Chapter One - Who Is Sasha?

My daughter's second grade class is sitting on the floor in the music room listening to a story. Sasha adores the music teacher, and Ella Fitzgerald, the subject of the day's lesson, is one of her favorite singers. You wouldn't guess that either is true to look at Sasha. While the other children sit cross-legged, regarding the book the teacher holds up, Sasha weaves among them, on hands and knees, scanning the floor for minute treasures--beads, pins, paper clips, ball bearings. The other children ignore this behavior; they are used to it. And though she does not appear to be, Sasha is, in fact, listening. Days or even weeks later, she may spout out facts about Ella Fitzgerald's life to me and her father, or she may play one of Ella's tunes by ear on our home keyboard.

The teacher finishes the story, then apologizes to Sasha because there isn't time today to sing the song she interrupted the lesson several times to request (she requests the same song every week, doggedly repeating her plea until the teacher complies). Instead, the class sings "Happy Birthday" to a girl who attended Sasha's birthday party a few months ago. Sasha regards her as a best friend. However, I am now aware of something of which I'm pretty sure Sasha is (thankfully) oblivious: she wasn't invited to the girl's party.

It is late April and my husband and I are deciding whether or not to pull Sasha out of the local public school she has known and loved these last three years, and send her to a therapeutic school in the fall. We are coming at this decision more than unwillingly, at the urging of my sister, who has two learning disabled kids of her own, and who insists that Sasha needs a special ed environment. Despite the fact that her view is corroborated by Sasha's psychiatrist, neuro-psychologist and therapist, and that Sasha's first grade teacher had recommended a special school the year before, I thoroughly intend to prove my sister wrong, to find evidence that Sasha is thriving in the mainstream. The clearest proof I have is from Sasha's second grade teacher, Ms. Eaton, who says--no, insists--that Sasha is fine. Nothing wrong with her at all. In fact, Ms. Eaton thinks my husband and I are crazy for even considering special ed.

The previous spring, after six years of gradual wakening to the fact that something wasn't quite right with our daughter, Sasha was diagnosed with Asperger's Syndrome (AS), a form of autism. While "classic" autism involves pervasive delays in language acquisition, cognitive and neurological functions, those with AS typically demonstrate above-average to superior intelligence, many with high verbal ability as well. Sasha presents a confounding mix of abilities and impairments. She is a gifted artist, humorous, an avid reader. Like other eight-year-old girls, she loves Harry Potter and Britney Spears. She loves to sing and tell jokes but bristles if someone tries to join her in such activities. Sasha reads on a seventh grade level and tests for spelling and vocabulary on an 8.6 grade level. In math, she is just below grade level. These discrepancies alone pose educational challenges, particularly in a school that ends in fifth grade. Sasha has difficulty accepting instruction, preferring to draw knowledge from books. She needs help with transitions, is disorganized (the "absent-minded professor" syndrome), has trouble staying seated, lacks safety awareness and is highly distractible, all features of her concurrent diagnoses of Attention Deficit Hyperactivity Disorder (ADHD) and Sensory Intregration Disorder (SID, in overly-simplistic terms, is a dysregulation of the central nervous system, manifesting, in Sasha’s case, as being easily overwhelmed or overstimulated by noises, people, visuals, tactile and taste input). In public, Sasha tends to be shy and withdrawn, reserving her most scintillating conversations and most trying behavior for immediate family. There are periods of the day when she's a wild animal: scowling, defiantly scaling walls, trees, banisters, with no thought of falling. During the day, much of this wildness is psychopharmaceutically controlled but at home, after school lets out, exhausted from the effort of holding it together all day, and with the medication waning from her system, Sasha "rebounds." An uncontrollable demon. By bedtime, mania and hyperactivity dissolve into anxiety, with Sasha fetally curled, terrified from having "flown too high". She must frequently be coaxed out of panic attacks. She can take hours to fall asleep only to awaken at 3 a.m. hyper and voluble, waking up everyone else in the household.

But the set of behaviors that most separates Sasha from her peers, that more clearly illustrates her diagnosis of Asperger’s--or, more accurately, Asperger-like symptoms--is her impaired social interactions and inability to interpret social cues. Whereas Sasha's peers intuitively know not to crawl in front of the teacher during the lesson, Sasha not only doesn't sense the inappropriateness of this, she may be entirely unaware of the teacher or class. Though she craves friendship, she tends to gravitate to children who are markedly cool towards her; conversely, she categorically rejects those children who express an interest in her. She sees nothing wrong with spending an entire playdate (an increasingly rarer event) engrossed in her favorite activity, reading. Such behavior may be accepted among five-year-olds, but with eight-year-old girls it goes over like the Barney song at a hiphop club.

One may feel, after reading such a daunting list of behaviors, that it would be obvious that Sasha requires a special ed environment, but behavior is evanescent (and medically altered) and observation of it highly subjective. In one situation, Sasha might quickly win people over with her delightful artwork or stunning literary vocabulary. There are also times when her play with another child has me bursting with pride: she and a cousin recently spent the day catching caterpillars then training them in acrobatics: to inch along a tightrope and crawl through a drinking straw. Further, it is hard to complain about a child loving books so much, even if she refuses to come to the dinner table without one. There are as many facets to Sasha's behavior as there are views through a kaleidoscope.

Before the music class, I was sure my sister was wrong. I first observed Sasha in her second grade classroom with her beloved teacher, Ms. Eaton. During Reading, Sasha happily settled down with a book, jumping up every few minutes to get a new one. During the second half of the period, her Consultant Teacher arrived and enlisted Sasha's help teaching a group of children word endings. She obliged, inventing riddles with answers that used the letter combination the Consultant Teacher was emphasizing. So far, she seemed to be doing fine.

When it was time to go to Music, Ms. Eaton reminded Sasha several times to put away her things (she shoved them into her cluttered desk), get her lunch and jacket, line up with the class. These reminders didn't strike me as unusual. By now, preparing Sasha for all major and minor transitions of her day is almost second nature to me. "Today the sitter will pick you up." "We're out of cinnamon raisin; I can only give you whole wheat." "Two minutes to bedtime." "In five minutes, we will leave the house. You may choose a toy to bring with you." Even more than with Sasha's three-year-old brother, I must break each day into discrete routines. If I forget a reminder, or spring a change on her too fast, Sasha is likely to melt down. This may include piercing screams, wholesale wailing, an adamant refusal to budge, destruction of objects, any number of dangerous activities we must restrain her from (like trying to lean out over the window guard), or kicking, hitting, scratching, biting or spitting. Fortunately, at school, partly because she adores Ms. Eaton and is generally reserved in public, partly because of medication, Sasha is able to hold herself together. She responded to Ms. Eaton's reminders docilely, each time pulling herself out of the dream world into which she so readily drifts.

Once outside the classroom, and Ms. Eaton's presence, Sasha's behavior deteriorated dramatically, despite her fondness for both the assistant teacher and the music teacher. During the entire period, Sasha crawled around, sometimes on her belly, not making eye contact. When the teacher asked her to join the others, she circled the group, started to sit next to a girl who gave her an encouraging smile then, at the last second, shot away to a corner, outside the periphery of children. She then resumed her aimless crawling.

Lunch was worse. In the cacaphonous cafeteria, the kids naturally paired off with friends, chatting, comparing lunches. Sasha sat alone. Twice, she went to the bathroom. By the time she returned, lunch was over. She had eaten only two bites of her sandwich--at my prompting. Most days no one prompts her and she eats nothing. She is painfully underweight, her lack of appetite exacerbated by the medication she takes for ADHD.

At recess, Sasha wandered the expansive blacktop scanning the ground, occasionally engaging with a child just long enough to report about an object she'd found. At the assistant teacher's prodding, she shot some basketball hoops but refused to take turns with other children. (During a few of Sasha's evening melt-downs, it has come out that a boy, or group of boys, grabbed her ball away and taunted her.) As the children lined up to go inside, I decided I'd seen enough. I threw Sasha a kiss goodbye--her looking wistfully back at me--and made my exit. I had thought a school observation would clarify matters in my mind, but I was more confused than ever.

Only upon reflection with a special ed consultant who had worked with Sasha in pre-school did I recognize that even the times Sasha seemed to be functioning, the classroom did not serve her needs. The Consultant Teacher (CT), mandated to work with Sasha three periods a week, was a reading specialist with no training in social or organizational skills. Communication skills commonly worsen as AS children, as they retreat more and more into their interior world, and following true to form, Sasha was having increasing difficulties with writing. The CT could have helped Sasha with this, but didn't. (I can’t know this for sure since the CT refused to tell me, much less keep a log of, what activities she did do with Sasha, insisting that she worked on what was "called for in the moment.") She also insisted on fulfilling Sasha's mandate during Reading, though Sasha clearly did not need help with this subject. I once suggested that if she must come then, she could at least present Sasha with more challenging material, at which point the CT made it clear that she believed I had fenagled services for Sasha to push her to over-achieve.

In public education, I quickly learned, enrichment and challenge are dirty words. As the principal explained to me, a school is only required to educate a child to grade level. Since Sasha read far beyond her grade level, the school could (would) do nothing for her. Sasha, on the other hand, was teaching other children reading skills. Though at first glance this seemed charming, Sasha does not need to learn how to teach (AS children are typically "Little Professors"), she needs help interacting with peers. Sasha was serving the class, rather than the other way around.

Though I did not observe any crawling in her classroom, the assistant teacher confided to me that Sasha did do this regularly. It is difficult to say what motivates this behavior--boredom or inattention, or anxiety. Many people with autism or AS rock rhythmically or flap their hands as a means of organizing themselves, settling the central nervous system. Sasha does not engage in these more typical repetitive behaviors but may have found her own unique way of relieving tension. In a class of twenty children, with a teacher who accommodates her eccentricities, this behavior might work to soothe Sasha's anxiety, but how would she fare in third grade in a class of twenty-seven children? Second grade is the end of early childhood education. From third grade on, the emphasis switches from socialization and learning to read, to academics and reading to learn. There would be more transitions with less preparation for them, more homework. While for the most part, Sasha held herself together in school, reserving her meltdowns for home, the increased pressure could be disastrous. Socially, she was already marginalized; the ostracizing and ridicule would only get worse.

My husband and I daily flip-flopped from one side of the argument to the other. When Sasha played appropriately with another child, we'd say to each other, "See? She's doing fine. She doesn't need a special school." Then, at a birthday party, we'd painfully look on as other children steered clear of Sasha and she isolated herself, either in response or because she was unaware of the social aspects of the gathering. We consulted family, friends, therapists, occupational therapists, doctors, educators. Sasha's therapist felt that while Sasha was "basically functioning" at her current school, and would probably make it "okay" through third grade, maybe even fourth, eventually she would need intervention. Wouldn't she be better off receiving it earlier rather than later? This point became key in our decision. Sid and I reluctantly concluded that my sister was right: Sasha needed special ed.

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