• one book of Garfield cartoons
• one pair of shorts
• one pair of sweatpants
• two pairs of underpants
• one pair of socks
• two t-shirts and a long-sleeved shirt
• a pair of swim goggles
• two dollars and a large handful of change (his entire life’s savings)
• Gussie and Dog (his two oldest and most important sleep friends)
• a flashlight
• a colored pencil
• a tiny blue stretchy frog.

All of this was gathered up into his baby blanket.*  He lugged it downstairs, opened the front door and stood looking at the world. I sat in the dining room, pretending to write. Then he announced, as if to himself but loud enough to wake the neighbors: “I have decided not to run away today” and shut the door.

I found his choice of necessities very interesting.  Despite his current obsession with Uglydolls, he left behind the few he has managed to acquire. He left behind all his most favorite books (wise, I suppose, since books are heavy to carry around and he, like me, is a library fanatic). But he brought swim goggles. And a pencil but no paper. Why? I wish I knew.

But if I were going to run away, I bet my list would look equally odd to him. It would probably have more underwear but it would also have strange things like a half-melted candle that my grandfather made or a taped up bundle of the letters Ed wrote to me over the years we were together but in different continents, both useless on the open road.

If you were going to run away and had to fit your necessities into a baby blanket, what would you take?

*I know this because I helped him unpack at bedtime.

I DO have a difficult child. I have two complicated ones but only one truly difficult one. My first. And I am absolutely certain I would be a lesser person were it not for what he has demanded of me.

First, he demands tenacity. He never slept. He cried all the time (and that is only the most minor of exaggerations). He could not be comforted. He found no respite at all in my arms. There was no sense that I, as his mother, could do anything more for him than any other body willing to hold him and walk and walk and walk. He was, even then, a picky eater. He only liked the right breast. Then he only liked the left. Then he wanted neither except if I were in the bathtub. Then he wanted to feed for three hours straight. He was having none of that proper mouth positioning crap. He was going to purse up his little lips and suck as if I were a straw. Ow. But I could not give up. Of course not. I was his mother. He was mine. I had to stick it out, no matter what. I still do. The same rule, over and over. The same limit, over and over. The same line drawn over and over.

He demands patience. Recite the same poem (Christopher Robin goes hoppity hoppity hoppity hoppity hop…) three hundred times a day. Never vary the pace or speed of movement. Never move suppertime even by a minute. Allow no loud noises, bright lights, harsh clothing. He needs me to be soft voiced and gentle, even when I want, need, to give a loud roaring noise of sadness and despair (I think we’re back in the Hundred Acre Wood with that one).

He demands faith. As teachers, grandparents, relatives, strangers, indeed, grown-ups of all kinds find themselves bemused, confused and finally eroded by his inflexibility, his comprehensive knowledge of geography, grammar and space, his volatile temper — as all those around us ask “what is wrong with your child” I must carry on believing in him. Absolutely and utterly. He is my child. I will not doubt that we can pull him through whatever challenges he faces. I believe that he will grow up to be something wonderful, no matter how hard he struggles now.

He demands strength. I must face him down daily, set limits, enforce them, refuse to be bullied by temper tantrums or sad looks. I must always be strong, sure and present, a rock in his unsteady world.

He demands courage. I must face what he is, rather than what I had imagined he would be. I must confront him when necessary, confront others when necessary. I must walk forward into the darkness fearlessly because I must light the way for him.

He demands love. I found within myself a well-spring of love far deeper and richer than I had imagined I possessed. I imagine it as a heavy silk blanket, warming him, cushioning him against a world he finds sharp-edged and unsettling.

Of course, it is not just me who benefits from my acquaintance with a difficult child. He accepts nothing on trust, questions, pushes, demands to know why from all those around him. By never acceding quietly to anything, he forces people to rethink their assumptions, to explore their rationales. He creates an atmosphere of questioning, an almost electric swirl around him that energizes those caught in its wake.

Without this child, and others like him, refusing to sand off their square corners to fit our round holes, we would lose the opportunity to grow past our assumptions and limitations. He pushes everything, everyone. If we are open to it, we will find ourselves and our worlds expand as he passes.

But swimming? Well, that’s a parenting must-do. Only sporting skill that can save your life. (Unless someone, you know, threatens to kneecap with extreme prejudice you unless you hit a homer, but that’s pretty unlikely. They are just as likely to threaten to kneecap you if you don’t decline this Latin verb.) So this summer the children did these lovely group swim lessons at the local pool. Helena did quite well (so long as you don’t ask her to jump in) and is not exactly swimming, but will happily bob along in water she can stand in. Daniel put his various teachers through the wringer as he clung to them, strangled them, screamed at them and sobbed at them, but emerged from each lesson cheerful and triumphant and ready for the next one, so the lessons carried on. He could probably swim three or so feet now, without too much angst so long — and this is important — as he can also stand in the water he’s swimming in, which he has defined as 4′3″ of water and shallower. At 4′4″ he starts panicking. And sinking. And screaming.

So that’s his limit. It’s all right. It’s not that bad. And I saw what some of you have very wisely pointed out. That if I could simply tell his instructors that he has Aspergers’ Syndrome (where does that apostrophe go?) then they’d be more ready for him and wouldn’t maybe ask him to do things that he simply will NOT do. Like jump into the pool in 5 feet of water. He just won’t. And the shortcut to explaining that to them would have been incredibly useful.

It’s all about limits. Skills. Knowing who you are and what you are likely — or unlikely — to be able to do.

This hit home particularly hard because it’s on the heels of a strong suggestion (from an occupational therapist who’s been working with Daniel this summer) that Daniel has Aspergers Syndrome. We still have to decide whether we will go get a proper diagnosis, but I’ve run the thought past another handful of professional type people who know Daniel and the consensus is that he very likely does. And if he does, well, it’s not like the idea that he’s autistic comes out of the blue. It’s always been there, sort of lurking in the shadows. Does he? Doesn’t he? What then, is going on? Why, then, does he behave like this, react like this? Why is he like this?

And throughout it all, I have off and on wondered whether I was to blame. Whether I could be making things better if I were a better mother. Whether I was simply doing my job badly. Whether I had somehow created the patterns of behavior that look oh so much like spoiled-brat syndrome. But when an idiot takes my  hidden fear and uses it to dismiss a whole slew of suffering children and their parents, well, it sort of shows up that it’s a ridiculous idea.

It is shocking to hear echoes of what an idiot preaches in my own head to find that soft, white mushroom of doubt growing in me. And I wish I could uproot it entirely and cast it away. A diagnosis would almost be a relief. There IS something. The something we started seeing when he was only days old. The something we’ve been trying to help, trying to understand for his whole life. The something that sits in the room with us like an invisible dragon waiting to flame. And a diagnosis would contain within it the relief that I am not a bad mother. Some things cannot be parented away. No amount of love can change a person’s brain chemistry, their physiology.

I do know that autism is real, that Daniel struggles, that we have poured ourselves into helping him. I don’t know why the suggestion that there might be something really there, something with an actual name to it, bothers me when I also know it would be a relief.

But then, I don’t know why compete arseholes have their own radio programs and think that they’re geniuses.

His teacher, however, has chosen to describe this welcome development like this:

“He’s been so good, he’s like a different child.”

She has not said this to me ONCE (although I barely contained my rage the first time). She has said this to me a dozen times. More. She wants to know what we’re doing differently. If we’ve finally taken her oh-so-frakking-wise advice and medicated him. If we have him in some super-de-dooper therapy. Of course, we’re doing nothing differently. We’re just trusting in Daniel to grow into himself, that he will figure things out, that he will learn self-control, patience and grace. And we pour into him our trust and patience (or try to. On good days, we do). But we are not trying to fix him, because he is not broken.

And still she says to me, “He’s like a different child.”

And every single time she has said it, especially today when she said it to me while my arm was around my tired and somewhat frazzled child, I have said this:

“No, not a different child. The same child. The same exact child. All that wonderfulness you’re noticing now, that’s right there in Daniel. All that struggling he did, that’s Daniel too. The same child.”

Aren’t we all like this? Good days and bad, moments of grace and moments of struggle? Can we not let our children be thus too?

Not a different child at all. Just my child.

Then there are nights when you’re ticking along fine and suddenly wham bang, flat on the floor, eyes rolling up in your head. When in fact, you hit the Wall of Tired.

I just did that.

There are good reasons. One, it’s legitimately late. Two, today’s circus routine included picking up a hysterical Daniel at school halfway through the morning, while also calling someone to come look at a heater that had begun smoking ominously when turned on, setting off every fire alarm in the house, while excitedly expecting house guests, while not getting any work done or any soup made or anything else except driving furiously down the road, smelling of smoke and wondering how to help the boy wonder learn to keep his temper and then considering how, perhaps, one was not quite keeping ones own temper if one were driving a little too fast while muttering fiercely under ones breath and having to reach deep for any shred of calm.

Yet, the day has ended. And all is (somehow, miraculously) well. And another day I will tell you a little about Daniel’s meeting with the president of Ed’s college. But for now folks, I have hit the Wall.

G’night.

This time last year I was admitting that while I didn’t like high-waisted jeans, that each must choose her own likes and dislikes.

Of course it doesn’t make sense. That out of the blue, a woman’s electro-nervous whatever system can simply seize up. That my mother can’t remember my cousin and oldest friend. That Bush is president. The world is not orderly. But it is so hard to cope with that, especially when you’re Daniel.

This morning in the car he spent the half-hour drive to school working out how long it would take him to count to a million. Or a billion. Or a quadrillion. Or a thousand. If you counted one number a second. One number every two seconds. If you stopped counting for meals and bed-time. If you didn’t count on leap days. If you did count on leap days. If you counted by 100s. By 1000s.

Here at least, he found a moment of order.

I of course, nearly lost my mind as he entertained the idea of counting to a million over the next month.

When we see him as a problem, life grows dark. All his episodes, his manias, his obsessions and howls of frustration take on sinister significance. They rack up on some inner chalkboard and each swipe of the chalk pulls us further from him. Trying to solve him, alienates us from him. Suddenly he is the other, the challenge, the problem.

When we see him as our darling, our son, our little one, the sky lightens. Suddenly, it is so much easier to parent him, to set the limits he needs, to negotiate with him well. He behaves far better as well, sensing (like the canary in the mine) that there is enough oxygen for him to breathe, enough love for him to feel safe.

His teacher wants to know how we’re solving him. Talking to her is like pounding my head against a rough concrete wall. Pointless. Painful. She wants to know who his therapists are, what traumas he has endured. She wants to know how we handle him so that she can “teach him how to behave.” She wants (a month into the school year) to see progress, to know that she is fixing him.

My child, my little one, my own. He doesn’t need fixing. He needs to be loved for who he is right this minute.

Then we found a school and the summer came. Freed from the whole insanity of school searches and their expectations, we had a lovely time. I was calmer and happier and no longer cringing when the phone rang. Daniel was (naturally) calmer and happier too. Peace reigned. And these last few months at the Wonder School ™ have been — except for the drive — quite peaceful too. I trust them. Things are working.

Now we are moving. We will have to leave the Wonder School. The whole question of how to educate Daniel has been reopened. I am, I have discovered, not really recovered yet from last year and already at the end of my very thin rope. I cannot do it again. I cannot get so twisted that I see my lovely, funny, eccentric child through the eyes of round-peg people ever ever again.

It is a parenting trap waiting to spring on us all. We are raising children not just to suit ourselves, but to suit the society we inhabit. We might not cringe at home if they eat with their fingers, but in the restaurant, suddenly we see them as cavemen. War whoops that would barely cause us to turn around in the back yard become evidence of our child’s incipient violent tendencies at the playground. We don’t want our children to be cookie cutouts but we expect that they will toe the line at school, follow directions, play nicely with others. Even conscious of this, even purposely rejecting the standards of an external judge, we — as at least semi-productive members of society — urge the unwritten rules of getting along with others on our offspring.

It is one of my perhaps irrational worries about homeschooling Daniel (which is definitely back on the table). He doesn’t need to learn to get along with me, to follow my rules. He and I have a pretty good mutual understanding about how to deal with each other. He needs to learn to get along with others, with other children and other adults whose rules may be less explicable (to him) or more irrational, who may not temper their discipline with love and who may not be patient when he wants to draw up plans for a BathOMatic. He needs to be bounced along on the billiard table of life with all the other little balls without exploding. (I’m getting a vague literary reference to exploding billiard balls. Terry Pratchett I think… Alchemists’ Guild. Anyway, that’s my image of Daniel).

And I need to find out how to make this happen without losing sight of who he is to me — my beloved, bedazzling, bright and bonny, strange and sulky son of my heart.

He has his idea of order. I have mine. I can deal with a long line of balls across the living room for about six hours. After that, it starts to poke and prick and needle my desire for order. I try, honestly, to respect the creative urge and the child’s need for space and respect and AAAAAAGH! Must clean it up!

Daniel and I are similar again in how easily we are thrown out of whack by a shift in routine. Helena’s trip to the ER and yesterday’s enforced idleness have effectively subtracted a day from my life. I am completely discombobulated and am trying to work but am instead ten kinds of unproductive fruzzleygagooneywhatsit. (You know what that is, right?) It will take me another day or so to return to what passes for normal.

Helena is feeling somewhat better. So really, all is well with the world.