Friday, December 11, 2009

Pencil and paper

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

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Exhibit B: A roster of the Superfriends

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Exhibit C: Self-portrait (created at school)

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

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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.

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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.

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Homework time

Sunday, November 29, 2009

Our asthma initiation

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.

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

Tuesday, November 10, 2009

Anything is possible: two stories

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.

Tuesday, November 3, 2009

non sequitur


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.

Wednesday, October 28, 2009

I'm going to my room (post script)

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.

Sunday, October 25, 2009

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

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.

Tuesday, October 6, 2009

Dispatches from Kindergarten (and a blatant fundraising appeal)

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!


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Monday, September 14, 2009

How to watch TV

Here's a primer on TV viewing from Ben (as imagined by me)
___________________

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.

_____________________

*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.

Monday, August 31, 2009

End of the Summer

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.

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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.

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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.

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Monday, August 24, 2009

Thoughts on the film Adam

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.

Sunday, August 23, 2009

My Wooden Trains

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.

Thursday, August 20, 2009

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

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.

Tuesday, August 18, 2009

Excessive Force

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.

Friday, July 31, 2009

Imagination / Perseveration

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.

Ben on slide.jpg

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.

Ben close up.jpg

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."

Mommy and Ben.jpg

Wednesday, July 29, 2009

Processing

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.

stay calm index card.jpg

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."

Tuesday, July 14, 2009

Swimmingly

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

bath tub swimmer.jpg

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.

Tuesday, July 7, 2009

Same kid, new label

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.

graduation.jpg

Pre-school graduate looks to the future.

Friday, May 29, 2009

Proud

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.

proud.jpg

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.

Saturday, May 23, 2009

Disability and Difference

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?

Tuesday, May 19, 2009

Thoughts (not feelings) about empathy

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.”

Thursday, May 14, 2009

Disneyland. Really.

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...

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cinderella.jpg


wow tigger.jpg

40% perseveration...

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and zero meltdowns.

And those are some pretty good numbers.

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Thursday, April 30, 2009

Teeth minus one

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.

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Tuesday, April 28, 2009

Project Spectrum: Strengths of Autism Shine Through in 3D

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."

Saturday, April 18, 2009

Hyperlexia Literary Journal

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.

Thursday, April 16, 2009

No Myths

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.




Tuesday, April 7, 2009

Two stories about pie

pie.jpeg

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?

Monday, March 23, 2009

I'm not a warrior

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.

Thursday, March 12, 2009

Tilden School to stay open

Tilden exterior.JPG

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.

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