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.

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.

The Drops Are Falling From My Eyes

This is how Noah described crying last night, as the drops fell from his eyes, onto the blanket on my bed. Noah was distraught over not being able to find Suppertime for Frieda Fuzzypaws, a book he's had since he's probably three years old. Luckily, he found the book in my carry-on back from our recent trip to Florida. Crisis solved!


But once again, Noah's reaction was a poignant reminder of all that remains challenging to and for him. And in that vein, it was fascinating to hear Noah on this trip refer to Si as his grandfather. Si is my mother-in-law's companion. And yes, he is a grandfather. But not Noah's grandfather. Noah's grandfathers both passed away, Murray, z"l, eight years ago and my father, z"l, three years ago. But Noah still thinks my father is in the hospital. Death is simply too abstract an idea for him. As Len pointed out, if Noah can't see it, it's not really real to him. He can see Si, so therefore Si is his grandfather. And that made the drops fall from my eyes...

Crawling Under, Rather Than Leaping Over, the Bar

I couldn't help wondering, yesterday, as I sat with my three kids in box seats at Carnegie Hall, whether the people who teach my son could even imagine that he could sit through a two hour concert of classical and contemporary music with poise and grace. I sometimes--often this year--think their expectations are too low, that if Noah sits quietly, draws nice pictures, and enunciates well, they've done their job. Not even close, in my book. I took this child to Carnegie Hall, then we stopped into MOMA for a brief visit (Noah's second in about two months), and then we headed to Ruby Foo's, which didn't have the egg drop soup Noah'd been craving for hours. That can be a huge issue for Noah, not getting what he wants when he wants it, but he managed, and we had a really nice meal.

So this morning, as I sat in a team meeting and learned that Noah drew a windmill, and that while he can sign everything by spelling it--but seems not to have learned a single actual word in the six months since he's taken sign language after school--I didn't feel the least bit grateful. I smiled and made nice, but wanted to stand on the table and scream: DO YOU KNOW WHAT MY CHILD CAN DO?!?! DO YOU KNOW WHAT IT MEANS TO RAISE THE BAR HIGH ENOUGH THAT HE HAS TO TAKE A RUNNING LEAP TO GET OVER IT??!?! HAVE YOU EVEN TRIED TO MOVE THE BAR TO A PLACE HE MIGHT NOT BE ABLE TO GET TO?

I don't discount the progress Noah's made, but as I recounted to one of our special ed. gurus in my town, my waking nightmare is thinking that because Noah doesn't throw chairs, has a very low IQ, and is a smiling and compliant child, no one's too exercised about pushing the envelope with him. I pray my nightmare isn't the reality, but sometimes I can't help wondering...

Death Defying

How do I explain death to a child whose disability precludes his being able to understand abstract concepts? Noah still thinks his grandfathers are in the hospital. One passed away eight years ago, the other three years ago. In the past couple of weeks, Noah has repeatedly mentioned that he misses his Papa. When I ask, he acknowledges that it's both Papa Jack and Papa Murray that he misses. "How does that make you feel?" I've asked. "I feel sad." Noah always comes back to: "They're in the hospital. Can I make them feel better?" And I have to tell Noah that there's nothing we can do to make them feel better. It's too late for that. When Noah asks where his Papa(s) are, I say that they're in heaven. More often than not he'll then reply, "Can I go to heaven?" "No! No! Not for a very, very, very long time."

I'm never quite sure how much Noah knows, and Murray passed away when Noah was only five. "What do you remember about Papa Murray, Noah? Do you remember what he looked like? What color was his hair?" "It was white." Yes, it was. "What about Papa Jack? What did he look like?" "He had a beard." "And what else?" "A mustache." I take some comfort in the fact that Noah remembers these details, because I know it means he's remembering specific people. I tell Noah over and over that I miss Papa Murray and Papa Jack too, and that I know they miss him, and that they loved him very much.

All of this just brings into sharp relief for me the power and rightness of Noah's instincts about people. His grandfathers were two of the nicest, most decent, most loving human beings the world could ever know. And Noah knows that; he feels that about them instinctively. He may never understand what death is, but he knows better than just about anyone I have ever known or will ever know, what love is.

What Does Retarded Really Mean?

Technically, it means a person has a particularly low IQ, somewhere in the 60 range, if memory serves. My younger son, Noah, was recently subjected to IQ testing (part of his every-three-year testing regimen), and came out with a score of 48. I suppose that should make me feel awful, desperate, deflated. After all, he's officially mentally retarded, based on that score. But what I felt instead was that if in fact Noah's score represents him in any real way, then my sincere hope is that the world finds itself populated by people with IQs of 48.

After all, with more 48 Noahs in the world, we'd have a new population of people who are kind, who have no agenda, who aren't seeking to gain advantage over others, who only want to please people and make them happy, who have no urge to make money, to make war, to make other people feel bad. In fact, we'd have a whole new group of people who are entirely about being happy and making other people happy. We'd experience the simplicity of loving the people we're with, of having extraordinary radar for people who are genuine in their affection and concern, and we'd experience childhood wonder nearly every moment of every day.

My thanks go out as always, to Noah, for reminding me that those markers so many of us hold dear--educational attainment, job status, bank balances, etc.--can't hold a candle to what a "retarded" child like mine can give to the world. It's a whole new window into who really has ability in this world, and what it actually means to be disabled...

Download and Watch America's Song

Download and Watch America's Song

Speed Bumps and Mountain Peaks

I've never been one to take for granted that life will be easy. In fact, I'm quite the opposite; the person always expecting the other shoe to drop. It would be nice, now and again, if my dismal expectations did not come to pass.

I had and have no illusions that raising kids will be a picnic. Noah taught us that when he brought his edible self--and his autism--into our lives. But who would have thought that he'd turn out to be the easy one, all things considered? What to do about a teen who seems so down at times, so disengaged, so cynical? I'm forever being told how much my kids are like me, but I had reasons to be glum as a teen. My mom was a whack job and as a result, I didn't live in a happy home. Food in the fridge was an issue. Not so for my teen. If the fridge isn't always packed, the pantry is. He can have friends over without fear of having his mother embarrass them (at least most of the time). He's got more God-given ability than I would have if I lived ten lifetimes. And yet...

With our daughter, I thought we'd be managing speed bumps, but now I'm thinking more Himalayas. Every day lately seems to bring tears and fears. Tears over not having friends, over not fitting in, over not being included, over literally not being seen. And fears that it will always be so. I never wore rose-colored glasses, so I am well able to see where she might make things harder for herself, but having been a misfit myself, I ache for her. When she cries, I do too. Really. When she's at fault, I call her on it, but when she tells me how she tries to join other kids nicely, by saying things like, "Hey, what are you guys talking about?" and the response is, "None of your business!" I want to find those kids and strangle them. I want to tell them that being mean snot-asses now might make them feel powerful, but they'll peak in high school like all girls like them do, and it'll be downhill from there.

I try to tell myself that all of these things are phases, that kids change, and that circumstances do too. But it feels like we just leave one phase and enter another. And every successive phase seems harder. Even the little one pines for when things were simpler, when she was younger, in kindergarten. I feel that way too. Life was so much simpler when I was in kindergarten. Fingerpainting and sharing snacks. What more did life ask of you? And everyone was equally able to give.