Call Me, Ishmael
So there we were, my husband David and I, on a road trip with our thirteen-year-old late last July, and I hadn’t a thing to wear. And when I say road trip, you have to understand that I’m being somewhat disingenuous here — kind of like Ishmael saying he had signed up to go on a little fishing trip with a slightly wild-eyed one-legged captain named Ahab. If you think it’s easy to pick the right outfit to see an experiential program in the Northern California wilderness, one you hope will take your high-functioning autistic thirteen year-old with a temper like an IED, trust me, it’s not. I didn’t want to look like a dolled-up tart, someone who would ditch their child in the wilderness and bolt for the nearest mall, but I didn’t want to look serious and severe, like a buttoned-up stiff and tweedy schoolmarm incapable of raising a child with special needs, either.
I’m no psychologist, but I suspected that my indecision about what to wear ran deeper than simple wardrobe anxiety. Earlier in the week, in a misguided attempt to get at the root of whatever was driving my clothing dilemma, I had entered “what kind of parent sends their autistic kid to boarding school?” into the Google search field, but my search yielded nothing useful. I got page after page of links to alternative education sites, a “Yahoo!answers” response beginning with the words “No parent wants to place his child in a residential program…,” and links to some treatment centers for severely impaired children. Nothing came up about guilt, anguish, ambivalence, despair, or shame — nothing at all.
The truth was, some parents do want to place their child in a residential program. Desperately. David and I, for instance, had fantasized about it for more than a year. Like most fantasies, ours were airbrushed and abstract: we didn’t know what such a program looked like or what, exactly, it would do for Jordan. All we knew was that it would get him the hell out of our house, where every wall adjacent to a door handle bore a doorknob-sized hole, where half the windows had had to be replaced, and where the neighbors must have been either profoundly deaf or even more profoundly indifferent — or maybe just incredibly tactful — to ignore, for months on end, the sounds of doors slamming, voices rising, and things breaking.
This was not exactly what we had in mind when we decided to have a baby. By all accounts, we should have had a genius; at least that’s what our friends predicted. “You’re going to have the smartest children in the entire world,” they said, and although we modestly waved them away — “Oh, get out of here!” — secretly we thought so too. Jordan was born right as David was starting his psychiatry residency at Stanford and I was finishing my dissertation in Comparative Literature. We were barely 26 years old, smart and ambitious, M.D., Ph.D., and adorable baby in hand.
Jordan was indeed adorable: blond, round, dimpled, winsome. He met all the physical milestones and sat up, crawled, stood, and walked almost exactly on schedule. He also hated being held, avoided eye contact, didn’t babble, didn’t point, didn’t play with toys, didn’t string words together, and seemed to exist in a universe separated from ours by an invisible Plexiglass shield. He had a dazzling smile and a propensity to chortle to himself, in appreciation of some private joke, but his happiness was diffuse and non-reciprocal. When we came to pick him up at daycare, the other children clustered around us excitedly while Jordan sat in the corner opening and closing the doors on the Fisher-Price play kitchen; when we went to the zoo, he showed no interest in the animals and spent most of his time running away, his head oddly tilted to one side. When he was two and a half, a visit to a psychiatrist confirmed what we already dimly suspected but didn’t want to acknowledge, not in so many words, anyway: he had extensive development delays in fine motor, cognitive, speech, and social skills. Extensive enough to be diagnosed with PDD-NOS: Pervasive Developmental Disorder, Not Otherwise Specified. We would be eligible to receive county services if he was diagnosed with autism, so they gave us that too, just in case. High functioning autism, the psychiatrist said. “At least he’s high-functioning,” we said with a kind of desperate bravado; living in Palo Alto, where everyone’s child had to be good at something, we couldn’t fall behind, so that’s what we were going to be good at — autism.
And at the beginning, we were good. We were better than good. We did what any over-educated, high-achieving parents with broken hearts and dashed ambitions would do: we went to the Stanford medical library and checked out every book on autism we could find. We read compulsively and decided to put together an at-home behaviorally-based program for Jordan. He would be rewarded for positive behaviors (speech, appropriate play, eye contact, social interaction) and redirected from inappropriate ones. David put together a binder in which we kept track of drills targeting receptive and expressive language, self-help skills, play skills, and social skills. We taught him to say “yes” and “no” in one afternoon using an aversive (an olive) and a reinforcer (Cheerios and pretzels). We taught him to say “vroom” while pushing a toy car along the floor and “moo” while putting the toy cow into the plastic barn. Using flashcards, we taught him what to do when it’s raining (“get umbrella”), when you’re hungry (“eat”), when you’re tired (“sleep,”), when you’re sad (“cry”). We taught him to make eye contact while requesting a desired object by holding it at eye level and prompting him to say the name of the object. We took turns shadowing him at preschool and coaxing him into social interactions, however minimal, with his peers. Given the demands placed on him almost every waking minute, Jordan was remarkably cheerful and cooperative; what was more, he made phenomenal progress and rocketed up the developmental charts. Sure, he was scattered and spacey and didn’t really know what to do with himself when left alone for even the briefest period of time, but he was aware and alert and talking and would even hug us occasionally, if he was in a good mood and one of us held his hands together behind the neck of the other for a brief moment.
Thanks to the combined efforts of remarkably patient and gifted teachers and classroom aides who managed to be both unobtrusive and nurturing, Jordan somehow made his way through elementary school. Sure, it was touch-and-go at times: there were the visits to the principal’s office; I got called at work when, in first grade, he decided to take a wide interpretation of DEAR (Drop Everything And Read) time and drop his pants. But mostly, he did pretty well. He had a few friends with whom he tossed a ball after school. Many of his peers knew him from kindergarten and were accustomed to his eccentricities. As far as they, and most of their parents were concerned, Jordan was just like everyone else. And then came middle school.
Somewhere in sixth grade, Jordan began hitting the wall, figuratively and literally. He became oppositional, defiant, threw titanic tantrums and barstools, talked back to his teachers, and blatantly lied about and denied responsibility for small and large offenses. (“That’s good, isn’t it? Lying?” asked my mom hopefully. “Aren’t autistic kids supposed to be incapable of lying?”)
We read some more. We tried behavioral charts and social stories and journals and rigid reinforcement schedules and books with titles such as “Your Explosive Child.” We read other books, books that promised miraculous transformation through active listening, unconditional love, and cooperative limit-setting. We tried a complicated cocktail of medications; we saw therapists, jointly and separately, and psychiatrists — also jointly and separately — specializing in high-functioning kids with autistic-spectrum disorders. None of it helped. There were some teasingly bright windows, to be sure, whole weeks where Jordan appeared to be engaged, interested in others, and willing to at least entertain another point of view, but mostly he stormed about the house in a towering rage at this or that perceived injustice. He yelled and slammed doors, David and I yelled and forced doors open, and Noah and Mara, Jordan’s younger brother and sister, cowered under blankets in Mara’s room with the door closed.
For someone with an ostensibly pathological impairment in social cognition and emotional reciprocity, Jordan seemed to have an astounding ability to sense exactly what would push someone’s buttons. He would come up to you with a maddening, lopsided little smirk, and you knew exactly what was coming. One of his teachers took to calling this “the twinkle” — as in, “Jordan is twinkling” — but to us it seemed more like short-circuiting. You could practically smell the singed wires. He would follow his sister around, taunting her, until Mara lashed out at him or ran in tears to her room. He repeated everything his brother said, over and over, sometimes in a monotone, sometimes in a British accent, and when Noah exploded, Jordan would laugh and run away. He came close to knocking another student down while riding his bicycle toward him at full tilt — “I was going to swerve out of the way at the last minute,” he said later — and was suspended. He cracked up a hallway full of kids by yelling, “Look, an inflatable principal!” as the principal, wearing a puffy vest, walked by him one morning, and received a referral. At least that was funny — David and I had a hard time keeping a straight face — but the principal, a small, curly-haired woman with a pinched face and a very small mouth, was not amused at what the referral termed “disrespectful language.” I had many soulful, hour-long conversations with the vice principal in charge of discipline, who tried to be encouraging and talked soothingly about learning from mistakes, but we did not learn from mistakes at our house. We repeated them over and over, at higher and higher decibels.
If sixth grade was bad, there was no getting around the fact that Jordan’s seventh grade year was an unmitigated disaster. He was disinhibited, rude, and disruptive in the classroom; he refused offers of help from teachers, aides, and peers; he was chronically late to class; he lost assignments, or completed them haphazardly, or balled them up and stuck them in his backpack, where they sank to the bottom of a sea of half-decayed sandwiches, granola bars, and leaking water bottles. Then he would come home, where he teased and terrorized his siblings, harassed the cat, left a trail of socks, shoes, notebooks, loose pieces of paper, half-finished glasses of pink lemonade, and shredded cheese (debris from his quesadilla-making efforts) everywhere he went, and tantrumed. He tantrumed when he couldn’t find his socks, when he spilled shredded cheese all over the counter, when — at 10:30 p.m. — he discovered that there was a lengthy assignment due the next morning and he did not know where the actual sheet describing the assignment was. His face would become distorted, his facial features would thicken, his skin would turn red and mottled, he would flail his arms, striking out at anyone and anything in his way, and he would yell. Everything was fair game, and nothing was fair. It wasn’t fair that the cheese spilled; it was his sister’s fault that he hit her because she was provoking him; he couldn’t find his assignment because he was in special ed., and if he weren’t in stupid special ed. but in regular ed., like everyone else, all these stupid people in special ed. would stop making him so miserable and making him follow stupid rules and ruining his life.
Jordan had a point there. Somewhere along the line, he had become painfully conscious of the fact that he was not like everyone else. We were open with him about his diagnosis, about what it meant, about how far he had come. We showed him the initial evaluation and the binder where we kept the discrete trial data from when he was a toddler. Now, unlike elementary school, where he would only occasionally get pulled out of the classroom into the resource room, he was in mainstream classes three quarters of the school day, but his base of operations was a special day class. C9 — named after the building and room number — was a combination of homeroom and Language Arts classroom designed for 6th, 7th, and 8th grade students diagnosed with high-functioning autism spectrum disorders, a designated “social-cognitive” classroom, with a special curriculum to teach social and peer skills. Most of the kids in C9 were profoundly indifferent to fitting into the world beyond the walls of their homeroom, and in fact sought refuge there during lunch and recess, times that they were theoretically free to mingle with their mainstream colleagues. Jordan, on the other hand, did not want to be in C9 with classmates he dubbed “freaking weirdos.” The room was cozy and comfortable, with couches, a refrigerator, and Christmas lights twinkling near the ceiling; Linda, who had been teaching there for years, also strung Tibetan prayer flags the length of the room, clearly believing that her kids could use all the help they could get. But Jordan wanted none of it. He wanted to mingle, to be like everyone else, to make his way through the world without tripping and spilling things and losing assignments, to casually high-five his friends on his way across the quad. He wanted to be normal. But while he was not entirely, and certainly not obviously, impaired, he was not whole and sound , either. Normal was a long way away, just barely, but distinctly, glimpsed on the horizon, and that distance was like a maddening itch Jordan could not scratch, so all his manic energy, all his frustration, all his inarticulate rage went into making everyone around him miserable. And here he succeeded beyond anyone’s wildest expectations. Everyone was fed up with him: David and I, the school administration, his teachers, who had taken to shrugging helplessly and rolling their eyes during interminable conversations about Jordan and his misdeeds, even Linda, who had what seemed to possess inexhaustible reserves of patience and a rueful, been-there-done-that wisdom. We don’t know what’s up with this kid, they all said in a variety of accents and inflections. We’ve never seen one like this before.
What Jordan was was liminal — that was the word that flashed in my head during yet another dead-end conversation with the vice-principal. In my graduate student days, when I was childless and free and a hot-shot teaching assistant, I heard the word during a lecture on Tess of the d’Urbervilles and was instantly smitten. It was exactly the best and the most evocative way to describe Tess. In a totally different way, Jordan was liminal too. Maybe he was not poised, as Tess was, between aristocracy and peasantry, but he certainly was stuck somewhere between nature and culture, between the crossed and chaotic signals his brain was sending him and the orderly demands the rest of us imposed on him. There was no good place for him: he was neither here nor there. At times, and with maddening inconsistency, he behaved normally enough to give us all a false sense of hope and optimism. “He’ll grow out of this!” we would say. “Everyone develops at a different pace!” But Jordan’s triumphs were invariably followed by crushing setbacks, and eventually, we had just had enough. We weren’t even sure Jordan was autistic anymore — or what he was anymore, or how to help him. At one point, David had looked up the diagnostic criteria for Oppositional Defiant Disorder, which suited Jordan to a t, except for the planful malice part, since Jordan was too disorganized and scattered to plan anything properly, including how to make a quesadilla without covering the entire kitchen with cheese. “Who would have thought,” said David on one particularly bad evening, “that a combination of your and my DNA could be so toxic?” It would have all been kind of cool if we were all fictional characters in a book with a happy ending — triumph! recovery! Jordan goes to Harvard on a full scholarship and spontaneously hugs his parents in gratitude as he boards the plane to Boston! — but in real life it mostly just sucked. All the more so, because every once in a while, well-intentioned friends and relatives would point out how amazing they thought Jordan was, how he was so different from the “typical” autistic child (whatever that must have been, we thought. Raymond in Rain Man? He was way more impaired than Jordan, but he was pretty docile. The movie never showed him throwing shoes through the window or slamming doors or cursing or flinging a chair into the back of his six-year-old sister’s head). You two are phenomenal parents, everyone said. Even the vice-principal thought so. “How’d those two end up with him?” she was probably thinking. “Jordan has come so far because of you,” was what she said out loud.
That was the idea — Jordan would come far because of us, and then he would stay there. Somewhere outside the state lines, ideally, but we weren’t picky. We just wanted a break. We went to an educational consultant, who charged us $475 for a preliminary fact-finding meeting. The meeting consisted of our repeating information we had already provided in detail on the intake forms, after which she talked at length about how as recently as ten years ago, there were no programs at all designed to accommodate children with a diagnosis of Asperger’s Disorder or high-functioning autism, and now there were several. The problem was that they were expensive and difficult to find. And that’s why we’re paying you $475, David and I thought. To find them. Then she drew a long arrow on a dry-erase board in the corner of the room. “This is the continuum of the educational options available to you and Jordan,” she said, and drew a house at one end of the arrow, the one farthest away from the arrowhead. “The house represents the least intensive intervention, which would be the current home/school situation.” Then she drew another house, a few inches closer to the arrowhead. “This would be a local private school designed to accommodate children with cognitive, mental, and learning differences,” she said.
“Would that be like Armstrong School in San Mateo?” asked David, who had done his fair share of fact-finding online before the meeting.
“Well,” said the consultant, “I hate to jump ahead like that. We’d have to gather more facts and information before making that kind of determination.” Ka-ching, David and I thought.
“Anyway,” she continued, “the next step” — here she drew another house — “would be a residential program, one that would accommodate a range of students — typical students who are looking for a boarding school experience” (Or have parents who are looking for a boarding school experience, David and I thought), “as well as students with various learning differences. And this” — another house — “would be a therapeutic boarding school, one designed to treat mental illness of various kinds, as well as possibly serve as a rehabilitative setting for students with substance abuse issues. And here” — we had reached the arrowhead at last — “would be a therapeutic boarding school designed to support children specifically with autism-spectrum disorders.”
I noticed as she talked that most of her houses were crooked and wondered if the most-restrictive-option-house should have had bars on the windows or a more solid-looking door than the one she had drawn, just so that we could all be clear on what we were talking about. My hand itched to straighten some of the lines, or at least to add a wisp of smoke curling from a chimney, or a tree casting its shade on one of the houses, or some flowers growing nearby. As she talked, we learned that the farther down the arrow we traveled, the more expensive each option became, topping out at $70,000-plus a year for the “really first-rate” residential options. We learned as well (or re-learned, really, since this had been mentioned several times over the course of the meeting) that appropriate placements were quite difficult to find, which was why we would need to work in close collaboration with the educational consultant to continue our fact-finding work until, several months and many thousands of dollars later, we would find the perfect placement for Jordan.
So we made other inquiries — this time informally, talking to people who knew other people — and that was how we found Redwood Academy, a wilderness-based boarding school in the foothills of the Trinity Alps in northern California that emphasized small class sizes, learning by doing, and community-building among its students. The parents who recommended it had a son slightly older than Jordan, also with a diagnosis of Asperger’s, who attended the school for a year, and they spoke about it in glowing terms. They told us it was transformative, a place where their son had learned responsibility and life skills and confidence and from which he had returned with new insight about himself and his place in the world. They said the school was run by a family, and that everyone — the students, the staff, anyone who had anything to do with it, in fact — was “lovely.” “Lovely,” the mom repeated. “Really, really lovely people.”
I called them the next day, and spent over an hour on the phone with the intake coordinator, who indeed sounded lovely and also young and so kind that it was all I could do not to cry. She asked incisive questions about Jordan and about our family, about what we liked and didn’t like about his current school, details of his diagnosis and what therapeutic interventions we had already tried. By the time we finally made an appointment to see the school, which was at least a five-hour drive from Palo Alto, she seemed like an old friend. The appointment was on the day before Jordan was scheduled to finish Stanford Swim Camp, which, mercifully, was a sleep-away camp. We would pick him up at Stanford after dinner, drive to Redding, spend the night, and then drive the remaining 45 minutes to Redwood Academy, which was located in unincorporated Shasta County, near the town of French Gulch, pop. 100.
Surprisingly, Jordan didn’t throw a tantrum about being picked up early from swim camp. Nor did he make too much of a fuss about going to look at an actual boarding school. The idea of boarding school was not a new one; it had come up frequently over the previous year, mostly in antagonistic, high-pitched conversations that started with “That’s it! I’ve had it!” and went downhill from there. Once we made the appointment to see the school, however, we backtracked, trying to explain that boarding school was not a punishment but rather an option that would allow Jordan to regroup and live again with his family before starting high school. Our life with him had become untenable. He was failing at school; he was failing at home; something had to change, and this was our chance — and his — to start over.
Jordan went away to swim camp on Sunday, July 19, and peace descended immediately on our house. We played board games, read chapter books out loud, hung out by the community center pool, had uninterrupted conversations. I made dinner without once having to go and investigate why Mara was shrieking or to hear Noah’s muffled calls for help and find Jordan pinning him face-first to the ground, practicing his wrestling moves. “See?” David said, “This is what it’s going to be like when Jordan’s at boarding school.” I was less sure; Jordan had agreed to be picked up a day early from swim camp and acquiesced to the trip with surprising alacrity, and I was waiting for the other shoe to drop. “He’s going to be a nightmare on the drive up,” I said. “Or at the school. Plus, how do you even know it’s any good? And that they’ll take him?”
“Oh, they’re taking him,” David said. “The Boyds said it was a good school. And I’m not going back with him. So that’s that.”
“You’re going to leave him in the Trinity Alps?” I asked. “Just like that? No change of clothes?”
“Nope,” said David. “He’s got his stuff from swim camp, doesn’t he? We’ll ship everything else over later.”
“You’re kidding, right?” I said.
“Nope,” David said again.
Perhaps his five-day absence had done us all some good, but Jordan seemed genuinely happy to see us when we came to pick him up. He helped stow his duffel bag in the trunk, climbed into the back seat without trying to shove me out of the way and sneak in the front, and seemed — for the moment, anyway — alert and cheerful and cooperative. He asked what we had done while he was away, who was watching Noah and Mara, whether we would stop along the way or drive non-stop. (We stopped along the way, once to get gas and once at a Mini-Mart to buy David some beef jerky, me some coffee, and Jordan some strawberry pop tarts and orange soda. Hey, it was a road trip.) Jordan was positively charming. Here was a child who rarely shared information except to rant about some perceived unfairness or the absence of cream cheese in the refrigerator or to provoke someone in his vicinity, and he was telling us — with enthusiasm and aplomb — how they had learned at swim camp that everyone overcomes challenges, that even Ian Crocker battled depression and Michael Phelps drunk-drove, but both of them moved on from their mistakes and won medals and did really well. Since Jordan had not heretofore exhibited any awareness of irony, we took his comments at face value and nodded seriously. He sat there in the back seat, small and sunburned and animated, his blonde-streaked hair newly cropped, his goggle tan leaving raccoon-like ovals around his eyes. We talked about swimming and boarding school, why Jordan’s great-grandmothers weren’t much for swimming or other forms of exercise (as young adults during World War II in Stalinist Russia, they probably had not had extensive opportunities for organized physical activity), and whether eighth grade was going to be much harder than seventh. About an hour south of Redding, Jordan announced with a mix of surprise and pleasure that the ride hadn’t been nearly as boring as he thought it might be. “Why is that, do you think?” I asked. Jordan looked thoughtful. “I don’t know,” he said finally. “Because I talked the whole time?”
The good cheer evaporated when we got to Redding. It had been a relentlessly dry, hot year, and Northern California was engulfed by catastrophic wildfires. A sooty, dirty-gray smoke hung heavy in the night air and ash drifted here and there, even though the nearest fire was more than forty miles away. Our hotel room had the air-conditioning on full-blast when we entered, and you couldn’t smell the smoke for the generic hotel smell, but the smoke had already insinuated itself in our hair and clothes during the brief walk from the parking lot. Our window looked out into the parking lot, so we kept the curtains drawn. It felt like the world was ending, right there, outside our window, and here we were hunkered down in the Holiday Inn Express just waiting for the big explosion that would wipe everything out. But except for Jordan jumping on the bed and making repeated attempts to go outside and buy soda from the soda machine, the night passed uneventfully. No apocalypse — not yet, anyway.
The next morning dawned, gray and overcast, and in its dingy light everything seemed wrong. The top I brought didn’t look good with the capris; it had exactly the blousy, too-young-for-me look I had been trying to avoid, and I hadn’t brought a back-up. Jordan flopped on his bed, refused to get dressed, and met our constructive suggestions with surly rejoinders, among which “shut up” was the most pleasant. We ate breakfast at the Black Bear diner, where my “beautiful arrangement of fruit” turned out to be a bowl of soggy cantaloupe, brown banana slices, and wilted strawberries sitting wanly on a discolored leaf of romaine lettuce. Jordan ordered steak and eggs, the steak smothered under a blanket of white gravy so synthetic that it had wrinkles in it. David, who had ordered the pancake, sausage, and egg combo and promised to share, did not share, and also consumed most of Jordan’s biscuit while Jordan laboriously cut up and ate the steak and eggs in strained silence.
The bad mood continued on our drive up to the school along the winding curves of the 44. Jordan was in the back seat, alternating quiet introspection with increasingly loud protestations that he wanted to go home now, this instant, that there was no way we were even going to see the stupid school and he didn’t care whether we had an appointment or not. Then we missed our (unmarked) turn and there was nowhere to turn around for the next four miles and David snapped at me for not finding the driving directions quickly enough, and I pointed out that yelling at people did not make them respond any faster or more competently.
At the school, we parked in front of a rustic cabin with a wooden sign in front reading “Main Office.” Some teenaged boys were lounging on the front porch and looked at our car with frank interest. We were ten minutes early, which was good, since Jordan adamantly refused to get out of the car. “I don’t give a fuck if people are looking at me!” he snarled. “I’m not going in! And you can’t make me!”
The extra ten minutes proved handy for the combination of coaxing, cajoling, and thinly veiled threats that ultimately got Jordan out of the car. He walked stiffly, shoulders hunched, eyes to the ground, into the waiting room, ignoring the boys outside. We went in a pace or two behind — in case, I suppose, he bolted for the forest or something.
In the office, we met with one of the school administrators and went on a tour of the sprawling campus, following the dirt paths to the student cabins which rimmed a large field covered with dry, trampled grass. We found out that students received an allowance every week, the amount of which increased or decreased based on their behavior, and that they could similarly lose — or earn — privileges based on the same principles. We met the science teacher, a wiry, enthusiastic young guy with a bushy beard and hair that looked like it caught the raw end of a bungled science experiment using static electricity. He was crouched on the floor cleaning a paint-ball gun. “You ever play paint-ball?” he asked Jordan. “Dude, never? Sooooo fun!” Jordan muttered something unintelligible. The extracurricular offerings — white-water rafting, forestry, paintball, basketball, soccer — left him cold, and he groused while we were in the waiting room that any school without a pool and a swim team was a sucky school and there was no way, ever, that he was going to go.
The circa-’70s cabins were primitive, with shared bathrooms, but they were clean. Students were allowed to bring their own video game consoles — here Jordan perked up — but they were responsible for monitoring their usage and had to leave enough time for chores. There was no homework — all classwork was completed at the end of each class. Jordan perked up at that as well. The classes were small — so small that students couldn’t hide behind other students or goofy behavior. “Everyone in my class is accountable, to me and to everyone else and, above all, to themselves,” the science teacher said. We liked him. Less so the English teacher, who had way too much sparkly gold eyeshadow plastered on her drooping eyelids and seemed to have a hard time focusing her eyes or speaking clearly. She had an equally difficult time naming a single book in the eighth grade English curriculum. “I like to change them up every year, you know, for variety,” she slurred by way of explanation. Pressed which books exactly she alternated, she ran her fingers distractedly through her long hair and said, “You know, books that talk about the adolescent experience, like the confusion the kids feel. Like, um, maybe The Catcher in the Rye?”
At the beginning of the tour, I could not imagine leaving Jordan there. He was so small, and the campus, the towering mountains, the expanses of fields and forest surrounding the school, even the other students, were so big. But as the tour went on, the school slowly, insidiously grew on me, even in spite of the strung-out English teacher. Everyone’s heart was in the right place. Yes, the setting was rustic, but couldn’t all that nature do Jordan some good? Above all, everything operated in accordance with clearly defined behavioral principles whereby pro-social, positive behavior was rewarded and reinforced by adults who did not necessarily have the personal stake in the lives of the students that we did in Jordan’s. No way would his rudeness or resistance evoke the same kind of emotionally pitched, near-hysterical response in his teachers and advisors that it did in us. They would see it for what it was: an isolated instance of disruptive or oppositional behavior, not a harbinger of global failure. A bad day would be a bad day, not a precursor of homelessness or a life of crime or years of intense behavioral therapy going down the drain. He would get to start with a clean slate — heck, maybe he could even last the year without driving these good people crazy and getting sent back. At several points, David and I exchanged significant looks, but it was hard to know what he was thinking.
Back in the main cabin, Jordan went off for his interview with the executive director of the school, while we were sent to speak with an associate director. We tried to keep things light and pleasant, exclaiming over many positives we had seen on the tour — clear consequences, small class sizes, high expectations, beautiful setting. Larry, the associate director, steered the conversation right back into the deep waters we had been trying to avoid. “Tell me more about Jordan’s tantrums,” he said. “Is he often violent? How high — or low — is his tolerance for frustration? What does he typically do when he doesn’t get his own way?”
Ellen, the school director, was even tougher. She was tiny, barely over five feet tall, with close-cropped gray hair and striking blue eyes. She had spent close to a half an hour talking to Jordan, and we were both ill at ease when we walked into her office and he walked out, giving us a sideways look. Had he told her that we screamed at him uncontrollably? That we told him he would die alone in the street with no friends and no family? Yes, there was a context there, but these were episodes we were not proud of, and nothing provokes anxiety more than sending your disgruntled 13-year-old into a closed-door interview with an unfamiliar adult. “Jordan was very forthcoming,” she said, her hands neatly folded in her lap, and we both thought, “Oh, shit.”
“You probably know that about him,” she continued. “He’s very honest about his behavior. He told me he loses his temper easily and that he tantrums.” She shot me a wry smile. “Evidently, you’re more patient than your husband, at least according to Jordan.” We both nodded. She paused. “Look, I’ve worked with thousands of kids in my career,” she said. “I’ve headed a residential center for autistic kids, and I’ve worked with Asperger’s kids, and I’ve directed an outpatient center for severely emotionally disturbed teenagers and young adults before I founded Redwood Academy. Jordan is really not like any other child I’ve seen,” and we both thought, “Here we go. Here we fucking fucking fucking go.”
“I want you to know,” she said, “That both of you, and your good opinion, mean a lot to him. He’s very proud of what you do and who you are. When I asked him if I forgot to ask him any questions about himself, he said, ‘You didn’t ask me what my parents do.’ He told me you were a college consultant and a college teacher and” — nodding at David — “a psychiatrist. I know it probably doesn’t seem that way to you, but he loves you very much.” And suddenly, sitting in her wood-paneled office with its ornate carved furniture, I wanted more than anything to curl up in my chair and cry and cry and cry about how unfair and absurd this whole thing was. How exactly did we end up here in this faux-rustic (or maybe real-rustic — who knows?) office talking about what to do with this child who, as David put it on another particularly bad day, was sucking the life out of our family? How could it be that two adults who loved books and language and Groucho Marx movies and each other would produce a child like this? And so what if he really did love us? Both alternatives were equally horrible: either the director was wrong and he didn’t care about us, or she was right and he did, but something in his make-up made him utterly incapable of doing anything about it except pissing everyone around him off.
It came down to this: they wouldn’t unequivocally accept him, but they weren’t flat out turning him down, either. “I think this school could benefit him tremendously, and literally help him turn his life around,” she said., “I really do. But we have to have his buy-in. As of right now, we don’t have that. We could take him on a trial basis, but we couldn’t provide one-on-one staffing to make sure he didn’t run off into the forest if he got angry or frustrated. Or if he antagonized another student and got into a fight with him.” Admission would be provisional: they would take him with the understanding that if he proved to be unmanageable within the confines of the school, they would send him back. “And that’s not necessarily something you want to burden him with,” she told us. “To get expelled in the middle of the year, to come home, to find that maybe there is no room in his current home school… that would be hard for him, and I suspect he already has some self-esteem issues. He would have to work hard — very, very hard to make this work. He’s a kid who likes to be comfortable. This is not a kid who likes to be out of his comfort zone… and he is very comfortable with you,” she added, emphasizing the “very” and giving me another significant, and totally unreadable, look.
So we went home. We were all exhausted. David and I were mostly quiet, and Jordan was keeping up a low-level grumble in the backseat about the iPod not doing what he wanted. Occasionally he would kick the back of my seat in frustration and burst out with an expletive or another, and David would yell at him to stop it and threaten to take the iPod away. It was just like old times. To distract myself, I thought about Jordan’s comfort zone. Where was that, exactly? At home with us? In one of the crooked houses the educational consultant drew on her whiteboard? The run-down cabins at Redwood Academy? And there was that whole thing with him loving us. That had never entered my mind before. It didn’t seem that he loved us, or even liked us — quite the opposite, in fact — but somehow, Ellen, whose blue eyes seemed to have the capacity to see to the very bottom of your soul, had gotten that out of him in less than a half an hour. She seemed utterly convinced, in fact, that it was true, and it was hard to doubt her.
The I-80 begins a long, gentle descent as it branches off the I-505 and makes its way through Vallejo into the East Bay and toward the Bay Bridge. As we headed downhill at over 80 miles an hour, our conversation headed downhill as well. We had been avoiding discussion of Redwood Academy, hoping to postpone it until later, but here Jordan up and announced that he was not going to suffer the long drive again, ever, except maybe once a year to family camp over the summer, that the kids at Redwood Academy were weird and that the school was stupid and dirty and bad.
“Well, something is going to have to change,” David roared at him, “because we are not having another year like last year again. And if it means you having to go away, that’s what we’ll do.” As soon as he said it, we both knew, without saying a word, that Jordan was not going away. At least not yet. “Or it could mean you changing your behavior,” David added lamely. Or us changing ours, I thought, but didn’t say it out loud.
It was dark by now, and we were almost to the Bay Bridge. Beyond it was San Francisco, gleaming jewel-like across the bay. I was dead tired but fought to keep my eyes open so that if David dozed off I would be able to shriek and alert him to impending danger. My blousy white top was wilted from the heat and stuck to me uncomfortably, and I had kicked off the filthy flip-flops a long time ago. If we ever went back to Redwood Academy I would wear walking shorts and hiking boots like everyone else there. And a regular t-shirt. Jordan settled down, although he continued to mutter periodically, the only discernible refrain being “I am not going to that stupid school.” There we were, back where we started, ready to begin another year, another round of tantrums over misplaced socks and missing assignments. Except now we had the dubious reassurance that Jordan loved us. Was that why we had made the 500-mile round trip? To be told by a woman with piercing blue eyes who had talked to Jordan for a total of maybe 30 minutes that he really did love us? Maybe she was right; maybe things really would be different this time around. What were our choices, really? We would beat on, like boats against the current, like the Pequod in the wake of the white whale. We would move forward, or maybe go in circles. Or tread water. Or float. Or sink. In any case, we were headed back. We would try again. Once more, with feeling.
25 replies on “Call Me, Ishmael”
wow Irena, this was beautiful. I’ll be thinking about it for a good long time.
I enjoyed this story very much. I think Irena’s choice to end the work without a resolution to Jordan’s situation reflects real life. Sometimes, it’s about how parents cope with chronic illnesses not how the illness is cured. I found the revelation of how successful, intelligent parents respond to the frustration of facing issues that cannot be solved purely through self-education to be both honest and heart-breaking. There is no doubt that life tosses unexpected difficulties into the paths of parents. I believe how parents respond to them makes the difference. This story ends with a strong affirmation of the parent’s loyalty to their son. A good ending. A believable ending.
This was so painful and lovely, “really, really lovely.” I am hoping that knowing and believing in that deep, deep down love can and does make a difference. Synchronistically, I heard from two people recently, one a parent whose 12-year old is in boarding school abroad who said, “It’s really, really hard on the parents,” and another a woman who was in boarding school from first grade and said, “I never missed my parents.” I think that’s the point, somehow, that the missing outweighs the other stuff, for now.
Thank you for your lovely, honest writing. Your family is in my heart.
This is stunning, Irena. Thank you for honesty in this beautiful essay.
Irena, I want to thank you for being so honest. I almost cried when I started reading the truth in what you wrote. My son is nine and has been a roller coaster from the first year. He was the best baby…going from the bottle to the cup with ease. He walked at ten months, running across the floor and picking himself back up and running the other way. Somewhere along the way, it became clear that he wasn’t like all other kids. He has tested as gifted. At the same time, he has been unofficially labeled as oppositional defiant by a psychologist as well as borderline ADHD. That “borderline” diagnosis makes little sense when you picture how his teachers look at the end of a day when he has not had ADHD meds. Anyway, thanks for sharing your story.
That’s what it’s all about, isn’t it? Once more, with feeling… and then again.
I loved the essay. Every bit of it.
Good luck with the wardrobe quest!
Thanks for writing this, Irena. I appreciated going along on the journey this essay offers. I’ll be thinking about it for a long time. Someday I hope to have the chance to read more.
WOW. That’s all. I am emotionally exhausted from reading. Just keep writing. Please.
Irena, I felt like I was the fourth passenger on that trip along with you, David and Jordan. I chuckled (you’re so witty), and then I cried (you’re brutally honest), and then I chuckled again (because you’re just so darn witty!). I very much enjoy your writing and hope to read more of it soon.
Your essay is raw, honest, and unsettling, the way it should be. It’s so easy to be an objective, disinterested bystander who remarks, “Ah, what a lovely family. What great parents who dedicate their financial and emotional energies to support a special-needs child.” But, once we’re privy to your personal hell, you give us permission to admit to ourselves, that at times each of us lives our own version of hell with our children. Certainly, not the same. But, to each of us, it’s untenable at times.
Thank you for this glorious and painful essay.
Absolutely riveting essay! I appreciated how well it was written and how courageous it was to be so honest.
Thank you so much to everyone for reading and commenting. This was a difficult — and cathartic — essay to write, and I am profoundly grateful for your encouragement, empathy, and kindness. As a post-script of sorts: since the writing of this essay, Jordan has started school at our local high school, and while it has by no means been smooth sailing, he has been much more successful than we could have hoped. Taking that trip — and seeing him, and ourselves, in a different context — made a tremendous difference, and I would like to think that we have all moved forward, however incrementally, since that summer.
Gorgeous essay Irena. As a mom of a feisty (and who knows what other labels may be smacked on him sooner or later)five year old, I could relate your struggle. Appreciated the brutal honesty..that is what makes this so real.
My five-year-old son has a PDD-NOS diagnosis, and for the most part, we live between denial and hope, not daring to face more difficult possibilities.
Thank you for your essay, for the transparency and the language that articulates the nuances of your experience. Your words resonated.
I know you and I love you and I know and love your writing, always. But, this was beyond beautiful and honest and true. One of the many things we have always had in common is still true, the ability to be brutally, truthfully, beautifully honest and, brutally beautifully , consistently strong and capable of handling just about anything, sometimes this last attribute is to our own detriment but, it makes us who we are! For more then 20 years you have been an inspiration and a support to me, that continues to be true. I hope you can always say the same about me. I love you and your family, always.
This is a beautiful story. I so much wanted him to stay at the school. I was envisioning him coming out of his shell with the nurturing of the staff. It was not to be.
My son is 19 and has Down’s syndrome and autism. Once, before getting on the school bus, he reached around an hugged me, unprompted. I was stunned and thrilled. But, that was it. They don’t often give the types of cues that we expect. We have to learn to read their language and know that as much as they are capable, they love us! Congratulations on the positive feedback. We parents need them.
Wow, such a powerful piece! As the mother of a 15-year-old boy who has also had a rocky time of it in Palo Alto schools, especially middle school, I recognized so much here. You write with wonderful honesty and openness, and I hope I have the privilege of discovering how the story has unfolded.
Since reading and very much appreciating this piece several weeks back, I have wondered about the role swimming will play in Jordan’s continuing story. Reading that it (perhaps) calmed him for the drive to the school and that he was disappointed by the lack of a pool and swim team, I half-expected the subject to surface again before the end of the essay. Of course, the end in this case is not “the end” but rather a stopping point, and much will follow. I, too, hope for the privilege of reading more about your journey with Jordan.
This was so wonderfully written and I learned so much from reading it–I think any parent would. Thank you for sharing it.
You too, huh? Two academic professionals here with an explosive Asperger’s son and two other kids who are kind of well frightened of him. My heart goes out to you — I have had all the same thoughts: How did our DNA mix together to make this child? How do we cope with the fact that everyone else thinks he’s great while we yell and scream and break things and slam doors? Why didn’t we miss him when he went away to camp for a month? Was the peace and quiet we experienced what our lives would have been like if he had been different? If we didn’t have him? Wow. Just wow. I wish you were someone I knew. I wish I could have this conversation with someone who was real. One unfortunate effect of our familial stress and strange situation is that it seems to have driven away all our friends . . I found myself wondering if maybe someday when, if, he goes to college they might come back. (And thanks for your description of your son as a baby. I remember having the same weird feeling with our son — who always preferred inanimate objects, particularly electronics, to us; who said “iron” before he said “Mama.” I remember thinking, “No wonder women complain about being mothers. This is really hard and nothing like what I expected.” I think that’s what happens when your first child is an Asperger’s child.
What a touching, interesting piece of work! I really like how she implies that maybe it’s not only the son that needs to change and mature, but the parents as well. This really puts some things into perspective.
I have a friend who has a child (now an adult) with Augsbergers. I watched this kid grow up and mature into a nice young man. She had her share of challenges with him. She did home school her children so this was a plus. The boy would have never made it through public schools even with all the programs that they have to offer. They did find an area of interest..Art. He now goes to the Art Institute here in Minneapolis. His classes are challenging, he complains loudly but he is actually making it through the school, one class at a time.
I pray that you will find your sons area of interest and pursue that to the best of your ability. Especially because he loves you both. My best to you all.
I read the whole essay near tears the whole time. My sister was diagnosed with schizophrenia at 16. She was in a state hospital for a year. Here she received shock treatments which impaired her memory for the rest of her life. There were several other long term hospitalizations.
She lived with our family for a long time. However, eventually I had to locate a adult home for her to live in. I can certainly relate to the difficulty of knowing what to do with Jordan.
My hope for you is that with the improved understanding of autism and treatment possibilities as well as the intelligent approach you have taken that Jordan will have an easier life than my sister. Knowing that he loves you helps through all the difficulties.