School

I have become obsessed with schools for one simple reason: I want my 8-year old daughter to attend one. And I want the school she attends to do her more good than harm.

My husband and I both grew up attending our neighborhood public school – his in the Chicago area and mine in the Los Angeles County school district. So, when Eliza was a baby, we assumed that she would eventually go to a neighborhood school just like we had. But, when Eliza was little, she was diagnosed with mild cerebral palsy. Since she was tiny, wore leg braces, and needed some extra physical support, we decided that we would put her in private school, rather than our neighborhood school which is large, crowded and underfunded. And so we researched our best options, applied, and sent her off.

Then, the calls from the school started and I began my education on education.

At first, when Eliza had troubles in school, which was often, we would be called in to talk with the teachers. At these meetings, the teachers or program heads would recount the most recent litany of horrors set into motion by my child: she refused to come in from recess, she didn’t complete her assigned coloring project, she had a tantrum when she was asked to line up with the other kids, she threw her book across the room, she chewed the erasers off all the pencils. After allowing enough time for shame and guilt to settle in, the teachers would look at me earnestly and remind me, “you know, we really expect kids to be independent learners.”

For years, I must have looked back at them with a befuddled expression. Eliza taught herself to read by the age of three. In school, she would routinely find whatever part of the room had the glue gun and settle in for the day. She would happily just mess about and not have anything to do with the teacher or the other kids. She didn’t care what the other kids in class were doing. In pre-school, she sat and memorized a French dictionary. She never made a fuss about being left at school. How much more independent could she be, I wondered? Were other kindergarteners so much more independent? Did they make their own lunches, drive themselves to school, hold down part-time jobs?

In the United States, it is good to raise an “independent learner” and bad to raise what would presumably be called a “dependent learner.” Indeed, in a nation that values rugged individualism, boot-strapping and a frontier mentality, my failure to raise an “independent learner” felt almost un-American.

Pop Quiz:
Which of the following illustrates an “independent learner?” (choose student A or student B)

(a) Student A is with a group of students all of whom are sitting at a table. Student A is doing the same worksheet on counting by twos in the same way that has been demonstrated by the teacher and is being done by every other child at Student A’s table.

(b) Student B is sitting in the corner reading Diary of a Wimpy Kid, completely ignoring the other students who are sitting at the table doing worksheets on counting by twos. Occasionally, Student B will get up, wander past the table where the students are working and say “Whatcha doing? The answer is 8” and then head over to the glue gun.

Answer: Student A, who is conforming to the group and doing what all the other students are doing is the independent learner.

I now know that “independent learner,” when spoken by education professionals does not refer to students who learn independently. Instead, “independent learner” translates roughly to “does not require the teacher’s attention.” Embarrassed and defensive, I would ask what the teachers were there for, if not to pay attention to each student? The answer was always the same: “the teacher is there for the entire class.” In other words, “your kid is hogging up too much of the teacher’s time.”

When not being called to the school to address Eliza’s failure to develop independently, we would be called in to discuss her disinclination to “transition.”

I am told that, typically, a child either handles transitions well or doesn’t handle transitions well. Most problematic is the child who is unpredictable in how she handles transitions, sometimes doing well and other times not. Eliza is of this ilk.

All day long, a first grader is told what she will do, when she will do it and for how long she will continue to do it. If it is time to do math, it doesn’t matter if she is in the middle of the very best chapter of Captain Underpants she has ever read. She has to stop and move on to math. She has to continue to do math until she is told to stop doing math. She has to line up with her classmates and pee because it is 10:20am. If she gets distracted and fails to eat her sandwich during the 20 minute lunch period, she does not get to eat lunch because lunch is over.

A “good transitioner” follows the schedule, without complaint and without regard for his or her own interests, desires, or needs. A “bad transitioner” insists that his own interests should carry some weight in what he is doing and lets you know his or her thoughts about the change in plans.

What would this be like for adults?

Let’s say it is Super Bowl Sunday, you are watching TV and you are 25 minutes into the game. It’s a great game. Your neighbor walks into the room, switches off the television and announces that it is time for you to scrub her toilet. If you yell, “Get the hell away from the television,” and turn the game back on, you have not transitioned well. If, on the other hand, you get up and say in a pleasant voice, “I’ve so been looking forward to scrubbing the toilet” and head off to the bathroom, you have transitioned well. In just a few minutes, while you are in the middle of scrubbing, a bell will ring. That bell will tell you that it is time for you to sit down and draw seven-digit numbers from a random digit table. If you drag your feet, try to get back to the TV, or insist on having your wife explain why it is that she needs you to compile a list of random seven-digit numbers, you are, unfortunately, again failing to transition well. On the other hand, if you gently set your toilet brush down, pick up your random digit table and ask, “would you prefer your random numbers be written in pencil or pen?” you have transitioned well. If you feel that you have drawn a sufficient list of random seven-digit numbers and wander away from this task in order to get yourself a snack because you are hungry, you are being distractible and failing to transition.

Eventually, Eliza was expelled from school in the first grade. I was shocked – who expels a six-year old from school? But national statistics tell us that very young children are being expelled from schools more frequently and at earlier and earlier grades. It is no longer unusual for a child to be expelled from preschool in the United States. These children are 4, 5 and 6 years old and they attend public as well as private schools.

As parents, as citizens of a democratic society, we should be outraged. But we are not. We assume that schools know what they are talking about and that something must be wrong with our children. We feel ashamed, take our children home, and wonder how we will ever get our child into another school.

But the truth is that something is seriously wrong with our schools. We are pretending to prepare children for the 21st Century by educating them in 19th Century schools. It is time to reinvent schooling so that it fits the needs and interests of our children, rather than the needs and interests of bureaucracies. Children are not standardized. Maybe schooling shouldn’t be either.

Regrets

“If you could snap your fingers and change her into a normal kid, would you do it?”

This year, it is a boy in the back of the class who is asking. Last year, it was a young woman in the second row, the year before that, a girl in the front row. Every year since Eliza was diagnosed with mild cerebral palsy at 18 months -- her autism spectrum disorder was not diagnosed until she was seven – I have come to talk with the Disabilities Studies class at the local university. Every year, I get asked this very same question.

I know the answer they want to hear.

I usually visit late in the semester after the students have spent months reading about disability; the politics of disability, civil rights and the potential for empowerment that comes from self-identification and finding a community and culture of those with similar life experiences. The silence that follows their question pleads with me. They are young. They want to believe that the world is – or can be – a just place. Like the rest of us, they do not want to believe that life can be capricious, unfair or disappointing.

I like them. I like their earnest idealism. I admire them for signing up for a class called “disability studies” – not exactly sexy. I think they are brave. I wish I could give them the answer that they so want to hear.

I want to smile, tell them that, yes, it has been difficult, but it’s all been worth it. I want to be able to say that I would never change her disabilities because that is who she is. I know this is the right answer, the one that restores a sense of order to life.

But I cannot.

Every year, my answer is the same: “Of course. I am her mother.”

This, after all, is not television with its simplistic message of strength through adversity. This is real life. And my daughter’s life is hard, too hard for such a little kid.

When the pediatric neurologist first diagnosed Eliza, he said, “Look, she is the same child that you had two hours ago, she hasn’t changed. You will take her home and love her just like you always have.” I hated him and his patronizing platitudes. There has never been, will never be, a question of loving my daughter. I love her more than anything else on earth and would do anything for her. But the doctor lied: she was not the same child. Two hours earlier, she had been a child with an easy future.

How can I make the students understand that wanting my child to be “normal” isn’t a rejection of who she is or a failure to love and appreciate all that is unique about her? I feel bad that my answer has disappointed them.

Most years, a student will also ask me if having a disabled child has changed me.

Yes, of course, Eliza has changed me.

But then every child changes his or her parents – it doesn’t matter what that child is like. At this point I will usually talk with the class about our cultural notions of a “core personality:” the idea that we have a stable self that moves through life and the world while experiences bounce off of us, versus the alternative notion that we have no pre-set stable core self, but are, rather a summation of our experiences. This less familiar notion of self means that we are, every day, actively engaged in what ethnomethodologists would call “doing being ourselves.”

For the students, this is a particularly unsatisfying response. My answer is suitably academic, but what they want me to say is that parenting Eliza has made me a better person. They want to hear that I have become more patient, kinder, less judgmental – better.

But it’s not true.

I don’t think that parenting has made me any less kind, less patient or less open to difference. But watching Eliza struggle to fit into the world has made me angrier and more frustrated with the world. Just ask any parents of kids who are different about school and you will open the door to a flood of parental frustration, worry and longing for a school – any school – that would at least try to understand and appreciate their children. I am angry that school will never be a given for my daughter, the way it is for “normal” kids. Facing bigotry hasn’t made me a better person. It has made me sadder.

And I worry more. A lot more. Because my daughter is an only child and my husband and I will die while she is still relatively young. We will make sure that she has a place to live and that we have done all that we can for her before we die, but eventually she will have to be out in the world on her own. And the world is not kind to people who are different.

One year, and only one year, a student asked me, “If you could have known what it was going to be like with Eliza, would you have had her?” This is, of course, a variation on the first question, but a more complicated one. My answer was also more complicated. I didn’t answer with complete honesty. I told the students that I didn’t know how to answer that question because, of course, I didn’t know…and I still don’t really know because Eliza is still changing and growing.

But if I am completely honest, the truth is that some days I have regrets.

If I had known how difficult Eliza’s life and our family’s life was going to be, would I have been more vigilant with the birth control? Some days, the answer is yes. Pregnant at age 38, my doctor required an amniocentesis. If cerebral palsy and autism had shown on it, what would I have done? I don’t know.

Try to understand – I am not saying that I don’t want my child, or that I don’t love and adore her. I think she is amazing and I am always, without exception, her biggest fan and champion.

But some days I just want to have a normal life. An easier life.

I have often heard parents of young children muse that they simply cannot imagine their lives without little Bobby or little Suzie. I wonder what is wrong with these people? Perhaps the sleep deprivation of parenting has dulled their imaginative capacities.

One afternoon last year, I was sitting outside a play therapy meeting with the other mothers of the boys and girls in the group. Eliza was new to the group, so I was just meeting the mothers for the first time. We could hear yelling from inside the room. I commented, “That’s probably Eliza.” Sure enough, a few minutes later, the therapist came out, dragging Eliza, while Eliza desperately tried to bite her. We got kicked out of therapy. Again. Most of the other mothers looked at me with pity or with smug pride that their own child was so much better behaved than mine. Except for one mother, the mother of an autistic little boy in the group. She put her hand on my arm and said, “It’s okay. You are among friends here.” Then she paused, and cautiously said, “You know, there are many days when I imagine what my life and my family would have been like if I hadn’t had Jason.” It was one of the kindest things that anyone has ever said to me.

Maybe all parents secretly imagine their lives without their children sometimes. If they do, I wish they would admit it once in a while.

Then maybe I could better understand my own complicated feelings and better explain them to the next group of students enrolled in the Disabilities Studies class.

Stranger Danger

“You better watch this one, Mom, she’ll walk away with anyone,” warns the nurse as she leads my three-year old daughter down the hall toward the scale. My daughter, tiny for her age, with blue eyes and tight blond ringlets tumbling every which way, never looked back, never checked to see if I was following, never showed the slightest bit of anxiety about walking away with a complete stranger.

“We are working on helping Eliza understand boundaries with strangers,” explains her preschool teacher, one year later. The teacher had pulled me aside at pick-up time to express her concerns about my daughter’s interactions with strangers. Apparently, earlier that day, a man had delivered a new couch to the classroom and before he left, my daughter ran up to him, hugged him and earnestly proclaimed her love. I pointed out that it really was a nice couch, but the teacher was not in the mood for my jokes. She was honestly concerned for my daughter’s safety, so I tried to listen and to murmur respectful, vague assent-like noises.

So, I suppose I should have welcomed the email that came home to all first-grade families two years later letting us know that my daughter’s class would be starting a “stranger danger” curriculum during the last week of the month. But instead of being grateful, I went online, booked flights, and arranged for my daughter to go skiing in California for the week.

I am not callous or cavalier. In fact, most people who know me would describe me as an excessive worrier and I do worry about my daughter’s safety. I can still feel the panicky, sweaty, nausea that crept over me one night last fall when my daughter ran out the front door of the house. It took me a little while to realize that she was gone and by the time I headed out front, I couldn’t find her. At 9:30pm, it was dark. I looked down the block to the busy street that intersects ours. I looked up the block to the park that seemed unusually ominous now that it was dark and deserted. First I called out using my most up-beat, bandwagon, let’s-all-come-out-now voice. Then I tried using what Eliza calls my “Sarah Voice” and demanding that she march home this instant. Then I just started yelling her name. The pitch and volume of my voice must have gone up because my neighbors starting coming out of their houses and joining the search. A mother from across the street ran to get her car keys so she could start driving around the neighborhood. Eventually, we found Eliza, down the block, hiding in some bushes, but not before I had run through every grisly kidnapping/child molestation/car accident scenario available to my imagination.

And yet, I have problems with the simple “don’t talk to strangers” rule that governed my own childhood, and those problems have created a kind of paralysis. I have taught my daughter nothing about stranger danger, even though I understand that I cannot watch her every second, that there will come a time when she is on her own and must negotiate a world of strangers, and that she will, someday, run out of the house again.

As a sociologist, I like strangers. When other people imagine vacationing on a secluded beach with no other people in sight, I imagine wandering the busy streets of Manhattan, Chicago, or San Francisco. Strangers represent excitement and the possibility of new discoveries, portals into other worlds we ourselves do not inhabit. Strangers offer the liberty of anonymity, the freedom to reinvent and redefine ourselves in a way that is impossible around those who know our past. Strangers are fun.

Yet, as a mother, and particularly a mother of a child with an autism spectrum disorder, I have absorbed and internalized our cultural wariness of strangers. While my sociologist mind may be calm and rational, the mother mind constantly interrupts like an overactive Twitter feed with warnings of impending danger.

On a recent visit to Seattle, my daughter insisted on talking to every single pan-handler, street musician and homeless person we passed. With each encounter, the mother voice in my head shouted “Danger! Danger! Danger!” These people are dirty, unpredictable, drunk, stoned and sometimes completely incomprehensible. “Don’t Touch!” But as the mother voice grows more shrill, the sociologist asks rhetorically, “Who is more interesting to talk to: the guy sitting on the sidewalk with a shopping cart full of random stuff all tied up with different bits of colored twine, feeding pigeons out of his hands or the man in a grey business suit, hurrying past while talking on a cell phone?”

My daughter’s autism spectrum disorder means that she does not read subtle social cues and so fails to experience that creepy, hesitancy that most of us feel around a dirty, semi-coherent, erratic street vagrant. In Seattle, Eliza didn’t care that she couldn’t understand half of what Pigeon Man was saying. She didn’t care that he was smelly. She was thrilled that he was feeding the birds. Without any hesitation, she plopped down on the sidewalk next to him and snuggled up against him while the mother voice in my head screamed “Stay back!…personal space!…H1N1!” Pigeon Man gave her a pat. He reached into his pocket and took out a dirty, many times recycled, plastic bag full of rolls, buns and bread and handed Eliza a chunk. Then he gently took her hand and coaxed one of the pigeons onto her palm. My daughter was ecstatic.

After years of stopping to talk with every single street musician we meet – sometimes even going out of our way, crossing the street, or going down an extra block just to pass by the street musician – we are yet to encounter one who has not been kind, gentle and playful with a little girl who is delighted by their music, no matter how bad it might sound to my ears.

Still, the mother voice warns that it only takes one….

Stanger Danger Curriculum Day 1:
Who is a stranger?
A stranger is someone that you and your family do not know. Most strangers will look innocent and act very friendly; they will not always look mean and scary. You can never tell how a stranger will act based on appearance.

“A stranger is someone that you and your family do not know.” I am okay with this. But then it all falls apart. Most strangers aren’t acting friendly and looking innocent; they are friendly and innocent. Is it now considered prudent – safe – to simply to fear everyone we encounter? Research tells us that fear is a bad teacher – rather than eliciting the desired behavioral outcome, fear tends to produce, well, fear. And we are too fearful already. Our cities, our parks and our playgrounds are safer today than they were when I was a child, but we fear them more. We live longer, healthier, more affluent lives and yet we are more worried and less happy.

What should you do if you meet a stranger?
If a stranger approaches you, you should always tell someone. These are good people to tell: your parents or other family members, your teachers, a policeman, a fireman, a paramedic, if you are in a store, tell a store employee.

A year ago this last September, a few weeks before her first grade school year was set to begin, Eliza and I were on campus dropping off some paperwork for the upcoming year. We were outside the school building and happened to run into her kindergarten teacher from the previous year. “Hi Eliza!” exclaimed Lindsay, “How was your summer?” Eliza looked at her, gave a cautious “Hi” and then asked “Who are you?” Because Eliza has a very difficult time recognizing people if they change clothes, hats, hairstyles or contexts, my husband and I have learned to give her quick, quiet little prompts before we go into social situations, but chance encounters are always tricky because there is often no time to prepare her.

How would my daughter differentiate between a stranger and a “policeman, a fireman, a paramedic” or a store employee? Aren’t all these people, by definition, strangers as well? Is there some trick for distinguishing between “good” and “bad” strangers? And how do we deal with the fact that statistics tell us that if we are going to fear someone, we might very well fear our own family members more than strangers.

If a stranger offers you money, candy, or a toy don’t take it. Don’t take anything from a stranger.

Two weeks ago, Eliza’s second grade teachers took my husband aside to explain that there had been some trouble that day at school. Apparently the class had walked to the neighborhood park to play after lunch. A woman in the park was sitting with a bag of candy and offered a piece to Eliza. Eliza’s teachers told her she was not allowed to take the candy. Eliza insisted, arguing that the candy was wrapped (our rule for accepting candy from strangers on Halloween) and the lady was nice (….by definition, since she was handing out candy). A battle of wills ensued. Granted, Eliza should have followed her teachers’ instructions. But the incident that set it off is so cliché -- offering little girls candy in the park — that it is almost ridiculous. And how do I answer Eliza’s obvious question: “What are you so worried about?”

Me: “Well, sometimes people aren’t so nice to kids and your teacher’s job is to keep you safe.”
Her: “But she was nice to kids.”
Me: “Right, but moms and dads get to decide what their kids eat, not strangers in parks.”
Her: “But you let me eat candy.”
Me: “That’s true, but I don’t know about that particular candy. I don’t know if it is safe.”
Her: “Why? What would be unsafe about it?”
Me: “Well, I don’t know, maybe somebody could put something bad in the candy…..”

Seriously? Do I even believe this is a possibility? Some elderly lady in the park buys a package of candies and somehow manages to inject poison into the candies, inside their wrappers, inside the bag, just so that she can go to a small neighborhood park in Portland, Oregon on the off chance that a school will visit the park that day, at that very hour, and she will be able to give a little girl tainted candy? In the history of old ladies and parks has this ever happened?

If a stranger tries to get you to go with him or her anywhere, say no!

And here, the mother voice can get the upper hand. My daughter, like many kids with ASD, will wander away. At age eight, she will walk off with anyone who is kind and invites her, just as she did as a toddler in the doctor’s office. Since I have a television, radio, internet connection and a newspaper subscription, it is difficult not to see this tendency to wander as dangerous. Even though I know it is statistically unlikely, the thought of somebody taking or molesting my daughter is so terrifying that rational thought can seem like too much of a luxury.

Riding in the car, we are talking about making a playdate with a friend. “I have hundreds of friends,” announces Eliza. When my husband and I express our surprise at this accounting, she explains: “Yeah, well, like the people who drive the ice cream trucks: they always say hi to me and they give me ice cream.” On the one hand, “Hi” has started a lot of great friendships, not to mention romances and marriages. My husband and I have spent hundreds, maybe thousands, of dollars on social skills therapists to teach Eliza to say “hi” when she meets people for the first time. On the other hand, if a person can convert from “stranger” to “friend” with a simple “hi” how do I get her to distinguish between people she should walk off with and people she should not?

Because we have been unable to overcome my stranger danger ambivalence, we have had to accept that we need to watch Eliza all the time. But the truth is that I want to be more like my daughter. She takes time to talk to anyone – everyone – she meets. She is genuinely interested in who they are and what they are doing. She accepts strangers exactly as they are.

And I am left still searching for some alternative way of teaching about strangers – a curriculum that balances a mother’s interest in safety with an acknowledgement that living requires some risk and that the next stranger we meet may be the best thing that has ever happened to us.

Gender Calculus

“I want to paint my room pink,” announces my daughter. I cringe.

My daughter’s bedroom is painted green. When she was little, we avoided Easy Bake Ovens in favor of chemistry sets and recipes for goop, glop and flubber. We dressed her in both her male and female cousins’ hand-me-downs. We encouraged her to hunt for bugs and to get muddy. We earnestly coupled every comment on her looks with praise for how smart she was. And, although she was still just a toddler, we developed damage-control strategies for the inevitable day when she would be given a Barbie Doll for her birthday or Christmas.

I was, after all, born in 1963: the year Russia put the first woman into space, Congress voted to guarantee women equal pay for equal work, Martin Luther King Jr. made his “I have a dream” speech, and Betty Friedan ushered in a new wave of feminism with the publication of The Feminine Mystique.

So I will confess to you now that I took a certain amount of smug, feminist pride in the fact that my toddler randomly assigned gender pronouns to the people we met. She would call men “she,” women “he” and there seemed to be no rule governing the application of “his” or “hers.” I felt proud that gender categories didn’t seem to matter to her, that she didn’t seem to get caught up in how boys or girls, men or women were “supposed” to behave or look. “Hah! Take that Patriarchal Hegemonic Order!” I thought to myself, “We can raise children without caving to preconceived gender constructs!”

And while I congratulated myself on my enlightened parenting, other adults would gently correct Eliza, explaining in simple toddler terms that they were either male or female, him or her. Depending on their age, children were less gentle when they corrected her, often punctuating their points by yelling, hitting, or refusing to play anymore. Usually, I just let her errors go unless I could see that the other person was upset, in which case I would gently supply the correct gender pronoun. It’s not that I wanted my child to be a social misfit; it’s just that I assumed that it was inevitable that as she got a little older she would sort it out.

But years passed and all the correcting, guiding, and prodding had no effect; Eliza did not sort it out. What I had attributed to my brilliant gender-neutral parenting, was in fact my child’s Autism Spectrum Disorder.

Autism Spectrum Disorders, including such things as Asperger Syndrome, Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), and High-Functioning Autism, currently affect 1 in 110 children in the United States, and rates are rising. In my own state of Oregon, rates have been estimated to be as high as 1 in 87 children.

And now, with an 8 year-old daughter, I find myself in the humbling position of trying to teach my child to assign genders to the people she meets based upon the very gender stereotypes I had tried so hard to avoid during her baby and toddler years.

Gender is what social scientists call a “master status trait,” meaning that gender is key to determining how we act and react to each other socially. When we meet a stranger we very quickly and unconsciously evaluate that person and assign “it” certain master status traits, including a gender. Most of the time, we are completely unaware that we are even performing this sort of social reconnaissance until we encounter a person who, for whatever reason, we cannot categorize. Remember “Pat” from Saturday Night Live or your own discomfort the last time you encountered an ambiguously gendered person?

For my daughter, and many children with Autism Spectrum Disorders, every encounter requires that she consciously and deliberately determine the gender of the person she is speaking with. And it is harder than you would think because all of our decision-making rules have exceptions, caveats and loop holes. Long hair = girl? Obviously that rule will not satisfy. Big = boy? Again, imperfect. Facial hair = boy? Equally problematic -- especially when we are talking about 8 year-olds. Make-up = girl? Her own mother doesn’t own any. It’s worse than when you had to memorize irregular verb conjugations in French class. With each new encounter, Eliza has to actively and consciously perform an elaborate calculus to determine the gender of the person she is speaking with and then she has to test her conclusion to see if she has gotten it right or wrong.


She gets it wrong a lot. And now that Eliza is older, adults are offended by her gender mis-assignments. Men do not find it cute to be called “she” by a child they believe should know better, and often respond by teasingly referring to Eliza as boy, which leaves her completely befuddled. Women tend to take her mis-labeling as commentary on their appearance – thinking that they must be looking somehow “mannish” that day. When Eliza directly asked her female, but tall, thin, and short-haired pediatrician, “Are you a man or woman?” the doctor looked at me and asked, “She’s joking, right?” She wasn’t.

And it doesn’t stop at gender assignments. All day, every day we all base our social interactions on subtle cues, gestures and innuendo that are completely lost on my daughter. The “social and communication challenges” that came with her diagnosis don’t just mean – as I had initially thought – that she is bad at small talk and a disaster at parties, though she is these things too. What it means is that she needs all the small social rules of behavior spelled out explicitly and logically.

This would be okay, except that our “rules” defy logic. Let’s take body parts for example. There is, in fact, one pretty efficient way to determine the gender of the person with whom you are speaking but, as Eliza now knows, checking for a penis will get you suspended from school. But just try to explain why that is to an 8 year-old using logic and rational thought:

Me: “We don’t look at or touch other people’s private parts.”
Her: “Why not?”
Me: “It’s just a social rule.”
Her: “We don’t ever look at other people’s private parts?”
Me: “Well, no, kids don’t. Grown-ups sometimes do, and movies do, and advertisers do, but we don’t do it at school.”
Her: “Which parts are private parts?”
Me: “Anything that your swimsuit covers.”
Her: “The part of my shoulder that is under the strap is a private part?”
Me: “No, not that part.”
Her: “Boys don’t have tops to their swimsuits.”
Me: “Right.”
Her: “What is the difference between their top and mine?”
Me. “Nothing. But someday you will have breasts and they are a private part.”
Her: “But can I take my shirt off now?”
Me: “No.”
Her: “Why not?”
Me: “I have no idea.”

Every parent of a 3 year-old is used to the “why” phase, but for most parents it passes in a few months or a year. For our family, it is a way of life. All parents have to teach their children the rules of polite, social behavior. Every time a mother exclaims “Gross – that was a stinker – get outta here,” in response to her child’s gas, she is giving a little lesson in social acceptability. But such subtle lessons are completely lost on many kids with autism spectrum disorders (ASD). So, it is the deliberateness and intentionality with which lessons are taught that sets mothering ASD kids apart.

Sometimes Eliza’s inability to pick up on social rules is funny. For example, for years my husband and I have been engaged in a full-on assault to try to get Eliza to use silverware; we scold, we correct, we cajole, we bribe. If she so much as touches her fork, even if it is an accidental grazing while her hand is on its way to her plate, we heap on the praise. And yet, it makes little sense to any of us. Sure, if you have soup, you need a spoon, but since Eliza’s New Year’s resolution to eat soup disintegrated with her first sip of chicken noodle, soup spoons rarely grace the table in our house. For solid food, fingers really do a pretty good job. What’s more, if you use your fingers, you don’t have to wash the silverware afterwards, making eating with your hands the green and sustainable choice. Most of us already eat some things with our hands – sandwiches, chips, hotdogs -- what rule governs whether something is to be eaten with hands or with silverware?

We sit in a restaurant and Eliza is delivered a plate containing scrambled eggs and toast. She stares at the plate, and then reaches for the toast with her hand. Everything seems to be going well until she uses that same hand to reach for the eggs and I stop her. How do I know that it is okay to use hands for the toast but not for the egg? And would I have let her eat the toast with her hands if the egg was on top of the toast instead of next to it? “If the toast is cut in triangles and is balanced on the side of the plate, you can eat it with your hands; everything else gets a fork,” I offer as a guiding principle. We are feeling good about this new rule and going back to eating just as the waitress drops of a small plate with our side dish: two pieces of bacon.

Sometimes Eliza’s inability to distinguish social cues is heart breaking, like the time she introduced me to her “friends” on the playground, the trio of 8th grade girls who a few weeks ago told her to say “fuck” in class because it would make the other kids laugh. These same “friends” had gotten Eliza suspended just the week before by suggesting that she pull her pants down in front of her teachers. Because they talk with her, Eliza thinks they are her friends. Because they are bigger, older, she assumes that they are taking care of her. When kids in class laugh at her, she thinks they are all having fun together and are friends. “It’s good to make kids laugh, Mama,” she tells me when I ask her why she pulled her pants down in class. “When they laugh they are happy and I like to make them happy,” she explains simply. And, of course, she is right: they were happy, and potty talk and naked butts can be funny – just ask Howard Stern.

When I try to explain that the older girls are being mean to her, she assures me that they are her friends because they talk with her on recess. True enough -- friends are people who talk with you and if a person will not talk with you, it’s a good bet that person is not your friend. But these, albeit talkative, girls are not her friends. So what rule can I give to a little girl unable to understand complexities like jealousy, arrogance, insecurity, or cruelty?

The school of course has a very clear rule: pull your pants down in class and you get suspended. But even the school acknowledges that preventing an autistic child from going to math class does nothing to teach her to avoid being manipulated by others, or even to keep her pants up.

Sometimes Eliza’s social disability is extraordinarily frustrating. As a 46 year-old adult woman, I spend a good portion of my mental energy trying to get over my self-consciousness, embarrassment, and need to be accepted and liked. Yet, now I must try to instill this very same sense of self-consciousness, embarrassment and shame into my daughter. Because when our mothers told us to “just be ourselves,” they only sort of meant it. Every time Eliza farts in public or at the dinner table, I tell her that she needs to say “excuse me” and that people find farting embarrassing. She asks me why it is embarrassing, since she knows from her science encyclopedia that she will, in fact, die if she doesn’t pass gas, and everyone does it:

Me: “Right. We just pretend that we don’t fart and we try to only fart in private.”
Her: “Why?”
Me: “So we don’t make people feel uncomfortable or embarrassed.”
Her: “But they do it too, right?”
Me: “Right.”
Her: “But I don’t feel embarrassed”.
Me: “I know, but people expect you to pretend that you feel embarrassed.”
Her: “Okay, Mama. Am I blushing?”

To be fair, there is a certain liberty in living without embarrassment. Imagine how different your life might be if you didn’t worry about what other people thought of you. Eliza will never feel the same pressure to conform that her neuro-typical peers feel. But she will also never understand why she is consequently treated with such scorn, hostility and cruelty. She is hurt by unkindness, but at a loss as to how to prevent it.

I am a college professor and a typically decisive and directed person. But when it comes to my daughter’s inability to read gender cues, I find myself ambivalent and lost. At what point is freedom from embarrassment the same thing as complete social isolation? As mothers, what is the social contract we make with regard to socializing our children? Should I tell my daughter to “just be herself” when I know full well that this will lead to pain and suffering? Emotionally, I am not prepared to do this to her. But is it my responsibility as a parent to try to make her into someone she is not so that she will better fit into society, even if I object to the limitations, inequities and stereotypes that social system embodies?

So when Eliza tells me that she wants to paint her room pink, it is because she has read that girls like the color pink, and she is making an unaccustomed effort to follow what she understands to be the social rule. Up until now, she has always said that her favorite color is blue. And while I agree to paint her room, I honestly don’t know if I should be happy or sad.