Water Tag

Today is my son's 14th birthday. It's been a good day, what with the occasion coinciding with Thanksgiving and all. But yesterday gave me yet another window into Noah's amazing, sometimes heartbreaking world. It started with the water cooler.

You see, Noah is in the habit of making himself hot chocolate on nearly a daily basis. And yesterday, the water cooler was out of water. So Noah trudged to the basement and brought up a big water bottle (it must weigh nearly half of what he does!) but I couldn't change the bottle for him, because it was too heavy for me to lift and turn over. Noah asked if daddy could do it, but I explained that daddy was resting. And then the problems started.

Noah became distraught. It's nearly impossible to describe, other than to suggest that you imagine how a child might feel if his favorite pet just died. Tears welled up in Noah's gigantic, confused brown eyes. He just couldn't understand or accept what it meant not to have his hot chocolate from the cooler, right then. This is not about a spoiled child throwing a tantrum; this is about a child with a significant brain disorder whose life is substantially based on nearly immutable routines. Noah makes hot chocolate with water from the cooler and therefore the cooler is not supposed to be empty when it's time for him to prepare his drink. Or if it is empty, it has to be refilled. Immediately.

I tried to mollify Noah by telling him that I'd boil water for him on the stove, but that clearly struck him as unacceptable. Nevertheless, I turned the fire under the kettle up to raging inferno, hoping the water would boil instantaneously, and Noah's tear-filled face would revert to one of happiness and contentment. Noah did calm down, but not before my nerves were a bit frayed, and my voice rose a little--against my own desires--in abject frustration.

Just a little while later, I reminded Noah that his birthday was coming up, and I asked him what he wanted from Sam. I know that Noah doesn't crave things, so I wasn't surprised that when I suggested some possible "gifts," Noah chose "playing wrestlemania." "Anything else you want from Sam?" I asked. "To play tag."

And thus my son once again took me on that whiplash journey from inconsolable over what seems so basic, yet so hard for him to understand, to giving me such pride in his innate awareness of and desire for connection with those he loves.

Teacher Teacher

As I watched my daughter play My First Lotto and then do two puzzles with my son last night, I not only marveled at her outsized ability to engage him, and her wisdom about how he thinks and what he knows and likes, I also wondered whether her extraordinary empathy, observational skills, and passion were things that are of any value in this world.

Here was a not-quite-ten-year-old child, taking charge of her not-quite-fourteen-year-old autistic brother. Watching her in these moments is a bit like watching a killer whale go after a seal. The determination, the single-mindedness, and the will-not-fail spirit are breathtaking All these qualities are present at other times, but the innate radar my daughter has for my son is something really quite amazing. Clearly, she's watching us with him, but I think she's surpassed us. Her awareness of the words to use with him, his preferences, and her overall sense of how he thinks and experiences the world startle me.

It was not so long ago that Len and I were headed out for the evening. Noah was having a hard time, carrying on. It was Ariel who said, "Don't worry, mom. I'll do an art project with him." She just turned him around and marched him into the den. And lo and behold when we came back, there was a completed art project.

This extraordinary capacity combines beautifully with the more normal resentment, anger and frustration that any typical sibling is likely to feel toward a disabled sibling. We feel the fallout, the collateral damage, all the time. We need to deal with that, and she deserves the space in which to express her less-than-generous feelings. The trick is to give her what she needs without depriving her siblings of what they need, and vice versa. Wish I could say we've mastered that.

But back to wondering whether these qualities of passion, compassion, observation and determination matter. The obvious answer should be "yes," but I can't help wondering. Ariel's got big ambitions--saving the world, saving the oceans, teaching adults a thing or two about the damage they (we) do daily to her world, etc. etc. If I had real money to bet, it would be on her. But the world's a funny place, and what she brings to it might not have "market value." After all, what price do you put on seeing deep into the mind of an other-worldly child and dragging him into your own, simply because it's the right and necessary thing to do?

Who Will Call Social Services?

"You're ruining my life! You're ruining everything!" wailed my daughter. What a lovely end to the week. I believe my crime was not doing a homework assignment for her. Ahh, such felonies we should all know from...

Seriously though, let's talk about the darker side of parenting. I was thinking, just a few minutes ago, that it's really bad to beat a child, and it's not really so great to hit a child. But where does thinking about beating a child fit in the pantheon of parental crimes and misdemeanors? Perhaps you're horrified that I'd even bring this up. Well, there's the reality of parenting, colliding with all those polished images of control and reason.

I'm not sure I can even relate to a parent who's never thought of strangling her child, even just once. It just doesn't seem normal to me that you can, in the course of raising a child, never reach a point of anger and frustration that would lead you down that dark mental path. The trick of course is not to cross over to the dark side, to restrain yourself, even though with every fiber of your being, you feel a monster rising up inside you.

Is it okay to admit sometimes that the child in front of you is a being you want to strangle, that running away from home should perhaps be the purview of parents, rather than children? This is not one of those times when I want a self-help guru to tell me to get a grip; this is one of those times when I wish the walls of my house weren't made of plaster, 'cause then I'd have a shot at being able to put my fist through one of them. No luck, so the balled-up-fist-brain that's me at the moment will have to settle for writing, for keeping my communications with my child taut, brief, and as emotionless as possible. And then of course there's alcohol...

Death Does Not Become Her

I attended my friend Esther's funeral today. It reminded me how much I hate funerals. Esther was remembered as a woman of uncommon generosity, tolerance, kindness, and wisdom. All true. And more amazing given the fact that she and her family were exiled to Siberia during World War II where as a child, Esther was used as a slave laborer. Yet she found humanity and life at every turn, or more accurately, she created it. She made curtains for her little room out of gauze a cousin swiped from a local hospital that she dyed in a vat of tea.

I still have the lovely cards and notes Esther sent me through the years. I now have even more reason to treasure them. But I hated being at her funeral. I hated being reminded that another generous, lovely, loving human being, someone who experienced stunning inhumanity (just as my father did), is no longer here to model for us how to be in the world. Esther lived her life to a humane standard most of us couldn't live up to if we outlived her by eons. Saying goodbye to Esther felt like losing my father all over again. Death surely does not become her, just as it did not/does not become my father. Living takes on greater urgency when those who set the bar are lost to us. Living well and purposefully takes on the greatest urgency of all.