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.


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.

Glitter and Razz.jpg
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.


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."


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, 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.