The Family Room

Free Association

There's something about this kind of writing that seems sto express the way the brain works. I started this weblog back in February 2007, at a point when Isaac's speech had really begun to kick in and we were in about eighteen flavors of crisis about what it all meant. 

He liked to spin a lot then, and would often twirl or demand that his father or I pick him up and spin him around. "He never gets dizzy," people would marvel, as if he had accomplished something special. "Yeah, that's actually not so great," I'd say if I was in the mood for a little Sensory Integration 101.  "It means his brain isn't fully receiving the signal that his body is moving." 

Isaac doesn't spin much anymore, and when he does, he gets dizzy much more quickly. Those pathways--some of them, anyway--have found each other. 

I read an article by Stephen Johnson in today's Wall Street Journal about how E-Books will change the way we read, and I can already see so many of these patterns in the way I communicate.  I might be writing about Isaac and thinking about how, lately, he loves bus-riding, and it'll remind me of Ben and his recitation of all the Thomas trains. 

Or I'll be thinking about Nik and his unexplained pain, wondering why the medical world has so much trouble tracking down the source of something so powerful and debilitating. Or what GP or Leelo is doing today. Link, Link, Link.

It takes me on a journey, and if you're game, it brings you along for the ride, even if you don't choose to get off at every stop. It's not a hike; it's a meander, and you never know exactly where it'll lead.

And so, as I see my own world increasingly linked, I see evidence that my son's brain is developing associations as well; some good, some funny, some not so good. I see the unexpected joys in his particular neurological arrangement, and the pain as he crashes against his anxieties over and over again. They're always mostly the same, and sometimes a little bit different.

As J. remarked last night, Isaac is increasingly able to work through his feelings and come out the other side. It may not always be pretty, but bit by bit, those linkages are giving way to new and finer strands and tendrils and fronds and branches. More paths, more possibilities; the power of a network unfolding.

Like Johnson, I won't ever be able to give up the discipline and pleasure of a straight read through a big book: it's who I am.  But I can't help wondering whether there will be some evolutionary impact to this brave new link-rich world, and if we, and our kids, will be the better for it. 

Peaceful

I lay in bed at night, soothed to sleep by the sound of crickets and the occasional owl. "HOO Hoo. Hoo Hoo," it would call night after night, familiar music through my bedroom window. 

Sometimes I would hear coyotes keening through the brush. One would start to yowl, then the others would join in and--just as suddenly--fall silent. 

It was peaceful in my bedroom, at least on the nights that I couldn't hear my parents arguing. Our house was at the end of a cul-de-sac, butting up against the scrubby hillside and all its rightful inhabitants. Every day at around dusk a squirrel would come down the hill and drink from our pool, his tail twitching anxiously at the slightest breeze. Sometimes we'd find the odd garden snake on the front steps. Once we found a baby rattler, and, not long after, a large hairy black tarantula making its leisurely way through the ivy.

It was wild and utterly ordinary, and it's the image I conjure when I'm looking for a sense of peace, my inner compass.

*

J. and I made the decision to raise Isaac in the city early on. Both kids of the suburbs, we loved the idea of being able to walk anywhere from our front door, or hop on the bus at a moment's notice. We loved the diversity, the parks, the energy of city life, the variety of things to do.

But I can't help feeling a little melancholy that the sounds that soothed me as a chid--the hum of wildlife going about its daily business--are not available to him. Instead he falls asleep to the neighbors' conversation on the deck below, to diesel buses and police cars and babies crying and dogs barking in the distance. 

*

We recently began introducing the concept of peacefulness to Isaac. His understanding of emotions grows day by day; yesterday, he informed me solemnly, "I was grouchy before, but now I feel happy." And so beyond happiness--a state that he guards intensely--lie other more nuanced feelings: excitement, fear, worry, surprise, and now, peacefulness.

"Do you want me to rub your back?" I asked him not long ago as we completed our nightly bedtime ritual. "Yes," he whispered, his face buried in the sheets.  I rubbed his back in slow circles, whispering to him, and told him that this was what peaceful feels like: when your breathing is slow, and your voice is low, and your muscles feel loose and heavy as you drift closer to sleep.

"Do you feel peaceful now?" I asked, my voice a whisper. "Yes," he said, and closed his eyes.

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.

Intermission

Last week was a blur, so don't ask. All I remember was a bunch of late nights at work, cheese and crackers for dinner, a few episodes of Weeds with J, and Isaac's matter-of-fact "Mommy's back" when he woke up each morning.

When the weekend came, I was determined to make it up to him, so I took him for lunch at a lovely local cafe. He waited patiently outside with me as they prepared our table, and when we entered I saw a brief look of skepticism on the faces of the family sitting next to us.

No matter. Isaac was a perfect gentleman. I ordered a poached tuna salad and tomato soup for me, and a cheese pizza for him. He ate each piece carefully, discarding it a few bites through before picking up the next one. I wrote out a sentence in blue crayon on the paper the waitress provided: "I am so proud of you."

Here we are at the end of the summer, and he's really surprised us. He survived a haircut, two visits to the dentist (even allowing them to examine, clean, polish and floss his teeth), Kindergarten orientation, and a week-long vacation away from everything familiar. He's learned how to sing The Bee Gees' Stayin' Alive, developed a love for synchronized platform diving (his favorite Olympic sport) and informed us the other day that Michael Phelps had won "eight gold meadows."

And yet, as the summer draws to a close, Isaac seems both more present and more remote than usual: bursts of temper, the omnipresent fear of noise, and more of the door fixation that comes, and goes, and comes again.

At times like these, natural intermissions, I am tempted to stop and take stock, to offer you something wise and comforting, to put it all into perspective. Sometimes this writing is incredibly therapeutic, and sometimes it feels like too much self-imposed pressure, as though I am searching for a tidy summary to an untidy story so you (and I?) won't go away unsatisfied.

Tonight I won't tuck in the corners--I'll just let it be, chaotic and fragmented and oblique.

Into the wild

I think of myself as an introspective person--sometimes too introspective, actually, for my own good. But after a week at the beach with friends, a lovely routine including enough sleep, good food, great (if abbreviated) chats, standing in the waves as Isaac splashed happily, playing tourist in local towns--I'm thinking that maybe I've been on pause a little. And that it's time to think about the future.

"Ah-ah-ah-ah, stayin' alive, stayin' alive," Isaac sang out from the back seat as we drove down Highway One to Monterey. And, later, "I don't want Mommy to go back to work."

Yet another bitter-with-the-sweet. The bitter is obvious. But the sweet? He's thinking about the future too.

In a couple of weeks, Isaac will begin kindergarten. While preschool felt like an enormous step (my little guy, fending for himself), this is the real deal. He'll be included in a classroom for typically-developing kids, but what inclusion will really mean is still mighty uncertain. Will they get his sense of humor? His intelligence? His sweet nature? Will they be kind?

At our panel at BlogHer last month, we discussed the occasional tension between adults with autism and parents with kids on the spectrum--how in an effort to tell our stories, we frame and expose our children's. It's a fair point. And yet in writing this, I have always hoped that my words will act as a sort of context for my child and others, because context is key to perception.

Imagine this: two children are in the schoolyard. One comes close to the other, playfully. The other child pushes him away. Aggression, or self-defense against sensory overload? I'm not saying it's okay for children to push, but there's a context for it. And context can make all the difference.

Or this: two children are playing ball. A third comes up and tries to take the ball away. Aggression, or an attempt to join the play?

Or this: a teacher asks a child a question. The child doesn't answer. Willfulness, or a delay in auditory processing?

In these situations, the child is behaving perfectly rationally. But his reality is not the status quo.

As a parent, my constant struggle is to know how much to advocate--how much to explain the world to Isaac, and him to the world? How much is enough to foster his independence without stunting his growth? It's a constant give and take.

So when I think about the future these days, I try to think without fear, and to focus not on the waves, but on the horizon.

Objects in mirror are closer than they appear

Now this is a beautiful lede:

"Joel Sidney is graduating from UC Berkeley today with an almost perfect grade-point average, a bachelor's degree in American Studies, an honors thesis on Bay Area bluegrass music and the certainty that having autism is not going to limit his expectations."

I actually saw it first over at Emily's, which is ironic-slash-downright-embarrassing given that (a) she lives in Texas and I live in San Francisco; (b) I went to Berkeley; and (c) the SF Chronicle, which I scanned as I wolfed a burrito from the venerable La Taqueria is still on the dining-room table. Crikey.

Other news, in chaotic order:

1. Isaac can now count 1-10 in Mandarin.
2. I miss Friday Night Lights, which is possibly the most willing exposure to football I've ever had in my young life.
3. I just signed up for Scrabulous on Facebook, and I am terrified that I will become addicted and end up in a filthy chat room somewhere, begging pitifully for one last game.
4. We're going to NY tomorrow for my godson's Bar Mitzvah. And if typing that sentence doesn't make me feel old, I don't know what does.
5. I guess I could Twitter it too, subtract a few years.
6. Did you read about the Catholic priest in Minnesota who barred an autistic child from church? My knee jerked, then I read the coverage and wrote this.
7. Time to step away from the Internet and go to bed.

Night, all.

Friday night and the gang's all here

I'm sitting in the living room, my monitor the only light. Outside the window, I hear the low thrum of cars passing by. The heat kicks in with a soft whoosh. It's a rare moment of calm.

I took Isaac to dinner tonight, while J. went to a colleague's retirement party at school. We sat at the Pac-Man table, munching chicken (for him), a burger (for me) and fries (for both of us). At times like this, I feel a heightened sense of awareness of who we are: a young boy and his mother out for a meal together. It feels both reassuringly normal, and slightly momentous: will he slip? Will there be a tantrum? Or will we sit companionably, Isaac sneaking fries off my plate when he thinks I'm not looking? I wanted the older couple at the next table to notice him, to comment on his near-perfect manners: to see what's under the waterline and tell me that we're going to be okay.

I don't know why, but it seemed important tonight somehow.

Isaac's eyes welled with tears this morning as I dropped him at school. Even now, when most children are well past the separation anxiety, I can feel his tug of uncertainty as I pull away for the day. Can't it just be like this, me sitting in your lap, you smoothing my hair and telling me silly stories? Do you have to go to work? Won't you just take me home, where we can play and nap and shut out the world together?

It's almost eerie. I remember that feeling as a child: the sense that the rigor of daily life was just too much sometimes: the discipline of up, shower, dress, eat, pack lunch, go, sit, sit, recess, sit, eat, sit, sit, home, play, dinner, dishes, bed--too complicated and deeply, deeply unfair. I feel that way still.

And it makes me wonder about the true impact of Isaac's challenges: whether, as he grows older and builds his capacity to cope with the barrage of input that comes at him from all sides, he'll emerge even more, become even more expressive, loosen up and start to communicate more fluidly and with less anxiety. I don't know. I hope so. The milestones are coming, even if sometimes they appear as if in a funhouse mirror.

Tomorrow we have a few plans. We'll take it easy. We are trying so hard not to limit our life, not to set too many tight boundaries, even as we vow not to bombard him. The line shifts daily, even hourly.

We pick our way over the path, sliding on the gravel, avoiding the larger roots, an occasional stumble, an occasional sharp pebble in the shoe.

Thought for the day

I Heart San Francisco

An up-and-down day with the guys. We decided to take a walk around the city to check out a local street fair and Easter parade, but Isaac melted down a few blocks in when we informed him that he was not allowed to trample a neighbor's flowerbed so he could touch their heart.

I'll explain: there's an art project called Hearts in San Francisco, started in 2004, in which a number of artists were commissioned to paint large metal heart sculptures for auction. The proceeds went to San Francisco General Hospital. On any given walk around the city, chances are that you'll see at least one heart: in a public space like Union Square, or, just as likely, peering out of someone's garden.

Isaac is entranced by the hearts, so much so that he wants to touch each one he sees. It's partly childish ritual, partly, I think, compulsion.

Here's where our problems began. The accelerant was low blood sugar, brought on by what I like to call "sheer cussedness," brought on by a show of will that would put the WWF to shame (metal chairs not included). We ended up at a street corner, lamely trying to coax Isaac off his behind, while he cried and screamed and cursed the skies like a miniature King Lear.

After a while, J. managed to convince Isaac that there would be no more bus if he didn't have lunch first [the bus being verrry popular around these parts], and, sure enough, a few bites of chicken and waffle fries later, my sunny son re-emerged. Another shining example of QAP by the husband.

After lunch, we wandered down Chestnut Street in the Marina, where he stopped to touch yet another heart. Luckily, this one was publicly accessible. We're home now, all decompressing in our various ways. Isaac is happily watching Diego (so age-appropriate!) and J. is checking email while I tap this out before starting the whole evening ritual: dinner, bath, bedtime.

We're in such a "more" phase now: more language, more engagement, more willfulness and, with it, more moodiness, more compulsiveness, more extremes. I really do think Isaac is in a period of unfolding, and my goal, as much as I have one, is to try not to overthink this. Just let him be, let him be four, let him blow off steam and try and fail, and, to the extent possible and as safety and sanity permit, get the hell out of the way.

Two dreams

Beata's dream:
"I had a dream last night that Isaac was a therapist. We were eating dinner and he was explaining to me how everything had changed in the world and most people were like him, and there were very few people left who understood the old world. Also, some of these people had kids who understood the old world but not the new one. And Isaac was helping them to understand the new world."

Susan's dream:
"We got our kindergarten placement form in the mail. I ripped it open, scanned down the paper and saw that Isaac had been assigned to some random school I'd never heard of. I felt a cold, panicky dread as I picked up the phone."

On balance, I think Beata's dream wins on depth and creativity, while mine gets the award for Least Interesting Subconscious.