Thursday, December 11, 2008

The Power of Play

I attended a great conference last week sponsored by Autism Social Connection here in San Francisco: Peer Socialization for Children, Teens and Adults on the Autism Spectrum (Fostering Friendships and Imagination).

A number of speakers presented their work with a variety of types of Integrated Play Groups, a concept pioneered by Dr. Pamela Wolfberg of San Francisco State University.

These are small groups that consist of typical children (or expert players, in the language of IPGs) and children on the spectrum (or novice players) who participate in activities that are designed to promote motivating, joyful play.

The speakers talked about a variety of types of IPGs, from play groups for young children, to drama groups, filmmaking groups and social groups for teens. In each case, the activities are chosen to be fun and motivating for ALL the participants regardless of social abilities.

The expert players are not there to act as teachers or therapists or tutors, they are there to simply be playmates and friends. Adult facilitators step in only when necessary. They do not direct the interaction, but rather let it unfold between the children.

One idea from this conference that I found particularly interesting is that no matter how much you play with your child, no matter how silly or energetic or childlike you are, you cannot serve the same function as another child when it comes to play.

Children have a culture they create with each other apart from adults and this is a critical part of play and of childhood.

Children on the spectrum have challenges entering into this culture with all its dynamic unpredictability. But for the sake of their overall social development, the IPG model maintains, it is important that they build the skills to do so.

What I learned is that Integrated Play Groups are very successful in giving children on the spectrum an entrance to the culture of play and imagination.

I watched several videos at the conference that were incredibly moving. They depicted several children (who were much more profoundly affected by autism than Ben) who progressed, in a matter of weeks, from being isolated in their own world and anxious around others to children who were laughing, pretending and playing with other children.

There were experiencing joy with other people, and this is what defines - in a large part - play.

The speakers pointed out again and again that individuals with austism, like everyone, have the desire to experience this shared joy. But it's often as if, as presenter Adrianna Schuler described, the "button" to activate the ability has not yet been turned on yet. Play turns on the system.

..........

As I learned all this, it hit me that Ben has been participating in a kind of Integrated Play Group since he was born. Ben's cousins, two boys aged 7 and 4, live nearby.

The older one is a natural athlete, analytical, full of bravado but still loves his blankie. The younger one is introspective, poetic, an amazing artist, mostly quiet with bursts of unselfconscious silliness.

On the surface, they are very different than Ben. However, Ben shares with them so much of the same basic genetic material that they are also very much alike in ways that make them a great play group.

volleyball.jpg

eastereggs.jpg

They enjoy playing in silly, physical ways that require very little verbal interaction except funny noises and catch phrases. They all need time to do activities by themselves to regroup. They fall into sync with each other when they spend a day together, alternating between noisy roughhousing and quiet reading time, almost as if their brains are programmed on the same schedule.

wagon.jpg

Ben's cousins accept his quirks, they know what makes him laugh, they gently disrupt him from his routines, they allow him to initiate goofy activities and they usually go along enthusiastically, they are tolerant when he has trouble coping.

And when it's time to say goodbye, they all shout, "Cousin hugs!" and embrace each other until they fall into a giggling dogpile on the ground.

It's in this safe and accepting trio - our homegrown Integrated Play Group - that Ben has learned to play.

at the shore.jpg

I hope someday, when Ben's cousins are older, they will understand what a profound impact they have had on our lives just by being themselves.



Ben and his cousins play around with the Photobooth application and sing their own version of the "Numa Numa" song.

Thursday, December 4, 2008

Dialect Coach

Many of Ben's most notable talents continue to go unrecognized by the California State Curriculum Framework.

For example, why can't precision re-enactments of Pixar movies be counted as a critical skill for children entering Kindergarden instead of, say, writing with a pencil?

Then there's Ben's ability to pick up dialects and accents he hears and reproduce them flawlessly.

He's picked up a down Maine accent from an audio book of Robert McCloskey's Burt Dow, Deep Water Man, or as we like to say, "Buuuht Dow, Deep Watah Man."

In Scholastic's video adaptation of Lois Ehlert's Planting a Rainbow, he notices (and reproduces) the difference between how Sarah Jessica Parker reads the word "maah-rigolds" with her east coast dialect instead of how I say "mer-igolds" in the midwestern style.

I've caught him attempting to read an entire book to himself with the Caribbean accent of Sebastian from The Little Mermaid: "Den, de train cahs went to de staaation."

I'm trying to teach him to understand these differences instead of merely parroting them. Especially since often he'll inquire, in his own circuitous way, about why some words sound different. My current talking point goes something like:

In California we say "coffee." In New York, they say, "caw-fee."

And now, there's Welsh.

We have a wonderful Doring Kindersley book of Robin Hood read by actor Ioan Gruffud. He gives one of the characters a Welsh accent.

Ben could not get enough of it, asked us to play a section of dialogue about 25 times in a row and laughed until I thought he was going to pee in his car seat.

He's been imitating it for kicks every once in a while, cracking himself up like crazy.

He agreed to do it for the camera last night.

Sunday, November 30, 2008

Making friends with testosterone

One of the best pieces of parenting advice I got when I was still pregnant was from my long-time friend Diane, who already had two kids of her own.

Never, she advised, look at another child who is doing something annoying or disturbing and think, smugly, "Well, at least MY child doesn't do THAT."

Because if you think that, you are pretty much guaranteed that your child will start doing that very thing within the next few days.

As you can probably guess, there's something I've had that feeling about.

Ben has been slow to develop the normal male fascination with fighting and weaponry. I'd love to take the credit and say it's because we provide such a warm and nurturing environment, but I know that it's really because children on the autism spectrum don't automatically pick up behaviors from peers like most NT children do.

No matter what the cause, I admit to a few moments of smugness about it.

But as his social abilities evolve, he now pays a lot more attention to what other boys do on the playground and wants to fit in. This is progress.

This also means that he's starting to learn about things like fighting and good guys and bad guys.

Ben is paying attention to the concept more in videos and stories, too, and incorporating them into our imaginative play.

One of his new favorite activities is to get out the Nerf baseball bats and play Robin Hood and Little John dueling with staffs on a narrow bridge.

He also loves to play the orchestral soundtrack from Disney's Sleeping Beauty and act out the climax where Prince Philip destroys Maleficent.

You can probably guess who plays which part. My death scene, where I sink to the kitchen floor with a wooden spoon in my heart, is quite a scenery-chewer.

I know it's pretty intellectual stuff compared to Power Rangers or Ninja Turtles, but given the fact that this was completely absent from his repertoire until just a month or so ago, it's striking to me.

As Ben's fascination has grown, we haven't made a point of censoring stories where heroes are in danger and villains are vanquished. (Within reason, of course.)

While we don't want to encourage fighting, we also don't want to shield him from the idea of conflict. Experimenting with ideas of conflict, power, and aggression seem like a normal part of childhood - especially boyhood - that Ben is finally getting around to exploring.

I should note that my twenty-year-old self would be horrified at that last statement. As a matter of fact, I think Chris' twenty-year-old self would be pretty disgusted as well.

Back then, we both believed that gender was nothing more than a construction of oppressive social norms. I cringed at - no, railed against - any biological basis for behavior.

But, of course, that was before I had spent time with any actual children.

Unlike my college-age self, I don't believe that you can just raise boys and girls to be happily, perfectly genderless. There is some wiring in there that does make the sexes fundamentally different.

Of course, I don't agree with Freud that "biology is destiny," but maybe biology is "tendency."

Ben likes "boy stuff" (trains, cars, adventure stories, hitting things, bumping into things, crashing things) and he also likes "girl stuff" (Disney princess movies, dance class, playing with a tea set).

Right now, he moves around on the gender continuum with ease. No one (at least not when I'm around) tells him what boys should or shouldn't play with and that's the way it should be.

But I believe that he will have a tendency to explore concepts of his own physical power, ideas of competition and notions of strength in ways that are different than the way his female peers will tend to explore the same concepts.

Unlike my younger self, I'm reconciled to this.

And given his rather circuitous social development (we're taking the scenic route, as Susan at The Family Room says), I'm actually quite pleased to see it.

So every day we're fencing with wooden spoons, bats, plastic golf clubs, and even socks. And we laugh all the while. It feels fun, normal and harmless.

At least he's not interested in guns.

Oh no. I should NOT have said that.

fencing.jpg


En garde! Chief Inspector Daddy of the French Police battles a rogue in jammies.

Friday, November 14, 2008

Sleep

If you've landed here because you typed words like "melatonin" and "sleep disturbance" and "autism spectrum" into your search engine, welcome.

I hope I can provide some information I would have loved to have had a couple years ago.

Here's our story of sleep:

Ben slept relatively well as a baby. But after his first birthday, he would go through periods every few weeks where for several nights in a row he would wake up around 2 a.m. and want to be held.

He would just lie in my lap, eyes wide open, for hours at a time.

And though we had successfully used the dreaded "cry it out" method to get him to go to sleep independently, I admit that I did not have the strength of character to go through this exercise at two in the morning. So I would sit with him: waiting, waiting, waiting for him to fall back asleep.

As he grew, the pattern remained: several weeks of sleeping through the night, then four or five (or more) nights of wakefulness.

At times, he would wake up in the middle of the night and ask to read books together or recite stories on his own at full volume and at middle-of-the-afternoon level of enthusiasm.

As he became more verbal and as his imaginative play skills kicked in, bedtime became his most creative and interactive time of the day.

And because he was actually asking me to play with him (gasp!), I often let him stay up way too late just because I was amazed and delighted by his emerging social antics.

But the playing he did at night sometimes had an almost frantic quality to it.

Often, he would walk in circles around a table in his room, reciting a story or making one up. It seemed as if his brain was propelling his legs, or vice versa, and that he was unable or unwilling to turn his brain off.

Eventually, much too late, he would wear himself out and fall asleep.

Desperate and exhausted, I started researching melatonin.

I had read on the Hyperlexia Parents' Network discussion group about how many families with kids on the spectrum used this natural supplement to help with sleep disturbances.

When I couldn't find anything on the internet that suggested any dangerous side effects, I ventured to the supplements aisle in Whole Foods.

Second guessing myself, I decided to ask a Whole Foods employee about it. She looked shocked. "Oh, I would NEVER give this to children. Children make enough melatonin on their own and they don't need it. You should try valerian root instead."

I slinked away, feeling like a terrible parent who was about to give my kid Valium. So I bought the valerian root. It tasted awful and had no noticeable effect.

With renewed self-confidence, I went back and bought the melatonin.

The first night we gave it to Ben, he had a meltdown on the bathroom floor shortly after he took it. I felt awful. I'm drugging my child, I thought. But something kept me from rejecting it outright.

We tried it again, off and on, for several weeks. The effects seemed to get more consistent, more gentle. I tried to compare nights with and nights without and soon a pattern emerged.

It was working.

So: now he takes one 2.5 mg tablet (orange flavored, like baby aspirin) every night after bath time or as he's putting on jammies. Then he plays in his room or reads or listens to a book on tape for no more than 30 minutes, during which time he gets gently and gradually more calm and sleepy.

Then, at some point, he just crawls into his bed - on his own. We turn out the light and - presto - he falls asleep and sleeps through the night.

But here's the thing: I don't believe that the melatonin is drugging him into falling asleep.

I believe it has helped him learn what a tired feeling feels like and what he can do about that.

For whatever reason, I don't think he allowed himself to experience this before. My theory is that the melatonin makes his sleepy feeling strong enough that he can't ignore it, but not so strong that he is completely powerless against it.

The melatonin allows him to be mindful of falling asleep and participate in that process. Case in point: he closes his eyes now BEFORE he falls asleep, which he never did previously.

The best part for me is that I can predict, with some certainty, how long our bedtime routine will take and know that I won't be up for 2 hours, roped into a late-night production of Finding Nemo.

Friday, November 7, 2008

Yes we did.

So much has been written. There's not much more to say about this week's historic events, but I will tell you our story all the same.

This past Tuesday night, I hugged Ben as he sat on my lap and we both watched as the news networks broadcast that Barack Obama would be our next president.

We had been briefing him on what an election was. "All the grownups get to say who they want to be president. That's the person who is in charge of the whole United States of America," we explained. "And Mommy and Daddy want Barack Obama to be president."

Several weeks ago, Chris had showed me this video on his iPhone by hip hop artist MC Yogi. It's catchy and stylish and makes use of a final line in one of Obama's speeches - a brighter day will come - to great effect.



Ben wanted to watch it, too. He watched it many times in a row that night with his usual fascination for anything that combines on-screen text and rhythm.

So back to Tuesday night. I held him on my lap and pointed to the text on the TV screen. "Barack Obama is going to be the president." He looked at my face and studied my tears and smile, somewhat puzzled at the two appearing simultaneously.

"Barack Obama is going to be president!" he echoed excitedly. Then, quietly and unprompted, perhaps remembering the video or perhaps just wise beyond years said, "A brighter day will come."

Yes, it will. Yes, it has.

Saturday, October 25, 2008

Improvisation

Ben's brain sucks up language effortlessly.

But how he processes that language and how it comes back out is a curious thing.

As you know if you're a frequent reader, Ben can memorize and recite a story he hears just a few times. But he hears in ways that are more musical than verbal.

And sometimes, when he recites it back, it sounds a bit like a bebop jazz improvisation on the English language.

Today's examples:

"The door volk-cument came slithering down the company."

"[Something was] smiggling down the spackle of dust."

Neurons fire in random ways. Language comes back out as music.

This is actually happening a lot more than it used to when absolute fidelity was so important to Ben.

So does this represent creativity and a loosening of rigidity? Or a memory bank reaching capacity and misfiring?

And what's a volk-cument?

Thursday, October 23, 2008

My imaginary friends

I've been posting about what its like to raise a son on the autism spectrum for about a year now and in that time, I've made so many new online friends to whom I feel astonishingly close and connected.

Many of them write their own blogs and I follow their stories and the progress of their kids with rapt attention; cheering triumphs and eagerly awaiting news of how they are moving through their inevitable difficulties.

Many do the same for me and Ben, and I'm thoroughly grateful.

I've had the privilege of meeting some in the flesh, but so many more only exist for me in words and pictures, Facebook status messages, and Twitter feeds.

Yet, I feel more connected to many of them than I do to many people in my "real-life" social circles.

Especially those of you that I follow on Twitter; we keep tabs on each other, make wise cracks, know when we're having a bad day at work or car trouble, know what each other is cooking for dinner and what funny remarks our kids blurt out before bedtime.

But I've now gone a step further with my social networking friendships.

I've become dear, close friends with people who don't even know who I am.

Take John Dickerson, for example.

He is Slate Magazine's chief political correspondent. I read his online articles each week, listen to him (and David Plotz and Emily Bazelon) on the Slate Political Gabfest podcast every Friday, I occasionally read his blog and I follow him on Twitter.

So I know when John is traveling and following the Obama campaign. I know when he's back home with his wife and kids. I know when it's his daughter's birthday. I know that he enjoys playing guitar. I know what he thinks of his hotel room in Indianapolis and when he's put on standby at SFO.

And while I promise you that I am NOT stalking Mr. Dickerson, I think I spend more time with him than I do with people I consider my "real" best friends.

Probably because my "real" best friends are smart and funny like he is. But they are terribly busy - just like me - with their jobs, their kids and just getting through each day.

When I listen to the Gabfest each Friday, I honestly feel like I'm enjoying a regular weekly lunch date with good friends. We laugh, discuss the issues of the day and enjoy each other's company.

When David Plotz's wife and Atlantic contributor, Hanna Rosin, made a guest appearance week I found myself almost giddy, thinking, "Oh - I'm SO glad Hanna is here again this week!"

Except, I can't talk to them.

And they have no idea I even exist.

Then there are my other friends Stephen Metcalf, Julia Turner and Dana Stevens at the Slate Magazine Cultural Gabfest podcast. I have the same fantasy about being their friend, too. Except with them, we talk about movies and books and TV.

And there's Adam Davidson and Laura Conaway and David Kestenbaum and Alex Blumberg. Their new Planet Money podcast/blog/twitter feed gives me my daily jargon-free explanation of what's going on with the economy.

They're all smart. They say the kinds of insightful and witty things my "real" friends would say.

That is, if I was actually spending time with my real friends. But I'm sad to say that this rarely happens anymore.

When I do get together with friends, kids are normally around, and I'm either being vigilant for trouble or just unable to finish a sentence. No one talks on the phone any more - it's never a good time to call someone.

And when did email - beyond asking a quick question - become too much work?

Certainly there's no time for the kind of thoughtful and substantive conversation that I vicariously participate in when I listen to these podcasts.

So this is a way for me to experience meaningful adult conversation and connection in the throes of a very busy, special-needs-child-rearing life.

Feeling a connection to media personalities isn't new. But it might be amplified by the fact that unlike typical mass media figures, my imaginary friends mix their personal lives and personalities into their public work in a way that is natural and casual and unaffected and makes the public artifact BETTER.

Sure, everyone felt close to Walter Cronkite, but no one knew that he had rib eye for dinner or felt a little bit guilty about drinking Starbucks or who he was rooting for on Project Runway.

So, here's a toast to my wonderful imaginary friends: I've grown so terribly attached to you all. Thank you for filling the void until I have time to start that weekly salon with my real friends.

That is, if by that point, they even remember who I am.

Monday, October 20, 2008

Speaking of Autism

Thanks to my mom for calling my attention to the most recent episode of the public radio program, Speaking of Faith, entitled Being Autistic, Being Human.


Here's the lead in:

One child in every 150 in the U.S. is now diagnosed to be somewhere on the spectrum of autism. We step back from public controversies over causes and cures and explore the mystery and meaning of autism in one family's life, and in history and society. Our guests say that life with their child with autism has deepened their understanding of human nature — of disability, and of creativity, intelligence, and accomplishment.


The show's host, Krista Tippet, interviews a couple, Paul Collins and Jennifer Elder, who have an eight-year-old son with autism. Paul and Jennifer are both writers and each have authored books inspired by their journey as parents of a child on the autism spectrum.

Paul and Jennifer are incredibly insightful, compassionate, and delightful people. Besides being intelligent and articulate on the subject of the autism spectrum, they just seem like really cool people. I kept thinking, "I wish I lived in Portland. I would invite them over for dinner."

Tippet acknowledges at the end of the program that this was the most difficult show she had ever had to edit because the interview was so substantive and interesting. She has decided to make their entire, uncut conversation available as an additional podcast on the show's website.

I was especially moved by Jennifer's observation in which she acknowledges that she has "a happy, healthy son with autism" and how no one would have put those words together in a sentence just a few decades ago.

Listen to the show. I guarantee it will lift your spirits.

__________

While you're at it, check out this Newsweek article that features autism mom and blogger Kristina Chew on the significance and subtext of the mention of autism in the final presidential debate.

Saturday, October 11, 2008

The Wordless Stories of Barbara Lehman

When Ben was first reading, I remember working really hard to get him to engage with the meaning of words he was devouring.

I was never very successful in my endeavor. It was - and often still is - difficult to get his attention when his nose is buried in a book. Especially when he was younger, the words on the page seemed to have a truly hypnotic effect on him.

When I tried to interject simple questions like, "What is that boy doing?" or "What color is the train?" I may as well have been talking to the wall.

Then, by accident, we discovered the power of a book with no words.

We happened upon a book in a children's book store intriguingly called, The Red Book by Barbara Lehman. Like The Beatles' White Album, the book (once you get the dust jacket off) is literally a red book with no other illustrations or text on the cover.

theredbook.jpg

The story inside is a beautifully, simply illustrated tale about a mysterious red book and the magic that happens to the children who find it. The drawings remind me a lot of Chris Ware, another illustrator whose work I love.

The details of the story are wide open to interpretation, and the fact that the story is told without a single written word only adds to the sense of mystery.

When I first showed it to Ben I told him, "This book has NO words. So that means we have to make up the story in our heads." This became my standard talking point and Ben was soon repeating this on his own each time we read the book.

For awhile, Ben wanted me to tell the story the same way each time we looked at the book. Predictably, he was not comfortable with taking liberties with the text - even text that wasn't there.

Soon, he tolerated variations in the story. He even would ask me to read the book back to front, so that it created a completely different storyline.

Most importantly, the lack of words meant that his mind was free, finally, to focus on meaning.

Eventually, he could tell the story himself and would act it out with me using his own words. What better sign that he had moved from recitation to comprehension?

Since then, we have eagerly consumed all of Barbara Lehman's books and always have an eye out for other children's books without words. David Weisner also has several whimsical wordless books; check out Flotsam and Tuesday.

Lehman's Museum Trip is probably my favorite. Besides being a great wordless story, it's responsible for helping Ben discover he has something of a talent for figuring out mazes.

Wordless books are a wonderful way to encourage any child's imagination, but especially if you have or know a young child with Hyperlexia (who probably struggles with comprehension) I suggest you put a few wordless books on your holiday gift list.

Friday, October 3, 2008

Knock, Knock

Ben has hit a very important developmental milestone: learning to tell knock-knock jokes.

Well, kind of.

The knock-knock joke seems like the perfect form of humor for Ben. The form is the very epitome of theme and variations, a construct that seems to be wired into Ben's brain from birth.

He's always been extremely good at verbal patterns: learning them, deconstructing them and rearranging them. He can substitute a new set of characters in a story, new words into a song, new sounds into a word without missing a beat.

I've been anticipating the day when he would master the knock-knock joke, hoping it would give him another social tool to use with his peers. The knock-knock joke being a key item in the arsenal of any kid bon vivant.

Here's the problem. The first knock-knock joke he learned is, itself, a variation on the knock-knock joke form.

Knock, knock

Who's there

Banana

Banana who?

Knock, knock

Who's there

Banana

Banana who?

Knock, knock

Who's there

Banana

Banana who?

Knock, knock

Who's there

Orange

Orange who?

Orange you glad I didn't say banana?


Funny, right? What's the problem, you ask.

The problem is that in learning the variation first, Ben believes that this is the form of the knock-knock joke. His comprehension and context for what a knock-knock joke actually is referring to is limited. His mind is structural, literal, and so his knock-knock jokes go like this:

Knock, knock

Who's there

Strawberry

Strawberry who?

Knock, knock

Who's there

Strawberry

Strawberry who?

Knock, knock

Who's there

Strawberry

Strawberry who?

Knock, knock

Who's there

Kiwi

Kiwi who?

Kiwi you glad I didn't say strawberry?

We just laugh, rather than attempting to explain, and try again with something simpler:

Knock, knock

Who's there?

Ach

Ach who?

Geshundteit!


He follows up with this:

Knock, knock

Who's there?

Ach

Ach who?

Knock, knock

Who's there?

Ach

Ach who?

Knock, knock

Who's there?

Ach

Ach who?

Knock, knock

Who's there?

Ouch

Ouch who?

Ouch you glad I didn't say Ach?


So okay, I have a 4-and-a-half-year-old Dadaist. But what is truly amazing about this to me is the ferocity of his brain - you just point him at words and he learns, sucking up patterns in language like an Electrolux. Yet somehow, the social context and the meaning ("orange you" sounds like "aren't you") don't register.

We'll keep working on it. I know he'll get it eventually. But even when he does, I think we'll both agree that we actually prefer surreal variations like these:

Knock, knock

Who's there?

Nacho

Nacho who?

Knock, knock

Who's there?

Nacho

Nacho who?

Knock, knock

Who's there?

Nacho

Nacho who?

Knock, knock

Who's there?

Blueberry

Blueberry who?

Blueberry you glad I didn't say Nacho?

Thursday, September 18, 2008

Part of Your World

This is a guest post by my husband Chris, who in addition to being Ben's dad spends weekday afternoons as Ben's 1:1 aide. I asked him to write up this story so I could share with you.

Ben's time at his Montessori school includes an awful lot of what parents of spectrum kids most fear: unstructured outdoor free play. One-and-a-half hours at lunch, and another one-and-a-half hours (or more) at the beginning of aftercare.

He's been doing fairly well considering the sheer amount of time he has to navigate each day, if you're measuring "well" by the decreasing frequency with which he physically assaults one of his classmates in response to provocations both real and unintentional.

But he hasn't been playing much with others.

He'll sit by himself, read a book by himself, or push a trike around the yard by himself (without using the pedals, of course). In the past week he's latched onto a small multicolored basketball, and has been making half-hearted attempts at dribbling. When he joins other kids on the small carpet to play with Legos or plastic zoo animals, he's typically playing in parallel.

On some days the boys try to recruit me for a game of Jail, but Ben's attempts to help me escape or elude capture soon cross over into actual anxiety about why won't these kids let go of my Daddy. So we have to break up the game before much time has passed.

Back in the spring and summer Ben spent playtime with a younger mix of kids, who were more likely to start up a simple game of running and shouting. Ben still enjoys this kind of play, where enthusiasm and volume are more important than roles or storyline.

But this is Pre-K and older. His same-age peers are trying to act a little cooler, a little more mature.

I have to admit I've come home most nights feeling dejected. I had thought the point of paying for the Montessori school was to enable Ben to build on his social skills. To keep him in a community of typical kids he already knows and likes. If he's just going to stick to himself why are we spending all this money?

Then The Little Mermaid happened.

Ben had known the story of course, from the Read-Along Book and CD. And we'd picked up another storybook version after he'd sat for a long time in a bookstore looking at it. But he'd never seen the movie.

So after learning Ariel's song "Part Of Your World" from a Disney Sing-A-Long video, and seeing two more songs ("Under the Sea" and "Kiss the Girl") on another video, Ben spoke up very sweetly this weekend "Mommy, you know what I wish? That we had the Little Mermaid movie."

Mommy, ever the advance planner, pulled the DVD out of a closet and made his wish come true.

So, he sat and watched the entire movie, adding his own narration from the Read-Along story he'd memorized, at all the right spots in between the dialogue.

WELL, you can imagine that this created an opportunity for some small talk on the playground Monday afternoon.

As the kids ate their afterschool snack I encouraged Ben and a couple of girls at the table to share their favorite parts of The Little Mermaid. (We'd had this conversation before, but now Ben had actually seen the movie himself.)

The next day at lunchtime (as reported to me by Ben's early-afternoon aide), Ben and his friend Madeleine struck up the conversation again (without adult prompting). Apparently Madeleine knew the movie well enough that she knew all of Ariel's lines.

Before long the two of them began ACTING OUT THE STORY TOGETHER. And by the end of lunch two or three more kids had joined in.

This is exactly the kind of play we do at home as a family, and Ben was clearly thrilled by it. When I arrived at school he kept asking me where Madeleine was (for a portion of the afternoon the class is broken up into two groups). And heading out to aftercare he followed her in line, starting to tell the story as they walked. He squeezed in next to her on a bench that was already quite full, asking her to sing "Part Of Your World" with him, although she wasn't in the mood.

Wednesday at lunch he and Madeleine were at it again, singing, running, jumping, and telling the story of The Little Mermaid. Another boy joined in who had played the day before, but he (as Ursula, the villain) and Ben (as Eric) got a little too method in the big fight scene, and had to be pulled apart.

Today at lunch he asked Madeleine again to play The Little Mermaid. She said no at first, but when he asked again five minutes later she agreed. And with her and two other kids they played for half an hour.

When I arrived the teachers were effusive about how well he had played with everyone. To this point I still hadn't witnessed it myself.

But in aftercare I discovered that Mads had been talking up Ben's playacting skills with one of the older girls. The two of them ran over to where Ben was eating his snack.

"Ben!" shouted Madeleine. "When you're done eating, will you come play The Little Mermaid with us?"

Ben just squinted at her and offered his all-purpose non-committal expression. "Well..."

"You HAVE to help us! You have to give the directions!"

He agreed, and continued to eat. A few minutes later the girls ran back to where we sat.

"Are you done yet?" They shouted in unison.

"Nope," said Ben.

"Aw, shucks!" They echoed each other.

While Ben asked me what "Aw, shucks!" meant, my brain was busy trying to process the fact that these two girls were WAITING for Ben to come play with them--a type of play that he LOVES. He wasn't simply being included; he was ESSENTIAL.

Ben finished his snack, impatiently zipped up his backpack, and joined Madeleine and the older girl for a rousing performance of The Little Mermaid. Both girls assumed the role of Ariel, and Ben assumed the roles of everyone else: Eric, Sir Grimsby, Flounder, Scuttle, Sebastian, Ursula, King Triton, and the narrator.

At various points in the story where Ariel has no lines, Ben could be observed walking away from the girls, describing (for example) the fury of the storm that tosses Eric overboard, with a flurry of wild gesticulations and hissed consonants. But then he would run back to them to prompt them to speak the next line of dialogue.

At times the girls were distracted by a teacher who was blowing bubbles for all the kids to chase, but they kept coming back and asking Ben to continue, even after he had given up on them and started telling the story of Finding Nemo to himself.

The big finale was interrupted by a group painting activity, so I didn't see Ben attempt the closing kiss--although I did see him engineer a VERY near-miss with the older girl during the moment in the story that accompanies the song "Kiss the Girl". (Close enough that I think she started getting nervous.)

It's likely Mads and the other kids will tire of acting out this particular story before Ben does. So despite my ambivalence towards the Disney media empire, I do now believe that Ben's social development will be aided by his familiarity with other stories favored by his peers (especially, perhaps, the girls).

Tonight as we were leaving I asked Madeleine what her other favorite movies were.

"Snow White," she said. "And Sleeping Beauty."

Done and done.

Sunday, September 14, 2008

David Foster Wallace's Youngest Fan

Yesterday, when I heard that author David Foster Wallace had died and I felt a pang of shock and sadness.

I will leave the eulogies to more talented writers and those who were closer to him and his work than I. But I loved his writing, even when it baffled me, which it often did.

His novel Infinite Jest is the most incredible, funny, challenging, maddening and brilliant book I've ever read.

When my friend Anne emailed me today to find out if I head heard the news, she noted that, "...having read Infinite Jest, it was possible we have spent as much time with David Foster Wallace as with some of our close acquaintances." (It is 981 pages long with another 90 or so pages of hyper-detailed footnotes.)

But my favorite DFW book is the collection of essays, A Supposedly Funny Thing I'll Never Do Again.

When I read it, I felt like I had discovered the smartest person in the world; one who could start a sentence with "Existentiovoyeristic conundra notwithstanding..." and at the same time communicate compelling points with ease and clarity, and be staggeringly funny.

The main reason that I'm writing about Foster Wallace's passing here is that for a period of time, starting before he turned two, Ben was also obsessed with this book.

For some reason (was it the book's bright yellow cover, some bit of rhythm in the title?) he always pulled it down from the shelf and demanded - with the tiny bit of language that he had - that I read the title and the cover blurb over and over again.

At the time, Chris posted a short video of this (complete with his own DFW-derived footnote) and even if you've never heard of David Foster Wallace, I encourage you to watch it if you are interested in Hyperlexia.

The video captures the unusual intensity and concentration that a hyperlexic child has for the printed word and language. At the time, we were just beginning to wonder if Ben's development was "normal," and if we should be concerned. We were still more than a year away from our first assessment.

This is the stage of hyperlexia where we, like many parents, saw the quirky gifts, but weren't really seeing the deficits clearly yet - the social difficulties, the need for order and predictability, the sensory challenges.

I love that we've captured this moment in Ben's development: how intent he was on decoding the mystery of the sounds and the letters and learning how they all fit together. You can almost see the wheels turning.

I had always had an idea that I was going to track down David Foster Wallace's email and send this video to him, too. I thought he might appreciate it.

Unfortunately I'm too late.

Rest in peace.

Monday, September 8, 2008

Stained Glass

We were in Minnesota visiting my family a few weeks ago, enjoying the nicely balmy midwestern-style weather, a mutual love-fest between Ben and grandma and grandpa, swimming, corn-on-the-cob and a surprising lack of mosquitos.

We got to spend time with my cousin Jay and his wife Therese and their newly adopted, lovely baby boy, Joshua.

We talked about what parents talk about - work/life balance, hopes and dreams for the future, the joys of the present, the dilemmas of finding good childcare, the hazy exhaustion.

In talking about our various journeys of parenthood, both of which are slightly off the beaten track, we agreed that with special needs children and adopted children, you discover that the child you wanted most is exactly the one you got.

Therese shared with me this wonderful, uncredited piece of writing and I wanted to share it with you, too.

Your kids will challenge you, bring you to tears,

crack you up and make you forget what you urgently had to do.

They’ll shatter the life you knew into a million pieces.

Then they will put it back together, like a stained glassed window,

into something infinitely more complicated and beautiful.

Saturday, September 6, 2008

Boy seeking play date

Wanted:

Friend for regular playdates. Boy or girl between the ages of 3 and 6.

The ideal candidate will find running, shouting and falling down over and over again incredibly funny.

You must be someone who loves Thomas trains, will allow me to play with your trains, but must not touch any of mine. EVER.

Must be able to act out the following stories from memory:

Chrysanthemum by Kevin Henkes

Blueberries for Sal by Robert McCloskey

Star Wars read-along book accompanying 45 RPM record from 1977

The nursery scene of Disney's Peter Pan

The Flying Kipper, from the Thomas the Tank Engine canon

Miss Nelson is Missing, Miss Nelson is Back and Miss Nelson Has Field Day by Harry Alard

A variety of Backyardigans episodes

Accents and funny voices a plus.

Must be willing to follow direction, learn blocking and switch parts at a moment notice. Must enjoy recreating poses from book illustrations on cue.

Looking for someone who will follow orders, and not be offended if I decide to ignore you and go off by myself.

Extensive knowledge of the works of Ezra Jack Keats desirable.

Friday, September 5, 2008

What is the meaning of this?

If you read anything about Hyperlexia, one of the first things you will learn is that children who are hyperlexic start out with reading skills that are far, far more advanced than their comprehension skills.

While Ben's decoding-to-comprehension ratio has been gradually evening out, I'm noticing something in the last few weeks that tells me that he is actively trying to comprehend.

He's constantly asking me what words mean.

I'm used to him just reading and reading and reading, knowing that he can't possibly UNDERSTAND what "Resource and Sagacity" means (heck, I don't) even though he can sound out the words.

And he never seemed to mind that he was saying the words without understanding the meaning. The exercise of reading aloud seemed to be, in part, about enjoying the sound of the words and the process of putting the sounds together to make words, like playing music rather than communicating.

Now he'll stop and ask me, for example, in the middle of reading his Star Wars book, "What is proton?" "What are torpedoes?"

He'll also just ask me the meaning of words out of the blue, as if he's been reciting a story in his head and suddenly realizes he wants to know the meaning of this word he's been saying for months.

Sometimes I know what story he's thinking of and sometimes I have no idea.

Here are a few random examples just from the last few days:

What's a shrub?

What's destroyed?

What's jealous?

What's exhaust?

What's a meerkat?

What's solemn?

What is orbiting?

What is berserk?

and, my favorite:

"Mommy, what's obe-live-VEE-on?"

"What?"

"Obe-live-VEE-on." (points to song lyrics)

"Oh - that's oblivion. It means...it's like...um...disappearing up into the sky."

"Oh. Oblivion."

And thus, slowly go the characteristics of Hyperlexia, fading into oblivion.

Fall Forward

It feels like a long time since I've sat down and written anything.

It's not because I have nothing to report - quite the contrary. Since I last posted, we've gone on a summer vacation (great), Ben has started a new school year (mixed), and I've been caught up in a haze of work and drama of the presidential campaign (not so good).

So today, I've escaped to a local Peet's Coffee to attempt to catch up, blog-wise. It's sort of a 21st century version of "A Room of One's Own," except for all the other people and the sound of the espresso machine.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I was facing the start of this school year with trepidation bordering on anxiety.

Ben goes to two schools: a public special-ed preschool in the a.m. and then a private montessori preschool in the afternoon. He rides a bus (yes, a short bus) from our house in the morning and from one to the other. While the school situation wasn't changing, just about everything else was:

Two new teachers in the morning
Two new teachers in the afternoon
Two new bus drivers
New classmates
New aftercare providers

Ben can be very rigid when it comes to small things, but he's actually very adaptable when it comes to bigger changes, so he's done quite well.

The second day of school, I'm told, he was regaling his morning teachers with the one knock-knock joke he knows at the lunch table, which tells me he feels comfortable enough to work the crowd.

But for us, there are a few wrinkles in the school year that aren't exactly ironed out.

First, the OUSD Department of Transportation experienced some glitch with their computer system (that's the explanation, anyway) such that there is no bus service or incorrect bus service for hundreds of children, including Ben. This means that Chris has to bring him from one school to another every day until this gets resolved.

Luckily for everyone, Chris isn't working right now. I'm not sure what families who have two working parents are doing.

There's another reason that we're lucky that Chris isn't working. He's serving as Ben's 1:1 aide at the Montessori school every afternoon.

Last year, Ben was in a class with ten students and two teachers. If he had an incident or needed extra attention, it was easy for one teacher to take him for a walk or work with him individually.

His new class has 18 children and two teachers: not so conducive to individual attention.

The behavior challenges that Ben had towards the end of the summer left the school feeling that Ben needs an extra adult on hand, and at the moment, they're probably right.

While the school has provided one extra staff person for a few hours during the day to shadow him, she isn't available after 2, so at that point, Chris goes over and acts as a sort of ad hoc volunteer teaching assistant for a few hours.

Will we get a 1:1 aide? Maybe. Can we afford it? Not sure. What will happen when Chris goes back to work? No idea.

We don't want to pull him out of the Montessori program because, despite the expense and the less-than-ideal staffing ratio, he has an amazing opportunity there to interact with typical peers, which has been important for him over the past year.

So we're facing what so many parents of special needs children face: pay out of pocket for services that are good for your kid and risk being on the financial brink, or keep your kid at home and face the opportunity cost of lost income, and the lost opportunity of early intervention.

What about you, dear readers? How has your school year started out? How do you fit the pieces of the school-childcare-work puzzle together?

And how do I hire a private livery service for a 4-and-a-half year old?

Saturday, August 9, 2008

Rigidity

It's been a summer of contradictions.

Ben's social and language skills have taken off like gang busters to the point where it feels like he is actually having conversations with us at times. While he is still somewhat echolalic, it seems wholly intentional now: something he is choosing to do for fun and play, rather than something that he does to retreat inside himself or as a substitute for spontaneous language.

He's spent the summer in a mainstream preschool environment with two wonderful teachers who leverage his strengths, adapt their communication style to his needs, and respond with compassion to his challenges.

I would go so far as to say that in some ways, Ben is now within an acceptable standard deviation of a typical four and a half year old.

But as Ben's social skills develop and as he finds himself more comfortable joining the wild world of preschool playground politics, certain aspects of his personality become exposed, and he becomes much more vulnerable.

When he used to spend most of his time at school playing by himself, his extreme rigidity and need for control was hidden in plain sight. Walking around the playground perimeter by himself, reciting a story, allowed him to exert control over his world and avoid the unpredictability of other children.

Now, the social urge we always knew to be there is backed up by the language and play skills he needs to join in. But when he does, he becomes quickly upset when other kids don't do what he wants, or don't respond to his orders the way his trains do.

A little girl at a playground is shoved when she is piling wood chips on a swing in a way Ben finds unacceptable.

A playmate is hit when he doesn't say "goodbye" after Ben repeatedly waves and yells goodbye to him.

A classmate is scratched to the point of bleeding when he tells Ben he can't come in the play structure with him.

Another playmate is pushed when he unknowingly enters the space Ben has established as the castle in the story he is methodically acting out.

A boy is kicked when he pushes the button in the elevator before Ben.

And that's just in the past week.

It's not only play with other children that brings out this rigidity, but other unexpected turn of events as well.

The worst episode Ben had this summer was when a new staff member at the school (who had no information about Ben's challenges) was pouring water from a pitcher for Ben to have a drink. Some water spilled on the table.

Ben threw the pitcher, went after the teacher, and proceeded to tear apart the classroom before a more experienced staff person got a hold of him.

My impression was that there were a lot of things that contributed to the outburst beyond spilled water - it was simply the final straw - but things like this make me feel utterly helpless. Especially when there is another child hurt, another parent or adult who is distressed.

I become completely forgetful of the progress he has made. I forget that he will sometimes take deep breaths to calm himself down, that he can sometimes redirect himself with minimal prompts, that he reaches out for help more often, and expresses his feelings more easily.

My instinct is to protect him, but I can't. How else will he learn flexibility except by being in the world with all its spilled water and other injustices?

And how do you write an IEP goal that measures mellowing out?

Tell it to the Shampoo

The other night at bath time, Ben and I somehow ended up endowing our bottles of shower gel, shampoo, conditioner and Burt's Bees Bath Soap as characters in an adventure drama that involved a variety of water rescue scenarios.

Ben played with them as if they were action figures, giving them voices and making them fly through the air, swim in the tub and have the kind of conversations that Ben has just been learning.

"Hi! I'm Burt's Bees. What's your name."

"I'm Shower Gel."

"Hi, Shower Gel. Will you play with me?"

~~~~~~~~~~~

The next night, I accidentally pinched his finger in a bathroom cabinet, and through his tears, told me over and over again, "I want to call Laura and tell her what happened!" Ever since the balloon incident, when something traumatic happens, he wants to tell somebody about it - usually his teachers Laura and Gladis. The urge usually only lasts a moment, but this time he was more insistent.

"I think Laura's asleep already," I said, appealing to his sense of reason.

"What will happen if I wake her up? What will happen if I wake everybody up?"

I stalled, not knowing how to redirect. Then, he came up with something different on his own.

"I want to tell Burt's Bees and Shower Gel and Shampoo and Conditioner what happened."

We went to the bathroom and I lined the bottles up on the edge of the bathtub. He sat on my lap and instructed me to have Burt's Bees ask him what happened.

"What happened, Ben?" asked Burt's Bees

"Mommy pinched my finger in that door." he began, pointing to the cabinet.

The bottles (me, talking and wiggling the bottles) and Ben then had a talk about accidents and how to feel better.

"Sometimes I hurt myself when I'm running," he confided towards the end of the conversation. "I need a band-aid and I find a grown-up or a teacher and they will give me lots of hugs and I will feel better."

We said good night to the bottles, but not before giving them a quick ride in a race car and a rocket ship. "I'm all better," Ben announced cheerily as Chris poked his head in the door.

Many parents might be worried if their child started talking to the toiletries, but I'm elated.

I think I've just found the cheapest live-in speech therapists on the planet.

bottles.JPG

Monday, August 4, 2008

Director's cut

Among Ben's collection of quirky superpowers, perhaps my favorites are those that showcase his astonishing visual and aural memory. To put it in less clinical terms, I believe he is well on his way to becoming a supreme film geek.

Lately, he'll request that we play the soundtrack from the movie Cars on the stereo - particular tracks, of course - so he can use his collection of Pixar toy cars to choreograph specific sequences from the film.

I'm pretty sure this makes him the only four year-old aficionado of Randy Newman's orchestral film scores.

I've written about Ben's love of recreating camera angles that he's seen in videos. He does the same thing in this activity. He is the director: with the soundtrack precisely matching the action, quoting lines of dialogue at just the right moment, often positioning his head at the proper angle so that he sees the scene the way it appears in the film.

Unfortunately, this talent does NOT really come in handy at preschool. But it just might once he hits junior high.

It makes me think of a story I had read about not long ago about a group of kids who, in the 1980s, worked diligently for seven years on a shot-by-shot recreation of Raiders of the Lost Ark. This, from the LA times story about a recent screening of the film:

The legend of the film is well-known in Indy circles. In 1982, three friends -- Chris Strompolos, Eric Zala and Jayson Lamb -- got together to begin a shot-for-shot re-creation of "Raiders," a film that had been released just a year before. Their ambitions were huge -- they committed to re-creating every single effects shot, including the giant rolling boulder at the film's beginning.

Hampered by the budget constraints of a 12-year-old's allowance and unhappy parents who learned they were setting each other on fire, the film was shut down and restarted several times over the course of seven years. In August 1989, the now 19-year-old friends finally had their premiere screening.


I only hope that when Ben gets older he finds a group of like-minded fanboys who will want to recreate whatever movie they are crazy about at the time.

In 1982, I was in ninth grade and spending a lot of time hanging out with three guys who, like Strompolos, et al, were crazy about Raiders. We were all in drama club together, wrote and performed skits, and made super-8 movies together. Our projects may not have been as ambitious, but the demographic was the same.

Turns out the guy I ended up marrying was, in 1982, a half-continent away, doing pretty much the same thing with his friends.

And now, we have Ben. May the circle be unbroken.

Saturday, August 2, 2008

Social Graces

This summer, Ben has a couple subtle, but powerful additions to his evolving social language toolkit.

1. The courtesy laugh

He has this new chuckle that he uses when he knows something is funny but he's not necessarily laughing spontaneously, or when he wants to signal us to laugh at something that he's saying. The chuckle sounds very much like a combination of Ernie from from Sesame Street and Enos from the Dukes of Hazard.

2. Conversational filler

He's sprinkling his sentences with filler words like "well" and "so" and "okay." Since Ben's language evolved from echolalia, this has never come naturally to him. It reminds me of the many bits of speech we take for granted; and that its these non-signifying bits that give conversation its, well, like, spontaneous feel.

Examples:

"What are you doing, Ben?"

"Well, I'm just playing with trains."

(While acting out the story "The Hat")

"Okay...you'll be Benito Bedoglio."

(While playing with a new Sesame Street feltboard)

"Let's see... I think I'll put Elmo's backpack here."

3. Premeditated charm

When he wants me to stop talking or is trying to distract me from directing him, he'll come close and say softly, "Mommy, will you kiss me?" He's realized this is a very powerful way to shift the tone of the conversation, as well as my mood.

Another example:

A few nights ago, we heard a crash from his room. We rushed in to see he had dumped out the bin of Thomas engines onto the floor. Keep in mind that he has dozens of engines so it's pretty loud. Also keep in mind that this is something he had just done earlier in the day as part of a robot rampage, so we rushed to the scene.

Turns out he had just dumped out the bin the way most kids compulsively dump out bins - just to get all the things out. He was calm, but surprised to see us at the door with worried looks on our faces.

"What are you doing, Ben?" I asked, just to clarify that what I was seeing was indeed benign.

"Oh, nothing," he said with a tone so perfectly reassuring that he had to have been quoting something.

Then he quickly put the bin over his head and smiled. "I'm just...wearing this... as a HAT!"

Not only has he mastered charm, but he's moved on to farce.

And we suddenly felt as if we had been thrust into an episode of Faulty Towers and that at any moment a Vicar would crawl out from under the bed.

Saturday, July 26, 2008

Flowers at the Swing

Today, Jennifer Graf Groneberg of Pinwheels wrote:

If you’d like to honor Evan Kamida’s life, but can’t be at the memorial in person, you can do what I’m doing: I’m going to put flowers near a swingset here in Montana, take a picture, and post it with links, so Vicki will know I’ve been thinking of them.

Can you imagine it? Flowers at swingsets and playgrounds all across the country–flowers for a little boy who loved to swing, and for the mama standing behind him. I hope you’ll join me, and help spread the word.


The inspiration for this gesture comes from a piece that Evan's mother, Vicki Foreman, wrote called Mother at the Swings which was published in the on-line literary magazine, Literary Mama. Susan Etlinger read the piece to introduce the panel at BlogHer last weekend. I encourage you to read it.

I took this photo today of some flowers at a swing; for Evan, and for Vicki.

Flowers at the Swing 1.JPG

Friday, July 25, 2008

The Balloon, revisited

After the aforementioned balloon episode, I decided NOT to have the balloon write back to to Ben. It just seemed like it would add insult to injury, no matter how much the balloon would have insisted what a wonderful and happy place Balloonia is.

The memory of the balloon is still very much with us.

Every day since it happened, at some point in the day, usually when he is tired or sad or anxious, Ben will ask me:

"Mommy?"

"Yeah, Ben."

"Where's my balloon from Trader Joe's?"

"It went up in the sky and now it's in Balloonia."

"Yeah."

Tonight was one of those nights when Ben just needed a good cry. The initial trigger was something small, having to do with the bathtub, but part way through the crying jag, he started saying, "I'm thinking about my balloon. I miss my balloon."

It's been three weeks since we lost the balloon, and in between now and then, then he's gotten two more balloons: one at a birthday party and one after a haircut. He's successfully held onto them and had fun with them in the house until they turned, as we like to say, tired and saggy.

We bought a bag of balloons and played with them, blowing them up, letting them go, shrieking and ducking as they spiraled around the rooom.

I was hoping these new positive memories would overwrite the initial trauma. But they haven't entirely done that.

I think for awhile, the balloon will be the ultimate symbol of sadness for Ben; and maybe the best way that he's found to put sadness into words right now:

"I miss my balloon."

Evan

I only just met Vicki Foreman and learned about her son, Evan. Vicki is an incredibly talented writer and and advocate for parents who have children with special needs.

Yesterday, I found out that Evan died after a sudden illness.

A woman I spent part of an evening with, a boy I never knew, but still so much sadness at the news.

When you have a child it's like you take a piece of your heart out of your body and put it in the world. You make yourself vulnerable to life's greatest heartache - that you could lose this person - this piece of yourself.

My heart goes out to Vicki and her family.

You can visit Speak Softly... to see a photo of Vicki and Evan.

The family has asked that donations be sent to:

The Pediatric Epilepsy Fund at UCLA
Division of Pediatric Neurology
Mattel Children's Hospital at UCLA
David Geffen School of Medicine at UCLA
22-474 MDCC
10833 Le Conte Avenue
Los Angeles, CA 90095-1752

Wednesday, July 23, 2008

Cops and Robbers

Ben loves, more than just about anything at the moment, to be chased around the house.

Like most things in his life, it's become something of a ritual that follows certain important patterns and rules. We have to chase him in a certain way, in a certain direction, saying certain things. He laughs and giggles and squeals as if each time it is the very first time it's ever happened.

The chasing ritual, like many of the other rituals, has transformed gradually over time to include new twists such that every month or so it's become almost entirely new.

The pattern stabilizes for awhile and then transforms again until we've almost forgotten how we used to do it. It just is.

The current twist on the chase is that Ben demands to be chased and then taken to jail. I suspect that kids at school sometimes pretend to put each other in jail and he's picked it up there. The fact that he might be picking up imaginative play narratives from other kids is staggeringly encouraging.

So, jail is his bed, and as soon as Chris puts him there and - clang! - locks the imaginary door, Ben gets up and - screeeeetch! - opens the door and escapes, running out of the room laughing.

At some point, Chris added improvised Old West dialogue referring to Ben as a "mangy varmint" and shouting things like "dagnabbit!" and "great horny toads!" at points. Quickly the Sheriff Daddy routine became a critical part of the ritual.

"Will you be Sheriff Daddy and take me into jail?" Ben started to request each night.

Just for variety's sake, Chris then started doing it with a British accent, claiming to be, "Inspector Daddy of Scotland Yard" shouting, "Great Scott!" and referring to Ben as a scoundrel and a roustabout.

Ben now directs Chris to alternate the roles of Sheriff Daddy and Inspector Daddy, each time eluding their grasp until finally he is taken to jail, from which he quickly escapes. And it starts all over again. And again. And again.

But luckily the law is persistent, and good at accents, has enough energy to indulge a little boy's quirky antics every night.

Thank you, Sheriff.

Tuesday, July 22, 2008

My New Old Friends

I had the great fortune to attend a panel at the recent BlogHer conference in San Francisco entitled, "Blogging About our Children with Special Needs."

It was organized by Susan Etlinger of The Family Room and featured Jennifer Graf Groneberg of Pinwheels, Vicki Foreman of Speak Softly..., Kristina Chew of Autism Vox, and Shannon Des Roches Rosa of The Adventures of Leelo and His Pottymouthed Mom. (howz that for the best blog name ever?)

Rather than provide a recap, I'll just suggest you check out Shannon's write-up if you're curious.

I was even more fortunate to be invited join the group, plus several other special needs blogger-moms, for dinner and a bit of mild carousing afterwards. We chatted and laughed and compared notes on aspects of blogging, mothering and being advocates for our extraordinary kids.

There were so many things I normally find myself explaining, or dreading having to explain, in a group of other parents. But here, that was unnecessary. So much was already shared and understood that the conversation felt effortless and familiar and deep all at once.

My newfound feelings of community and solidarity were an especially welcome buffer against the ugliness of the last couple days.

It's lovely to make new friends, especially when they seem, somehow, like longtime pals.

Friday, July 11, 2008

Squirrel

Ben is hiding things.

I've discovered trains in the recycling bin and in my purse, colorforms in the freezer and the bread drawer, and matchbox cars in my night table and behind books on the bookshelves.

He's not doing it in secret: he's just as likely to hide things away when we're in the room as when he's by himself.

And he's very purposeful and unselfconscious about it. When he's done with an engine, he'll just walk over and, for example, put it in the dining room cabinet next to the place mats and napkins as if that's where it goes.

I first noticed him doing this when we were at a bookstore where there was a train table. He hid a few of the engines - presumably, so he could keep other kids from playing with them and know he had a stash for himself if another kid grabbed one from him.

At four and a half, he's realized that stockpiling scarce resources = power. Pretty smart, actually.

But resources at home are anything but scarce and there's no competition for them.

Despite this, he continues to redistribute his toys all over the house for no apparent reason.

Rebellion against the ordered Montessori system of bins and baskets? Establishing a just-in-time inventory of toys all around the house? Suddenly averse to clutter?

"Why are you putting the engines in there?"

"Shhh. It's a secret."

Despite his remarkable memory for just about everything else, he forgets where he's hidden things and now will wander around the house asking, "Where's Duncan?" Of course, we're very little help.

I just hope he doesn't start doing it with food.

Sunday, July 6, 2008

The Balloon

Today, Ben let go of a balloon by accident. We were heading back to our car after a stop at Trader Joe's in the Grand Lake area of Oakland. It happened at a busy intersection with a lot of bustling and distractions. He had demanded to hold it all by himself.

Yes, in case you're wondering, there was a loop tied in the string. No, he would not keep it around his wrist.

It happened so quickly and was so utterly unfixable.

Ben broke down immediately, completely, more intensely than I've ever seen before. It was a real, honest-to-goodness tantrum (rather than the aforementioned Robot Rampage). The kind with screaming and yelling and crying, where people up and down the block stopped and stared at us, and perhaps pondered calling Child Protective Services.

He did a couple of interesting things during his meltdown. One is that he used a lot of language and sort of narrated the experience while he was crying.

The other thing is that he asked - pleaded - that he be able to call his cousins on the phone to tell them about what had happened. (We had just said good-bye to them before the Trader Joe's stop.)

Language, plus wanting to reach out to others to tell them about something difficult seemed like a positive development. Although it was difficult to keep this in mind while walking down a busy thoroughfare carrying a flailing, out-of-control child.

In the car, he asked several times about where the balloon had gone. At one point he offered an idea of his own:

"Maybe it went to Balloonia."

I think that "Balloonia" is from a story at school, since I seem to remember him referring to Balloonia before, but I'm not certain. In any case, it's a lovely idea.

"Is Balloonia a happy place?" I asked.

"Yes."

"Is the balloon happy in Balloonia?"

"Yes."

When we got home he said, "Wow. That was so sad and scary."

He asked about the balloon several times during the night. Remembering that his teacher once had him dicatate a letter to me one day in school when he was sad, I asked him if he'd like to write a letter to the balloon, a letter that we could send to Balloonia. He liked the idea a lot.

Here's the very poignant letter that he dictated to me:

Dear Balloon:

I got you at Trader Joe's. And I held on tight to my balloon when the light was red. But then the balloon lost control and went into the sky and I was sad and mad.

I missed my balloon and it went to Balloonia. And I love my balloon. And sometimes things happen. But sometimes when they leave you could feel sad or mad.

I love my balloon. And I love the sky. And I like the clouds.

So, whenever you hold tight to a balloon, it could leave up in the sky. It could make you sad or even mad.

Love,
Ben


He read it back to me after I had finished writing, choking himself up a bit at "I missed my balloon..."

Now, here's the question: Should the balloon write back?

Stay tuned, perhaps, for tales of adventure from Balloonia.

Saturday, July 5, 2008

Justin Roberts' Pop Fly: A music review (and ode to liner notes)

It's a rare and beautiful thing when you can find music that children and parents can enjoy together.

One of our favorite artists inhabiting this tiny genre is alt-folk-rock-kids' musician Justin Roberts.

His songs are influenced by the pop-i-licious melodies and hooks of 70s and early 80s pop with a bit of acoustic roots thrown in for good measure.

His lyrics are unusually smart and funny for children's music, revealing a kid's point of view in everyday situations like having a buddy for a school field trip (See my teacher assigned him, but I really don't mind him.) and feeding a stubborn baby brother (C'mon baby brother, I know you're not in the mood. But won't you eat a little bit, eat a little bit of this airplane of food.).

And this lyric from Stay-At-Home-Dad:

At the park we get a lot of weird looks

He's wiping noses and he cleans and cooks

And when I'm standing at the top of the slide

All the Moms are freaking when he goes for a ride.

It's no wonder that parents of a certain age enjoy his music as much as the kids. When you listen to Imaginary Rhino for example, you hear a direct musical descendant of Orleans' Still the One or any song from that era where pop hits still were played on real instruments and had back up singers belting na, na, na during the chorus.

Other arrangements unironically feature the laid-back brass section of a Burt Bacharach song or buzzing synth-y power chords reminiscent of ELO or even Rick Springfield.

If I said that Justin Roberts is the kids' version of Fountains of Wayne, and that makes sense to you, then you know EXACTLY what Justin Roberts sounds like.

Last year we went to see him perform live at Twelve Galaxies in San Francisco's Mission District. Twelve Galaxies is a night club usually devoted to very loud bands you've never heard of with names like Flamingo Gunfight and Disastroid, so it was an odd and wonderful sight to see it on a Sunday afternoon, taken over by families.

Most of the parents seemed a bit nostalgic for the days when they would have been hanging out at a place like this on a regular basis, or just for the days when they were awake after 10 p.m.

Ben was a little uncertain at first, especially waiting for the show to start. But he recognized most of the songs, and while he wasn't quite ready to join the mosh pit of 6-year-olds at the front of the stage, he seemed to be enjoying himself by the end.

This week, Chris picked up Justin Robert's new album, Pop Fly, on CD. Since we obtain most of our music via digital downloads these days, this was Ben's first real introduction to liner notes.

Ben has always memorizes song lyrics by playing them over and over, just a few lines at a time until he's committed each line to memory. But he's always done it by ear.

As we listened to this album for the first time in the car this afternoon, we gave him the CD booklet with the song lyrics and he found he had a new, more effective way to learn the song, something that comes naturally to him: reading.

He listened to the first half of the title track Pop Fly over and over, reading the lyrics, moving his finger along the words in the booklet and singing along.

I remember how exciting it was to open a new album and to find that all the lyrics were printed inside, saving you the trouble of figuring them out yourself. I'd sit in my bedroom, listening, studying each song as it came on, reading along.

Of course, I wasn't reading liner notes when I was four. And Ben isn't listening to much Donna Summer.

Still, I loved seeing this door open for Ben - the connection between song lyrics and the printed word.

So, if you don't own any Justin Roberts albums, I urge you to check them out and perhaps you, too, will be soon belting out:

Is it a bird or a plane?

Should I pray for some rain or is it just a helicopter?

Suddenly I'm siezed by a horrible disease

Someone please, someone please

Call my family doctor

'Cause it's a

pop p-p-p-p-p-p

pop p-p-p-p-p-p pop fly, pop fly

Wednesday, July 2, 2008

Dance Recital

Last year, we enrolled Ben in dance classes at a local dance studio that specializes in classes for young children. The emphasis is on imaginative play set to music and creative movement rather than learning specific routines and steps.

Even back when Ben had a lot of difficulty engaging in group activity at school, he always loved when it was time for music and dance activities and would willingly participate. What he lacks in coordination he more than makes up for in enthusiasm.

Dance classes seemed like a good way to combine physical activity with a chance to interact with typical peers in a structured environment. The fact that a ball and rules were NOT involved was a big plus.

The teachers at this studio were incredibly patient with his quirks and managed to bring out the best in him. He looked forward to the session each week and clearly loved his teachers. Even those days where he spent more time making funny faces at himself in the mirror than participating, the teachers still welcomed us back and continued to encourage his creativity.

During last class of each session, parents and family members are invited to watch the children perform.

It just so happened that for the final performance this session, we had several family members visiting from out of town. Of course, they wanted to go to Ben's "recital."

Not knowing what to expect from Ben, I proceeded to set expectations rather low. The day before, after all, he had cowered in Chris' arms and repeatedly asked (okay, shouted) to go home during his preschool graduation as the other children stood in front of the parents and sang songs.

I pictured six adults sheepishly filing out of the studio mid-way through the performance after Ben melted down. I mentally prepared for the worst.

But he was glorious.

He played to the crowd, hamming it up like I've never seen him do before. He fed off his audience, at one point grinning coyly over his shoulder at us from the circle of dancers. Jumping, laughing, prompting the teacher and class for the part that came next.

No one watching would have been able to peg him as being "different" or having a "disorder" or would have described him as "in his own world."

He was just an enthusiastic little boy who loved being in the spotlight.

And, yes, this is part of who he is, along with the part that clings to my neck in noisy places and the part that rarely tells me what he did at preschool.

And for that afternoon, I got to experience the part of me that's a Stage Mom: applauding wildly, waving to him as he peeked out from behind the curtain, snapping pictures, and beaming like crazy.

dance 1.jpg

dance 2.jpg

Sunday, June 29, 2008

Trouble, part four: Hypothetically Speaking

Last summer, when Ben’s troubles were at their all-time peak, he would exhibit a curious form of imagination.

When he became at all upset or frustrated, he would unleash a stream of imagined acts of aggression and destruction. He would say things like:

“I want to scratch [my classmate].”
“I want to hurt and scratch and push [my classmate].”
“I want to push Dora and Boots and they will fall down and they will have a big, big, big owie and they will be so sad.”
“I want to hurt ALL the children. I want to break ALL the children. I want to scratch EVERYBODY.”

We never quite knew how to respond to these statements except to acknowledge them and allow him to feel heard. I would try several different responses to see if anything helped him calm down:

“Wow, you sound like you’re pretty frustrated.”

“It’s okay to talk about hurting, but it’s not okay to hurt people.”

“I won’t let you hurt anyone. I’ll keep you and your friends safe.”

“Thanks for letting me know that you’re feeling mad.

None of these responses ever seemed to have an impact. He wasn’t in listening mode. His voice was anxious and panicked and tearful. Finally, I just started doing what all good friends do when someone needs to vent. I simply held him and said,

“I know, buddy. I know.”

This phase passed eventually and we only heard him say these things occasionally after that.

But recently, Ben discovered the linguistic tools for talking about cause and effect and that’s introduced some new, baffling verbal behavior.

It all started when we made up a game I call, “What will happen if?”

This involves playing with three juggling balls while Ben asks a series of questions:

“What will happen if the balls go in a puddle?”

“They’ll get wet,” I’ll reply.

“What will happen if the balls go in the oven?”

“They’ll get really hot.”

“What will happen if the balls go in the snow?”

“They’ll get really cold.”

The scenarios become progressively more silly, and there is much giggling.

When Ben behavioral episodes started to increase recently, we’ve seen him transposing this idea of “what will happen if…” to stressful situations. Now the last summer’s litany of “I want” has turned into “What will happen if…?”

When he starts to feel anxious, frustrated or angry, he starts to ask questions like:

“What will happen if I pull [my classmate’s] hair?”
“What will happen if I bit [my cousin’s] hand?”
“What will happen if I break the whole house?”
“What will happen if I break all the planets?”

These are generally unrelated to the frustration at hand.

No matter how I answer, he seems like he’s looking for me to say something different, something specific.

So, like with the “I wants” I just try different approaches. For example, if the question is, “What will happen if I bite [my cousin’s] hand?”

I’ve tried realistic:

He’ll get hurt really bad and he’ll be really sad. Uncle and Auntie will give him a band-aid.

I’ve tried dire and scary:

He’ll have to go to the hospital.

I’ve tried acknowledgement:

You sound like you’re really mad.

I’ve tried stern:

“I won’t let you hurt your cousin. Hurting is not okay.”

I’ve tried Socratic:

“What do you think will happen if you bite [your cousin]?”


None of these approaches seems to have any effect. He simply keeps asking and asking and asking, as if he’s not getting the answer he wants.

And occasionally, after he’s been doing this for several minutes and seems to be a bit more calm, I try humor:

“His hand will be down in your tummy and his hand might tickle your tummy and you would laugh so hard that milk would come out of your nose.”

If applied at the right moment, this works. He starts to laugh, and this gives him a safe way out of being stuck. Sometimes it works.

But sometimes, we're just in too deep.

We had a particularly difficult episode recently, one where Ben’s hypothetical imaginings seemed to fuel actual aggression toward both of us. It took a long time and plenty of tears (from everybody) to return to a state of normalcy.

Afterwards, Chris wondered aloud if when he’s asking “what will happen if…?” if he’s searching for a limit, if he’s trying to find the boundary he cannot cross. Our responses to his questions are designed to acknowledge his feelings and help provide explanations, but perhaps we just end up conveying a confusing and squishy world of no real consequences.

We decided that we’re going to try a single, consistent party line in response to any question involving the result of misbehavior – whether realistic or ridiculous, whether imminent or hypothetical:

“We will take away your shows.”

And we have decided that we will stick to this plan of limiting videos as a consequence of real – not imagined – misbehavior.

We haven’t had to do it yet, but now I find myself wondering, “What will happen if Mommy takes away Ben’s shows?”

I guess we’ll find out sooner or later.

Saturday, June 28, 2008

Recommended Reading

I love this piece by Susan Etlinger, a wonderful writer and special-needs-parent-advocate-blogger-extrordinaire.

It just so happens to serve as a nice variation on my current theme of "trouble." Please consider sharing it with your friends, family and school community.

Friday, June 27, 2008

Trouble, part three: time outs and the limbic brain

I’ve been revisiting a book I read years ago before Ben was born. It’s called A General Theory of Love.

Despite the seemingly chick lit title, the book is a scientific exploration of the parts of the brain that are involved in the feelings of connection and relatedness and intimacy with others. It’s beautifully written and fascinating; and if you’re the type of person who likes a few Shakespeare quotes with your science, this book is for you.

The central thesis starts with the idea that human beings’ brains have three parts – a reptilian brain that controls basic functions, a limbic brain that controls emotions and relationships and a neo-cortex that handles reasoning, planning, creativity, algebra, conjugation of verbs, and the like.

Obviously the neo-cortex is what separates us humans from other beings that don’t solve for x, or manage hedge funds, or invent color names like “sage” and “putty.”

But this book focuses on the limbic brain. What separates all mammals (including us) from those creatures who have not evolved with limbic brains is that we are wired to care about each other. A lizard will watch it’s offspring being eaten by a bird and not bat an eye, but a mother tiger will attack – or risk her own life – to protect her cub. This is the work of the limbic brain.

Not only are we wired to care about each other, but we are wired to need each other.

Animals with limbic brains suffer, and even will die, when they lack connection. This has been studied in lab settings with animals, but also seen clearly in the cases of mismanaged orphanages where children tragically languish without love and comfort of adults.

The authors of the book refer to this as phenomenon as limbic regulation.

Closeness – both physical and emotional – with another person actually optimizes our bodies’ systems. We send and receive messages from others around us that affect our limbic brain. These unconscious messages that pass, for example, between mother and newborn ensure that a newborns’ breathing and heart rate remain regular, as well as govern a host of other physical functions.

In short, humans in close relationships regulate each other.

The reason I went back and read the book is because I began seeing references in others’ writings about children on the spectrum referring to a difficult moment or a tantrum as dysregulation.

In the light of this idea of the limbic brain and how relationships help us function, it made perfect sense to speak of tantrums and other difficult moments as dysregulation; or the state of not being regulated.

When Ben was about two and a half or three, we decided to try the normal “time out” strategy. When he was misbehaving – throwing things, hitting us – we’d warn him and then remove him from the situation for a time. (see: 1, 2, 3 Magic.)

For most parents, this means having the kid go sit in a special chair or stand on a special rug in the corner or to their room.

Apparently (and to my amazement) I learned that most children actually stay in these spots during time out.

That’s not the way it worked for us. Leaving Ben in his room alone while he was in this state meant that we risked having him hurt himself or at any rate break stuff – big stuff.

He would not stand or sit in one spot. So a time out meant sitting with one of us with us holding his arms so he could not hit us or himself. Sometimes we would lay him down on the bed and hold him there until he was calm.

While holding him down seemed preferable to allowing him to hurt himself or us, it never seemed like it was helping him to learn how to behave differently the way a typical time out is supposed to. I was never sure if he saw it as a consequence even though he clearly did NOT enjoy time outs: he protested these episodes with kicking and screaming.

The phase of frequent throwing and hitting passed, so we were doing time outs a lot less frequently. But we started to notice that Ben was sometimes saying when he got on edge, “I want a time out.”

Why, I asked myself, does he want a time out? He hates time out.

“You don’t need a time out, Ben. You didn’t do anything wrong.”

“I want a time out.”

“No, we’re not going to have a time out.”

Then he would throw something or knock something off a table.

He started doing this at school, too. Asking his teacher for a time out and then misbehaving flagrantly when he didn’t get one.

His teacher asked one day, “Ben, what happens when you get a time out?

“Daddy holds my arms tight.”

There it was. While he never seemed to like the time outs we did, he was craving something about the feeling he got when we held his arms during a time out.

This is when I first learned about proprioceptive input. Many children on the spectrum respond well, his teacher explained to us, to pressure applied to the joints and muscles. And from then on, we offered him “tight squeezes” and “tight hugs” all the time, especially when he appeared to start getting on edge, anxious. The staff at school did the same thing, and we saw a huge decrease in behavior problems.

While proprioceptive input is generally regarded as treatment for sensory issues, the concept made me recall what I read about limbic regulation. Maybe it wasn't just the pressure itself, but the also something about the feeling of closeness and connection it provides.

We now make a point try to offer a steady, preventative limbic diet of hugs, squeezes, cuddles and close, physical play.

Perhaps we need a new PSA:

This is your limbic brain. This is your limbic brain on hugs.