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.

The Boy in Restraints

We discussed, Len and I, whether to send Noah to the JCC's respite program. After all, he's not a problem at home. We don't need relief from him. Then again, unless we have set plans, he's likely to spend a weekend day parked in front of the computer, or watching videos. And that doesn't seem okay to me.

Noah's entitled to relax after a week of school, but I worry that his weekends in front of a screen are a foretelling of his future weekends as an adult. So I try to find things to break that pattern. We do a lot outside of the house, but every weekend day is beyond us, as we need downtime too, and have the other kids to be with as well.

It was in the spirit of getting Noah out of the house for a few hours, where he could be occupied by other people, and possibly engage in some fun activities, that I signed him up for the respite program. The timing was also perfect, as his sister would be there for a play rehearsal and I could pick both of them up at the same time.

I wound up staying the first Sunday, not sure how Ariel was settling into her program. I walked around the building a couple of times, peaking into various rooms, in the hope of finding Noah's group. No luck the first two times. But on my third try, I saw Noah in one of the bigger rooms, at the far side. He caught my eye and smiled. We waved at each other. I tried to see what the boys--they were all boys--were doing. It looked like one of the staff had projected something from a videotape or a computer onto a screen. I thought perhaps the kids were playing a game based on the projection, but they were all sitting passively. No remotes or clickers of any sort in hand.

Noah seemed content, so I waved again and walked back to the lobby. Closer to 4p.m., when Ariel would be dismissed, I went back to the room to get Noah. I looked in, and he was in the same spot, at the far side of the room. He saw me and smiled. Then something to my left caught my eye. It was two large-ish men holding a younger boy by the arms and across the chest. The men looked stern. The boy looked...frightened? perplexed? lost? It was hard to tell. I didn't hear anything. There was no screaming. It was as if I'd caught a moment frozen in time. The boy in restraints. And everyone else.

A staff member came over to ask me if was there to pick up my child. "Yes," I said. "He's Noah." Then the program director came over and okd the early pick-up and excused herself, telling me that there's a "situation." "Oh is that what they call it," I thought.

Noah came out and we walked toward the lobby together. "Did you like the program today?" I asked. "Yes" came Noah's reply. "Do you want to go back?" "No" was his answer. But Noah often says he likes things and doesn't want to return. There's not much I can glean from those answers. The bigger question is do I want him to go back?

I think the staff are kind and caring. I'm glad they can gain control when they need to, even though it hurts to see a boy restrained. And I'm not proud to say that a willingness to restrain someone who's acting out in threatening ways is important to me, since my child cannot defend himself against someone who behaves that way, should he god forbid be a target, or just be standing in the wrong place at the wrong time.

Still, is this the right place for Noah? Is this better than having him at home, searching YouTube for his favorite Sesame Street or Barney videos? What does he learn from being at the JCC with mostly older boys and young men, some of whom look like they might have been candidates for institutionalization years back? Does he learn conversational skills? Social skills? No, but there's no false advertising here. This is respite. A break for the parents. But it's not a break from Noah I need. It's to accept that he doesn't have a ready place to go outside our home that suits him. He's not a burden we need to unload, but he's also too impaired to be with the kids who "just" have speech delays, ADHD or mild cognitive impairments.

Noah's the boy who fits in the cracks between the horrifically impaired and the just-so impaired. When I saw him across the room, I had a mental flash that I was viewing him in a kind of ICU. I was outside looking in, and he was waving to me, letting me know he was there and he was happy to see me. Then I walked away. I left him in the ICU. And when I returned, it looked like a holding cell. And Noah was still happy to see me.

NEXT TO NORMAL

For anyone who's ever loved someone and lost someone--actually, or (just) emotionally. For anyone who's ever wrestled with his own demons, or with anyone else's. For anyone who's struggled with the impossibility of reaching inside another person's soul to save him. For anyone who knows deep down that happiness is a flawed and elusive thing. This show will speak to you. You will laugh. You might well cry. And you will be grateful beyond words if you have a Henry to call your own...

To Be or Not to Be: A Boy?

It's been a long time since I've written. I think about writing a lot, but it seems the thoughts just swirl around in my head, instead. Like recently, when Noah approached a beautiful blond classmate (he seems to have a special thing for blondes) and told her, animatedly, "I'm so happy to see you." As he said it, he walked over and gave her a hug (very appropriately). And next came, "Can I wear your dress?"

Sometimes, I do wonder if Noah suffers from some kind of gender confusion. He often asks if he's pretty. When he was younger, he often asked to wear tutus (and borrowed cousin Sara's when we visited). He's talked pretty regularly about being a princess or a ballerina. The challenge here is that I can't really talk to Noah about this the way I might talk to a non-disabled child. After all, how do I even explain notions of gender and gender roles to a child who doesn't understand abstractions?

Do I think Noah could be wondering about his own sexuality? Not really sure. All kinds of things happen during puberty. I just know that I don't know how to help him understand the mental and physical urgings he might have/be having. Just one more thing to add to the endless list of things Noah needs help understanding. And just one more thing I'm ill-equipped to help him with.

Sometimes, this stuff is just funny. After all, what can you say to a child who announces to you, "My penis is hot" other than, "Honey, you tackle that one; it's not my department." At those moments, you just have to appreciate the honesty of a child who doesn't know to hide his feelings or his confusion. There's something really beautiful about that, especially when you think how much of our kids' sexuality is treated as taboo, as scary, as a tap to be turned off. Noah just is. He sees a beautiful girl and he tells her how happy he is to see her. He gives her a hug. And he wants her dress. He doesn't want to un dress. It's refreshing somehow. It's certainly non-threatening, which must be a blessing to girls who feel a little at sea in middle school's giant tub of testosterone.