The Family Room

In which we try, try again

Sometimes, despite all planning to the contrary, despite weeks of social stories and preparation, it all goes south. We were fine until boarding, more or less. After all, Isaac has flown what? Ten round-trips to New York? A few to LA? The kid has logged more miles in his five years than a lot of adults I know. Maybe it was the alarm that went off in security. Or the fact that we denied him an elevator ride at Gate A1 in favor of the one closer to our departure gate. Or maybe it was the sight of the crowd, jostling into a cold and noisy jetway.

I don't know. Idon'tknowIdon'tknowIdon'tknowIdon'tknow.

The flight crew and security staff were wonderful. After stories like this and this and this I've come to prepare myself for callousness, even outright hostility from the real world, and the real world obliges with its usual motley assortment of responses: sweet, self-righteous, ignorant, outright weird.

It was maybe twenty minutes total. Isaac screamed and cried on the jetway, so much so that a few members of the flight crew came out to see if they could help. Given the fact that the plane was entirely boarded by that point, given everything, really, they were unfailingly polite and helpful. And I should say: not in a "oooh this-is-inconvenient-but-we-had-mandatory-sensitivity-training-after-that-CNN-story-so we'll-smile-a-lot-until-these-horrible-people-go-away" kind of way, but in a crisp, unobtrusive, human way. I was very, very grateful for that. however it came about.

Finally they had to close the plane, and J., Isaac and I went back to the gate to see if we could board a later flight. "Are you scared?" he asked me later that night. "Yeah of course," I said. But I wasn't ready to talk about what it could mean. Not yet, anyway.

We spent eight hours in the airport Saturday (no more seats to be had), and another four or so on Sunday, waiting for our delayed second flight. Isaac was generally calm, but at the final moment he balked.

I had told J. that if this happened again, he should just go, and I would take our boy home. Reluctantly, he handed me Isaac's jacket and boarding pass and boarded the plane alone.

I spent another ten minutes trying to convince Isaac to get on the plane with me. We got as far as the jetway, but by this point he was completely hysterical.

"It's too much!" he cried, tears streaming down his face. "It's too much noise! I want to go home!"

Suddenly I couldn't do it anymore. As much as our family trips mean to me, to all of us, I just couldn't. And in the back of my mind, I thought wow. Nice asking.

We walked silently back through the terminal, hand in hand, through the rain to the shuttle bus, into the car, and drove home to the sound of the wind and the wipers. When we got home, I made him dinner, drew him a bath, got him ready for bed, and lay down next to him as he, and then I, dropped off to sleep.

We awoke this morning to the first wisps of silver light peeking through the window shades. ""It's still pretty dark," he observed, hopping out of bed in search of milk.

We're going to have to look into this anxiety. It worries me terribly that he lives with such intense fears, and I only hope that it's a phase rather than a hint at something darker to come. But maybe this is an unexpected gift as well: ten days together, just the two of us. Time to go to the playground, bake cookies, see some friends. Time to reconnect and to rest.

This autism thing. It gives you whiplash, doesn't it?

I was here first

I got a note from Ana, Isaac's new afternoon nanny, today. She told me that he was at the playground playing with a toy car when another boy came and tried to take it away from him.  "I was here first," Isaac said.

I was here first.

I can't think of those words without tearing up, without taking an inventory of everything that went into that seemingly ordinary phrase:

The hours of speech therapy, working on pronouns and ordinal numbers;

The social facilitation, learning how to pay attention to other children and address them directly;

The emerging sense of self to hold onto that car and not simply give it up to avoid confrontation;

The self-control to answer simply and clearly, rather than losing his cool.

I was here first.

If you ever doubted that the hard-won victories of autism are sweeter, just imagine the quiet drama of that little exchange: one boy playing, another making a move on his toy; the brief confrontation, the readjustment and shift to a new object of desire. For most children, it's hardly worthy of mention.  It comes naturally.  It happens dozens of times per day. It's easy.

Yeah, right. 

It's easy like it's easy to outswim Michael Phelps; after all, it's just swimming, right? Jump in the water, kick, paddle, get to the other side; anyone can do it.  But behind that seemingly effortless grace lie hours of work, an accumulation of muscle memory and tiny, interdependent skills brought together over time into one fluid, perfect movement.

First we pray that our kids will be able to learn social skills: when to say hi, when to say bye, when to offer another kid a toy. Then we pray that they can repeat those skills, generalize them to multiple situations. Then (most difficult of all) we hope that, one day, they'll be able to do it without fanfare--to make it look so easy that no one notices.

It's something to aspire to, isn't it, the quiet joy of ordinary moments?

Autism Twitter Day: Yes, you heard me

For those of you who use Twitter (even those who don't), Bonnie Sayers of Autism Family Adventures has come up with the idea of an Autism Twitter Day on Tuesday December 16 to promote positive awareness of people with autism.  

It's a wonderful idea, and I will be tweeting along with everyone participating in this event. My project that day will be to answer questions from people who want to know about autism but don't know how to ask, what to say, what would hurt or offend or who are concerned about using the wrong words.

Enough of that. Don't worry about political correctness or about sounding naive. Just ask--I will answer whatever you want to know, no matter how awkward. I will answer as candidly and completely as I can, in 140 characters or less. Whatever's left will go on this blog.

So if you're on Twitter, please join in. And if not, you can see what's going on by clicking here and entering #ASD in the search box.  

The lines are open.  

Susan (Twitter: @setlinger)

Demystifying Autism: Friend 2 Friend Social Learning

I've been interested in the work of Heather McCracken for a while now. If you've not heard of her, she is the founder of the Friend 2 Friend Social Learning Society in Vancouver, British Columbia. She's speaking at the Autism Social Connections conference in San Francisco today.

Heather has three kids, one of which, Ian, has autism. When Ian was small, she read one of Pamela Wolfberg's books and was captivated by the idea of developing a program to demystify autism and help children with autism learn social skills from their typically developing peers (and, as it turns out, vice versa).

Today the Friend 2 Friend society has done over 1,700 autism demystification programs. 

The model seeks to enhance reciprocal social interaction. Says Heather,"the key to these friendship between children on the autism spectrum and their peers is to foster understanding, acceptance and empathy in an age-appropriate and sensitive manner." 

Here are a few tenets of the model.

Demystication is a process that supports a general understanding of autism. A big part of demystification is "normalizing" behaviors such as hand-flapping or toe-walking by explaining it in a personal context.

Here's an example: Heather likes twirl her hair. She does this when she's stuck in traffic. When she's late, she does it faster.  It doesn't get her where she's going, but it makes her feel better. We all have things that we do: toe tap, hair twirl, chew a pencil eraser--whatever--when we want to calm our bodies and our minds.

So the process of normalization is to model (demonstrate the behavior), label it, explain it and, in this way, dissolve the boundaries that divide people with disability or difference from those without.  

Another tenet is that, just because children with autism may have language processing difficulties, it doesn't mean they're not understanding what you say when you talk about them. So Heather's rule is this: if they can't be part of the conversation, they shouldn't be hearing the conversation: it's a question of respect.

Not about me, without me.

So many of us grew up not knowing kids with special needs, and the idea of opening up the conversation--of asking about difference--seems almost painfully wrong. "It's not polite to stare," I was told as a child, and I'm sure you were too. But Heather's belief is that asking is important, because it opens up the conversation, which leads to understanding, accepting, and ultimately, friendship.

For more on the Friend 2 Friend Social Learning Society, check out the website here.

House calls, or why my subconscious is boring

Every so often, J. will recount one of his dreams to me.  It's usually something like this: "I was in line at the bank, and when it got to be my turn I went up to the teller and..."

"And?" I'll ask.

"And I deposited my check."

"That's it? That's the dream?" I'll ask, usually with a mug of strong coffee close at hand.

"Yeah, that's it," he'll answer. "God, my subconscious is boring."

And it is, sometimes. Boring, I mean. His, mine, yours probably. We play and replay bits from the day: current events, feelings, snippets of things we randomly remember, blended up in our heads like a sort of psychic smoothie.

Which is to say: I am addicted to House.

"Oh God. Tell me you're not watching House again," J. will plead from the living-room door, a pained expression on his face.

But I am. Over and over. I pretend I'm not, that I don't care, that he can turn to Sportscenter and--la di da--all will be well. But it's not okay. I'm watching House, dammit.

I need to watch grumpy, two-dimensional House, who behaves like an ass, who says the things I only wish I could say, who wades through pain and messiness and gore and manages nearly every time to save a life in 49 minutes or less--usually without any discernable effect on his stubble, or his mood, for that matter. 

It's compact, familiar and deeply satisfying--sort of like an Oreo. 

HMMM...WHAT COULD IT MEAN?!?!

It means my subconscious is boring. 

Boring. Bo-ring.

And I like the theme song by Massive Attack.

And here we are again

We stood outside the classroom doors, frazzled and late. Isaac clung to me, his head pressed tight against my belly. "I don't want to go in," he said, looking up, the corners of his mouth turning downward, tears welling.

"I know, sweetie, I know. Mondays are hard." And they are, for all the obvious reasons, and some not so obvious.

It's the rhythm of things, you see.  It's the rhythm of waking on the weekends, of playing, of spending a full half hour just looking at each other. Few words, lots of expression, smiles, the occasional growl.

I reach over lazily to tickle him, and his eyes lock onto mine, a grin spreading across his face.  "That look, right there!" a therapist said to us early on. "That's what you want when he looks at you--that expression of total connection, total absorption."

Well, yes.

Time moves very slowly here on the weekends; we wake, I make pancakes and coffee, we read and wrestle, Isaac plays a few games of Wii Bowling with his dad, followed by a meltdown of tragic proportions when we deny him a fourth (okay, a fifth) game. He bowls a 59, a 61, a 71, moving through the controls with confidence.  In the last game, he makes two spares.  I watch as every so often he crosses his midline, and I exhale a soft little breath.

All these things we watch. All these things we monitor and read like damp tea leaves in a porcelain cup. An accumulation of moments, synapses firing, experiences, feelings, neural pathways paved and repaved.

No wonder Mondays come hard and fast, an abrupt gear change, and we all have trouble with the transition. But as much as I love to have him near me, to move in weekend time and focus on the precise little details of our day, I know it's not sustainable. He needs Monday. He needs to move out into the world, with its noises and smells and bustle, its schedules and inconveniences and daily pressures. 

And so, reluctantly, I kneel down, take his hand in mine, and walk with him into the classroom.