Do You Wanna Dance, Hold My Hand

I thought it was a good omen that we found parking right near the hotel. We entered the small, smartly appointed lobby and could already hear the music. Noah looked so sharp in his navy blue suit and pale blue button down shirt. I opened the door to the "party lobby" and immediately bumped into a small group of Noah's classmates--present and former. "Hi Noah. Do you remember my name?" "Noah, say hello to Ethan," I prompted. Ethan took Noah under wing and escorted him into the party room. My gratitude knew no bounds.

I followed behind, standing at the edge of the room, hoping that would be my perch for the night. But there was just too much going on for Noah. Too many people, too many colors, too much loud music. He left the room repeatedly, like some kind of toy that keeps bobbing to the surface when you try to push it back down. I couldn't blame him, but I desperately--maybe too desperately?--wanted him to keep trying.

Then Jolie found Noah. I don't know if Jolie just has a sweet crush on Noah, or if she simply likes him so much as a friend that she can't help but try to include him. "Do you want to dance, Noah? Will you take a picture with me?" On and off the photo line with Noah, Jolie kept trying. I lost count of the number of times he left that photo line--and the party room. But Jolie never gave up. And I kept pushing Noah back inside. Mostly figuratively, but sometimes literally. "You won't have popcorn after the party unless you dance with Jolie," I warned.

God, it seems almost cruel to manipulate a child like that. No, correction. It seems cruel to manipulate a fourteen year old like that. But Noah has no friends who come calling after school. There are volunteers who come to the house; not the same thing. I just don't want this flame of interest among his peers to go out. At least not as long as I can help keep it going.

Jolie and Noah finally had their picture taken and before we left, I asked Jolie if she could bring Noah's copy to school on Monday, since we weren't going to make it to anywhere near the end of the party. I also made sure Noah signed the party book for Elena. "Elena looks like a princess. Love, Noah Gold." Several kids came by to read what other kids had written to Elena. When they got to Noah's tribute, I heard a collective "Aww."

My heart, as usual, found itself in a couple of different places that Saturday night. It was lodged firmly in my chest, but it migrated to my throat now and again. It's tiring, inspiring, overwhelming and dispriting--often at the same time--to be with Noah, and to try to get Noah to be with his peers. It's just not an option to stop trying.

The Parent-Teacher Conference to Cry For

I think it's important to keep children's confidences, so I won't go into revealing detail here, but it seems important for me to record and remember (details for my off-line journal) the conference we just had with my daughter's fourth grade teacher.

I'm used to conferences in which the teacher goes through test scores, shows you some work, mumbles something nice about your child (hopefully) and thanks you for coming. This was not that conference. The first thing out of the teacher's mouth--after apologizing for the fact that we waited an hour to meet with her--was "I think she's great." (It's worth noting here that Ariel was with us.)

We then went on to discuss struggles with math, and what might be self-defeating there in Ariel's thought patterns and behaviors. But it was the second part of the conversation that had me nearly in tears. That's not because the teacher said anything unkind. It was simply because sitting next to your child while she dissects her social struggles with a precision and insight that is both stark and stunningly true, is incredibly hard to do.

I was enormously proud of Ariel for being able to be so honest about herself, while also pointing out the ways in which other children have at times been unkind and/or unforgiving. I don't know whether my tears were born of sorrow or pride, but I just kept thinking: "I don't have one 'normal' child. I don't have one 'normal' child."

It might have been the lateness of the hour (our meeting started at 9p.m.), so perhaps my feelings were filtered through fatigue. I can't say for sure. But I was so moved by Ariel, so in awe of her poise in talking about a subject that has to be difficult. And to do it with your teacher and parents there together. Wow. More than that: after articulating so well how she perceives her own challenges as well as the responses of others to her, Ariel made a point of telling her teacher, without a touch of irony, that this has been her best year in school so far, and that she loves school.

I could have eaten my daughter up at the moment. But we had come to the conference from Haagen Dasz, where we celebrated Ariel's birthday over sundaes and ice cream cones. I didn't have room for one more bite, even of my delicious daughter.

War, Glorious War!!!

Dear President Obama,
When you address the nation tonight, consider dropping a real bomb on the American people. Tell us that even though we cannot win in Afghanistan, it would be immoral and unjust to continue to fight this war on the backs of an all-volunteer army. Therefore, you are initiating an immediate draft. A war we were told was meant to protect and defend ALL Americans, should be fought by all Americans. Enough of 5, 6, 7 and 8 tours for some, and going to the mall for the rest of us. Be really brave, Mr. President. Show the courage your predecessor and his army of armchair advisor-warriors lacked. Stop pretending that war isn't a hideous perversion, and that these wars aren't destroying us as a nation. Tell us the truth, Mr. President. Even if you don't get re-elected, you will have done your nation a great service.
Respectfully,
Nina B. Mogilnik

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.