The Family Room

In which I simultaneously get on my soapbox and go all Clintonian on you

We went to Sonoma today to get out of the fog, eat really good deli sandwiches and visit Train Town, which I've been betting would be big fun for Isaac. Like a lot of the earliest California towns, Sonoma has a real square, complete with band shell, military barracks, cheese stores, sweet little shops and plentiful fudge. In a word, heaven for us city-weary types.

We arrived at lunch time and grabbed sandwiches to eat in the square, which sports a nice little swing set and some sandy but serviceable picnic tables. We wolfed our meal and spent a lovely half hour pushing Isaac on the swing. He counted in Portuguese, Spanish and Swahili before reverting to English. "Forty-seven, forty-eight, forty-nine, forty-nine...actually, fifty."

Afterwards, we headed to Train Town. Like his beloved steam trains, it's a tiny little narrow-gauge railway that runs through a gorgeous wooded area. And to our amazement and delight, Isaac insisted on taking his very first amusement park rides: a plane (pictured), the "Scrambler," which, judging from his passionate insistence that he ride it OVER AND OVER, is like crack for the vestibular system, and the piece-de-resistance, the dragon roller coaster.

Of course the day was also punctuated by numerous bathroom visits (to look, mostly) a bit of elevator obsession and a late-afternoon meltdown, but Isaac finally nodded off on the drive back, giving J. and me a chance to catch up on this turbulent week.

*
When Isaac was first diagnosed, I thought that the hardest thing about having a child on the spectrum would be having a child on the spectrum. But I quickly discovered that I was focused on entirely the wrong thing. Having Isaac has been my greatest gift, and if you've read beyond this post, I don't think I need to explain why. And so here's my five-cent revelation, guys: the hardest thing about having a child on the spectrum is the relentless advocating--every damn minute of every damn day--to make sure that the rest of the world treats him with the respect and care he deserves, until such time as he can do it for himself.

And, with that, it's time to talk about the first week of school.

In many ways it was good, but (here's the Bill Clinton part) it depends on what you mean by "good." If what you mean is: did Isaac do well, did he adjust relatively smoothly, did he handle the separation without torrents of tears, did he learn something new, are the teachers warm and caring, is the facility bright and well maintained, does everyone in the school have the best of intentions? Well, sure.

But if by "good" you mean: are the teachers and after-school staff provided enough training in how to work with children with autism? Is there enough support provided for the inclusion kids? No. There wasn't much sleeping done here this week.

It's not a teacher issue: it's systemic. And it means that a lot of kids fall through the cracks because advocating for them is a full-time job.

All of you with older children know this. You know this and you fight every day for what your kids need. It's exhausting. And teachers are forced to pay Paul (and hope Peter doesn't notice) each and every day. As are--let's face it--administrators, who must navigate the medieval bureaucracies and politics of the state educational system, which is being slowly suffocated under the selfish, festering legacy of California's notorious Proposition 13.

And so the irony is that Isaac actually had a pretty good week. He likes his teacher, she seems to like him, and aside from recess, he seems to be adjusting to school just fine.

And yet.

Kindergarten, Day One: The adventure begins

So here's the thing: there is no reliable way to know exactly what happened on a given day. What you get are fragments, and like an archaeologist digging for shards in the sand, you must piece it together bit by dusty bit.

You can know, for example, that he woke up protesting that he wanted to stay home, that the reluctance turned to curiosity tempered with fear that school might be "too loud," that he ended up running inside and plopping down with the other kids at morning circle, just like he owned the place.

You can get a partial account from one of his therapy team, who said he had "a really good day." You can hear that he colored, and learned to raise his hand and tell the teacher when he was all done, and that even though he was distracted at first, he loved learning to sing in different languages.

You can hear that the teacher was attentive and looked over her shoulder frequently to make sure he was okay.

You can discover that his lunch was left untouched and that he wolfed it down on the bus ride home. You can wonder what's up with that: how to find out what happened, what to do about it.

You can make a conscious choice to hang back for a few days, let the teachers find their feet, then ask what you can do to help ease his (and their) transition. Because, no matter what, you want to help. And you refuse to become that mom.

You can see that he was a little crabby at the end of the day; tired, but generally himself, and that he bounced back after a light dinner and a few pages of Hop on Pop.

You can hope, have faith in your kid and his teachers; you can choose to be optimistic and relaxed, but also clear and firm. And then you realize:

Holy crap. This is only the beginning.

And then you take a deep breath, and another one, and hold it, and slowly, slowly exhale.

In which, once again, I am unable to read the signs

Say it with me: acting out + unusually disconnected behavior = SICK.

Why oh why do I continue to miss the obvious? Which became abundantly clear when lunch made a rather unpleasant reappearance later on Saturday. And a few times after that. And again this morning.

So we kept Isaac home today, the better to heal his unhappy tum. He was feeling fine--no fever, perfectly energetic--but we figured it might not make for the very best best school day. Or the very best first impression.

So, first day of Kindergarten, take two. Back tomorrow.

Isaac and the very, very, very bad day

"You have to try, right?"

That's what my friend E. said as we fled her son's birthday party yesterday, after a few hurried bites of pizza, a few brief and disjointed conversations and about 30 minutes of wandering, fridge-opening and "I want to go home!!!"

She understood, because she has a son on the spectrum, and because she is a very good friend.

We'd spent the drive down trying to shush his full-throated tropical bird noises, not because they were quirky (we're waaay past that), but because they kept startling J., not exactly helpful while driving on a busy freeway.

"EEEEEEEEEKK!" he'd yell from the back seat. "EEEEEEK!!!"

And then, "I don't like people!! I don't like them!!!

My little cynic.

We finally caved and took him to Mickey D's, which, judging by the condition of Isaac stomach later that day, needs to do some serious soul-searching. And kitchen cleaning.

But I digress.

It all culminated in a hurried bath, pancakes for dinner and a sleeping, damp-haired boy, two exhausted and cranky parents, and a home viewing of The Bourne Ultimatum, which seemed oddly soothing after such a fractured day.

Tomorrow, Kindergarten.

Oy vey.

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.

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.

The week in pictures

Yesteray, Isaac woke up and told me: "I want to go back to Pajaro Dunes and swim in the ocean." "Yeah," I answered, "me too."

At the waterline

We're driving on Beach Street past strawberry fields, sprinklers pumping in precise, balletic arcs. "We made it!" Isaac shouts from the back seat, excited by the proximity of our rented beach house, our friends, and, of course, the ocean. We've been out for the day, and I have a pound and a half of halibut, a bag of artichokes and a bottle of white table wine in my lap: fixings for dinner. We're sandy and tired and feeling just fine.

Isaac starts singing a little tune from the back seat: it's something he began on the way down and is now repeating, with variations, each day. "To-day we're going to their house," he sings, and then, "To-day we're going back to somebody else's house." He pauses briefly and segues into a childish a capella version of the Bee-Gees' "Stayin' Alive," which J. taught him and is probably regretting about now.

After a tough first two nights spent insisting hysterically that we go home, Isaac has finally settled in, and he wanders from room to room exploring, opening doors and drawers, stopping occasionally to perch on the couch with his friend. But he's restless, and we've come to realize that we can't leave him alone here, even for a second. His curiosity and his will are still stronger than his judgment, and so one of us follows him from room to room, removing objects from his hand, locking doors, admonishing and reminding and reinforcing. It's a lot to ask of a five-year-old, him especially, and it wears at our sense of ease.

So, suitably stuffed with pancakes, fruit, milk and whatever else we have on hand, we whisk him out each morning: to Capitola, to Santa Cruz, to Carmel. He follows us with (mostly) good humor, though we both notice that he's more distractible here, more reliant on rituals to help ease his nervousness at each new place. We visit bathroom after bathroom to assure him that we can find a quiet one. We take elevator rides, which he finds calming.

One day, another woman and her young son come to visit, and Isaac's friend plays a vigorous game of forts with the boy, carefully constructing them from bolsters and throw pillows. The two sit happily in their forts, and, after a while, Isaac sidles over. We ask him if he wants to play, and there is a brief negotiation while we assure the boys that this interloper won't harm their construction. Finally, they assent, and Isaac takes his place among them, sitting carefully down, a serious expression on his face.

I notice a brief look of confusion: now that I'm here, what do I do? I don't know how to facilitate this, and I'm too late anyway. After a moment, he gets up and wanders into the kitchen. The boys trash the forts and start climbing over their mountains of pillows, and Isaac is momentarily lured back into the game before wandering upstairs to look out the window and play with the shutters.

This is how it's going to be for a while, I realize, and this prospect of seeing him dip briefly into social play is both reassuring and terrifying: reassuring because it's a huge developmental step; terrifying because on the other side (present company excepted, my friends) there be monsters.

We're home now after a long, slow meander up Highway One. He's fast asleep, exhausted, happy to be in a familiar bed, and J. and I are curled up on the couch eating bread and cheese, watching the Olympics.

I miss the ocean already.