleaver and her high-heels-and-pearls-in-the-kitchen sisters, the Title Nine women are not constructed by those old pesky Patriarchal Forces of Oppression. Nope. These new versions of womanly perfection are created by women and for women. Regardless, they still seem like just another impossible benchmark we can punish ourselves for not meeting.

Swear off high-fructose corn syrup. Sneak in a workout before the kids wake up. Take a class to learn something new. Train with all your girlfriends for a marathon. Make sure you look hot for date night. And never, never NOT have a nightly family sit-down dinner.

So why do I love this catalog, anyway?

Its aspirational brand strategy with its photos of women happily walking to yoga class works its intended magic. The trained consumer in me says, "If only I were..." as I browse the pages of the catalog imagining myself browsing the farmer's market in the Vagabond sweater and the Perfection pant.

But I know that I'm simply not the Title Nine woman, and on good days, I'm perfectly okay with that.

But what if "Christa" was featured in the catalog?

Let's see. I'm imagining lying on my sofa wearing the Izzy pant and the Synergy T-neck sweater:

Christa loves to watch Top Chef and order take out. She occasionally walks on the treadmill until she gets that shooting pain in her left hip. She lets her son read comic books at the dinner table and all in all, she'd rather be napping.

_________________

* Unfortunately, I don't remember who it was. Was it you? Let me know so I can credit you!

** I find it hard to believe that this is a "little known fact." More likely it's something that Lida announces to strangers while she's parking her Xtracycle at the grocery store.

Excessive Force

2009-08-18T22:54:00.001-07:00

This is a guest post by my husband Chris.

Christa has written previously that "time out" sometimes meant holding Ben's arms, and even holding him down on the bed until he was calm.

As Ben grew older and stronger, the challenge of keeping him from hitting, scratching, or kicking required the application of greater force. In practice this meant lying him face down on the bed, my one hand clasping his wrists together behind his back, my other hand holding his ankles.

Thankfully I rarely felt I had to resort to this maneuver, because I hated to use it every time. I hated the rage inside Ben that made him try to hurt us. And I hated my own choice to pin Ben down as if he were a wild animal.

But then he would provoke me to give him time outs. And soon he started asking for them. With help from his teacher we came to understand that the physical pressure of being held immobile was calming to him when he was feeling out of control.

Until the day it wasn't enough. I don't even remember the trigger any more. Ben had already broken my glasses and scratched my face. Holding him on the bed wasn't working--he was thrashing his head, trying to bite me, and wriggling his feet out of my grasp so that he could kick himself free. I was frightened I was losing control of him. Scared that he would hurt himself or both of us. And I was angry. Angry this was happening to our family. To me.

I scooped him up in a bear hug and carried him into the hall.

"No, Daddy, no!!!" he screamed.

I laid him down on the cold hard wood floor. I knelt on his legs, pinned his arms behind his back, and turned his face so that all he could see was a blank wall. And I held it there.

"No, Daddy, no!!!"

From his bedroom, Christa cried and pleaded with me to let him go.

I cried and said I did not know what to do.

Beneath me, Ben screamed and cried.

And calmed himself down.

When it was done all three of us cried and hugged each other. I promised to myself I wouldn't treat Ben that way again.

But then he started asking.

"I need a time out," he'd say.

"Then go stand in the corner," I'd say. "Time out means you stand in the corner for two minutes."

Sometimes this would be enough. Sometimes he would stand in the corner, like a "typical" kid.

But then he would ask again.

"I want a time out when you hold me to the wall."

"That's not a time out," I'd say. "Do you need a big tight squeeze?"

"No. What is it when you hold me to the wall?"

"I did that one time. You were so mad you couldn't calm down."

"Can you show me what happened when you held me to the wall?"

He persisted. I gently laid him down on the floor, and mimed holding him there. Satisfied, he got up, and switched activities.

But later, when he was feeling anxious, he would hit me, flail his arms in the air, and shout "I'm so mad I can't calm down! I'm so mad I can't calm down."

I would try to soothe him with hugs and gentle words. And sometimes that would be enough. But sometimes he would insist, and I wanted to give him what he was seeking without him thinking he had to hurt me to get it.

So I'd hold him to the floor, against the wall, and feel him calm his body down.

I mostly did this by request. Sometimes at moments of conflict or stress, when words began to fail, I would ask him "Are you so mad you can't calm down?" I did not know whether he perceived it as a threatened consequence, or as an escape hatch for his anxiety. I did not know if it mattered.

It has been months since I have held Ben to the wall. Months until a week ago.

He had already pulled off my glasses, and thrown the Wii console to the floor. He was unwilling or unable to respond with words, and he was trying to bite any part of me he could reach.

I lifted him up and brought him into the hall. I laid him down, and held him there, all the while speaking calmly about all the fun things he could do if he wanted: listen to a story, play with trains, watch a show, have a snack.

"Shut up, you idiot!"* he hissed, and tried to bite me again.

Christa sat on a nearby stool and began to cry. She asked if I could move him to a bed, at least.

"Not without him hurting me," I said sadly.

Ben stopped struggling.

"What did you say?" he asked.

"I said I thought you might hurt me if I try to carry you to the bed."

"I'm sorry, Daddy." Ben said. All the tension was gone from his voice. And, I quickly realized, his arms and legs.

I let go of him, and he stood up.

"You're my best friend, Daddy." He gave me a gentle hug. "I love you guys."

He walked over to Christa, who was still crying. "I'm sorry, you guys. I love you."

And with that, the incident was over. Something--perhaps the sound of Christa crying, or perhaps a realization that he could really hurt me--had flipped a switch inside him.

He walked out to the living room to read his books.

*Language thanks to a variety of G-rated Disney entertainment.

________________

Post script:

We're fortunate that these kinds of incidents are fairly infrequent and relatively brief. But any time we have to physically restrain our son it leaves us, as Chris describes with utmost honesty, emotionally wrung out and shaken.

I'm hoping to hear from other parents and caregivers about how you keep everyone safe in the midst of meltdowns and rages, how you handle your own emotional response and how you have helped your children learn non-agressive responses to overwhelming emotions.

Imagination / Perseveration

2009-07-31T18:26:00.001-07:00

We recently went to a birthday party for one of Ben's classmates at Pump it Up.

And as every parent of a child under ten who lives in the Bay Area knows, I'm not talking about an Elvis Costello song or an early-nineties SNL sketch.

I'm referring to Pump it Up "the inflatable party zone," an ingenious franchise that converts ex-warehouse space into great, windowless kid casinos filled with various types of gigantic inflatable structures.

They are enormously popular for birthday parties and kids love jumping through obstacle courses, sliding down giant slides and bouncing around like crazy for 90 minutes before being herded to a side room for pizza and cake so the next party can start bouncing.

Being at Pump it Up is the closest a five year old comes to being at a rave. It's a whirl of motion and sound, chaotic and very loud. They always seem to be blasting 80s pop, as if the teenagers who work there are trying to pick an appropriate playlist for the mostly white, 40ish parents.

Despite the sensory overload, and perhaps because of it, Ben loves Pump it Up.

The last time we were there, I observed something interesting about one of the ways he copes with environments like this that can be just a little bit too much fun.

Here's how it all went down:

10:00 a.m.

Arrival. Ben happily and confidently runs off with a pack of NT classmates who are circulating amongst the inflatable structures in the first room. (Yes, there are TWO rooms at Pump it Up.) He's barely checking to see where I am. He's laughing and shouting to his friends, having a great time.

Ben and a few other boys joyfully improvise a game that seems to combine keep-away and dodge ball. One mom asks me about Ben's "special school" and I try to explain about Asperger's and social deficits. I detect a look of incredulity on her face as she glances over at him.

10:30 a.m.

Now Ben's attention shifts to me. "Come with me, Mommy!" and we're off, over the obstacle course together and down the slide. He wants to incorporate some version of The Little Mermaid into the jumpy house experience. He's still aware of the other kids, but very focused on me and our story. The jumpy house is really a ship being tossed by a storm.

It's all very exciting.

11:00 a.m.

Thirty minutes until pizza and cake and now Ben's imaginative play has changed into something different.

He's still thinking about The Little Mermaid, but instead of acting it out, he is insisting - with a degree of panic - that I recite the lines of various characters with him. All the while are were going up the stairs of a giant slide and sliding down, over and over and over.

"Can you be Ursula?" "Can you be Eric?" "Can you be Ariel?" He's feeding me my lines, shouting back at me as we climb up the bouncy staircase. This gigantic, ridiculous slide is no more than a route we're taking on a walk together, rather than the entertainment itself.

I'm exhausted, a little anxious. I keep looking at my watch, listening over the Hall and Oates song on the speakers for the whistle that means it's finally time for pizza.

_________________

Reflecting on what happened, I think that when stimulation built up to the point of overload, Ben's imagination turned into perseveration: a way for him to shut out some of what was coming in and exert some control over his experience. And he was enlisting me in this version of stimming.

I've seen him do this before, many times. But seeing him go from at ease and engaged to rigid and demanding allowed me to see it much more clearly.

Ben's ability to engage in imaginative play is a huge and somewhat unusual strength. He seems to defy clinical literature that suggests that individuals with ASD:

"demonstrate little or no imaginative play...and present deficits in spontaneous imaginative creativity and pretend play."

To the contrary, Ben loves imaginative play and is good at it - albeit, a bit idiosyncratic at times.

But when imaginative play becomes a way to escape from the world rather than engage with it, is it still creative and expressive? Is it still play? Or has it become stereotyped, repetitive behavior?

And does it matter?

We all resort to things that give us comfort and make us feel in control when we are overwhelmed. I eat carbohydrates and make lists. Ben's self-calming strategy is narrative.

From the time he was tiny, he would lose himself in books, recite long stories by heart the way some people sing to themselves, and he now makes up his own elaborately constructed tales of trains and knights and various Disney mashups, or furnishes improvised narration during a movie.

And whenever he's telling stories, or reading them, or listening to them, or watching them, you can probably bet that he is calm and happy.

So in these situations when he demands that we script together, I think Ben is saying to me:

"I need to go somewhere else right now. Let's escape from here."

"Let's create our own world where I know what you'll say and where I'll decide what will happen next."

"Let's be Ariel. Let's be Eric. Let's be Ursula."

"Tell me the story."

"Tell me the story."

"Tell me the story."

Processing

2009-07-29T14:40:00.001-07:00

All of the advice I have read about responding to tantrums and meltdowns stresses the importance of processing the situation long after the event, when the child is calm and emotionally available to listen and learn from what happened.

And when I read advice like this, I picture a cozy, intimate conversation where the parent and child are talking through how it feels when bad things happen, and how bad feelings are normal and how we're going to try something different next time.

Maybe something that won't result in an "ouch report" in your friend's cubby.

I know how to have this conversation. I'm good at it. I know how to talk in "I" statements and talk about how our bodies feel when we're angry and validate emotional experience and brainstorm ideas.

But as awesome as I would be at this conversation, I've never had it with Ben because he seems absolutely allergic to processing.

This morning, we attempted to talk about a difficult experience that happened yesterday in what we thought was a tender, non-judgemental, parenting book way.

When we do this, or attempt to revisit any kind of difficult event, Ben reacts as if we are pelting him with garbage.

He tenses up his body, shuts his eyes tight, winces, and squirms to get away.

That's assuming one of us is holding him in our laps. If we're not, he'll simply ignore the conversation and walk away.

It's not that he doesn't have the language talk about it. He's got the words now. He can - and will - describe situations where he caused trouble at school in full, grammatically correct paragraphs.

If there's been an "event" at school, when I arrive, it's as if he's been brought in for questioning and he's fessing up: spilling it all to the cops in the interrogation room, leaving out no detail.

Then, for him. It's over. Gone. History.

Trying to revisit the situation seems nearly impossible.

I'm not sure if it's a language processing thing - conversational language is tough for him unless the subject falls within one of his areas of interest - or an emotional thing, or some combination.

So this morning, after watching him squirm and wince as if being tortured, I just handed him this card. He read it aloud and got up from the table and skipped away.

As a hyperlexic boy, he's always been able to process written words better than conversation. Maybe some part of this will hook into his brain like commercial jingles and movie quotes and dialects.

And maybe today he'll say, "It's okay."

Swimmingly

2009-07-14T17:28:00.001-07:00

I know a kid who, upon hearing that he would be taking swimming lessons everyday at summer school, said, chin quivering and eyes welling up with tears, "I don't want to take swimming lessons. I can't put my face in the water!"

Cut to: Four weeks later

He loves his daily, 30-minute Red Cross swimming lesson, and is more confident in the water than I could have hoped after only a month. We've been swimming nearly every weekend this summer and Ben enjoys every opportunity to show us, over and over again, how he can put his head under water.

He even wants to practice in the bathtub.

I suspect things like the feeling of floating, the oddly muffled sound and sensation of pressure when one is underwater are fascinating and comforting to Ben as they are for many individuals on (and off) the spectrum.

My meager hopes for swimming lessons were that he 1) wouldn't refuse to go and that he would 2) take an interest in what the other kids were doing, enough to just get in the water.

Exceeded expectations: Check.

Same kid, new label

2009-07-07T22:02:00.001-07:00

Now that the summer is half over, we now finally have the official letter in hand that tells us what Ben's kindergarden placement will be.

I actually knew several weeks ago when I made an under-the-radar call to the most likely elementary school on the list of possibilities and asked the school secretary if she could confirm that his name was on their Kindergarden roster.

(Note: I'm beginning to collect many bureaucracy survival techniques and one of them is being really, really nice to school secretaries.)

He'll be in an inclusion program, which means that he'll be in a regular kindergarden classroom, sharing an instructional aide with one other child. The inclusion program at this particular school focuses on students who are on the mild end of the the autism spectrum. It's known in our district as the Asperger's Inclusion Program, or ASIP.

We're pretty optimistic at this point that it's going to be a good place for Ben.

What's been interesting is that when I've explained where we're going next year, I got a couple questions like, "Oh, so that's what Ben has now - Asperger's?"

Implicit in the question is that Ben has changed somehow. That he now officially has Asperger's, whereas before he was hyperlexic or "on the spectrum" or autistic. Has he changed? Has he graduated?

What's happened is that he's developed to the point where he meets the school district's very loose criteria for this program: 1) on the spectrum but with typical to above-average academic and verbal skills and 2) no severe behavior problems.

In other words, he'd be bored in a special day class, but he's not ready to be thrown into the general ed wilderness without support.

For the school district, that's Asperger's.

They don't have the resources to split hairs over Asperger's and high functioning autism or PDD-NOS or non-verbal learning disorder or sensory integration disorder.

And that's fine with me right now.

I don't know if Ben "has" Asperger's or autism or hyperlexia with or without a side order of autism. There's no antibody test or MRI or CT scan to pinpoint these things.

I'm just hopeful that the people who run the inclusion program are skilled when it comes to the specific kinds of support Ben needs to be successful in the long run. And I'm grateful that professionals in our school district will sign pieces of paper saying that we get this stuff for free.

But as ambivalent as I am of the labels, as much as I think of the categories as subjective and arbitrary and insufficient for describing a person, there's something strangely satisfying about adopting, even embracing, the Asperger's label.

After all, it's more specific than "on the spectrum" and most people actually seem to have heard of it, as opposed to hyperlexia. And it seems to almost become fashionable (have you noticed how anyone who has ever felt uncomfortable at a party claims these days to have "a bit of Asperger's?")

So, we're still a hyperlexia family. But I'm happy to also fly our new Aspie flag high and proud.

Pre-school graduate looks to the future.

Proud

2009-05-29T11:25:00.001-07:00

A class project designed to teach emotions, displayed at Open House last night, pretty much captures the way we feel about Ben's school year at Tilden as it draws to a close.

My mind is occupied lately with the vast unknowns ahead of us: summer, kindergarten. New schedules. New teachers. New friends. New challenges.

But it's nice to be reminded that we made our way through this year, which once was new and unknown. And landed for the moment on this square: Proud.

Disability and Difference

2009-05-23T12:53:00.001-07:00

The scene is a playground at a school. A teacher who recently had a baby has come back to school to say hello to her class of 5 and 6 year olds.

One boy doesn't look up from his legos when she arrives and only barely grunts with acknowledgement when another adult draws his attention to the teacher.

Another boy runs from across the school yard, gives the teacher a hug, examines her now-smaller belly and shouts, "I'm SO proud of you! You had your baby!"

Which of these boys has a diagnosed communication disorder?

You see the twist coming, don't you?

The second boy in the story is Ben. A child who has an official diagnosis that states that he has a disability: "a marked impairment in social interaction," that interferes with his ability to function in a educational or social environment.

The first boy is one of his typical peers.

I'm not telling you this story because I dispute Ben's autism spectrum diagnosis, or believe that the other boy has some kind of undiagnosed disorder.

I simply want to acknowledge the murkiness and complexity of having - or not having - a diagnosis, a label, or the status of "disability" attached to one's differences.

I do believe that Ben's differences are real and what he has is a lifelong condition, not a developmental phase. As our school psychologist reminded us recently, "It gets A LOT better, but it never goes away. And the impact changes across one's lifespan." Ben will probably struggle his whole life with stuff that is pretty basic for most people.

But like the story demonstrates, his diagnosis does not and cannot define him, and he continues to frequently defy its boundaries.

For Ben, the degree of his challenges - his disability - is directly related to the expectations and norms of the environment in which he operates. And the idea that he has a disability may say as much about his environment as it does about him.

This importance of context and environment is obvious to most parents, regardless of whether their child veers in an atypical direction or not.

For example, Ben's behavior issues are rare to non-existant in his language enriched classroom with a high teacher/student ratio and adaptive teaching methods.

On the other hand, he has more frequent instances of aggression and acting out in the classroom with double the number of children, less structure and a vastly different teaching style.

So does he have a "disability" in one environment but not the other? No. But it's possible to minimize the effects of a disability by changing the nature of an environment.

For example, what if elementary school classrooms had seven or eight students in a classroom rather than 30?

What if every teacher received rigorous training in adapting curriculum to a variety of different learning, communication, sensory needs?

What if every child at every level had age-appropriate education focused on social and emotional development woven into the day and into the curriculum? Imagine if this had as high a priority as reading and math and - gasp - standardized tests.

I suspect that in this kind of environment, it's less likely that Ben's differences would be viewed as a disability or that he would need "special" education.

I suspect a lot fewer students, especially those who perch on the mild end of the spectrum, would need "special" education.

Maybe there are so many students who qualify for special education services and get labels attached to them partly because our public school classrooms and teaching methods are often a poor match (if not intolerable) for too many children.

What if we could improve the environment for all children - for those with official diagnoses and for those without, for those who struggle for all sorts of different reasons that don't have a corresponding checkbox on an official form. Not just for kids with disabilities but for the countless kids who who find a way to muddle through and get by, but possibly never thrive.

Where does the disability reside? With the person who manifests differences, or with a system that's too rigid to accommodate them?

Thoughts (not feelings) about empathy

2009-05-19T21:52:00.001-07:00

I’ve been thinking a lot this week about empathy.

Maybe it’s because of this article on a new theory that people on the autism spectrum experience the feelings of others so deeply and intimately that they are overwhelmed and as a result, tune out or go inward.

This contrasts with the common belief that autism causes individuals to be entirely removed and unaware of others’ feelings, or to lack empathy.

And maybe it’s because of all the talk in the news about the Supreme Court nomination: President Obama’s statement about wanting to pick someone with “empathy” and the various media conversations that followed.

And maybe it’s because of John Dickerson’s article on Slate called The Logic of Empathy: How Obama is Like Spock. He reflects on the ways in which the president exhibits empathy and how that's not necessarily inconsistent with his famously cool, analytical and perhaps even Spock-like demeanor.

And it’s definitely because I’ve watched Ben in situations where he has shown he is developing the ability to anticipate and imagine what others might be thinking, which is one component of empathy.

But back to that autism article for a moment. Because I have a quibble.

I completely buy the premise that this strong response to emotional situations is not uncommon for those with autistic traits. I've seen it with Ben lots of times.

For example, we occasionally let Ben try out a violin that belonged to my great-grandfather. Last night, he became upset that I had repeatedly reminded him not to touch the bow hairs, and he yanked it to show his anger. My sharp and clearly emotional response (to almost having a 100-year old violin thrown across the room) triggered a now-infrequent robot-rampage-style meltdown.

I know that his response wasn’t just because I set a limit; it was how I lost my composure when I did it.

However, I’m not so sure I would, as the article suggests, call that “empathy.”

I don't think of empathy as feeling the emotions of others; and certainly not developing strong discomfort or anxiety in response to the emotions of others.

It seems like empathy refers to the ability to place oneself in the mindset of another to imagine and predict how they might behave, how they might feel. This is an analytical activity, a sort of detective work, and it may or may not elicit our own emotions.

Empathy is useful. It helps us make better decisions, respond to others’ needs, and alter our behavior based on what others might be feeling or thinking.

But being fearful and overwhelmed emotionally by the perceived feelings of others isn’t necessarily analytical, nor is it useful. And judging from the comments on the article from adults on the spectrum who've experienced this, it certainly doesn't sound like much fun.

When Ben is using his emerging “theory of mind” - or empathy - he is in control of the situation. When he is reacting strongly to others’ emotions, he is not.

An example of empathy is when Ben asked my mom to leave him alone in his room with his trains, but sweetly complimented her as she was leaving, saying, “Grandma, I love making cookies with you.” He predicted her disappointment and decided to soften the blow with kindness.

Contrast this with when Ben once hit another mom (a stranger) at a playground when she sharply and loudly reprimanded her child. I would not classify this as empathy for the other kid.

I don’t see Ben’s atypically slow emergence of empathy and theory of mind and his tendency to react with anxiety to the emotions of others as mutually exclusive, as the article nearly suggests.

But I do wonder if they might be related.

As the cognitive, analytical ability for empathy develops, does the overwhelming un-separateness of others’ emotions fade? And can we help that process along if we understand that these tendencies can be translated into strengths?

To go back to the Star Trek analogy, can we encourage a modified Spock rather than Deanna Troi?

(And really, wouldn't you rather go into battle with Spock than an Empath anyway? “Pain! I’m feeling pain, Captain!”)

Ultimately, that’s what I want for Ben: for him to be able understand another’s perspective – with compassion - rather than to be so fearful and overwhelmed by strong emotions that he has to shut down or act out.

Or to borrow from John Dickerson’s article, empathy might not be Bill Clinton’s “I feel your pain” as much as it is Obama’s “I see your point.”

Disneyland. Really.

2009-05-14T10:07:00.001-07:00

Yes, it's true. We took Ben to Disneyland.

I could not have imagined doing this a year ago. But Ben's ever-increasing flexibility, his growing tolerance for noise and commotion, and (especially) his love of Disney movies and characters made us reasonably confident that he was ready.

We knew that it was a bit of a crapshoot, but the odds felt like they were in our favor.

And in fact, he did great.

It might be partly because Ben is a kid who can find as much joy in running his fingers along a textured yellow line on the ground as he does on an elaborate amusement park ride.

To sum it up, I would describe our trip as:

60% exhilaration...

40% perseveration...

and zero meltdowns.

And those are some pretty good numbers.

Teeth minus one

2009-04-30T14:02:00.001-07:00

This past Sunday, I saw Ben fiddling with one of his teeth when suddenly he was holding it in fingers.

I'm not sure which one of us was more shocked at the slightly bloody gap in his mouth. I wasn't expecting him to start losing teeth this early. My first thought was that he had knocked a tooth out by accident.

His dental precociousness shouldn't come as a shock. This is a kid who got his first tooth at four months.

Yes, ladies. Ouch.

I was amazed at how quickly Ben progressed through shock, panic, and sadness to curiosity:

"No! I don't want my tooth to come out!" "Put it back in!" "Where is my tooth? Don't lose it! I want to hold it!" "Will another tooth grow in?" "Where's my new tooth?"

I found a tiny box for his tooth and in about fifteen minutes, he was happily playing again.

What's astoundingly lucky for everyone is that we had just rented an Elmo's World video that includes a "Teeth" segment. It features Andrea Martin as the voice of the Tooth Fairy, explaining the whole lost tooth ritual.

He's also seen a Yo Gabba Gabba episode about teeth that features Amy Sedaris as the Tooth Fairy.

So thanks to television and two superb comic actresses, Ben knew what to expect.

We acted out the Tooth Fairy visit several times that day, with the little box and a quarter. But when bedtime came, Ben was not quite ready for a visit from you-know-who. He wanted to keep the tooth in the box on his dresser rather than put it under his pillow.

Every night since then, he asks, "Where is my tooth?" I show him the box and ask if he wants to put it under his pillow so that the Tooth Fairy will come.

"We can ask her to leave your tooth and not take it with her. Do you want her to come tonight?"

"No. I want her to come a different night."

Five days later, and the tooth is still on the dresser.

Yesterday, Ben asked, "Is the Tooth Fairy real or pretend?"

I stumbled around for a bit and settled on telling him that the Tooth Fairy is real if he wants her to be real. And that the Tooth Fairy gets busy sometimes and when that happens Mommies and Daddies help her out.

He skipped out of the room. That was enough for him for now.

Until the next tooth, which is now wiggling away next to the little pink gap in his smile.

Project Spectrum: Strengths of Autism Shine Through in 3D

2009-04-28T15:07:00.001-07:00

When Google created free, web-based 3D-modeling software called Sketchup, their intended audience was probably people like architects, landscapers and interior designers.

But it turns out that Google was getting a lot of phone calls and emails from families of kids with autism explaining how much their children loved using it.

Google looked into the phenomenon and realized that the software actually helps people who are gifted with visual and spacial thinking - as many individuals with autism are - express that talent in ways that pencil and paper might not.

So they created a program to show teachers how to use Sketchup as a tool to inspire and facilitate creative expression with kids on the spectrum.

Ben might still be a bit young to experiment with this, but I'm completely intrigued by the videos and plan to introduce it to him at some point. I think there are some 3D railroad layouts in our future.

(A note of thanks to my new colleague Adam N. in New York for pointing this out to me.)

+++++++++++++

Elsewhere on the interwebz, check out Hyperlexicon fave Paul Collins' most recent blog post for not one, but two click-worthy links.

First, he has a nice article in Cookie magazine about hosting an autistic child at a birthday party (which works well, I might add, as a counterpart to my birthday party essay that was recently resurrected.)

Second, he links to a research article that explains why individuals with autism experience an improvement in communication abilities during episodes of fever. To which most parents of children on the spectrum will say, "I told you so."

Hyperlexia Literary Journal

2009-04-18T19:20:00.001-07:00

I'm very honored to have an essay from this blog appear in the first issue of a new online literary journal, Hyperlexia.

As editor Kerry Cohen writes in her Editor's introduction, Hyperlexia Literary Journal began as a question: What does it mean to be autistic and to love someone who is?

This first issue showcases a mix of poetry and prose, including a piece I wrote in the early days of this blog: To the Parents at Today's Party.

Having the piece selected gave me a welcome opportunity to revise it. In the process, I recognized that I find myself in the difficult situation I describe in the piece far less frequently these days due to Ben's progress, my own acceptance, and the sense of community and shared experience I have nowadays thanks to so many of you.

Instead of rewriting the piece from a place of here and now, self-aware reflection about what the feelings meant back then, I decided to keep - and even emphasize - the cheerful-yet-defensive voice of the original piece since I think it captures an honest moment of emotion that is familiar to most every parent.

I'm very excited to be included along side many other wonderful writers, and I hope you enjoy the inaugural issue of Hyperlexia.

No Myths

2009-04-16T22:17:00.001-07:00

At the dinner table tonight, Ben and I made up a social story about Ben and "N," an older boy at school. We made our fingers into little people that acted out a scene on the placemat.

In our story, "N" was playing too aggressively with Ben and Ben was saying, "I don't like that. That's not nice. I'm not going to play with you right now." Then the Ben fingers walked away.

Small steps on the journey of self-advocacy.

The Dan Marino Foundation, Kent Creative, and the Autistic Self Advocacy Network have created a series of powerful public service announcements called "No Myths."

I have many hopes and dreams for Ben, but by far, the greatest one is that someday, he will stand up and advocate for himself with the pride and strength of the individuals in this video.

Two stories about pie

2009-04-07T22:53:00.001-07:00

Schools take a Spring Break right about now, but workplaces do not. Luckily, Ben's afternoon program provides childcare for all of us who have to keep working while teachers get a well-deserved vacation.

Childcare means a little less structure and routine for Ben and a little more stress for me, wondering how he will fare all day with his 5-going-on-14 typical pals and non-French speaking teachers.

Today started out with Ben walking into the classroom and initiating some brilliant imaginative play, pretending a block was "pie" and offering the pie to his friends and the teacher. He got a long cylindrical block out of the pile and announced, "I'm going to use this to roll the pie" and pretended he had a rolling pin.

Then a couple of boys came over and, right in front of me, told Ben they wanted some of his pie and then pretended to give him some pie that they announced, in a mean spirited way, was actually 1) mud and 2) poop.

They are five year old boys and I guess I should excuse them. This is the world of five year old boys. After all, I wasn't expecting them to be talking about credit default swaps.

But to be mean to a kid in front of his mom seemed pretty audacious and provocative, even for five-year-olds. And I spent the morning contemplating things I could have/should have said.

(Best suggestion from a Twitter friend: "Tell them there's no Santa Claus.")

Ben did not appear offended and continued playing. At one point, he gave his pretend rolling pin to another boy and explained to him, "I turned this rolling pin back in to a light saber for you. I know you like those."

It made me want to stand up on a table and shout, "Excuuuuse me! Thoughtfulness, creativity, perspective taking... Hello, people! My kid is more advanced and socially appropriate than any of you snotty little cretins."

But I didn't.

~~~~~~~~~~~~~~

Later, when I came to pick Ben up, it was story time: Harold and the Purple Crayon. I came in just after the part where Harold was finishing his picnic of "nothing but pie."

Ben's hand shot up and the teacher called on him.

"I like pie. I know a story called Samurai Pie. It's on Mission to Mars. That's a show on a DVD."

He looks over at me and doesn't miss a beat.

"And my mom's here. It's a Backyardigans show. Have you ever heard of the Backyardigans?"

Now, Chris and I have discussed the fact that we both were Compulsive Hand-Raisers in elementary school. Each of us was always the one in our classroom desperate to offer our important insights on every topic.

We knew that Ben would follow in our footsteps, but we figured it would be in like, second, maybe third grade. I had no idea he even knew he was supposed to raise his hand before talking and there he was: perfect posture with his arm shooting up like a ramrod.

When the teacher got to the next page, Ben's hand shot up again. She said in a tired voice as if this had been happening since long before I got there, "Ben, I'm not going to call on you until the end of the story."

My heart sank.

"C'mon. Why not? Clearly, none of these kids has has anything to say. Why not call on him?"

But I didn't say that either.

Ben wasn't upset he didn't get to make his point.

Maybe because he seems to be learning that sometimes you get to talk in class and sometimes you don't and it all seems arbitrary or just based on how tired the teacher is, and kids will tell you that they just made you eat mud and poop and laugh at you and you walk away and keep playing and keep raising your hand.

And I guess that's inclusion, in a weird, scary way.

Now who wants pie?

I'm not a warrior

2009-03-23T13:34:00.001-07:00

I'm not a warrior. I'm not battling anything.

(Well, sometimes misperceptions. Sometimes my own exhaustion.)

There's nothing to cure. There's no one who needs to be recovered.

(My son isn't lost.)

That doesn't mean there isn't a lot of awfully hard work to do:

Building up the skills that don't come naturally.

Weaving a safe cocoon and unraveling it bit by bit, sometimes before we feel ready.

Trying each day to keep the scales tipping towards joy rather than towards frustration.

Finding the teachers and others who can help him find his footing in the world.

And that doesn't mean that I, like every parent, don't wish from time to time that my child was different in some ways.

(Like when he's wide awake between 2 and 5 in the morning.)

But this is who we are. This is our way of being in the world. And I'm not at war.

Tilden School to stay open

2009-03-12T09:11:00.001-07:00

Several weeks ago, I told you about Ben's school, Tilden Elementary, and how the school district wanted to close it next year and relocate the students and teachers to several other schools.

Apparently, having too many special needs students at a school violates Federal Disabilities Law. This seems so strange to me.

I understand that the law is intended to prevent students with disabilities from being hidden away and isolated from typical peers. That's a good thing.

But the students at Tilden are anything BUT hidden away. All kids at Tilden - whether they are general ed or special ed - are just that: students. There is a focus on difference rather than disability and that means that every child is seen as being on a continuum of learning needs. Whether he or she has an IEP or not.

Isn't this the ideal? Shouldn't this be the model?

Integration should not be measured in ratios of "how many of these and how many of those."

Integration is about culture. And while the school district should and must examine how to balance special ed and general ed in accordance with the Federal Laws, it's not right to destroy a real culture of integration in the process.

A culture that does exactly what that Fedral Law was designed to promote: maximize success for ALL students.

And this is what I had the opportunity to say at the Oakland Unified School Board meeting last night.

Dozens of us: parents, teachers, children and community members stood up for Tilden and asked the school board to postpone the closing and relocation of Tilden until the district could implement a better planning process that includes teachers and families.

It was inspiring to hear so many people spoke passionately about the wonderful culture of this school and hear what Tilden has meant to them.

The school board heard us. They voted unanimously to postpone the closing of Tilden for one year.

As I said in my previous post, since Ben's IEP recommends a full-inclusion program next year, we won't be staying at Tilden. This is only because Tilden does not have any classrooms that are technically inclusion classrooms, having almost exclusively general ed students.

However, I hope to continue to work with the parent organization to get the word out about Tilden, increase general education enrollments and hopefully show the school board that Tilden's model is viable.

It needs to be there for the families who come after us. For the shell-shocked, post-diagnosis, worried families who have just been told their three year old is autistic, that he will be in special education and oh, by the way, that he will ride on a bus. By himself.

Those families need a safe, welcoming place with loving teachers to know that it's going to be okay. More than okay. That it's going to be amazing. Because that's what Tilden is. Amazing.

Train Story

2009-03-09T17:55:00.001-07:00

Here's a blogging tip: Never write in a public forum that your child is no longer doing something, especially with an air of celebration. He will immediately start doing it again with a vengeance.

I had written a few weeks ago that Ben was no longer playing with trains obsessively, but now they are back, and it seems that every room in the house has either train tracks or train catalogs all over the floor.

Ben studies the Thomas the Tank Engine catalogs night and day as if he's doing doctoral research. He takes them everywhere. This morning, he missed spitting his toothpaste in the sink because he wouldn't turn his head away from his catalog.

He plans his expanding empire, telling us, "I wish I had the Mountain Bridge. I wish I had an Action Canyon Adventure Set. I wish I had Toby's Windmill." Or suggests, "Hey, I have an idea! We can go to Target today and bring home a new engine!"

He can occupy himself for such long stretches at a time that I worry sometimes that I'm not engaging him, forcing him to interact, doing Floortime stuff.

But my gut tells me that, since he's in a social setting for six or more hours a day, he deserves a break. I want home to be the place where it's safe for him to disappear into his trains (or whatever special interests he develops) when he needs to.

It used to be that Ben would recite Thomas the Tank Engine stories while we was lining his engines up or pushing them around on the tracks or stacking them into odd configurations only understood by him. His verbal and kinesthetic activities seemed unrelated except in their theme.

But now he plays with his trains, well, appropriately.

By appropriately I mean that he uses them for bona-fide imaginative play: acting out stories that he makes up himself. While he still peppers his stories with bits and pieces of memorized scripts, his material is essentially his own creation. Sometimes this original storytelling goes on for nearly an hour without interruption.

I've been trying to transcribe a sample of his stories for months, but when I asking him if I can, he says "no" or when I sneak up to him with my computer - court reporter style - he stops self-consciously.

A couple of weeks ago, I sat down quietly with my laptop and started to transcribe his story. This time he ignored me.

After awhile, he looked over my shoulder and I explained what I was doing. He silently read the what I had typed and I could sense the lightbulb going off.

He went back to the tracks and continued the story for a few lines, then looked over my shoulder again to check the accuracy of my transcription. Satisfied, he continued, checking again after a few more lines. When I asked him to repeat a line that I didn't quite get, he obliged. This continued until he ceremoniously announced, "The End."

Here's a small excerpt of the much longer story:

It was a beautiful day on the Island of Sodor. All the engines were working hard, pushing and pulling trucks up and down the line. A new engine had arrived on the Island of Sodor.

"Wow," said Thomas. "I bet he can pull a heavy load."

"Yup," said James. "He’s strong and he’s fast. He can pull a heavy load all the time."

"Well, sort of. I’m not sure," said Thomas.

"Excuse me now, I must get my cars," said Henry.

"These are my cars."

"Wait!" cried Thomas. He coupled up to his coaches and went along, but Henry kept going.

When they reached the forest, they saw the old bump, then stopped. Henry’s truck had bumped him, reeling him toward the old bump.

"Look out," cried Henry's driver. Henry was sunk.

The fat controller came to see Henry.

"You are a very naughty engine."

"I do sir. I can’t sir."

Then Edward put the tracks back on to the rails. "Thanks, Edward," said Henry.

The End.

"I think I have a problem..."

2009-02-23T12:22:00.001-08:00

I've been dreading this inevitable moment:

Ben: Mommy, I think I have a problem at school.

Me: What's the problem?

Ben: It's at [Montessori] not at Tilden.

Me: Okay. Can you tell me about it?

Ben: Well, sometimes J. yells at me "Go away!" I chase him and copy him and he yells at me.

Me: It sounds like that makes you feel sad.

Ben: I feel a little disappointed.

I knew that a few of the kids in Ben's afternoon program have been teasing Ben and excluding him sometimes, but this was the first time I heard from him that he's aware of it.

And I suspect that he's more than just "a little disappointed."

In the short term, we need to help Ben understand that not all kids like to be copied - even though his older cousin accepts that this is Ben's form of hero worship.

In the long term, I don't know how to help Ben understand and deal with teasing and cruelty from other kids. I started working on some strategies with him this weekend, like going to get help from a teacher, or finding some different friends to play with.

Ben has got some of his own ideas as well.

"If a friend is teasing me, I can tell him to stop or kick him."

Okay. Partly right.

I think real root of my dilemma is that I don't think Ben fully understands the ways in which he's different from the other kids, and right now, there's something really great about that.

But as he grows up, I want Ben to be self-aware and conscious of his strengths and challenges. I want him to be proud of his abilities and his identity as a person on the autism spectrum, understanding that there are aspects of life that will be hard, but that he can learn and adapt.

So when do you start that conversation? I get what that conversation might sound like at 10 or 12, but what about at 5? It doesn't feel like something I should bring up before he begins to discover it and talk about it on his own, as painful as that process may be.

Ben's differences aren't physically obvious - such as tics or stims - and they are hard to put into words a 5-year-old with information processing difficulties can understand.

For now, I just plan to take things one issue at a time and keep addressing some basic social skills, hoping that the deeper understanding will unfold naturally, over time.

I'm looking for your guidance on this one, friends.

How have you helped your child with issues of teasing or exclusion or being different? When and how did you help your child develop self-awareness and self-advocacy? How do you talk about your child's differences without allowing him or her to become defined by them?

Spectrum Siblings

2009-02-15T09:10:00.001-08:00

I'd like to introduce you to one of my favorite new blogs, Spectrum Siblings, written by Cale. He's a college student with Aspberger's who is studying Behavioral Neuroscience and Social Psychology. Or as he puts it, "I'm majoring in autism."

I think of Cale as a Sherpa guide for spectrum families. He specifically reaches out to parents through his blog, explaining what our kids might be going through from his own personal experience.

He's able to describe in vivid, insightful and often funny detail what it feels like to have sensory overload, or to not know how to interpret arbitrary, unspoken social rules - like knowing which way to go in a hallway to avoid an oncoming person (How does anyone figure that out, anyway?) - or the absurdity of asking a child to name a single favorite color (color for what? a house? a shirt?)

For those of us with younger children who are not yet as self-aware and articulate as Cale, his posts provide a glimpse into what the possibilities of life on the spectrum as a young adult can be.

And those possibilities are pretty exciting.

Please Save Tilden School

2009-02-12T12:56:00.001-08:00

Ben has been incredibly lucky to have spent the past two years in an amazing program at Tilden Elementary School in the Oakland Unified School District.

Unfortunately, Oakland wants to close Tilden next year and distribute the students and teachers to four under-enrolled schools.

Tilden serves children from pre-school to third grade. It's unusual in that 80% of the students have special needs and about 20% of the student body are general education kids from the surrounding neighborhood.

The schools is a model for inclusive education. The special needs students are fully included in the life of the school, and the regular education students learn from a very early age to accept and embrace the differences in their classmates as a fact of life.

Some teachers have a double credential in special education and general education and they teach integrated classes with a mix of special needs and typical students.

There are also special day classes - like the Language-Enriched Pre-K class Ben attends - that focus on specific special needs.

When Ben walks the hallways, every adult knows him and says hello. Teachers who have never had him in their classes stop me on campus and tell me about a funny thing he said. All of his teachers have been extraordinary and feel like members of our extended family.

The general education students do well here too. Probably because the teaching staff is so savvy about what it takes for all children, regardless of their learning style, to succeed. The second graders scored 799 on their API numbers this year. The state considers 800 to be the score of an excellent school.

But its an expensive school to run with such a high population of special needs students. The facilities are run down and in need of repair. The district, like every public institution, is facing difficult trade-offs.

Tilden is a school of underdogs: special needs kids, but also the general education population. They don't come from one of the affluent hills neighborhoods, but rather from more disadvantaged areas where parents are often working more than one job to make ends meet.

With fiscal shortfalls and facility code problems, the district thinks that closing this small school and shuffling students around is the best option.

But it would be such a shame to lose this little diamond in the rough of a school: run down on the outside, but so full of heart and compassion and dedication on the inside.

Our family will be okay. It appears that Ben will be placed in one of the full-inclusion programs in a regular kindergarden next year. But I'm worried about the other families, and the families that come after us that won't have Tilden as an option.

So I'm working with the PTO to fight against the closure of Tilden and I have a request for you, especially those of you in the East Bay.

We're establishing a Friends of Tilden list. Community organizations, educators and families (alumni of Tilden, especially) can sign a letter to say they support the PTO in our opposition of the closure. It's a small thing, but maybe the school board will see that this is not just a small group of difficult moms, but a larger community.

Email me or leave a comment if you or anyone you know might be willing to sign up as a Friend of Tilden. Perhaps there's a small chance we can keep this wonderful school alive.

Paul Collins (and me) on The Big Bang Theory

2009-02-09T16:47:00.001-08:00

Paul Collins recently wrote an article on the CBS sitcom "The Big Bang Theory" for Slate Magazine.

I thought it worth sharing for a couple reasons. First of all, if you have not read Paul Collins' book Not Even Wrong: A Father's Journey into the Lost History of Autism, stop reading this right now and go either order it online or, if you're concerned about the demise of local small businesses, go out to your favorite independent bookseller and purchase it.

Not Even Wrong is part historical investigation of autism (Collins is a historian and McSweeney's editor) and part memoir of a family coming to terms with their son's diagnosis. The two distinct aspects of the book are beautifully threaded together, illuminating each other, creating a story that is far more compelling and intelligent than the typical parent-autism-memoir.

Previously, I've written about the radio interview with Paul Collins and his wife, Jennifer, that led me to this book.

But, anyway, this article in Slate.

I watched a few episodes of The Big Bang Theory after my parents recommended it. The premise involves:

...the travails of four Caltech researchers... The running joke of The Big Bang Theory is that these guys are brilliant at understanding the workings of the universe, yet hopeless at socializing with...a waitress who lives next door.

But a more subtle theme is that [one of the characters] Sheldon — flat-toned, gawky, and rigidly living by byzantine rules and routines — appears to have Asperger's syndrome.

I found a good deal of it funny and well-written. Clearly, there are a bunch of real scientists and geeks on the writing staff because regular people just could not make up the dialogue, especially the diatribes on Klingon scrabble or quantum physics.

It's fun to see a character on the spectrum, even if not explicitly stated, in a comedy rather than a weepy Hallmark Hall of Fame-type show. It seems to normalize the traits, while at the same time highlighting (lovingly) their comedic aspects.

But, for me, The Big Bang Theory is actually more funny when you're talking about it or quoting it than it is when you're watching it. That's because it's shot live, in front of a studio audience with the laughs "sweetened" after the fact by a laugh track.

For me, the sound of a laugh track helps me understand what it might be like to have Sensory Processing Disorder. The sound is grating to me and makes me feel agitated such that I can't focus on anything else.

Not to mention it ruins what would otherwise be fine comic timing, as lines are "held" unnecessarily for laughs.

If this show were shot and edited like 30 Rock or Arrested Development, with all the quick cut-aways, throwaway flashbacks, and faster, more subtle timing, it might be one of the best shows on TV.

Or, perhaps you could just combine the best of both worlds. Sheldon and Leonard could somehow get hired as some sort of physics consultants for GE, and they would meet Tracy and Liz and Jack, and get caught up in some kind of hijinks and mistaken identity on the set of the late-night comedy show and...

I guess I'll just leave that one to the fan fiction crowd.

Spirits

2009-02-08T20:33:00.001-08:00

Ben was drinking hot chocolate from a small, fancy tea cup that came from my grandmother's china set. When I was a kid, she used to serve me coffee in it - with lots of cream and sugar - and it made me feel very grown up.

I pointed out to Ben that the cup belonged to Edith and reminded him that Edith was my grandma and that Edith was grandma Judy's mom.

"She died a long time ago." Ben added.

"That's right. Before you were born."

The concept of death has just entered our vocabulary and Ben is still figuring out what it means. He experiments by dropping it into conversation now and then.

"She's an invisible spirit."

The idea that people who die become invisible spirits was my first clumsy attempt at a reassuring death narrative, since we haven't yet given Ben a theological framework for the afterlife.

Then, seemingly out of nowhere, Ben asked:

"Does Edith look like Brittany?"

Brittany had been Ben's wonderfully fun and loving aide at his afternoon pre-school, until she recently got a full-time teaching job.

At first I dismissed the comparison as one of Ben's frequent non-sequitors.

Then, I stopped in my tracks and had the realization: Oh my god. He's right. Brittany does look like a young version of my grandmother.

I went to my dresser and checked a photo that my mom gave me for Christmas. It's a portrait of my grandmother in her late teens or early twenties.

The likeness was uncanny.

The photo had been lying face down on my dresser since the night I had unwrapped it.

To my knowledge, Ben has never seen this photo (or any others) of my grandmother. Chris didn't show him. Neither did my parents.

I can't figure out how he made that connection. How did he know about this likeness, one that I had not even realized?

I'm at a loss for a rational explanation.

Maybe that spirit is not so invisible after all...

Brittany with Ben

My maternal grandmother, Edith Johnson

Five Years Old

2009-01-20T23:33:00.001-08:00

Dear Ben -

You are turning five years old today.

You're a big kid now - at least, this is what I keep telling you.

Especially when you continue to insist on eating spaghetti one noodle at a time with your fingers or still ask me to carry your 43 pound self from one place to another.

But you have grown into an amazing big kid, and you do so many things now that I could not have imagined.

It seems like only a little while ago, we were worried about how your imaginative play skills were lagging behind your typical peers.

Now, you create elaborate and nuanced pretend worlds that leave your friends struggling to keep up with your rapid-fire imagination.

Most importantly, you are able to pretend you are 1) firing a laser and 2) falling into lava, which allows you to play with nearly any typical five-year-old boy.

Experts told us that you would probably have trouble showing empathy or strong emotions for others, and that we would have to teach you that over time.

But last week, your teacher described to me how big tears welled up in your eyes when she had to break it to the class that Dr. Martin Luther King - the subject of circle time that day - had died. You told her you wished that the class could gather around him and protect him, led by you with your magic sword.

You hadn't known until then that good people - not just witches and dragons - die, too. And you cried.

Last year I worried our living room would be forever taken over by your Thomas the Tank Engine railway and that you would develop few other interests.

As of today, you haven't played with your trains - really played obsessively - for months. It seems you'd rather act out a story with us, or make up a pretend adventure with action figures (which you now actually play with instead of stacking into various architectural forms.)

The clinical literature on Hyperlexia warned us that although your reading abilities would advance far beyond your years, you would never really comprehend what you read.

But it seems that each day, you are acting out and improvising on a plot line from a book, or generalizing vocabulary from a book to a real situation, showing us that you do often understand and comprehend.

(A side note: You have just become interested in the Magic Treehouse chapter book mega-series, and this week read 3 chapters of your new book aloud on your own, missing only the words "mirage" and "sarcophagus.")

I read that you're not supposed to develop what's called theory of mind, or the ability to anticipate and imagine what someone else might be thinking and adjust your behavior accordingly.

But when I came to pick you up early from school after a recent and unfortunate behavior incident, you saw the look on my face and immediately launched into a description of the event that can only be described as a fast-talking PR spin.

You ended the story with: "...and next time, I'll never do it again and I'll be a good friend and everyone will play together and laugh and laugh and laugh and...I want to kiss you, Mommy."

So much for not understanding what others might be thinking.

They told us that you would prefer to be alone and would have a hard time making friends.

You have friends. Friends who who light up and shout your name when you get to school, friends who have inside jokes with you, friends who hug you. And you hug back.

They told us that kids on the autism spectrum often seem emotionless and have a lack of facial expression.

But you are full of joy and silliness and enthusiasm and all of it shows on your face.

Now, just to be honest with you, it's not all sunshine and rainbows. We have challenges. I am often mystified and stymied as to how to help you cope with frustration and navigate the world.

And I know there are tough times ahead. The gap between you and your typical peers will keep looking bigger in some areas of life. I'm glad you don't realize yet that those boys at school are dismissing your interest in The Little Mermaid, but pretty soon you will.

We'll get through it somehow, because we've gotten this far.

And I still will shout from the rooftop that I love you exactly the way you are, and that the things that make you different are some of the things I love the most about you.

Welcome to five, buddy.

Love,
Mommy

Still Life: Block and Chip with Macs

2009-01-13T12:58:00.001-08:00

Greetings

2009-01-07T11:27:00.001-08:00

Ben likes to help me mail letters these days. Yesterday, I stopped the car so we could both get out and put some envelopes in a mailbox.

He loves to examine all the parts of the mailbox, opening and closing the door to the chute, looking at the keyhole where the mail carrier unlocks the door to get the mail, and informing me about the general operations of the postal service, as he understands them.

After we mailed our letter and were still finishing our mailbox inspection, another car drove up and a man hurried out to mail something.

"Hi!" Ben shouted and waved at the man.

The man brusquely turned and rushed back to his car, not hearing, or ignoring Ben's enthusiastic greeting.

"Hey!"

Ben shouted and started to run after the man, almost into the street, in another attempt to say hello. I stopped him before he could step off the sidewalk and gently walked him back toward the mailbox.

The look in his face left me heartbroken: confused, sad rejection.

"The traffic noise is pretty loud here. Maybe the man didn't hear you," I offered. "Sometimes people are in a really big hurry and they don't always pay attention to other people."

I secretly wished that something unpleasant befall the man who hurried away, who was unwilling to simply return a friendly hello from a small boy.

Just then, a mother and two older children crossed the street and came toward us. Ben saw his second chance.

"Hi!" he waved a little awkward, pageant contestant wave. "Hi there!" he said to each of the kids. The girl and boy - maybe 7 and 10 - giggled a little uncomfortably at his unexpected enthusiasm.

"Hi!" the mom smiled.

"What's your name?" Ben asked. The mom answered and introduced each of the kids, still somewhat stunned by Ben's uber-outgoingness.

He greeted all of them by name. I prompted him quietly, "Why don't you tell them your name?"

"My name is Ben."

"Well, hello there Ben. It's so nice to meet you. You have a great day, now!"

"Bye!"

We got back in the car, both satisfied that that world was not such a bad place after all.

I wish I could find that woman and her kids and thank them for appearing - like three angels - just at the right moment and treating Ben with such kindness.

I've seen, and been saddened by, the way his joyful greetings are often rebuffed by other children at school who do not know what to make of such unabashed and adult-like friendliness.

I want the world to return his embrace. I want to scold those children for their indifference. Perhaps it's their social skills that need work and not Ben's.

Most of us have encountered adults on the spectrum who are maybe a little too friendly or awkward in their attempts to engage a stranger in conversation. Sometimes we tend to politely ignore them or otherwise extricate ourselves from what may feel uncomfortable.

I resolved to remember Ben's experience and at least offer a genuine smile to the person the next time this happens; some kind of affirmation however brief.

And maybe this karma will be returned in the form of the world saying, "Hello," at least sometimes, to a very enthusiastic little boy.

Dreaming

2009-01-03T11:39:00.001-08:00

Ben has started to be able to describe his dreams.

It feels like a significant development, and I'm surprised that he's often able (willing?) to tell me more about his dreams than about what happens at school each day.

This morning he called me into his room to tell me this:

"Mommy, in the middle of my good dreams, I had a bad dream."

"What happened in your bad dream?" I asked.

"You went to a party and forgot me. I was yelling to you but you were driving away and you weren't listening to me."

I hug him and say, "That sounds like a really scary dream. I would never, ever forget you in real life."

We snuggle for a few minutes.

"Mommy, why weren't you listening to me?"

"It wasn't really me. It was just the mommy in the dream. I will never leave you like that in real life."

A few more minutes elapse.

"Why did you forget me?"

I struggle more to explain about dreams, about the fact that it didn't really happen, but I remember that bad dreams do feel as if they have happened.

It's interesting how emotions that arise from dreams are so real that they continue to resonate even after waking. This must be terribly disconcerting to him.

Then he says, "I need to tell Dora and Boots about my dream. I need to tell Kai Lan and all the Backyardigans. I need to go into the TV and talk to all my friends."

This is a frequent request these days - to go into the TV and play with friends from shows. For some reason, he also believes that a cookie sheet is involved in this endeavor.

The resulting conversation is always a frustrating one for him. He does not want to hear that it's not possible. After all, the commercials show real kids dancing with Dora and the Backyardigans. Why can't he?

I struggle to explain cartoons. He's insistent. He whines and rails against my rejection of his ideas. I feel awful.

Then after a few minutes, it all evaporates - like a dream - and he saunters happily out of bed.

The Power of Play

2008-12-11T19:13:00.001-08:00

I attended a great conference last week sponsored by Autism Social Connection here in San Francisco: Peer Socialization for Children, Teens and Adults on the Autism Spectrum (Fostering Friendships and Imagination).

A number of speakers presented their work with a variety of types of Integrated Play Groups, a concept pioneered by Dr. Pamela Wolfberg of San Francisco State University.

These are small groups that consist of typical children (or expert players, in the language of IPGs) and children on the spectrum (or novice players) who participate in activities that are designed to promote motivating, joyful play.

The speakers talked about a variety of types of IPGs, from play groups for young children, to drama groups, filmmaking groups and social groups for teens. In each case, the activities are chosen to be fun and motivating for ALL the participants regardless of social abilities.

The expert players are not there to act as teachers or therapists or tutors, they are there to simply be playmates and friends. Adult facilitators step in only when necessary. They do not direct the interaction, but rather let it unfold between the children.

One idea from this conference that I found particularly interesting is that no matter how much you play with your child, no matter how silly or energetic or childlike you are, you cannot serve the same function as another child when it comes to play.

Children have a culture they create with each other apart from adults and this is a critical part of play and of childhood.

Children on the spectrum have challenges entering into this culture with all its dynamic unpredictability. But for the sake of their overall social development, the IPG model maintains, it is important that they build the skills to do so.

What I learned is that Integrated Play Groups are very successful in giving children on the spectrum an entrance to the culture of play and imagination.

I watched several videos at the conference that were incredibly moving. They depicted several children (who were much more profoundly affected by autism than Ben) who progressed, in a matter of weeks, from being isolated in their own world and anxious around others to children who were laughing, pretending and playing with other children.

There were experiencing joy with other people, and this is what defines - in a large part - play.

The speakers pointed out again and again that individuals with austism, like everyone, have the desire to experience this shared joy. But it's often as if, as presenter Adrianna Schuler described, the "button" to activate the ability has not yet been turned on yet. Play turns on the system.

..........

As I learned all this, it hit me that Ben has been participating in a kind of Integrated Play Group since he was born. Ben's cousins, two boys aged 7 and 4, live nearby.

The older one is a natural athlete, analytical, full of bravado but still loves his blankie. The younger one is introspective, poetic, an amazing artist, mostly quiet with bursts of unselfconscious silliness.

On the surface, they are very different than Ben. However, Ben shares with them so much of the same basic genetic material that they are also very much alike in ways that make them a great play group.

They enjoy playing in silly, physical ways that require very little verbal interaction except funny noises and catch phrases. They all need time to do activities by themselves to regroup. They fall into sync with each other when they spend a day together, alternating between noisy roughhousing and quiet reading time, almost as if their brains are programmed on the same schedule.

Ben's cousins accept his quirks, they know what makes him laugh, they gently disrupt him from his routines, they allow him to initiate goofy activities and they usually go along enthusiastically, they are tolerant when he has trouble coping.

And when it's time to say goodbye, they all shout, "Cousin hugs!" and embrace each other until they fall into a giggling dogpile on the ground.

It's in this safe and accepting trio - our homegrown Integrated Play Group - that Ben has learned to play.

I hope someday, when Ben's cousins are older, they will understand what a profound impact they have had on our lives just by being themselves.

Ben and his cousins play around with the Photobooth application and sing their own version of the "Numa Numa" song.

Dialect Coach

2008-12-04T08:49:00.001-08:00

Many of Ben's most notable talents continue to go unrecognized by the California State Curriculum Framework.

For example, why can't precision re-enactments of Pixar movies be counted as a critical skill for children entering Kindergarden instead of, say, writing with a pencil?

Then there's Ben's ability to pick up dialects and accents he hears and reproduce them flawlessly.

He's picked up a down Maine accent from an audio book of Robert McCloskey's Burt Dow, Deep Water Man, or as we like to say, "Buuuht Dow, Deep Watah Man."

In Scholastic's video adaptation of Lois Ehlert's Planting a Rainbow, he notices (and reproduces) the difference between how Sarah Jessica Parker reads the word "maah-rigolds" with her east coast dialect instead of how I say "mer-igolds" in the midwestern style.

I've caught him attempting to read an entire book to himself with the Caribbean accent of Sebastian from The Little Mermaid: "Den, de train cahs went to de staaation."

I'm trying to teach him to understand these differences instead of merely parroting them. Especially since often he'll inquire, in his own circuitous way, about why some words sound different. My current talking point goes something like:

In California we say "coffee." In New York, they say, "caw-fee."

And now, there's Welsh.

We have a wonderful Doring Kindersley book of Robin Hood read by actor Ioan Gruffud. He gives one of the characters a Welsh accent.

Ben could not get enough of it, asked us to play a section of dialogue about 25 times in a row and laughed until I thought he was going to pee in his car seat.

He's been imitating it for kicks every once in a while, cracking himself up like crazy.

He agreed to do it for the camera last night.

Making friends with testosterone

2008-11-30T23:19:00.001-08:00

One of the best pieces of parenting advice I got when I was still pregnant was from my long-time friend Diane, who already had two kids of her own.

Never, she advised, look at another child who is doing something annoying or disturbing and think, smugly, "Well, at least MY child doesn't do THAT."

Because if you think that, you are pretty much guaranteed that your child will start doing that very thing within the next few days.

As you can probably guess, there's something I've had that feeling about.

Ben has been slow to develop the normal male fascination with fighting and weaponry. I'd love to take the credit and say it's because we provide such a warm and nurturing environment, but I know that it's really because children on the autism spectrum don't automatically pick up behaviors from peers like most NT children do.

No matter what the cause, I admit to a few moments of smugness about it.

But as his social abilities evolve, he now pays a lot more attention to what other boys do on the playground and wants to fit in. This is progress.

This also means that he's starting to learn about things like fighting and good guys and bad guys.

Ben is paying attention to the concept more in videos and stories, too, and incorporating them into our imaginative play.

One of his new favorite activities is to get out the Nerf baseball bats and play Robin Hood and Little John dueling with staffs on a narrow bridge.

He also loves to play the orchestral soundtrack from Disney's Sleeping Beauty and act out the climax where Prince Philip destroys Maleficent.

You can probably guess who plays which part. My death scene, where I sink to the kitchen floor with a wooden spoon in my heart, is quite a scenery-chewer.

I know it's pretty intellectual stuff compared to Power Rangers or Ninja Turtles, but given the fact that this was completely absent from his repertoire until just a month or so ago, it's striking to me.

As Ben's fascination has grown, we haven't made a point of censoring stories where heroes are in danger and villains are vanquished. (Within reason, of course.)

While we don't want to encourage fighting, we also don't want to shield him from the idea of conflict. Experimenting with ideas of conflict, power, and aggression seem like a normal part of childhood - especially boyhood - that Ben is finally getting around to exploring.

I should note that my twenty-year-old self would be horrified at that last statement. As a matter of fact, I think Chris' twenty-year-old self would be pretty disgusted as well.

Back then, we both believed that gender was nothing more than a construction of oppressive social norms. I cringed at - no, railed against - any biological basis for behavior.

But, of course, that was before I had spent time with any actual children.

Unlike my college-age self, I don't believe that you can just raise boys and girls to be happily, perfectly genderless. There is some wiring in there that does make the sexes fundamentally different.

Of course, I don't agree with Freud that "biology is destiny," but maybe biology is "tendency."

Ben likes "boy stuff" (trains, cars, adventure stories, hitting things, bumping into things, crashing things) and he also likes "girl stuff" (Disney princess movies, dance class, playing with a tea set).

Right now, he moves around on the gender continuum with ease. No one (at least not when I'm around) tells him what boys should or shouldn't play with and that's the way it should be.

But I believe that he will have a tendency to explore concepts of his own physical power, ideas of competition and notions of strength in ways that are different than the way his female peers will tend to explore the same concepts.

Unlike my younger self, I'm reconciled to this.

And given his rather circuitous social development (we're taking the scenic route, as Susan at The Family Room says), I'm actually quite pleased to see it.

So every day we're fencing with wooden spoons, bats, plastic golf clubs, and even socks. And we laugh all the while. It feels fun, normal and harmless.

At least he's not interested in guns.

Oh no. I should NOT have said that.

En garde! Chief Inspector Daddy of the French Police battles a rogue in jammies.

Sleep

2008-11-14T14:54:00.001-08:00

If you've landed here because you typed words like "melatonin" and "sleep disturbance" and "autism spectrum" into your search engine, welcome.

I hope I can provide some information I would have loved to have had a couple years ago.

Here's our story of sleep:

Ben slept relatively well as a baby. But after his first birthday, he would go through periods every few weeks where for several nights in a row he would wake up around 2 a.m. and want to be held.

He would just lie in my lap, eyes wide open, for hours at a time.

And though we had successfully used the dreaded "cry it out" method to get him to go to sleep independently, I admit that I did not have the strength of character to go through this exercise at two in the morning. So I would sit with him: waiting, waiting, waiting for him to fall back asleep.

As he grew, the pattern remained: several weeks of sleeping through the night, then four or five (or more) nights of wakefulness.

At times, he would wake up in the middle of the night and ask to read books together or recite stories on his own at full volume and at middle-of-the-afternoon level of enthusiasm.

As he became more verbal and as his imaginative play skills kicked in, bedtime became his most creative and interactive time of the day.

And because he was actually asking me to play with him (gasp!), I often let him stay up way too late just because I was amazed and delighted by his emerging social antics.

But the playing he did at night sometimes had an almost frantic quality to it.

Often, he would walk in circles around a table in his room, reciting a story or making one up. It seemed as if his brain was propelling his legs, or vice versa, and that he was unable or unwilling to turn his brain off.

Eventually, much too late, he would wear himself out and fall asleep.

Desperate and exhausted, I started researching melatonin.

I had read on the Hyperlexia Parents' Network discussion group about how many families with kids on the spectrum used this natural supplement to help with sleep disturbances.

When I couldn't find anything on the internet that suggested any dangerous side effects, I ventured to the supplements aisle in Whole Foods.

Second guessing myself, I decided to ask a Whole Foods employee about it. She looked shocked. "Oh, I would NEVER give this to children. Children make enough melatonin on their own and they don't need it. You should try valerian root instead."

I slinked away, feeling like a terrible parent who was about to give my kid Valium. So I bought the valerian root. It tasted awful and had no noticeable effect.

With renewed self-confidence, I went back and bought the melatonin.

The first night we gave it to Ben, he had a meltdown on the bathroom floor shortly after he took it. I felt awful. I'm drugging my child, I thought. But something kept me from rejecting it outright.

We tried it again, off and on, for several weeks. The effects seemed to get more consistent, more gentle. I tried to compare nights with and nights without and soon a pattern emerged.

It was working.

So: now he takes one 2.5 mg tablet (orange flavored, like baby aspirin) every night after bath time or as he's putting on jammies. Then he plays in his room or reads or listens to a book on tape for no more than 30 minutes, during which time he gets gently and gradually more calm and sleepy.

Then, at some point, he just crawls into his bed - on his own. We turn out the light and - presto - he falls asleep and sleeps through the night.

But here's the thing: I don't believe that the melatonin is drugging him into falling asleep.

I believe it has helped him learn what a tired feeling feels like and what he can do about that.

For whatever reason, I don't think he allowed himself to experience this before. My theory is that the melatonin makes his sleepy feeling strong enough that he can't ignore it, but not so strong that he is completely powerless against it.

The melatonin allows him to be mindful of falling asleep and participate in that process. Case in point: he closes his eyes now BEFORE he falls asleep, which he never did previously.

The best part for me is that I can predict, with some certainty, how long our bedtime routine will take and know that I won't be up for 2 hours, roped into a late-night production of Finding Nemo.

Yes we did.

2008-11-07T19:04:00.001-08:00

So much has been written. There's not much more to say about this week's historic events, but I will tell you our story all the same.

This past Tuesday night, I hugged Ben as he sat on my lap and we both watched as the news networks broadcast that Barack Obama would be our next president.

We had been briefing him on what an election was. "All the grownups get to say who they want to be president. That's the person who is in charge of the whole United States of America," we explained. "And Mommy and Daddy want Barack Obama to be president."

Several weeks ago, Chris had showed me this video on his iPhone by hip hop artist MC Yogi. It's catchy and stylish and makes use of a final line in one of Obama's speeches - a brighter day will come - to great effect.

Ben wanted to watch it, too. He watched it many times in a row that night with his usual fascination for anything that combines on-screen text and rhythm.

So back to Tuesday night. I held him on my lap and pointed to the text on the TV screen. "Barack Obama is going to be the president." He looked at my face and studied my tears and smile, somewhat puzzled at the two appearing simultaneously.

"Barack Obama is going to be president!" he echoed excitedly. Then, quietly and unprompted, perhaps remembering the video or perhaps just wise beyond years said, "A brighter day will come."

Yes, it will. Yes, it has.

Improvisation

2008-10-25T14:54:00.001-07:00

Ben's brain sucks up language effortlessly.

But how he processes that language and how it comes back out is a curious thing.

As you know if you're a frequent reader, Ben can memorize and recite a story he hears just a few times. But he hears in ways that are more musical than verbal.

And sometimes, when he recites it back, it sounds a bit like a bebop jazz improvisation on the English language.

Today's examples:

"The door volk-cument came slithering down the company."

"[Something was] smiggling down the spackle of dust."

Neurons fire in random ways. Language comes back out as music.

This is actually happening a lot more than it used to when absolute fidelity was so important to Ben.

So does this represent creativity and a loosening of rigidity? Or a memory bank reaching capacity and misfiring?

And what's a volk-cument?

My imaginary friends

2008-10-23T22:51:00.001-07:00

I've been posting about what its like to raise a son on the autism spectrum for about a year now and in that time, I've made so many new online friends to whom I feel astonishingly close and connected.

Many of them write their own blogs and I follow their stories and the progress of their kids with rapt attention; cheering triumphs and eagerly awaiting news of how they are moving through their inevitable difficulties.

Many do the same for me and Ben, and I'm thoroughly grateful.

I've had the privilege of meeting some in the flesh, but so many more only exist for me in words and pictures, Facebook status messages, and Twitter feeds.

Yet, I feel more connected to many of them than I do to many people in my "real-life" social circles.

Especially those of you that I follow on Twitter; we keep tabs on each other, make wise cracks, know when we're having a bad day at work or car trouble, know what each other is cooking for dinner and what funny remarks our kids blurt out before bedtime.

But I've now gone a step further with my social networking friendships.

I've become dear, close friends with people who don't even know who I am.

Take John Dickerson, for example.

He is Slate Magazine's chief political correspondent. I read his online articles each week, listen to him (and David Plotz and Emily Bazelon) on the Slate Political Gabfest podcast every Friday, I occasionally read his blog and I follow him on Twitter.

So I know when John is traveling and following the Obama campaign. I know when he's back home with his wife and kids. I know when it's his daughter's birthday. I know that he enjoys playing guitar. I know what he thinks of his hotel room in Indianapolis and when he's put on standby at SFO.

And while I promise you that I am NOT stalking Mr. Dickerson, I think I spend more time with him than I do with people I consider my "real" best friends.

Probably because my "real" best friends are smart and funny like he is. But they are terribly busy - just like me - with their jobs, their kids and just getting through each day.

When I listen to the Gabfest each Friday, I honestly feel like I'm enjoying a regular weekly lunch date with good friends. We laugh, discuss the issues of the day and enjoy each other's company.

When David Plotz's wife and Atlantic contributor, Hanna Rosin, made a guest appearance week I found myself almost giddy, thinking, "Oh - I'm SO glad Hanna is here again this week!"

Except, I can't talk to them.

And they have no idea I even exist.

Then there are my other friends Stephen Metcalf, Julia Turner and Dana Stevens at the Slate Magazine Cultural Gabfest podcast. I have the same fantasy about being their friend, too. Except with them, we talk about movies and books and TV.

And there's Adam Davidson and Laura Conaway and David Kestenbaum and Alex Blumberg. Their new Planet Money podcast/blog/twitter feed gives me my daily jargon-free explanation of what's going on with the economy.

They're all smart. They say the kinds of insightful and witty things my "real" friends would say.

That is, if I was actually spending time with my real friends. But I'm sad to say that this rarely happens anymore.

When I do get together with friends, kids are normally around, and I'm either being vigilant for trouble or just unable to finish a sentence. No one talks on the phone any more - it's never a good time to call someone.

And when did email - beyond asking a quick question - become too much work?

Certainly there's no time for the kind of thoughtful and substantive conversation that I vicariously participate in when I listen to these podcasts.

So this is a way for me to experience meaningful adult conversation and connection in the throes of a very busy, special-needs-child-rearing life.

Feeling a connection to media personalities isn't new. But it might be amplified by the fact that unlike typical mass media figures, my imaginary friends mix their personal lives and personalities into their public work in a way that is natural and casual and unaffected and makes the public artifact BETTER.

Sure, everyone felt close to Walter Cronkite, but no one knew that he had rib eye for dinner or felt a little bit guilty about drinking Starbucks or who he was rooting for on Project Runway.

So, here's a toast to my wonderful imaginary friends: I've grown so terribly attached to you all. Thank you for filling the void until I have time to start that weekly salon with my real friends.

That is, if by that point, they even remember who I am.

Speaking of Autism

2008-10-20T22:04:00.001-07:00

Thanks to my mom for calling my attention to the most recent episode of the public radio program, Speaking of Faith, entitled Being Autistic, Being Human.

Here's the lead in:

One child in every 150 in the U.S. is now diagnosed to be somewhere on the spectrum of autism. We step back from public controversies over causes and cures and explore the mystery and meaning of autism in one family's life, and in history and society. Our guests say that life with their child with autism has deepened their understanding of human nature — of disability, and of creativity, intelligence, and accomplishment.

The show's host, Krista Tippet, interviews a couple, Paul Collins and Jennifer Elder, who have an eight-year-old son with autism. Paul and Jennifer are both writers and each have authored books inspired by their journey as parents of a child on the autism spectrum.

Paul and Jennifer are incredibly insightful, compassionate, and delightful people. Besides being intelligent and articulate on the subject of the autism spectrum, they just seem like really cool people. I kept thinking, "I wish I lived in Portland. I would invite them over for dinner."

Tippet acknowledges at the end of the program that this was the most difficult show she had ever had to edit because the interview was so substantive and interesting. She has decided to make their entire, uncut conversation available as an additional podcast on the show's website.

I was especially moved by Jennifer's observation in which she acknowledges that she has "a happy, healthy son with autism" and how no one would have put those words together in a sentence just a few decades ago.

Listen to the show. I guarantee it will lift your spirits.

__________

While you're at it, check out this Newsweek article that features autism mom and blogger Kristina Chew on the significance and subtext of the mention of autism in the final presidential debate.

The Wordless Stories of Barbara Lehman

2008-10-11T20:12:00.001-07:00

When Ben was first reading, I remember working really hard to get him to engage with the meaning of words he was devouring.

I was never very successful in my endeavor. It was - and often still is - difficult to get his attention when his nose is buried in a book. Especially when he was younger, the words on the page seemed to have a truly hypnotic effect on him.

When I tried to interject simple questions like, "What is that boy doing?" or "What color is the train?" I may as well have been talking to the wall.

Then, by accident, we discovered the power of a book with no words.

We happened upon a book in a children's book store intriguingly called, The Red Book by Barbara Lehman. Like The Beatles' White Album, the book (once you get the dust jacket off) is literally a red book with no other illustrations or text on the cover.

The story inside is a beautifully, simply illustrated tale about a mysterious red book and the magic that happens to the children who find it. The drawings remind me a lot of Chris Ware, another illustrator whose work I love.

The details of the story are wide open to interpretation, and the fact that the story is told without a single written word only adds to the sense of mystery.

When I first showed it to Ben I told him, "This book has NO words. So that means we have to make up the story in our heads." This became my standard talking point and Ben was soon repeating this on his own each time we read the book.

For awhile, Ben wanted me to tell the story the same way each time we looked at the book. Predictably, he was not comfortable with taking liberties with the text - even text that wasn't there.

Soon, he tolerated variations in the story. He even would ask me to read the book back to front, so that it created a completely different storyline.

Most importantly, the lack of words meant that his mind was free, finally, to focus on meaning.

Eventually, he could tell the story himself and would act it out with me using his own words. What better sign that he had moved from recitation to comprehension?

Since then, we have eagerly consumed all of Barbara Lehman's books and always have an eye out for other children's books without words. David Weisner also has several whimsical wordless books; check out Flotsam and Tuesday.

Lehman's Museum Trip is probably my favorite. Besides being a great wordless story, it's responsible for helping Ben discover he has something of a talent for figuring out mazes.

Wordless books are a wonderful way to encourage any child's imagination, but especially if you have or know a young child with Hyperlexia (who probably struggles with comprehension) I suggest you put a few wordless books on your holiday gift list.

Knock, Knock

2008-10-03T15:41:00.001-07:00

Ben has hit a very important developmental milestone: learning to tell knock-knock jokes.

Well, kind of.

The knock-knock joke seems like the perfect form of humor for Ben. The form is the very epitome of theme and variations, a construct that seems to be wired into Ben's brain from birth.

He's always been extremely good at verbal patterns: learning them, deconstructing them and rearranging them. He can substitute a new set of characters in a story, new words into a song, new sounds into a word without missing a beat.

I've been anticipating the day when he would master the knock-knock joke, hoping it would give him another social tool to use with his peers. The knock-knock joke being a key item in the arsenal of any kid bon vivant.

Here's the problem. The first knock-knock joke he learned is, itself, a variation on the knock-knock joke form.

Knock, knock

Who's there

Banana

Banana who?

Knock, knock

Who's there

Banana

Banana who?

Knock, knock

Who's there

Banana

Banana who?

Knock, knock

Who's there

Orange

Orange who?

Orange you glad I didn't say banana?

Funny, right? What's the problem, you ask.

The problem is that in learning the variation first, Ben believes that this is the form of the knock-knock joke. His comprehension and context for what a knock-knock joke actually is referring to is limited. His mind is structural, literal, and so his knock-knock jokes go like this:

Knock, knock

Who's there

Strawberry

Strawberry who?

Knock, knock

Who's there

Strawberry

Strawberry who?

Knock, knock

Who's there

Strawberry

Strawberry who?

Knock, knock

Who's there

Kiwi

Kiwi who?

Kiwi you glad I didn't say strawberry?

We just laugh, rather than attempting to explain, and try again with something simpler:

Knock, knock

Who's there?

Ach

Ach who?

Geshundteit!

He follows up with this:

Knock, knock

Who's there?

Ach

Ach who?

Knock, knock

Who's there?

Ach

Ach who?

Knock, knock

Who's there?

Ach

Ach who?

Knock, knock

Who's there?

Ouch

Ouch who?

Ouch you glad I didn't say Ach?

So okay, I have a 4-and-a-half-year-old Dadaist. But what is truly amazing about this to me is the ferocity of his brain - you just point him at words and he learns, sucking up patterns in language like an Electrolux. Yet somehow, the social context and the meaning ("orange you" sounds like "aren't you") don't register.

We'll keep working on it. I know he'll get it eventually. But even when he does, I think we'll both agree that we actually prefer surreal variations like these:

Knock, knock

Who's there?

Nacho

Nacho who?

Knock, knock

Who's there?

Nacho

Nacho who?

Knock, knock

Who's there?

Nacho

Nacho who?

Knock, knock

Who's there?

Blueberry

Blueberry who?

Blueberry you glad I didn't say Nacho?

Part of Your World

2008-09-18T22:43:00.001-07:00

This is a guest post by my husband Chris, who in addition to being Ben's dad spends weekday afternoons as Ben's 1:1 aide. I asked him to write up this story so I could share with you.

Ben's time at his Montessori school includes an awful lot of what parents of spectrum kids most fear: unstructured outdoor free play. One-and-a-half hours at lunch, and another one-and-a-half hours (or more) at the beginning of aftercare.

He's been doing fairly well considering the sheer amount of time he has to navigate each day, if you're measuring "well" by the decreasing frequency with which he physically assaults one of his classmates in response to provocations both real and unintentional.

But he hasn't been playing much with others.

He'll sit by himself, read a book by himself, or push a trike around the yard by himself (without using the pedals, of course). In the past week he's latched onto a small multicolored basketball, and has been making half-hearted attempts at dribbling. When he joins other kids on the small carpet to play with Legos or plastic zoo animals, he's typically playing in parallel.

On some days the boys try to recruit me for a game of Jail, but Ben's attempts to help me escape or elude capture soon cross over into actual anxiety about why won't these kids let go of my Daddy. So we have to break up the game before much time has passed.

Back in the spring and summer Ben spent playtime with a younger mix of kids, who were more likely to start up a simple game of running and shouting. Ben still enjoys this kind of play, where enthusiasm and volume are more important than roles or storyline.

But this is Pre-K and older. His same-age peers are trying to act a little cooler, a little more mature.

I have to admit I've come home most nights feeling dejected. I had thought the point of paying for the Montessori school was to enable Ben to build on his social skills. To keep him in a community of typical kids he already knows and likes. If he's just going to stick to himself why are we spending all this money?

Then The Little Mermaid happened.

Ben had known the story of course, from the Read-Along Book and CD. And we'd picked up another storybook version after he'd sat for a long time in a bookstore looking at it. But he'd never seen the movie.

So after learning Ariel's song "Part Of Your World" from a Disney Sing-A-Long video, and seeing two more songs ("Under the Sea" and "Kiss the Girl") on another video, Ben spoke up very sweetly this weekend "Mommy, you know what I wish? That we had the Little Mermaid movie."

Mommy, ever the advance planner, pulled the DVD out of a closet and made his wish come true.

So, he sat and watched the entire movie, adding his own narration from the Read-Along story he'd memorized, at all the right spots in between the dialogue.

WELL, you can imagine that this created an opportunity for some small talk on the playground Monday afternoon.

As the kids ate their afterschool snack I encouraged Ben and a couple of girls at the table to share their favorite parts of The Little Mermaid. (We'd had this conversation before, but now Ben had actually seen the movie himself.)

The next day at lunchtime (as reported to me by Ben's early-afternoon aide), Ben and his friend Madeleine struck up the conversation again (without adult prompting). Apparently Madeleine knew the movie well enough that she knew all of Ariel's lines.

Before long the two of them began ACTING OUT THE STORY TOGETHER. And by the end of lunch two or three more kids had joined in.

This is exactly the kind of play we do at home as a family, and Ben was clearly thrilled by it. When I arrived at school he kept asking me where Madeleine was (for a portion of the afternoon the class is broken up into two groups). And heading out to aftercare he followed her in line, starting to tell the story as they walked. He squeezed in next to her on a bench that was already quite full, asking her to sing "Part Of Your World" with him, although she wasn't in the mood.

Wednesday at lunch he and Madeleine were at it again, singing, running, jumping, and telling the story of The Little Mermaid. Another boy joined in who had played the day before, but he (as Ursula, the villain) and Ben (as Eric) got a little too method in the big fight scene, and had to be pulled apart.

Today at lunch he asked Madeleine again to play The Little Mermaid. She said no at first, but when he asked again five minutes later she agreed. And with her and two other kids they played for half an hour.

When I arrived the teachers were effusive about how well he had played with everyone. To this point I still hadn't witnessed it myself.

But in aftercare I discovered that Mads had been talking up Ben's playacting skills with one of the older girls. The two of them ran over to where Ben was eating his snack.

"Ben!" shouted Madeleine. "When you're done eating, will you come play The Little Mermaid with us?"

Ben just squinted at her and offered his all-purpose non-committal expression. "Well..."

"You HAVE to help us! You have to give the directions!"

He agreed, and continued to eat. A few minutes later the girls ran back to where we sat.

"Are you done yet?" They shouted in unison.

"Nope," said Ben.

"Aw, shucks!" They echoed each other.

While Ben asked me what "Aw, shucks!" meant, my brain was busy trying to process the fact that these two girls were WAITING for Ben to come play with them--a type of play that he LOVES. He wasn't simply being included; he was ESSENTIAL.

Ben finished his snack, impatiently zipped up his backpack, and joined Madeleine and the older girl for a rousing performance of The Little Mermaid. Both girls assumed the role of Ariel, and Ben assumed the roles of everyone else: Eric, Sir Grimsby, Flounder, Scuttle, Sebastian, Ursula, King Triton, and the narrator.

At various points in the story where Ariel has no lines, Ben could be observed walking away from the girls, describing (for example) the fury of the storm that tosses Eric overboard, with a flurry of wild gesticulations and hissed consonants. But then he would run back to them to prompt them to speak the next line of dialogue.

At times the girls were distracted by a teacher who was blowing bubbles for all the kids to chase, but they kept coming back and asking Ben to continue, even after he had given up on them and started telling the story of Finding Nemo to himself.

The big finale was interrupted by a group painting activity, so I didn't see Ben attempt the closing kiss--although I did see him engineer a VERY near-miss with the older girl during the moment in the story that accompanies the song "Kiss the Girl". (Close enough that I think she started getting nervous.)

It's likely Mads and the other kids will tire of acting out this particular story before Ben does. So despite my ambivalence towards the Disney media empire, I do now believe that Ben's social development will be aided by his familiarity with other stories favored by his peers (especially, perhaps, the girls).

Tonight as we were leaving I asked Madeleine what her other favorite movies were.

"Snow White," she said. "And Sleeping Beauty."

Done and done.

David Foster Wallace's Youngest Fan

2008-09-14T18:20:00.001-07:00

Yesterday, when I heard that author David Foster Wallace had died and I felt a pang of shock and sadness.

I will leave the eulogies to more talented writers and those who were closer to him and his work than I. But I loved his writing, even when it baffled me, which it often did.

His novel Infinite Jest is the most incredible, funny, challenging, maddening and brilliant book I've ever read.

When my friend Anne emailed me today to find out if I head heard the news, she noted that, "...having read Infinite Jest, it was possible we have spent as much time with David Foster Wallace as with some of our close acquaintances." (It is 981 pages long with another 90 or so pages of hyper-detailed footnotes.)

But my favorite DFW book is the collection of essays, A Supposedly Funny Thing I'll Never Do Again.

When I read it, I felt like I had discovered the smartest person in the world; one who could start a sentence with "Existentiovoyeristic conundra notwithstanding..." and at the same time communicate compelling points with ease and clarity, and be staggeringly funny.

The main reason that I'm writing about Foster Wallace's passing here is that for a period of time, starting before he turned two, Ben was also obsessed with this book.

For some reason (was it the book's bright yellow cover, some bit of rhythm in the title?) he always pulled it down from the shelf and demanded - with the tiny bit of language that he had - that I read the title and the cover blurb over and over again.

At the time, Chris posted a short video of this (complete with his own DFW-derived footnote) and even if you've never heard of David Foster Wallace, I encourage you to watch it if you are interested in Hyperlexia.

The video captures the unusual intensity and concentration that a hyperlexic child has for the printed word and language. At the time, we were just beginning to wonder if Ben's development was "normal," and if we should be concerned. We were still more than a year away from our first assessment.

This is the stage of hyperlexia where we, like many parents, saw the quirky gifts, but weren't really seeing the deficits clearly yet - the social difficulties, the need for order and predictability, the sensory challenges.

I love that we've captured this moment in Ben's development: how intent he was on decoding the mystery of the sounds and the letters and learning how they all fit together. You can almost see the wheels turning.

I had always had an idea that I was going to track down David Foster Wallace's email and send this video to him, too. I thought he might appreciate it.

Unfortunately I'm too late.

Rest in peace.

Stained Glass

2008-09-08T21:33:00.001-07:00

We were in Minnesota visiting my family a few weeks ago, enjoying the nicely balmy midwestern-style weather, a mutual love-fest between Ben and grandma and grandpa, swimming, corn-on-the-cob and a surprising lack of mosquitos.

We got to spend time with my cousin Jay and his wife Therese and their newly adopted, lovely baby boy, Joshua.

We talked about what parents talk about - work/life balance, hopes and dreams for the future, the joys of the present, the dilemmas of finding good childcare, the hazy exhaustion.

In talking about our various journeys of parenthood, both of which are slightly off the beaten track, we agreed that with special needs children and adopted children, you discover that the child you wanted most is exactly the one you got.

Therese shared with me this wonderful, uncredited piece of writing and I wanted to share it with you, too.

Your kids will challenge you, bring you to tears,

crack you up and make you forget what you urgently had to do.

They’ll shatter the life you knew into a million pieces.

Then they will put it back together, like a stained glassed window,

into something infinitely more complicated and beautiful.

Boy seeking play date

2008-09-06T10:54:00.001-07:00

Wanted:

Friend for regular playdates. Boy or girl between the ages of 3 and 6.

The ideal candidate will find running, shouting and falling down over and over again incredibly funny.

You must be someone who loves Thomas trains, will allow me to play with your trains, but must not touch any of mine. EVER.

Must be able to act out the following stories from memory:

Chrysanthemum by Kevin Henkes

Blueberries for Sal by Robert McCloskey

Star Wars read-along book accompanying 45 RPM record from 1977

The nursery scene of Disney's Peter Pan

The Flying Kipper, from the Thomas the Tank Engine canon

Miss Nelson is Missing, Miss Nelson is Back and Miss Nelson Has Field Day by Harry Alard

A variety of Backyardigans episodes

Accents and funny voices a plus.

Must be willing to follow direction, learn blocking and switch parts at a moment notice. Must enjoy recreating poses from book illustrations on cue.

Looking for someone who will follow orders, and not be offended if I decide to ignore you and go off by myself.

Extensive knowledge of the works of Ezra Jack Keats desirable.

What is the meaning of this?

2008-09-05T22:18:00.001-07:00

If you read anything about Hyperlexia, one of the first things you will learn is that children who are hyperlexic start out with reading skills that are far, far more advanced than their comprehension skills.

While Ben's decoding-to-comprehension ratio has been gradually evening out, I'm noticing something in the last few weeks that tells me that he is actively trying to comprehend.

He's constantly asking me what words mean.

I'm used to him just reading and reading and reading, knowing that he can't possibly UNDERSTAND what "Resource and Sagacity" means (heck, I don't) even though he can sound out the words.

And he never seemed to mind that he was saying the words without understanding the meaning. The exercise of reading aloud seemed to be, in part, about enjoying the sound of the words and the process of putting the sounds together to make words, like playing music rather than communicating.

Now he'll stop and ask me, for example, in the middle of reading his Star Wars book, "What is proton?" "What are torpedoes?"

He'll also just ask me the meaning of words out of the blue, as if he's been reciting a story in his head and suddenly realizes he wants to know the meaning of this word he's been saying for months.

Sometimes I know what story he's thinking of and sometimes I have no idea.

Here are a few random examples just from the last few days:

What's a shrub?

What's destroyed?

What's jealous?

What's exhaust?

What's a meerkat?

What's solemn?

What is orbiting?

What is berserk?

and, my favorite:

"Mommy, what's obe-live-VEE-on?"

"What?"

"Obe-live-VEE-on." (points to song lyrics)

"Oh - that's oblivion. It means...it's like...um...disappearing up into the sky."

"Oh. Oblivion."

And thus, slowly go the characteristics of Hyperlexia, fading into oblivion.

Fall Forward

2008-09-05T16:01:00.001-07:00

It feels like a long time since I've sat down and written anything.

It's not because I have nothing to report - quite the contrary. Since I last posted, we've gone on a summer vacation (great), Ben has started a new school year (mixed), and I've been caught up in a haze of work and drama of the presidential campaign (not so good).

So today, I've escaped to a local Peet's Coffee to attempt to catch up, blog-wise. It's sort of a 21st century version of "A Room of One's Own," except for all the other people and the sound of the espresso machine.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I was facing the start of this school year with trepidation bordering on anxiety.

Ben goes to two schools: a public special-ed preschool in the a.m. and then a private montessori preschool in the afternoon. He rides a bus (yes, a short bus) from our house in the morning and from one to the other. While the school situation wasn't changing, just about everything else was:

Two new teachers in the morning
Two new teachers in the afternoon
Two new bus drivers
New classmates
New aftercare providers

Ben can be very rigid when it comes to small things, but he's actually very adaptable when it comes to bigger changes, so he's done quite well.

The second day of school, I'm told, he was regaling his morning teachers with the one knock-knock joke he knows at the lunch table, which tells me he feels comfortable enough to work the crowd.

But for us, there are a few wrinkles in the school year that aren't exactly ironed out.

First, the OUSD Department of Transportation experienced some glitch with their computer system (that's the explanation, anyway) such that there is no bus service or incorrect bus service for hundreds of children, including Ben. This means that Chris has to bring him from one school to another every day until this gets resolved.

Luckily for everyone, Chris isn't working right now. I'm not sure what families who have two working parents are doing.

There's another reason that we're lucky that Chris isn't working. He's serving as Ben's 1:1 aide at the Montessori school every afternoon.

Last year, Ben was in a class with ten students and two teachers. If he had an incident or needed extra attention, it was easy for one teacher to take him for a walk or work with him individually.

His new class has 18 children and two teachers: not so conducive to individual attention.

The behavior challenges that Ben had towards the end of the summer left the school feeling that Ben needs an extra adult on hand, and at the moment, they're probably right.

While the school has provided one extra staff person for a few hours during the day to shadow him, she isn't available after 2, so at that point, Chris goes over and acts as a sort of ad hoc volunteer teaching assistant for a few hours.

Will we get a 1:1 aide? Maybe. Can we afford it? Not sure. What will happen when Chris goes back to work? No idea.

We don't want to pull him out of the Montessori program because, despite the expense and the less-than-ideal staffing ratio, he has an amazing opportunity there to interact with typical peers, which has been important for him over the past year.

So we're facing what so many parents of special needs children face: pay out of pocket for services that are good for your kid and risk being on the financial brink, or keep your kid at home and face the opportunity cost of lost income, and the lost opportunity of early intervention.

What about you, dear readers? How has your school year started out? How do you fit the pieces of the school-childcare-work puzzle together?

And how do I hire a private livery service for a 4-and-a-half year old?

Rigidity

2008-08-09T18:58:00.001-07:00

It's been a summer of contradictions.

Ben's social and language skills have taken off like gang busters to the point where it feels like he is actually having conversations with us at times. While he is still somewhat echolalic, it seems wholly intentional now: something he is choosing to do for fun and play, rather than something that he does to retreat inside himself or as a substitute for spontaneous language.

He's spent the summer in a mainstream preschool environment with two wonderful teachers who leverage his strengths, adapt their communication style to his needs, and respond with compassion to his challenges.

I would go so far as to say that in some ways, Ben is now within an acceptable standard deviation of a typical four and a half year old.

But as Ben's social skills develop and as he finds himself more comfortable joining the wild world of preschool playground politics, certain aspects of his personality become exposed, and he becomes much more vulnerable.

When he used to spend most of his time at school playing by himself, his extreme rigidity and need for control was hidden in plain sight. Walking around the playground perimeter by himself, reciting a story, allowed him to exert control over his world and avoid the unpredictability of other children.

Now, the social urge we always knew to be there is backed up by the language and play skills he needs to join in. But when he does, he becomes quickly upset when other kids don't do what he wants, or don't respond to his orders the way his trains do.

A little girl at a playground is shoved when she is piling wood chips on a swing in a way Ben finds unacceptable.

A playmate is hit when he doesn't say "goodbye" after Ben repeatedly waves and yells goodbye to him.

A classmate is scratched to the point of bleeding when he tells Ben he can't come in the play structure with him.

Another playmate is pushed when he unknowingly enters the space Ben has established as the castle in the story he is methodically acting out.

A boy is kicked when he pushes the button in the elevator before Ben.

And that's just in the past week.

It's not only play with other children that brings out this rigidity, but other unexpected turn of events as well.

The worst episode Ben had this summer was when a new staff member at the school (who had no information about Ben's challenges) was pouring water from a pitcher for Ben to have a drink. Some water spilled on the table.

Ben threw the pitcher, went after the teacher, and proceeded to tear apart the classroom before a more experienced staff person got a hold of him.

My impression was that there were a lot of things that contributed to the outburst beyond spilled water - it was simply the final straw - but things like this make me feel utterly helpless. Especially when there is another child hurt, another parent or adult who is distressed.

I become completely forgetful of the progress he has made. I forget that he will sometimes take deep breaths to calm himself down, that he can sometimes redirect himself with minimal prompts, that he reaches out for help more often, and expresses his feelings more easily.

My instinct is to protect him, but I can't. How else will he learn flexibility except by being in the world with all its spilled water and other injustices?

And how do you write an IEP goal that measures mellowing out?

Tell it to the Shampoo

2008-08-09T08:25:00.001-07:00

The other night at bath time, Ben and I somehow ended up endowing our bottles of shower gel, shampoo, conditioner and Burt's Bees Bath Soap as characters in an adventure drama that involved a variety of water rescue scenarios.

Ben played with them as if they were action figures, giving them voices and making them fly through the air, swim in the tub and have the kind of conversations that Ben has just been learning.

"Hi! I'm Burt's Bees. What's your name."

"I'm Shower Gel."

"Hi, Shower Gel. Will you play with me?"

~~~~~~~~~~~

The next night, I accidentally pinched his finger in a bathroom cabinet, and through his tears, told me over and over again, "I want to call Laura and tell her what happened!" Ever since the balloon incident, when something traumatic happens, he wants to tell somebody about it - usually his teachers Laura and Gladis. The urge usually only lasts a moment, but this time he was more insistent.

"I think Laura's asleep already," I said, appealing to his sense of reason.

"What will happen if I wake her up? What will happen if I wake everybody up?"

I stalled, not knowing how to redirect. Then, he came up with something different on his own.

"I want to tell Burt's Bees and Shower Gel and Shampoo and Conditioner what happened."

We went to the bathroom and I lined the bottles up on the edge of the bathtub. He sat on my lap and instructed me to have Burt's Bees ask him what happened.

"What happened, Ben?" asked Burt's Bees

"Mommy pinched my finger in that door." he began, pointing to the cabinet.

The bottles (me, talking and wiggling the bottles) and Ben then had a talk about accidents and how to feel better.

"Sometimes I hurt myself when I'm running," he confided towards the end of the conversation. "I need a band-aid and I find a grown-up or a teacher and they will give me lots of hugs and I will feel better."

We said good night to the bottles, but not before giving them a quick ride in a race car and a rocket ship. "I'm all better," Ben announced cheerily as Chris poked his head in the door.

Many parents might be worried if their child started talking to the toiletries, but I'm elated.

I think I've just found the cheapest live-in speech therapists on the planet.

Director's cut

2008-08-04T22:48:00.001-07:00

Among Ben's collection of quirky superpowers, perhaps my favorites are those that showcase his astonishing visual and aural memory. To put it in less clinical terms, I believe he is well on his way to becoming a supreme film geek.

Lately, he'll request that we play the soundtrack from the movie Cars on the stereo - particular tracks, of course - so he can use his collection of Pixar toy cars to choreograph specific sequences from the film.

I'm pretty sure this makes him the only four year-old aficionado of Randy Newman's orchestral film scores.

I've written about Ben's love of recreating camera angles that he's seen in videos. He does the same thing in this activity. He is the director: with the soundtrack precisely matching the action, quoting lines of dialogue at just the right moment, often positioning his head at the proper angle so that he sees the scene the way it appears in the film.

Unfortunately, this talent does NOT really come in handy at preschool. But it just might once he hits junior high.

It makes me think of a story I had read about not long ago about a group of kids who, in the 1980s, worked diligently for seven years on a shot-by-shot recreation of Raiders of the Lost Ark. This, from the LA times story about a recent screening of the film:

The legend of the film is well-known in Indy circles. In 1982, three friends -- Chris Strompolos, Eric Zala and Jayson Lamb -- got together to begin a shot-for-shot re-creation of "Raiders," a film that had been released just a year before. Their ambitions were huge -- they committed to re-creating every single effects shot, including the giant rolling boulder at the film's beginning.

Hampered by the budget constraints of a 12-year-old's allowance and unhappy parents who learned they were setting each other on fire, the film was shut down and restarted several times over the course of seven years. In August 1989, the now 19-year-old friends finally had their premiere screening.

I only hope that when Ben gets older he finds a group of like-minded fanboys who will want to recreate whatever movie they are crazy about at the time.

In 1982, I was in ninth grade and spending a lot of time hanging out with three guys who, like Strompolos, et al, were crazy about Raiders. We were all in drama club together, wrote and performed skits, and made super-8 movies together. Our projects may not have been as ambitious, but the demographic was the same.

Turns out the guy I ended up marrying was, in 1982, a half-continent away, doing pretty much the same thing with his friends.

And now, we have Ben. May the circle be unbroken.

Social Graces

2008-08-02T07:45:00.001-07:00

This summer, Ben has a couple subtle, but powerful additions to his evolving social language toolkit.

1. The courtesy laugh

He has this new chuckle that he uses when he knows something is funny but he's not necessarily laughing spontaneously, or when he wants to signal us to laugh at something that he's saying. The chuckle sounds very much like a combination of Ernie from from Sesame Street and Enos from the Dukes of Hazard.

2. Conversational filler

He's sprinkling his sentences with filler words like "well" and "so" and "okay." Since Ben's language evolved from echolalia, this has never come naturally to him. It reminds me of the many bits of speech we take for granted; and that its these non-signifying bits that give conversation its, well, like, spontaneous feel.

Examples:

"What are you doing, Ben?"

"Well, I'm just playing with trains."

(While acting out the story "The Hat")

"Okay...you'll be Benito Bedoglio."

(While playing with a new Sesame Street feltboard)

"Let's see... I think I'll put Elmo's backpack here."

3. Premeditated charm

When he wants me to stop talking or is trying to distract me from directing him, he'll come close and say softly, "Mommy, will you kiss me?" He's realized this is a very powerful way to shift the tone of the conversation, as well as my mood.

Another example:

A few nights ago, we heard a crash from his room. We rushed in to see he had dumped out the bin of Thomas engines onto the floor. Keep in mind that he has dozens of engines so it's pretty loud. Also keep in mind that this is something he had just done earlier in the day as part of a robot rampage, so we rushed to the scene.

Turns out he had just dumped out the bin the way most kids compulsively dump out bins - just to get all the things out. He was calm, but surprised to see us at the door with worried looks on our faces.

"What are you doing, Ben?" I asked, just to clarify that what I was seeing was indeed benign.

"Oh, nothing," he said with a tone so perfectly reassuring that he had to have been quoting something.

Then he quickly put the bin over his head and smiled. "I'm just...wearing this... as a HAT!"

Not only has he mastered charm, but he's moved on to farce.

And we suddenly felt as if we had been thrust into an episode of Faulty Towers and that at any moment a Vicar would crawl out from under the bed.

Flowers at the Swing

2008-07-26T16:29:00.001-07:00

Today, Jennifer Graf Groneberg of Pinwheels wrote:

If you’d like to honor Evan Kamida’s life, but can’t be at the memorial in person, you can do what I’m doing: I’m going to put flowers near a swingset here in Montana, take a picture, and post it with links, so Vicki will know I’ve been thinking of them.

Can you imagine it? Flowers at swingsets and playgrounds all across the country–flowers for a little boy who loved to swing, and for the mama standing behind him. I hope you’ll join me, and help spread the word.

The inspiration for this gesture comes from a piece that Evan's mother, Vicki Foreman, wrote called Mother at the Swings which was published in the on-line literary magazine, Literary Mama. Susan Etlinger read the piece to introduce the panel at BlogHer last weekend. I encourage you to read it.

I took this photo today of some flowers at a swing; for Evan, and for Vicki.

The Balloon, revisited

2008-07-25T21:37:00.001-07:00

After the aforementioned balloon episode, I decided NOT to have the balloon write back to to Ben. It just seemed like it would add insult to injury, no matter how much the balloon would have insisted what a wonderful and happy place Balloonia is.

The memory of the balloon is still very much with us.

Every day since it happened, at some point in the day, usually when he is tired or sad or anxious, Ben will ask me:

"Mommy?"

"Yeah, Ben."

"Where's my balloon from Trader Joe's?"

"It went up in the sky and now it's in Balloonia."

"Yeah."

Tonight was one of those nights when Ben just needed a good cry. The initial trigger was something small, having to do with the bathtub, but part way through the crying jag, he started saying, "I'm thinking about my balloon. I miss my balloon."

It's been three weeks since we lost the balloon, and in between now and then, then he's gotten two more balloons: one at a birthday party and one after a haircut. He's successfully held onto them and had fun with them in the house until they turned, as we like to say, tired and saggy.

We bought a bag of balloons and played with them, blowing them up, letting them go, shrieking and ducking as they spiraled around the rooom.

I was hoping these new positive memories would overwrite the initial trauma. But they haven't entirely done that.

I think for awhile, the balloon will be the ultimate symbol of sadness for Ben; and maybe the best way that he's found to put sadness into words right now:

"I miss my balloon."

Evan

2008-07-25T18:56:00.001-07:00

I only just met Vicki Foreman and learned about her son, Evan. Vicki is an incredibly talented writer and and advocate for parents who have children with special needs.

Yesterday, I found out that Evan died after a sudden illness.

A woman I spent part of an evening with, a boy I never knew, but still so much sadness at the news.

When you have a child it's like you take a piece of your heart out of your body and put it in the world. You make yourself vulnerable to life's greatest heartache - that you could lose this person - this piece of yourself.

My heart goes out to Vicki and her family.

You can visit Speak Softly... to see a photo of Vicki and Evan.

The family has asked that donations be sent to:

The Pediatric Epilepsy Fund at UCLA
Division of Pediatric Neurology
Mattel Children's Hospital at UCLA
David Geffen School of Medicine at UCLA
22-474 MDCC
10833 Le Conte Avenue
Los Angeles, CA 90095-1752

Cops and Robbers

2008-07-23T21:48:00.001-07:00

Ben loves, more than just about anything at the moment, to be chased around the house.

Like most things in his life, it's become something of a ritual that follows certain important patterns and rules. We have to chase him in a certain way, in a certain direction, saying certain things. He laughs and giggles and squeals as if each time it is the very first time it's ever happened.

The chasing ritual, like many of the other rituals, has transformed gradually over time to include new twists such that every month or so it's become almost entirely new.

The pattern stabilizes for awhile and then transforms again until we've almost forgotten how we used to do it. It just is.

The current twist on the chase is that Ben demands to be chased and then taken to jail. I suspect that kids at school sometimes pretend to put each other in jail and he's picked it up there. The fact that he might be picking up imaginative play narratives from other kids is staggeringly encouraging.

So, jail is his bed, and as soon as Chris puts him there and - clang! - locks the imaginary door, Ben gets up and - screeeeetch! - opens the door and escapes, running out of the room laughing.

At some point, Chris added improvised Old West dialogue referring to Ben as a "mangy varmint" and shouting things like "dagnabbit!" and "great horny toads!" at points. Quickly the Sheriff Daddy routine became a critical part of the ritual.

"Will you be Sheriff Daddy and take me into jail?" Ben started to request each night.

Just for variety's sake, Chris then started doing it with a British accent, claiming to be, "Inspector Daddy of Scotland Yard" shouting, "Great Scott!" and referring to Ben as a scoundrel and a roustabout.

Ben now directs Chris to alternate the roles of Sheriff Daddy and Inspector Daddy, each time eluding their grasp until finally he is taken to jail, from which he quickly escapes. And it starts all over again. And again. And again.

But luckily the law is persistent, and good at accents, has enough energy to indulge a little boy's quirky antics every night.

Thank you, Sheriff.

My New Old Friends

2008-07-22T16:41:00.001-07:00

I had the great fortune to attend a panel at the recent BlogHer conference in San Francisco entitled, "Blogging About our Children with Special Needs."

It was organized by Susan Etlinger of The Family Room and featured Jennifer Graf Groneberg of Pinwheels, Vicki Foreman of Speak Softly..., Kristina Chew of Autism Vox, and Shannon Des Roches Rosa of The Adventures of Leelo and His Pottymouthed Mom. (howz that for the best blog name ever?)

Rather than provide a recap, I'll just suggest you check out Shannon's write-up if you're curious.

I was even more fortunate to be invited join the group, plus several other special needs blogger-moms, for dinner and a bit of mild carousing afterwards. We chatted and laughed and compared notes on aspects of blogging, mothering and being advocates for our extraordinary kids.

There were so many things I normally find myself explaining, or dreading having to explain, in a group of other parents. But here, that was unnecessary. So much was already shared and understood that the conversation felt effortless and familiar and deep all at once.

My newfound feelings of community and solidarity were an especially welcome buffer against the ugliness of the last couple days.

It's lovely to make new friends, especially when they seem, somehow, like longtime pals.

Squirrel

2008-07-11T07:25:00.001-07:00

Ben is hiding things.

I've discovered trains in the recycling bin and in my purse, colorforms in the freezer and the bread drawer, and matchbox cars in my night table and behind books on the bookshelves.

He's not doing it in secret: he's just as likely to hide things away when we're in the room as when he's by himself.

And he's very purposeful and unselfconscious about it. When he's done with an engine, he'll just walk over and, for example, put it in the dining room cabinet next to the place mats and napkins as if that's where it goes.

I first noticed him doing this when we were at a bookstore where there was a train table. He hid a few of the engines - presumably, so he could keep other kids from playing with them and know he had a stash for himself if another kid grabbed one from him.

At four and a half, he's realized that stockpiling scarce resources = power. Pretty smart, actually.

But resources at home are anything but scarce and there's no competition for them.

Despite this, he continues to redistribute his toys all over the house for no apparent reason.

Rebellion against the ordered Montessori system of bins and baskets? Establishing a just-in-time inventory of toys all around the house? Suddenly averse to clutter?

"Why are you putting the engines in there?"

"Shhh. It's a secret."

Despite his remarkable memory for just about everything else, he forgets where he's hidden things and now will wander around the house asking, "Where's Duncan?" Of course, we're very little help.

I just hope he doesn't start doing it with food.