The Family Room

Yes, my friends, this is a pep talk

Yet another study showing that children on the autism spectrum have roughly the same mercury levels as those without; a family, for their 15 seconds of fame, pretends their son floated off in a makeshift balloon (I'm not even going to bother linking this), and H1N1 continues to send chills up the spines of everyone I know, parents or not.  

The truth is, we're in a good groove. "Mommy's happy," Isaac told me today. And then, "You look better." This because I have spent the last week fighting H1N1, trying by turns to rest, get some work done, and wipe down every surface I touch, which is harder than it sounds. But it's up to the fates at this point; I'm a petri dish, no matter how many bottles of hand sanitizer I go through.  And every day that passes without Isaac showing symptoms is a gift, and so we wait and see if we can all get through this unscathed.

"You look better." If I could bottle the rush of feeling those words give me and hand them out to every newly-diagnosed parent I know, I would. Four years ago, when we were paralyzed with fear and grief, and experts gave us an endless procession of dark looks, pamphlets and assorted laminated materials, I prayed (and I am not, I admit, a religious person) for my son to look at me, really look at me, and tell me what was on his mind. I prayed for him to argue with me, to tell me how he was feeling, to ask a question, to snuggle up to me in a movie theater, happily munching popcorn. Now, at age six, he's done all these things, and worn the 3-D glasses to boot. 

Now he lies in bed reading a pile of Arthur books before bed (six is about average these days), tells us when he's upset and needs a hug and asks everyone--even strangers--how old they are. It's not much, as social gestures go, but the first step is a doozy.  I am grateful beyond measure.

And yes, for the sake of clarity, he's on the autism spectrum; autistic if you prefer. Still is, probably always will be. We're not talking recovery or magical thinking here. His autism is a part of him, as much as his sandy hair, his brown eyes, his impish sense of humor.

This year I made a 3/4 year's resolution, which I've never done before, being the sort of person who never makes resolutions of any kind. It came to me partly because of the economy, and partly because the kid is so full of surprises lately. And it's this: don't give in to fear. In these dark, celebrity-obsessed, culture-of-fear times, I'm going to drop a little "Greatest Generation" wisdom on you from FDR's first inaugural address: "The only thing we have to fear is fear itself."  I'm not usually one for Serious Quotes from the Greats, but this one feels very personal right now, especially given the recent (ahem!) Autism Speaks video, which rivals Paranormal Activity for scaring the living crap out of people.

A box came from Amazon tonight. "It's my surprise!" Isaac exclaimed as J. opened it for him. Isaac took out the packing plastic, and then the packing slip (looking frankly a little dubious), only to find nestled beneath a pile of new Arthur books. He paused for a moment, not having yet been inducted into the mysteries of Books That Come in the Mail. 

"Where did they come out of?" he asked. But that's a question for another day.

I'm baaack!

It's been a long summer, and an all-consuming one, but I'm back now. I'll save you the lengthy explanation: it was a combination of real life, of wanting just to be rather than say, and of wanting to spend every spare minute (of which there were precious few) with my boys. 

Here's what we did this summer:

• Isaac turned six, lost his first tooth and learned how to do a "forward roll" in gymnastics
• I learned how to make fried chicken 
• J. started on a long-contemplated book project

Oh and there was reading, and IEPs, and trips to the beach, and seeing old and new friends, and life in its many tiny textures.

I've missed you all.

Special interests

It's been a rocky month; my apologies for being so inconsistent. The truth is, there is a lot I can't write about right now; not because it's so dramatic or difficult (though sometimes it feels that way) but because I need some time to process things.  We are at a kind of crossroads once again.

It was a rough Saturday and a lovely Sunday, which, by the way, is a kind of pattern over here.  I suspect that it's because J. and I tend to be tired out from the week, and thus sometimes a little short on patience on Saturdays, while Isaac is in the same boat. His solution: act out, and then act out some more. Ours?  I wish I knew.

But after an afternoon of screeching in the tiny Chinese dumpling house (and I mean tiny: five tables) and lying down on the street, sobbing, and refusing to get in the car, he finally agreed to go home, eat dinner and take his bath, which made for a much happier (and cleaner) boy.  And today we had a lovely morning. 

Lately, Isaac loves to look at family photos, so we've added some snapshots of classmates from the past years. We sat on an overstuffed chair in his room and he showed me who everyone was. "Who's this?" I asked, pointing to a dark-haired boy. "That's Andrew," he responded. "And who's this," I said, pointing to a sandy haired boy to his left. "That's Andrew!" Isaac answered, grinning.

"Andrew?" Are ALL of the kids in your class named Andrew?  Andrew, Andrew, Andrew, Andrew and ANDREW?!?"  He let out a snort of laughter.  "Again!" he demanded.  And so I complied, and he sipped his milk and ate bites of pancake, and he was happy and at ease.

*

Later, I asked him why he'd been upset the day before. "Because I wanted to go on the elevator."  He's processing his feelings--so good--and yet we are a little worried about this special interest of his: his obsession with elevators seems so narrow, and it feels lately as if it is filling more and more of his time.

The funny thing is that since his diagnosis, I always wanted Isaac to develop a special interest.  I think I sort of half-consciously believed that if he had a special interest that would mean he's more Aspergian, and if more Aspergian, then...what?  But his early language delay and his continued challenges with pragmatic language complicate things quite a bit.  It's time for a new evaluation to look at all of it: the social, the emotional, the cognitive, the communicative.  He's had incredible gains, it's true, but we just cannot tell whether his recent anxiety and increased rigidity are a product of stress, or something deeper.

If. And. But. 

It makes my brain hurt to think about it.

And so the calm predictability of elevators, with their neat rows of buttons, their reliable routes, their confined space and muted sounds and minimal decoration, yes. They seem soothing, somehow, and I can understand their allure.

Especially as, humming to myself, I cut vegetables in too-neat rows for dinner.

You should see the other guy

Slowly, slowly, we are moving out of crisis mode and into something different: not stasis, exactly, but something more like accommodation. Isaac goes to school willingly, insisting every morning that it won't be loud. We talk about what might happen, and I can feel him shrink from the possibility of unexpected noise, rejecting even the possibility that school might be too much input for him today.

And he processes the possibilities of the day in his own recursive way, like a tide coming in bit by bit, withdrawing and then inching a little further into the shoreline.

There still isn't enough support, but they're trying. It's a slow dance, tidal also in its own way.

We sat in bed tonight as Isaac read his first real book independently. He's read the words of Hop on Pop, but now he's reading Mo Willems' My Friend is Sad and we can see him enjoying not only the accomplishment of reading, but also the meaning in the book. It's funny: there was a school fundraiser, and each child was encouraged to choose three books from a catalog: Isaac's choices: a Spongebob book, something else and this.

It's perfecty calibrated to his reading and comprehension level now: not too many words on the page, doable without being too easy, with a little humor and nuance to keep him engaged in the challenge of making meaning from it. He's not all the way there: I can see him shoot by the pictures to find the next word, but he gets some of it: that the elephant is sad, that his friend is trying to make him happy. It's a great start, and we're happy that he can decode what's on the page, but far more excited that there's clearly comprehension there, and pride.

And J's joy in seeing his son warm to reading is beautiful to behold.

Isaac's picking up a lot of language at school these days: some random, and some quite comically appropriate. "Mommy, stop arguing," he told me this morning as I fought him to get his shoes and socks on. And, the other day, as I tried to--as the DIR people say--"playfully obstruct" him out of a mood, "Oh, just stop."

And guess what? I have a shiner.

Yep, a real, old-fashioned shiner. I expect it'll be quite spectacular in the morning. Got home tonight, boot somehow slid on kitchen floor and I went face-first (cheekbone first, actually) into the door frame. No amount of makeup is going to cover it. I can already imagine the looks I'm going to get for the next several days.

We scrapped Halloween plans (Isaac's not that into it anyway), and hunkered down tonight. I napped while the boys ran out for dal and tandoori.

Tomorrow, open studios, a trip to the bookstore and date night. I wonder if I can keep my sunglasses on in the restaurant?

Chaos Theory

There are times when I am filled to bursting with hope and warmth and excitement about the future. And there are times when it is all I can do to back the car out of the garage. Or find a parking space. Or answer a simple question.

It's been a week of worry. Worry about the world (big, macro, financial, political) and worry about the personal (how will we reset Isaac's sleep routine? Is he getting enough vitamins? Does he understand that it really hurts when he pulls my hair, even if he's just playing?) And school, school, always school.

It's a mess, all of it, the accumulation of a million little decisions: some ours, some the nation's, some of genetics and environment and pure, hellish chaos.

Why is it that Isaac is easing off the elevators as he becomes even more obsessed with potties? Why is it that he can't stand to see an open window lately? And how is it that he can reason so exquisitely at times, and not at all at others?

We were watching Thomas the Tank Engine the other day, and Gordon was cross. "Isaac, do you know what cross means?" I asked casually as I smoothed lotion on his face. "Cross means mad," he replied easily. And tonight: "Isaac, do you know what panicked means?" (This in regard to an episode where Bulgy, the poor, benighted double-decker bus, is invaded by a clutch of hens). "Panicked means they made a mess," he told me. Good guess. Because panicked chickens, well, even this city girl knows they make a mess.

We took Isaac to Sonoma Train Town again yesterday. I rode the roller coaster and the ferris wheel with him, my arm clutching him close to me. I could feel him vibrate with joy, with excitement, with pure kinetic energy. It was so perfect. Afterwards, we went to get him some pizza and milk, and he and J. went to the playground while I went to a local cookware store and bought a slow cooker.

It's going to be that kind of winter, for many if not all of us. We'll need to hunker, cook at home and be a lot more careful than usual. We're going to need to simplify and stay close.

Isaac fell asleep in his car seat on the way back. The World Series droned in the background as I read recipes to J., all the things I'll make this winter. Moles and stews and chili and soups and braises. It felt real and reassuring as the sun slipped delicately below the horizon.

Attention!

How does the Beatles song go?

Wake up, get out of bed
Drag a comb across my head
Find my way downstairs and drink a cup
And looking up, I notice I am late

Sometimes, to be honest, I don't notice much else. When did Isaac get that spider bite on his cheek? (His skin is so much like mine: puffs up at the slightest provocation) How, all of a sudden, are we out of soap? And Kleenex? Didn't we just buy Kleenex?

And then there are days like today, when it's all I can do to finish just one thing. Where's my favorite black tank top? When did I last call my Dad? What month is it?

It's easy to be lost in the moment with Isaac. When he's distracted, it requires all my attention and energy to lure us both to the same meeting-place: this moment. This. Moment. Now.

Otherwise, for the most part, it's continuous partial attention. Ambient, well, pretty much everything. It's benign for those of us who are neurotypical, but so much harder for Isaac. It's constant sensory bombardment--at school, where he struggles and comes home exhausted, outside; where he's always prey to unexpected noises; even at home sometimes when the washing machine buzzes or the microwave beeps its three final beeps.

This afternoon, we snuggled on the sofa and watched "Harold and the Purple Crayon," followed by a game of dress-up like Daddy ("I want to see in the mirror!" he squawked, and bolted down the hall.) I try to squeeze everything I can from those moments: in the bath, where he tends to be most talkative, at night, when we're telling bedtime stories, in the morning, when he's still groggy and warm from sleep.

I don't care that the moments are small. I care that they're meaningful.

I wonder a lot about attention lately. Mine (sometimes hard to corral, pulled in so many directions). My husband's (mature and focused, a solid barometer). But mostly Isaac's, which is sometimes so fleeting, and sometimes so intent.

I want more. When his attention falters, I want to know what is pulling it away. A feeling? A memory? An itch? A synapse randomly firing?

All of a sudden, it's all I can think about.

Fun for the whole family

Yesterday was much better. Isaac was back to his chipper self, assisted in part by Daddy's awesome display of QAP.

Here's the new game he invented. We're calling it "The Don't Game":

Daddy: Don't...stand on the bed/and touch your head!
(Isaac stands on bed, touches head, grins.)
Daddy: D'oh!

Daddy: Don't...growl in the towel!
(Isaac runs into the bathroom. A brief pause follows.)
Isaac (muffled): Grrrrrrrrrrrr!
Daddy and Mommy (in unison): D'oh!

Much hilarity ensues.

*
I came home tonight to find this enchanting little tale typed on my laptop:

"Once upon a time Isaac saw his friend Rust. Rust was a big girl with red hair. She had a red dress on. Rust peed in the girls’ room."

It's sort of a collaborative work. The first three sentences were authored by Daddy, while the fourth is Isaac's unique contribution.

A literary dynasty, we are.

And then there are these moments

A weekend of clear skies and emotional thunderstorms. We're all still coming down from the first two weeks of Kindergarten, the sensory overload creating a spillover effect at home that's left us all drained, crabby and impossibly tired.

I've said it before: protein, humor and exercise are the three greatest weapons against meltdown. To this I would add sleep. For one reason or another, all were in short supply this weekend (how can the restaurant be out of chicken strips?!?) but, from time to time, the clouds parted and there he was again: grinning, delighted, content, present.

Thanks to Chris, Christa and Ben for a brief but lovely time today, and to Chris for the photos.

Postcard from Constantinople

Dr. Seuss knew what he was doing. Somehow in the last week Isaac has managed to pick up Hop on Pop--possibly the most annoying children's book ever written--and read it aloud, cover to cover, several times.

it's not memory either: he's sounding it out.

It's his new bedtime routine. And oh the joy on his face when he reaches those last long and lovely words: Con-stan-tin-o-ple and Tim-buk-tu.

*
I took a cab this morning. The driver showed up on my doorstep; he was an older guy with intense eyes. He was friendly, courtly even, and mentioned several times during the ride that he was glad we weren't going to Fisherman's Wharf, because it's the worst tourist trap in San Francisco.

He'd grown up here and was old enough to remember when the cable cars passed right by my house.

He knew the magnitude of the '06 quake, and how many people had been killed. He told me that Enrico Caruso had been staying at the Palace Hotel, and that he'd run out of the hotel with a suitcase in hand, still wearing his pajamas. He told me Caruso was really a baritone, but his range was so wide that he could sing tenor. He recited dates, names, numbers until my head was spinning.

I started to tune out. My mind wandered. I wasn't uneasy, but I wanted him to stop. And then I realized.

I think maybe he's from France.

And I relaxed subtly, and just let his words tumble over me as we drove. As I left the cab I asked if he'd always been so good at numbers and dates. "Yes," he sighed. "But I forget the other stuff. It's why I drive a cab." He over pronounced the word, letting it linger in the air.

No moral here, no prophecy, just a story. But I wonder how things were for him; whether he had help, whether there was something else, whether it was hard or lonely or just different, whether he knew I recognized him.

Local color

It's our thirteenth anniversary today, which we're handling in a pretty low-key way. I went to work while J. took Isaac to get a backpack for summer camp (we're calling it the "Rescue Pack," a la Diego), and then to the Exploratorium. Later, they picked me up at work and we went to grab a pizza and sit outside in the uncharacteristically balmy spring air, watching the fancy dogs, the hipsters and sometimes, most amusingly, their befuddled parents, grasping for something familiar among the crazy quilt that is my city. Isaac easily read "Pizzeria Delfina San Francisco" off the box, and spilled enough tomato sauce on himself that he looked like he'd gotten the worst in a barroom brawl.

Afterwards, we drove home and Isaac and I walked ahead as J. closed the garage. Lately, he likes to run ahead a bit and then dash back into my arms, tickling me and smiling in that impish way he has. We held hands, looked both ways and crossed the street together. Suddenly, a car came over the hill, slowed when it saw us, and then sped up, sure it could make it across before we did. "Hey!" I yelled, pulling Isaac back, and then, under my breath, "You moron."

And I heard a little voice pipe up next to me: "Those cars are STUPID!" "Yep, pal, they sure are," I replied, and we walked the half-block toward home.