Friday, July 31, 2009

Imagination / Perseveration

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

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

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

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

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

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

Ben on slide.jpg

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

Here's how it all went down:

10:00 a.m.

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

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

Ben close up.jpg

10:30 a.m.

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

It's all very exciting.

11:00 a.m.

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

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

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

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


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

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

Ben's ability to engage in imaginative play is a huge and somewhat unusual strength. He seems to defy clinical literature that suggests that individuals with ASD:
"demonstrate little or no imaginative play...and present deficits in spontaneous imaginative creativity and pretend play."

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

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

And does it matter?

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

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

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

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

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

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

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

"Tell me the story."

"Tell me the story."

"Tell me the story."

Mommy and Ben.jpg

Wednesday, July 29, 2009


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

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

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

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

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

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

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

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

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

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

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

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

Trying to revisit the situation seems nearly impossible.

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

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

stay calm index card.jpg

As a hyperlexic boy, he's always been able to process written words better than conversation. Maybe some part of this will hook into his brain like commercial jingles and movie quotes and dialects.

And maybe today he'll say, "It's okay."

Tuesday, July 14, 2009


I know a kid who, upon hearing that he would be taking swimming lessons everyday at summer school, said, chin quivering and eyes welling up with tears, "I don't want to take swimming lessons. I can't put my face in the water!"

Cut to: Four weeks later

bath tub swimmer.jpg

He loves his daily, 30-minute Red Cross swimming lesson, and is more confident in the water than I could have hoped after only a month. We've been swimming nearly every weekend this summer and Ben enjoys every opportunity to show us, over and over again, how he can put his head under water.

He even wants to practice in the bathtub.

I suspect things like the feeling of floating, the oddly muffled sound and sensation of pressure when one is underwater are fascinating and comforting to Ben as they are for many individuals on (and off) the spectrum.

My meager hopes for swimming lessons were that he 1) wouldn't refuse to go and that he would 2) take an interest in what the other kids were doing, enough to just get in the water.

Exceeded expectations: Check.

Tuesday, July 7, 2009

Same kid, new label

Now that the summer is half over, we now finally have the official letter in hand that tells us what Ben's kindergarden placement will be.

I actually knew several weeks ago when I made an under-the-radar call to the most likely elementary school on the list of possibilities and asked the school secretary if she could confirm that his name was on their Kindergarden roster.

(Note: I'm beginning to collect many bureaucracy survival techniques and one of them is being really, really nice to school secretaries.)

He'll be in an inclusion program, which means that he'll be in a regular kindergarden classroom, sharing an instructional aide with one other child. The inclusion program at this particular school focuses on students who are on the mild end of the the autism spectrum. It's known in our district as the Asperger's Inclusion Program, or ASIP.

We're pretty optimistic at this point that it's going to be a good place for Ben.

What's been interesting is that when I've explained where we're going next year, I got a couple questions like, "Oh, so that's what Ben has now - Asperger's?"

Implicit in the question is that Ben has changed somehow. That he now officially has Asperger's, whereas before he was hyperlexic or "on the spectrum" or autistic. Has he changed? Has he graduated?

What's happened is that he's developed to the point where he meets the school district's very loose criteria for this program: 1) on the spectrum but with typical to above-average academic and verbal skills and 2) no severe behavior problems.

In other words, he'd be bored in a special day class, but he's not ready to be thrown into the general ed wilderness without support.

For the school district, that's Asperger's.

They don't have the resources to split hairs over Asperger's and high functioning autism or PDD-NOS or non-verbal learning disorder or sensory integration disorder.

And that's fine with me right now.

I don't know if Ben "has" Asperger's or autism or hyperlexia with or without a side order of autism. There's no antibody test or MRI or CT scan to pinpoint these things.

I'm just hopeful that the people who run the inclusion program are skilled when it comes to the specific kinds of support Ben needs to be successful in the long run. And I'm grateful that professionals in our school district will sign pieces of paper saying that we get this stuff for free.

But as ambivalent as I am of the labels, as much as I think of the categories as subjective and arbitrary and insufficient for describing a person, there's something strangely satisfying about adopting, even embracing, the Asperger's label.

After all, it's more specific than "on the spectrum" and most people actually seem to have heard of it, as opposed to hyperlexia. And it seems to almost become fashionable (have you noticed how anyone who has ever felt uncomfortable at a party claims these days to have "a bit of Asperger's?")

So, we're still a hyperlexia family. But I'm happy to also fly our new Aspie flag high and proud.


Pre-school graduate looks to the future.