My son wanted to go to bed early the other night. Now you wouldn't think that this would be cause for alarm. There are lots of good reasons for him to be tired. Summer break is over. Fourth grade has started. The kids are no longer on a lazy summer schedule. Add the fact that cold germs are flying around, and maybe you have a kid whose immune system is fighting off some annoying but relatively harmless virus. So he's tired. And he asks to go to bed early. Think nothing of it.

Unless you're me, that is. This is An Event Out Of The Ordinary! And whether the Event Out Of The Ordinary is Mark coming home late or Austen going to bed early, these things are Bad (yes, with a capital B). In this case, my money was on leukemia. Either that or some horrible irreversible disease caused by the fact that Austen's diet is so limited.

Ordinarily, I don't share these things with anyone outside of my husband, because the inevitable response (even, to a more limited extent, from Mark, who at least keeps loving me anyway) is: you're crazy, you're so overreacting, he's just tired, and I'm somewhat disturbed by your craziness, so I'll just go stand over here now. Or... If you're so worried about it, you should work harder and do better. Clearly his diet is limited because of your awful laziness and lack of discipline and willpower. People like you are ruining America and are personally responsible for my unhappiness. I demand that you fix this, and if you just [insert long list of advice that hasn't worked yet and/or recommendation to focus solely on this goal to the exclusion of the needs of all other family members], all the world's problems would be solved.

So, it's tiresome, this admitting of strange, secret, niggling fears. It feels like walking a mile carrying a hundred pound weight (which, by the way, wouldn't be so hard if you stayed in better shape, MPJ, so stop complaining). In fact, it's so very tiresome, that I've spent my entire life not telling people (aside from a trusted few) that if my son asks to go to bed early, I secretly think he might have leukemia. And that I might even go so far as to stand next to his bed, biting my bottom lip, my hand hovering over his sleeping head to see if I feel a fever.

Austen is fine, of course. After a few nights of early bedtime, he has been his usual cheerful, energetic self. And I'm fairly certain (well, ok, maybe I will be in a few days) that he doesn't have any life threatening disease at the moment. But I'm also fairly certain that the next time he says his stomach is upset, I'll be biting my lip and furrowing my brows, thinking I may have been wrong last time, but this time...

The one thing I feel I can never be certain of, until the very moment I hit publish, is whether or not sending my whispers of imperfection out along distant electronic tendrils of this universe -- and the relief and recognition and connection and not-aloneness it might bring somewhere -- is worth walking a mile with that damn weight. This summer, it wasn't. But, today, it's back to school time, and unlike my kids, I feel like I have all the energy in the world.

If you had asked me, before Austen was born, if nearly every detail of my life was fixed in routine, I would have said no, and I would have thought that was quite true. After all, I had free will and all that. If I felt like picking up a doughnut on the way to work today, then, damn it, I could do that. I could drive all kinds of alternate routes to the grocery store. I could drink from the pink glass and not the blue one. I could get away for the weekend or even pick up and fly to another country.

But the fact is, most days I didn't do that. And I never noticed it until Austen pointed it out. I wouldn't notice I'd always served Austen his baby oatmeal in the orange bowl until I put it in the blue bowl and he refused to eat it. I wouldn't notice I'd always driven the same road to the grocery store until I had to stop along the way at the post office or the gas station and Austen would howl with confusion and outrage. I wouldn't notice that always sorted the mail by the mailbox and muttered "junk, junk, junk..." under my breath until Austen started saying "junk" whenever we went to get the mail. There were a thousand habits I didn't notice until I broke course and found that, for Austen, my habits had become compulsions. They were part of The Way Things Must Be.

A few days ago, Austen was playing with Mark while I arranged a playdate for Janie. "Ok, bye. Great, thank you. See you then," I said as I hung up. "No!" Austen shouted, "You said it wrong!"

"What?"

"You said the wrong thing on the phone!"

I struggled to remember what it was I said and realized I'd said something after "bye."

"Oh, did I say something after I said bye?" I asked.

"Yes!" said Austen, "What's wrong with you?!"

"I just don't always think about the rules when I'm talking, buddy. That's the way my mind works. And that's ok. I like being a little flexible, and the other person knew what I meant."

"No, it's not ok. What's wrong with you?!"

"I'm different?"

"No," Austen was getting increasingly upset, and I could tell he didn't want to let go of this question, "What's wrong with you?!"

"I'm crazy!" I said with a smile.

"No, you're not! What's wrong with you?!"

And suddenly, something clicked. I broke a routine, but this question was part of a routine too. It wasn't the exact same question -- it certainly wasn't the same tone of voice -- but I could hear myself asking Austen, "Hey, what's wrong, buddy?" And I knew the answer. Because Austen has an extremely limited diet and is extremely particular about how his food is served, it can be a struggle to get him to eat enough.  He also has difficulty recognizing his hunger (although we can always recognize it based on his behavior), and he can go long periods of time without realizing he needs to eat.  So, when he's at his most anxious and upset, as he was now, the solution has nearly always to ignore whatever he was upset about and feed him.  We also diligently point out to him that his anxiety and frustration are hunger signals, hoping that this will help him recognize his body's cues.

"I guess I must be hungry, buddy," I ventured.

"Ok," he said, "I guess so."  And returned, immediately and peacefully, to his game.

My husband and I looked at each other, eyebrows raised.  Interesting.  In Austen's view, I had done something wrong, so there must be something wrong with me that caused me to misbehave that way, and what he (and we) had linked to misbehavior in his mind was hunger.  I know of other kids who have threatened to put their (seemingly) misbehaving parents into time-out, but only Austen would think to feed us.  I was thankful that he didn't follow me into the kitchen to make sure I got a snack, because I'd just eaten lunch, and frankly, I was stuffed, both with food and food for thought.

As I write this, I have a cup of tea beside me, and I am trying to get myself to drink it.  I'm not hesitating because I don't like tea or because I think it will be unpleasant.  I'm hesitating because I'm trying to drink it out of a Pyrex measuring cup, which feels... Uncomfortable.  Weird.  Challenging.

You see, my mugs were all dirty and I had forgotten to start the dishwasher.  Now sure, I could have hand washed a mug, but why not use the more readily available measuring cup?  It has a handle.  It can hold hot liquids.  It's no heavier or more unwieldy than some of my beloved oversized mugs.  But I recoiled a bit at the thought.  Was it sanitary? I wondered.  Um, yes.  It's been through the same dishwasher as the mugs I usually drink tea from, and I use it to make lots of food that I safely and happily eat.  Would the tea taste ok?  Why wouldn't it; the measuring cup is just glass, and I drink out of glasses all the time.  But still, it just seemed... Wrong.

Of course, my son Austen is very familiar with this sensation.  Austen (as those of you who visit regularly may know) is autistic and has to eat his yogurt with a plastic spoon.  It can't be silverware, because those spoons are heavier and will (if left in the yogurt container) sometimes tip the carton.  Disaster!  But even among plastic spoons, not all spoons are created equal.  Austen's plastic spoons must be clear plastic, and not just any clear plastic; they must be the kind I buy (in bulk) from our local grocery.

This has been frustrating.  I've carried a lingering resentment over it.  After all, I once forgot to pack a spoon in his lunch, and the school called.  Austen completely refused to eat lunch without that damn spoon.  The school has plastic spoons of course, but they are white, not clear.  He insisted on a clear spoon.  So, the teachers looked through their own lunches and his classmates lunches for one to trade, but their clear spoons weren't the same brand as our clear spoons.  Their clear spoons had little swirls on the handles, making them totally different.  And because he couldn't eat his yogurt, he couldn't eat anything.  He was stuck on yogurt and couldn't get past that to the rest of lunch.

So, I ended up driving a package of spoons over to school, muttering to myself the whole time, "A spoon's a spoon, damn it!  Why does it have to be this spoon?  There are a hundred spoons at school.  There are even clear plastic spoons at school.  For crying out loud you don't even need a spoon.  You could drink it.  Or lick it off your fingers!  Why do you have to eat the yogurt with this particular type of spoon?!"

But I know why.  Autistic engineer and author Temple Grandin explained it in her recent interview on NPR when she said, "If I say to you, 'Think about a church steeple,' I only see specific ones and I can tell you exactly where they're at. And I was shocked to find out that most of the people see a generalized sort of vague, generalized, generic steeple. For me there's no generalized one. There's only lots of different specific ones."  There is no Platonic ideal of a spoon in Austen's mind, there are only specific spoons.

And I can say that's crazy and troublesome and that I just don't get why it makes eating yogurt at school impossible some days.  I can say that, that is, until I sit here unable to drink out of a clearly very mug-like object, complete with a handle and an ability to hold hot liquids simply because it doesn't fit my idea of what one ought to drink tea from.

I was looking through Austen's school papers this week and found an exercise he had done describing what things would be like if he ruled the world. He had filled in blanks to complete several sentences, one of which read: "If I ruled the world, there would be no..." And before I read his answer, I thought about the kinds of things I'd want to do away with if I ruled the world: war, disease, abuse, famine... All the things a nice, neurotypical adult abhors.

Then I read Austen's answer: the answer of an autistic eight-year-old boy who hates to eat, who hates new tastes and textures in his mouth, who is a confirmed neophobe and resistant eater. Yes, next to "If I ruled the world, there would be no..." Austen had neatly printed the word "food."

I love him very much, but given my own strong anti-famine stance, I don't think I'll be voting for him for world ruler anytime soon.

I started my day off on Tuesday by reading Lisa Belkin's reflections on what she's learned in the eighteen years of parenting since her son's birth. I thought, "Wow, that was lovely and touching and resonated with me in so many ways, I can't wait to share it. But... There's this one thing she just got so wrong."

A few weeks ago, I read Karen Maezen Miller's Momma Zen and I thought, "Wow, that was lovely and touching and resonated with me in so many ways, I can't wait to share it. But... There's this one thing she just got so wrong."

That wrong I was thinking about were their comments on feeding their children. Karen writes, "Left to their own impulses, children will certainly put food in its proper place." And Lisa echoes, in her own way, "An otherwise healthy child, if food is made available, will not starve to death — so chill."  Of course, what they got "wrong" wasn't really about food.  It was the same thing that all parents get wrong in my book: having a different experience with their kids than I had with mine.  (How dare they!)

Like so many other parents, they have expended their share of parenting energy and stress upon feeding, only to find it was natural for their children to eat when hungry, something that can seem like a remarkable surprise when one is caught up in the heat of battles over food. So, they share their experiences, and offer comfort to the new parent still struggling, and in the process, thousands of parents of typically developing children breathe a sigh of relief and let their shoulders drop away from their ears. It's easy! There are things that children learn naturally. We don't have to teach children to eat or walk or talk. They can figure it out if we just relax and let them.

And in a way this isn't wrong at all.  I witness this miracle every day in my daughter: the naturalness of eating, the naturalness of hunger and an urge for survival that overrides the most stubborn urge for Cheetos or ice cream. When faced with an empty stomach, she eats. She eats what she's comfortable with, and what she's comfortable with is most things. She trusts food. She trusts her body. I didn't have to teach her that. (Which is good, because I'm the one teaching by example about gluttonous consumption of sweets.) But it does seem to be a miracle, just like the fact that she was born with all her limbs and all her organs, with everything in place and working at a balanced norm. It's the kind miracle I've taken for granted at times, but still a miracle.

But I also witness -- daily -- a different kind of child entirely: one for whom those same natural things, like eating and talking, didn't come so easily.  As an infant, and even now, Austen was, by most measures, in excellent physical health.  He has all his limbs and organs, and they're all in perfect working order.  He's always been tall for his age, and an ideal weight for his height.  He sat up and rolled over and walked in perfect sync with his typically developing peers.

Eventually a speech delay that would signal to our pediatrician that all was not typical in the workings of one organ -- his brain -- but even before children are supposed to be able to speak, they are supposed to be able to eat.  Pictures abound of delighted babies digging into their first birthday cakes.  But we don't have one of Austen, who by age one was already refusing new foods.  His relationship with food, his willingness to literally starve himself rather than eat or drink a food that was new or was presented in an unexpected manner, was the first clue we had that his brain worked differently.  And in the end, it was the fact that he was his limited diet and obsessive rigidity around food -- not his delays in speaking or interacting with his peers -- that snapped me out of my denial and convinced me that Austen was autistic.

When Lisa and Karen share their experiences, their words are a relief to thousands of parents.  But to thousands like me, they can feel like an indictment when the words are turned on their head by a pediatrician or a school psychologist or another well meaning mom who clings to the belief that it's so natural for all children to eat that symptoms of eating disorders are seen not as a sign that eating does not come naturally to this particular child, but as a sign that you as a parent are overreacting or doing something wrong to interfere with the child's eating.  So, I share my story (over and over again) to bring relief to a whole different set of parents, the ones who know that eating and walking and talking don't come quite so effortlessly to all children, the ones who know that sometimes they don't come at all.

To those parents still struggling with mealtime, I leave you with something else from Lisa's article: "When your gut tells you they are sick, or something’s wrong, they are and it is."  We may not have had the same experiences feeding our children, but on trusting our own knowledge of our kids, I'm with both Lisa and Karen, start to finish.

As featured in the New York Times blog Motherlode

I

A mother and her son are in line at a grocery store. They boy looks like he’s about nine or ten. The mother looks a little tense as the boy starts to fidget in line. At this age he really should be able to stand still. And watch where he’s going. He almost bumped the person behind him. His mother does nothing.

“When are we going?” he asks.

“In about two minutes. We’re almost done, buddy,” she says.

“No, not about. Zero minutes! I want to go now. Right now! Right! Now!” he says and stomps his foot.

Again, his mother does nothing to make him stop his rude behavior.

Fortunately, the cashier has finished ringing up the groceries and now the boy starts hopping up and down in place as the mother reaches into her purse for her credit card. He practically snatches the card from her and then after he swipes it, he starts shouting at her, “No! No! You do it my way!” She leans down and whispers something to him and he stops yelling, but he still hops up and down again, glaring at her and pulling on her and making those grunting noises rude teenagers do when they’re disgusted with you. No doubt she’s told him she’ll give him the candy she bought if he keeps quiet: rewarding and reinforcing his unacceptable behavior as bad parents do.

The cashier hands her the receipt and says, “Thank you, Mrs. Jones,” and the boy screams at the cashier as they leave, “No! You’re terrible!” The mother leaves without a word as the next customer in line rolls her eyes sympathetically at the cashier.

II

Today, I’m going to take my son Austen to the grocery store with me. It’s school break, and we need milk, the only thing Austen drinks.

Austen is autistic, which can make these trips hard for him. As a result, I schedule the bulk of my grocery shopping for times when he is in school or being cared for by someone else. However, sometimes I plan short trips like this one to help him get used to grocery stores (a skill he’ll need if he is going to live independently) or, like today, because we need some essential item at a time when I have no childcare options for him. When he does come along I make every effort to keep the visits to what we can both handle, so that they remain a positive experience for him.

To prepare for the trip, I’ve made sure that he is well fed, and I’ve arranged for his sister to play at her friend’s house so that I can focus on him. Since he thrives on routine and predictability, on sameness and scripts, I’ve reviewed what is going to happen when we’re in the store, so he knows what to expect. I’m also keeping the visit short; we’re going to get only what we need and then leave.

As part of his autism, Austen has sensory integration issues, which means that the way that his brain processes the information from his senses can turn a whisper into a scream or a tickle into a burn. Because of this, so much that goes unnoticed by others on these outings is painful to him: the store’s softly flickering fluorescent lights can look like a strobe and the incessant piped in music can sound like a rock concert, the aisles can seem breathlessly crowded with people, and the sight and smell of all these different foods can be nauseating; his own diet is self-limited to just a handful of items.

In spite of this, he does really well as we walk through the store. He stays close to me and doesn’t run off. He even talks about some of the items he sees on the shelves and points out some candy that he knows his sister likes, so we add it to the cart to bring home to her as a treat. He wouldn’t eat the candy himself even you bribed him with an XBox, so it’s wonderful that he thought of her. In fact, there are some who posit that autistics have no “theory of mind” at all — that they are incapable of realizing that others think differently. For Austen, it seems to be difficult, but not impossible, to see things from someone else’s point of view, and I celebrate it when he does.

As we pass through the produce section on our way out, a clerk says ‘hi’ and asks a question about the cartoon character on Austen’s t-shirt; they have a brief, polite conversation, although Austen has to pause a bit to gather his thoughts between sentences. At age two, Austen was not speaking at all and doctors first began to tell us that it was possible he was autistic. It took intensive speech therapy in his preschool years and the work of several loving and dedicated special education teachers to get him to the point where he can have this conversation today. Austen is tall for his age and the clerk is surprised to learn he’s only seven.

He’s handling this whole trip really well. All the work we’ve been doing to help him get comfortable is paying off. “You’re doing such an awesome job of helping me today, buddy,” I say.

All we have left to do is pay, but I get tense when I see there’s just one register open and the cashier is engaged in a complicated transaction ahead of us. We do the best we can, but even after a short, positive visit, waiting in line is hard. I think (hope) we can make it through the line without a meltdown. If we leave now, we’ll have to come back again later to get what we came for and the second trip is unlikely to go this well. After a little while, Austen starts circling me, which is what he does when he’s tired and anxious. He’s not hurting anyone by doing it, and he’s keeping himself calm. So, I breathe and hope the line moves quickly, since I can tell he’s used up almost all of his resources to make it this far. If we were finishing up and walking to the car now, as I had expected, the trip would have been perfect for everyone. I try to remind myself that sometimes, in spite of all my best planning, life happens.

At last he rolls his head back and sighs, “When are we going?”

“In about two minutes. We’re almost done, buddy,” I say. Oops, I’m tired and anxious too now, and I slip. This is the wrong time to say “about.” That’s a trigger word. Austen craves precision. We can work on estimates and inexactness like this at home, but the grocery store is the wrong place for it: just as running across a busy freeway would be the wrong time to stop and work on tying your shoe.

He also — as is the case in so much of the obsessive compulsive behavior that is common with autism — reacts to anxiety by becoming even more rigid and insistent on rules and routine in order to quell his rising panic. The more chaotic and unstable he feels his world becoming, the more he clings to the solidity and familiarity of the rules he’s created to soothe himself. That means the very public situations in which he’s expected to be most flexible are the very situations in which he most desperately wants the world to conform to his rules. Predictably, he protests my vagueness.

“No, not ‘about.’ Zero minutes! I want to go now. Right now! Right! Now!” he says and stomps his foot. Damn, he’s really had more than he can handle already. I didn’t think we’d have to wait so long in line. He’s been working so hard to make it this far, and I know he’ll feel better once he’s back in the quiet, familiar car away from the people and the lights and a whole store full of nauseating, offensive foods.

Fortunately, we’re at the front of the line by now and the cashier rings up our groceries quickly. Obsessive interests are another hallmark of autism, and a longstanding passion for numbers is one of Austen’s. He loves to work the ATM/credit machine, so his participation in this process is a way to end trips on a positive note. After some practice, we’ve gotten pretty smooth with it. He likes to push in the PIN numbers, and has finally reached a point where he no longer feels compelled to say my PIN out loud as he types it. We only run into problems when we have to use the card as credit, because he doesn’t like to see my signature. It’s incomprehensible and extremely upsetting to him that the bank wants me to scribble instead of printing my name in block letters like at school. Everything goes well at first, he takes the card eagerly, swipes it just right and gets ready to enter the PIN, but the cashier makes an error and we have to reprocess the transaction as credit.

Austen, overwhelmed by the wait, anxious that things aren’t going as planned and distraught at the thought that I’m going to have to sign rather than punch in a PIN, starts shouting, “No! No! You do it my way!” I lean down and remind him that when he gets upset in these situations, he’s supposed to signal me and let out his anxiety by squeezing my hand really hard instead of yelling. So, he hops up and down again, frowning and grunting slightly with the effort of squeezing my hand tightly.

At last, we’re almost finished. The cashier hands me the receipt and says, “Thank you, Mrs. Jones,” and I do my best to rush us out. Austen, exhausted and triggered by the formal use of my last name (“only teachers are called Mrs. and you’re not a teacher”) is practically in tears as we move toward the door. Unable to soothe himself with the hand squeezing any longer, he screams at the cashier as we walk away, “No! You’re terrible!” I smile weakly and shrug an apology from near the door.

All in all, it was a very successful trip, and once we’re clear of the store, I say, “I know that was really hard, but we’re all done now. You did great this time, buddy, even better than last time. High five!”

I fell into a light sleep, listening to the kids alternately giggling and bickering as they got ready to leave, then slipped into a deep sleep and into a dream. In the dream, I had just received a letter from a music teacher at my son's school (which proves it's a dream. Music teachers? No Child Left Behind didn't mandate those. Next I'll dream about Siberian Tigers.)

The dream letter described my son's imaginary (but realistic) behavior in the dream music class: he had started screaming at the sound of recorders being played by elementary students during rehearsal, then he yelled at the teacher and tried to push past other kids to get out of the room when the teacher tried to hand him a chocolate chip cookie for a snack. The letter went on, in an arrogant tone (you'll just have to believe me), as the teacher ranted, indignant at my son's disruptive and rude behavior. He signed the letter, "Sincerely, Allan Holle, Music Teacher."

I read the letter and thought, "Of course my son would react that way! He's extremely sensitive to sounds. Screechy elementary recorder playing gives me a headache, for goodness sake. And he's scared to death of non-preferred foods!" I ranted to my husband about how this was going to come up in the IEP meeting, and instead of working with us to help my son and the music teacher understand each other, they were going to blame my bad parenting and punish my son.

Then I woke up, and thought, "Wow, I sure am stressed about that upcoming IEP!" Then I thought, "Why Allan Holle? Where did that name come from and why do I remember that detail now that I'm awake?"

Allan Holle. Allan Holle. A. Holle. a-hole.

Ha! My subconscious is the best! It was calling the folks at my son's school a-holes in a joke designed by me, for me. Thanks for the laugh, Subconscious!

Now, I may not be one for much crying, but I did cry (I'll admit it, I did) the first time (ok, ok! few times) I watched Finding Nemo. Even before I lost track of my son a few times, I related so much to the anxiety, the overwhelming desire to keep one's child safe from harm, that Marlin (a.k.a. Nemo's dad -- see, I've watched the movie enough that Marlin and I are on a first name basis) felt.

In one of the DVD features about the making of the film (oh, yeah -- I read instruction manuals too), one of the writers said he is often asked why Nemo has one gimpy fin. He said that they were going to make Nemo learning to swim with this disability a bigger part of the plot line, but even though they didn't, they left the gimpy fin in. Why? Because it symbolized that weakness or that difference in your child that every parent worries about. It's different for every parent and every child, but there's always a worry there.

Jay's great fear centers on adoption; she worries that her daughter feels the pain of that first loss in each subsequent loss and fears being abandoned. And Jay was right when she said that my fear centers on autism, although it's been there for far longer than I have been able to apply the word autism to my son's differences.

When my son was an infant, he would scream these painful, horrific screams. In those screams, from the very day he was born, I always heard him saying, "Mama, please, please help me. I'm scared and I'm hurting and I need you." They were screams like he was being tortured, but when I held him and nursed him, he'd calm down. He seemed so much more vulnerable, so much more helpless and so much more susceptible to fear and pain than other children.

In my postpartum state (in what I now recognize as the extreme anxiety of postpartum depression), I used to have daily panic attacks, daily waking nightmares. I would think about taking him out for a car ride, and I would slip into a vivid picture of us crashing. And the very worst thing that would happen would not be that he would die, but that I would be killed or pinned somewhere unable to reach him. I knew he'd be screaming those screams of pain and terror that I heard every day. And my absolute worst, gut wrenching fear was that there would be no one there to soothe him or help him, because he couldn't help himself and I was the only one who knew how to help. I worried that without my breast, he'd stop eating. I worried that he would live the rest of his life in pain and terror.

I understand those cries better now. I know that his senses don't take the world in the way other people's do, and that everyday events can overwhelm him to the point of pain. I know that he needs everything in his life to fit within the rigid pattern he's defined, not just in order to feel comfortable, but in order to survive.

After Hurricane Katrina, I had some of the same panic attacks. We don't live in the path of that storm, but I saw what it did and wondered what happened to children like my son. I pictured what would happen if some disaster struck us. My son only eats three things, each of which have to be prepared and served in extremely specific ways. If I can't get his special foods, an emergency ration bar isn't going to cut it. He's going to starve. And I would picture him starving, screaming, writhing, with food available, food he was unable to eat. And I pictured myself stuck and helpless to get him what he needed.

Or much, much worse, I pictured him without us, unable to help himself. Or even in the care of strangers. After all, he can't communicate with them. Yes, my son can talk -- technically, his verbal abilities are within a normal range for his age, which is just fabulous -- but that doesn't mean he can communicate.

For example, he likes spaghetti, but he doesn't call it spaghetti. He calls it spinach. Why? Because Popeye likes spinach and he went through a phase of being obsessed with Popeye. Imagine he's suddenly in your care now, with no instructions on how to help him and no idea how to speak his language. He grunts. He cries. He hasn't eaten anything all day. He pushes away everything you offer and screams at you. If you're lucky, he'll get desperate and tells you he wants spinach. You bring him spinach and he looks at it in horror and screams, "No! That's not spinach!" Now, if he's lucky, you're a nice, caring person with transportation to a working hospital, where he'll have to be sedated or strapped down due to his fear of needles and then force fed through a tube. If you're someone with bad intentions or without access to medical care, there continues my nightmare...

In the days since losing him, I've found that I've had a few flashes of these vivid paralyzing fears again. The fear that he will be alone, scared, unable to care for himself and unable to communicate who he is or what he needs to anyone else. The fear that without me or his father or the rest of his close family, he won't survive, or he'll live in pain and terror. I know that I'm taking all the practical steps that I can to protect and prepare him (from ID bracelets and a stock of almond butter to working with him on what to do and say in emergencies), but practical measures take time and aren't foolproof, and fears aren't always rational. That same vulnerability, helplessness and extreme susceptibility to fear and pain that I saw in him as an infant, I still see in him as a first grader. And that's the gimpy fin that spins this particular mama into worry over this particular child.

Photo credit: Image adapted from a photo by KRISnFRED on Flickr

In the mothering world, compliments are hard to come by. Oh, sure. You'll hear, "Your kids are so cute!" But that's not really about you, or even (usually) your kids. It's one of those generic statements, like "have a nice day" or "how are you." You much more often hear from others when they disapprove of your parenting or your child's behavior (which usually means, by extension, your parenting). This seems to be doubly the case when you have a child with autism.

For example, I have yet to hear from my son's school when he's doing a good job. They wouldn't call me up on the phone and say, "Hey, your son ran in to save a puppy from a burning building! What a hero!" That wouldn't even warrant a note or an e-mail (unless they wanted to complain that he ran back in after being told not to). I'd find out about it from some other parent, or child, or the evening news, or maybe even my son. But let's say he, oh, I don't know, calls the teacher a boogerhead? We get instant calls from the principal on my husband and my cell and home and work phones. It's an emergency! Drop everything! Your son called the teacher a boogerhead! (Oh, man. I'm sorry, but I think that's kind of funny.) At this point we are expected to DO SOMETHING. Do something! Right now! Give him a lecture! Make him change! (If he ever breaks his leg at school, I'm in trouble, because when my caller ID lights up with the school number now, I just roll my eyes and think, "Good lord, what's the crisis now? Did he giggle in class again?")

Recently, we stopped by the home of a neighbor to drop off a gift for her new baby. When we were invited in, I knew we were in trouble. The polite thing to do (I think. I'm not great with etiquette, but that's another post) would be to go in when invited and see the baby, and my daughter was dying to go in. My son, however, had no interest. So, I did what I usually do in such situations: ignore social norms and do what works for us. I left my son outside and went in with my daughter to see the baby. He ran around in circles and hopped up and down outside while we ooed and ahed.

Our neighbor offered us snacks, which my daughter, never one to turn down tasty looking treats, happily accepted. I went to the door to see if my son was comfortable enough to come in now. He was. And we confronted what is always our thorniest social situation: food. It's amazing how easy it is to overlook how integral food is to social situations unless you are someone or know someone who has difficulty eating. Food as a universal good is so ingrained in society that it positively shocks people to see it vehemently refused. They simply don't expect it. So, he refused, and I tried (as usual, unsuccessfully) to intervene, "No, thank you very much. He won't eat it. It's all right. He really doesn't want it. It's very kind of you, but please, please, don't even offer it." This is a scene that's been repeated many times over the years. I babble ineffectually over his screams of terror as the host or hostess pleasantly presses on, "Don't you want some? Look, cookies! Everyone likes cookies! Here, just try a little bit."

Having turned down the food, my son took to jumping off the furniture and then lying on the floor, refusing all polite offers of a chair by the baby's grandparents. Throughout, I tried to be patient and soothing to my son, who was clearly (to me) scared and uncomfortable. I asked him if he wanted to wait outside again, but he didn't. I told him he didn't have to sit on a chair, but that other people really don't appreciate having their furniture jumped off. I told him I knew he was nervous and anxious about being someplace new (we'd never been in the neighbors' house before), around new people (he'd never met the grandparents before and rarely saw the new mom). I told the grandparents and the new mom that my son got very nervous around new people and in new situations, and that this was the way he acted when he was scared and nervous. And then, as he was rolling peacefully on the floor and I was chatting while waiting for my daughter to finish her snack, the most extraordinary thing happened. The mom turned to me and said, "I really liked the way you handled that situation."

I wanted to kiss her. Really? My son wouldn't come in to your house and then came in stood on your couch and jumped off your furniture and rolled on your floor and frowned and grunted at you when you offered him food. And I didn't DO SOMETHING. I just told him that I understood, and told you that he was nervous, and that was admirable? In seven years, with two kids, no relative stranger has ever told me I'm doing a good job with my kids. They've stared and frowned, and told me a lot about how I'm doing it wrong. But no one has ever seen a little snapshot like that and told me I'm doing it right.

I felt so relieved, like the weight of the world's expectations and judgments had been lifted from me. Those things don't always bother me, but I'm always conscious of them; I still carry them and feel their weight. How nice to have that weight lifted for the space of a snack and a visit with neighbors.

Photo credit: Photo by Nick Atkins Photography on Flick

A few weeks ago, my son had his annual checkup. Because I am perpetually disorganized, and because insurance only pays for one checkup a year (meaning each must be scheduled at least one year and one day apart), my children's checkups keep moving further and further from their actual birthdays. Eventually, they will move all the way around the calendar and be examined in their birth months again. My daughter is actually so far off at this point that when I took her in, the doctor wasn't sure whether to consider it a four or a five year old appointment; she was equal times from both.

Aside from the thrill of never knowing exactly when they will occur, doctor's appointments with my son take on the extra aura of excitement that comes from being tinged with terror. There are few things in life my son fears more than seeing the doctor; as far as my son is concerned, the doctor is right up there with food as one of the great evils in life.

I learned some time ago that the easiest way to handle doctor's visits was to spring them on my son unexpectedly. I'd tell my son we were going to the toy store, and out we'd go out with me whistling innocently. Fifty feet down the road from the doctor's office I'd tell my son we had to make a stop on the way to the toy store, and then -- surprise! -- there we'd be. I'd hold out the toy store throughout the visit as the end goal, and true to my word, would reward him at the end with a trip to pick out a treat to make up for the trauma.

On this last visit, I made the mistake of musing out loud the night before to my husband, "I have to check our messages. I think I might have to take Son to the..." Shit! Of course, he was listening. And he stood in front of me, hopping up and down anxiously, "To the what? To the what? Take me to the what, Mama?" Never one to think well on my feet, I said, "You might, maybe, I'm not sure, but you might have to go to the doctor."

"NOOooooo! Are there going to be any needle bites? Are there? Are there? I don't want any needle bites!" He's descended into a flurry of panic in his great fear of shots.

"I don't know if you have to go and if you do I don't know if there are any shots." I hate lying.

"Are there any needle bites? ARE THERE? I don't want any needle bites."

"I'll have to ask the doctor."

"Ask now! Call now! NOW! NOW!"

I decide a little deception is ok, since uncertainty means anxiety and shots also mean anxiety. Telling him definitively that there are no shots will buy him 12 hours relatively free of panic until we arrive at the doctor's office and he starts repeating this question (regardless of any previous assurances) 5000 times between then and our departure. I pretend to check the computer and reassure him that there will be no "needle bites" the next day.

The day of the appointment dawns and I get both kids up and dressed. When my son realizes his bus has not arrived and it's time for his sister to go to school, he asks, "No school for me this morning?" "Nope," I answer, "It's a short day for you." No mention of the doctor. Whew! We drop my daughter off at school and he stares happily at trees and buildings and cars whizzing by without noticing or asking where we're going. Whew!

We arrive in the parking lot of the doctor's office. It represents years of progress that he does not break down in tears at the sight of the building, but he clutches my sleeve and buries his head in my arm as he walks sideways, like a crab, toward the office. Along the way the question that torments him is repeated again and again, "Will there be any needle bites? Will there be any needle bites? Will there be any needle bites?" My vague answers are distinctly unsatisfactory, but a straight up "yes" will send him into a panicky tantrum, so I continue to hedge.

I give his name to the receptionist. He screams at her for using his real name and not his nickname. He is terrified, but his ferocity terrifies her too. He's too terrified to check and make sure that I paid the copay with the credit card that has his favorite number and signed my name the way he likes, which is good, because I didn't. The nurse calls us back, and he screams at her too for using the "wrong" name. She tries to get his weight, but he clutches the pole and rocks on the scale as he continues to ask if there will be any needle bites. I tell the nurse to forget about the weight, but she continues to try and gets frustrated as he rocks. I tell her again to stop trying, and we go to the exam room, weight unknown.

He asks again and again about needle bites. I try to keep him in the present, reassuring him that there are no needles in the room right now. The doctor comes in and checks my son's records: he's not due for any immunizations (No shots! Good!), but due to his limited diet, he needs to be checked to make sure he doesn't have any vitamin deficiencies (Blood draw! Worse than shots!) My son sits on my lap and stiffens with panic during each part of the exam, but makes it through: normal blood pressure (surprisingly), normal temperature, healthy eyes and ears and throat, normal heart and lungs. He leaves the exam room, having received no needle bites, in a much better mood. He's extremely cooperative for his hearing and vision tests; they are like games and he likes them. The nurse pushes her luck and tries to get him on the scale again. He yells at her and she reprimands him for being "not very nice."

I tell him we have to make one more stop. We go to the blood lab, and I hand them the paperwork. My son has stopped asking about the needle bites, feeling he has escaped. We sit down to wait, or I sit down to wait while he slides off his chair, drapes his feet over the armrest, slides his body under the armrest, repeats his current favorite word ("boogers") over and over. I can feel the old ladies waiting for their blood tests staring at me while I do nothing. He calls me "boogerhead" and giggles. The old ladies stare coldly. He melts onto the floor and slides back up again. He squats on the chair and rocks. He asks me about his friends at school while he slides under the armrest. The old ladies silently disapprove. They don't know I am leading a lamb to the slaughter.

Finally, the nurse calls his name (and is yelled at) and we walk back toward those torturous blood draw chairs. As we walk down the hall, I explain that the doctor needs to have this one last test done to make sure he's healthy. He tenses as he sees the chairs, and I sit down and hoist him onto my lap while I tell him that they're going to have to take some blood. When the technician attempts to roll up his sleeve, a trauma in and of itself, he stiffens and starts to scream. She calls another technician over to help hold him. I talk softly to him and remind him that it won't take long and that we're going to the game store as soon as this is over. Between the three of us, we hold him down and get the vial of blood that will tell the doctor whether or not he's getting sufficient nutrition.

One of the technicians brings him two lollipops. He doesn't eat them, of course. They end up being for his sister, but I never tell anyone that; it seems to make them feel better to give him something for the pain, something most kids like. We sit in the chair for several minutes after it's over. He's red faced and sobbing, holding his pricked arm out stiff and straight. The technician throws us a sympathetic look, the only person all day who has, because it's understandable for kids to be terrified of needles.

I ask him if he's ready to leave, but he can't answer, because he's upset and words fail him. So, I stand. He'll push back if he's not ready, but he stands too, and we walk out. "Can we go to the top floor?" he asks. (Yay! He's overcome the trauma to engage in his routine in every multi-floor building we enter: to travel to the top story.) We go up and explore, go to the game store and buy a used version of Battleship for the Gameboy and head off to school. And we're all done for another year. Well, maybe let's make that a little more than a year; after all, it'll make sure the insurance pays, help us work our way around the calendar and give us all that much more time to recover.