We sat on the school steps, a good twenty minutes after the last stragglers raced by clutching their backpacks. Some glanced at us, some said hi, some barely noticed as they darted past.
"Come on, sweetie, time to go in," I urged softly, for perhaps the fortieth time. "Noooooooo," he wailed. "I want another story about going to school."
I relented. "Last one, then we go in, okay?" "Okay," he whispered back. "Once upon a time there was a boy named Isaac..." And I told him about getting dressed, and getting into the car, and driving past all the familiar streets, and all the things he would do today.
He climbed into my lap and nestled close to me as I whispered the story to him, and began playing idly with the zipper of his jacket. A slow smile played across his face, as if he was remembering a private joke.
"It looks like cereal," he announced suddenly looking up. I was totally confused. "What looks like cereal, sweetie?" And then I saw it: the little yellow rectangular piece of velcro at the bottom that secures the waistband and helps keeps the wind out. The fibers looked for all the world like a piece of shredded wheat.
"You know, you're right. It does look like cereal." "Yeah," he answered softly, and snuggled in a little closer.
Finally I urged him into the building, a good forty minutes after we'd arrived. He dawdled by the library for a while and then reluctantly followed me down the hall. We stood there silently as he decided his next move. And then, without any warning at all, he darted into the classroom and joined the other kids.
I walked back to the car, and all I could think was how unfair it is that the most ordinary things can be so excruciating for him, and how blessed he is that even in the throes of his most difficult moments, he can stop to appreciate the language of things, the poetry in a piece of velcro.
About a dozen years and a lifetime ago, I went to England by myself. I stayed in a B&B, wandered the museums and parks of London and rented a car for a drive through the Cotswolds.
Driving on the left side of the road was an adjustment, but what was even more perplexing were the street signs. I was maybe a half-mile from the car rental place when I saw a sign with the charming if rather oblique message "Priorities Change Ahead." I wonder what that could mean, I thought. I was so caught up in my reverie that I nearly collided with a truck on my left whose driver clearly believed he had the right of way. Which he did. Because in England, "Priorities Change Ahead" means YIELD.
I've been thinking about priorities a lot lately. Isaac is in his fourth month of Kindergarten, and while he's doing better--less perseverating, less anxiety--he doesn't have enough support to keep him engaged. He's not the kid who will disrupt class; he'll just go into his private zone.
This worries me because while he's bright and tries hard, he needs almost constant support. It can be light pressure on his shoulder, a reminder to attend, or full hand-over-hand help. Without it he founders; with it he can flourish.
His school is trying to accommodate his needs, and we are working with them. The head of the inclusion program is everything you'd ever hope for: she's warm, passionate and genuinely committed to Isaac's welfare. She's creative about finding solutions for his challenges in school.
What she doesn't have: enough resources to meet the needs of the kids she works with. And honestly, creativity helps, but it only goes so far. The sad part? I realize how lucky we are, but it's still not enough.
Yesterday we got a babysitter and went to a housewarming for some friends of ours. S. held Isaac on his first day home from the hospital; at that time she was dating her now-husband. Their toddler wobbled cheerfully across the floor as people ate, drank and caught up. Periodically there were screeches and wails: nursing children, Lincoln Logs knocked over, cookies removed from sticky fingers, naps postponed too long. It was lovely, chaotic and warm.
I thought how nice it would have been to bring Isaac along. No one would have batted an eye, but it would have been too hard for him: the noise, the crowd, the jostling. And we would be distracted; worried about his anxiety level; unable to catch up with friends. Instead, he spent the afternoon happily climbing the monkey-bars at the playground. Was it the right choice?
We'll be talking about this topic with him more and more in the coming months. In fact, our latest Gerald and Piggy book is called I'm Invited to a Party, which Isaac persists in calling "I'm Invaded to a Party" (under the circumstances, probably a more apt title).
I wonder if we'll ever stop wondering whether to bring him along to parties or not; if it's healthy and right for him, or it's not fair: too loud, too busy, too, fast, too much.
It's a lot to juggle and impossible to know what's right: when to rush into the unknown, and when, finally, just to yield.
Yes, this is pretty much it. Gears, gaskets, belts, a little tape, some WD40, and a decent cup of coffee in the morning, gulped, if I'm lucky, during a few quiet moments before all hell commences.
Nothing makes much sense, there is a pile of things to do (emails unanswered, blog posts unwritten, trips to the store in search of googly eyes for a craft project) and homework, always homework.
We drive to school, and Isaac reads the signs easily now: Masonic, Fulton, Stanyan, Arguello, and the numbered avenues. He reads "Road Work Ahead" and "End Road Work" and he hops jauntily out of the car when we get to school, his hand warm in mine.
He's a Kindergartner. He's made the transition.
But he's struggling, as are we. There's not enough support for him, and he's frequently left to his own devices among 20 other children. He worries about all the noises at school: flushing toilets, bells, intercoms, the clamor of recess, the echo of the cafeteria. He tends to wander and perseverate. And the pace of things--it's a lot for him to manage.
Sometimes the other children help him: one little girl likes to take his hand when we walk into class and lead him to his spot on the rug for circle time. Last week, as J. came to drop off some field trip permission slips at school, a few kids came to pat Isaac's back and help him calm down when he started crying. It's very sweet. We wonder how long it'll last.
This week we have parent-teacher conferences, and once again we will try to make sense of our roles as his parents and advocates, while supporting the community as best we can. That is to say, we'll try to get him what he needs--without being [insert expletive of choice] about it.
Inclusion, I've come to believe, is the wrong word. It implies a compromise, a negotiation, noblesse oblige, even. And it shouldn't be a charitable endeavor; my kid, with his quirks, challenges and talents, has as much right as any other to shine in that classroom. His learning style is just as valid. But he needs to be met where he is.
But it's clear that no one has the right tools for this, and he--like so many other special needs children--is paying for it.
So we worry, and we don't sleep well, and we're struggling. And as a result (oh, and yes that pesky global financial crisis), we're reprioritizing a few things, and trying to hunker down and take care of him, and of ourselves.
Back when Isaac was about two and we were investigating additional interventions for him, I spoke to the representative of a local autism services organization. She stressed to me how important it was that I get Isaac into this particular type of program because, she explained, a child's neural plasticity is greatest before the age of three. So it was, in effect, a race against time, and every second wasted was a second in which Isaac's future would be forever limited. So we might want to sign up right this minute.
I hated that conversation: the implication that we weren't doing enough already (speech and OT), that this was the right program for a child she hadn't even seen. But most upsetting was this idea that at a particular point not long in the future, everything would be "cooked" and we had only a small window left to affect the course of our son's life. Tick, tick, tick.
Of course it was horseshit.
Kindergarten has been a hard adjustment. Aside from the question of support (not nearly enough, and about which I hope to have an update soon), the sensory environment is completely overwhelming for Isaac. Twenty kids in the class, about 400 at the school, a huge playground, intercom announcements, assemblies, a loud, echoey cafeteria, and, worst of all, recess. In a word, school. Very much like my old elementary achool, when it comes right down to it, but a completely different experience for him.
He comes home exhausted, hyper, crabby. He has far more frequent tantrums, and they're longer and more intense. The pattern, for the past few weeks, has been like this: by Friday he's not doing much work at all, Saturday is a nightmare, and by Sunday morning he's happy again and goofing around the house. He cries Monday mornings, Tuesdays through Thursdays are a little better, and then by Friday he's completely spent. Do we have twelve years of this to look forward to?
Yesterday was rough. He had a couple of really long tantrums, one of which was prompted by the fact that I refused to let him watch Thomas the Tank Engine in the room in which his father happened to be sleeping. I said he could watch it in the front instead. "I want to watch Thomas in the baaaaack!" he yelled, and that was pretty much it for the next 45 minutes.
I tried to explain how Daddy felt: that he was sleepy, that he needed to rest. But I couldn't get through, and couldn't figure out whether it was because he didn't conceive of the idea that his father has feelings, or that he knew and understood, but didn't care.
Which is worse?
Maybe there's a third option: that he knew, but was too upset and emotionally drained to behave accordingly. That's a variant of the latter, I guess, and I think it's right. Once he started to calm down, I asked him why I had told him he couldn't watch TV in the bedroom. "Because Daddy wanted to sleep." He knew.
And so when J. and I are on the sofa at night watching movies but really thinking about him, we nearly always conclude with the reassurance that, after all, he's only five. It's our fine print. It's our "out clause."
He's just a little kid, we remind ourselves. This is just a phase. He keeps growing and changing all the time.
But one day soon he won't be little anymore. He's already bigger, stronger. More is expected of him: he has homework, for heaven's sake. So will we get to a point where that out clause is just an artifact of an earlier, more innocent time? Do we have to prepare to give it up one day? Or is that a betrayal of his potential?
What is the right balance between faith and acceptance?
Here in my city, we're not used to 90 degree weather, and we wilt like orchids in the heat. June is famously cold, July and August are unpredictable and September is usually warm, sunny and lovely.
All summer, we drove up and down the hills as freezing tourists in hastily-bought sweatshirts passed by, clinging to cable-cars for dear life. Isaac grew, he read his first book, he got his first relatively successful haircut, he handled the dentist, the doctor and the developmental optometrist with aplomb. And there was more perseveration, more language, more affection and playfulness, more rigidity, more maturity and more obsessive-compulsive behavior.
His emerging sense of independence--of the desire to understand and try to control his environment--means that we have more compulsiveness to--what? Manage? Endure? Gently redirect? If only. Like so much in our world, it's good (desire for independence) and hard too (obsessive, sometimes even frantic).
And then there's school, and with it a sensory bombardment that is at times excruciating for him. He comes home exhausted, crabby, hyper, starving. He's immovable or he's bouncing off the walls. He wakes up in the morning saying, "No recess. I don't want to go to recess." I ask him why, and it's so obvious it hurts: too. much. noise. No structure, though he doesn't verbalize that. Children running past him, screaming.
How exactly is this supposed to be fun?
We've arranged for more support for after care. We're hoping to get more support for the transition times: lunch, recess. He seems to like his teacher and is already mentioning one of the kids.
It's Sunday, and after a low-key day yesterday followed by twelve hours of sleep, he's happy, relaxed, playful and silly. He and his dad are playing a game of smoosh (in which they smoosh each other with pillows) as I tap this out on the bed.
I am hoping that we'll find our groove. After two years of consistency and support, we're out there, and there's no going back.
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.
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.
For some reason, I don't know why, I'm actually a fairly superstitious person. Whenever I'm in a plane, I touch my wedding ring at takeoff. I don't like to say things are going well, even when they are. I guess it must be hereditary: my grandmother used to warn me to stay out of range of Aunt Grace, who'd spit three times whenever something particularly good or bad happened. And at big events--weddings, funerals, graduations--I tend to scrutinize the details for omens: a dying flower, a stained skirt, a broken dish. I don't want to. I don't even realize I'm doing it half the time. I just do.
All of which is to say that yesterday, Isaac's preschool graduation, was a nest of signs. Would he sail into the room (signaling success and happiness in the years ahead)? Would he refuse to enter (signaling a future of pain and isolation)? Would he tell us he wants to go home (even worse)?
He's just a kid, I told myself as we walked the three blocks to school. Let him be. Let him do what he does. It'll be fine.
Isaac held my hand as we crossed the street, then ran ahead, laughing, as soon as we stepped onto the sidewalk. When we entered the school building, he shied like a nervous colt. He knew a "celebration" was coming. And he was not at all sure that this "celebration" was a good idea.
We spent a few moments in the playroom with the other kids, who were a generally a blur of hair and socks and faces and the occasional shirt and tie. Isaac contented himself by swinging from a chair suspended at the end of the room, while a classmate pushed him.
Finally, it was time to go in. He balked. "I don't want to go to the classroom," he told us. "I'm worried about the noise."
What can you say to that? I held my camera gingerly as the children and parents trooped off. Finally we were alone--J, Isaac, me...and my camera, which was starting to feel leaden in my hands. I took a few photos of the room to keep myself occupied. The minutes ticked by, and finally J. let out a deep sigh that pierced my heart.
It's not prophecy, I thought. It's not. It's just what's happening now. But I could feel that we were in that moment, the one where we stand on the outside of every rite of passage for the rest of our lives, looking on.
From time to time, people came in to visit us. Periodically, we asked Isaac if he wanted to go in.
"No," he said. "I want to stay here."
Finally, abruptly, Isaac stood up and walked over to the entrance to the classroom. He sat down in J's lap in the hallway and watched as the children sang and talked about how, at times of change, it's okay to feel happy and sad at the same time. And then the teachers produced white paper bags filled with pictures and stories from the year, each with a child's name, and began to hand them out.
Isaac peered inside as the children retrieved their bags. When the teacher called his name, he stood up, strode right into the classroom among the other kids, and took his bag. He spent the rest of the celebration in the classroom, in the throng of children and famiies. He ate a snack, hugged and kissed his teachers, and took pictures with his friends. We stayed until the end. Finally, I walked him to the yard and left for work while J. stayed to help clean up.
As I walked back to the car, it struck me: this is so completely characteristic of my son. He waited until the tail end of normal range to walk. We wondered if he'd ever speak. I didn't know if he'd ever say my name, or what he was feeling, or what he did that day. But, at what feels like the very last second, he decides he's ready, and he does it. Whatever it is.
As tough as it was, I think yesterday does have something to tell us about the future. It was an omen. A pretty good one.
Thursday night, when Isaac was in the tub, I used the opportunity to bring up the dreaded topic and see if I could get more information out of him. Here's our conversation, as accurately as I can reconstruct it.
Me: Isaac, what are we going to do tomorrow?
Me: What do you mean by "no"?
Isaac: I want to stay home.
Me: But there's school in the morning.
Isaac: No school.
Me: Why don't you want to go to school tomorrow?
Isaac: Because I want to stay home.
Me: Why do you want to stay home?
Isaac: Because I want to play at home.
Me: How do you feel about going to school?
Isaac: I feel worried.
Me: Worried? What are you worried about?
Isaac: The fire drill.
BINGO! He puts his hands over his ears and starts making a beeping sound: BEEP! BEEP! BEEP! BEEP!
Me: Isaac, was there a fire drill at school?
Isaac (whispers): Yes.
Me: Was it very loud?
Isaac (whispers): Yes.
Me: How did that make you feel?
Me: You know, most people don't like fire drills. But tomorrow at school it will be quiet. There won't be a fire drill. Do you know what to do if a fire drill happens?
Isaac: Cover your ears.
Me: That's right. We cover our ears. And that makes it quieter.
Isaac: I was sad.
Me: Why were you sad, sweetie?
Isaac: I was sad because [T] (his teacher) picked me up.
Me: Okay, so maybe tomorrow you can tell [T] how you feel.
Eventually, Isaac asked for a "fire drill story." For those of you interested in social stories, I can tell you that we've been able to adapt them lately so that they're a lot less work than they used to be (unless, unlike me, you are extremely crafty and a huge fan of lamination). So this is a pared-down version, which works if, like Isaac, your child has enough language and engagement to contribute to the story but still needs some help putting it together. It went something like this (the bold is for Isaac's contributions):
Once upon a time, there was a little boy named Isaac. Isaac lived in San Francisco. One day, he was very, very upset and started to cry.
His mommy said, "Isaac, why are you crying?" "Because I am worried about going to school," Isaac answered. "There was a fire drill at school, and the fire drill is too loud."
His mommy thought about this for a moment. "What do we do when there's a fire drill?" she asked. And Isaac said, "we cover our ears."
"That's right," Mommy said. "We cover our ears. And if we're scared, we can ask our teacher for a big hug." And so Isaac went to school, and there was no fire drill, and he was very happy. The End.
The next day, I took him to school. "First go to school, then Daddy will pick me up, then we'll ride the elevator," he said. (The elevator is still wildly popular around here. Go figure.)
When we got to school, he strode right in, went right up to T., the teacher who had picked him up and carried him into school, and gave him a hug. T. sat down at the tiny child's table, my son looking over his shoulder, and he began to dictate a new letter:
I want Momma to come back to school. Because I don't want the fire alarm. I want you to read it and write it again. And again."
This little missive came home in his lunch box, along with another piece of paper that stated, simply, "No fire alarm today!!!"
I'd say that sent a pretty clear message to the American people, wouldn't you?
Since then, he's been perfectly relaxed. We tell a few stories, we write a few letters. We go to school. And he's fine. Just fine.
This morning, our little family is going to a "playdate/orientation" at Isaac's future Kindergarten. It's just the sort of casual, "just drop by and play" affair that usually sends us into panic mode. Will he flee? Will he run the perimeter? And, reading the tea leaves in every situation:
What does it mean for the future of humanity?
We've already started the beginnings of a social story to prepare him (and us) for Kinder. We've heard it's a warm, involved community. It even has a Yahoo group!
But it's new. And new is, well, challenging for us.