She walks in beauty, like the night.
What causes a change for the better? What things get the credit? It is very interesting to me how things work, or how we think things work. Just four days ago I spoke to Nat’s doc about increasing his Luvox a tad to help him feel less obsessed. And I feel like there is a positive difference already in him. This morning he got himself ready for school, and even said, “Your bus is here! Bye, Daddy!” on his own. I am looking at him right now, his angular face framed by the flowering dark purple hyacinths on the coffee table, and he is whispering and smiling. Things just seem softer around here. Maybe it’s me; maybe it’s Nat.
But — even Benj seems more content. He was giggling this afternoon because he was remembering something funny in school. “Jeremiah said that he was holding onto a stick, and I thought he said he was holding onto his dick!” His eyes were bright and his cheeks were pink as he laughed and laughed. I laughed, too. His sense of humor is very Senator — this is exactly something my dad would have said. No, we are not always the most appropriate people, but we are always good for a laugh.
Maybe Nat’s new level of serenity has been conveyed to Ben subconsciously? Maybe neither of them is that different, but I am the one who is feeling better? Because I am. The evil poison that had seeped into my skin a year ago has finally receded and I feel renewed. Friday late afternoon is ripely pregnant with potential.
I look around me and I see beauty everywhere. The physical space: the rooms I’ve decorated in the house, in soothing robin’s egg colors with splashes of hotter shades here and there. The people around me: three boys I gave birth to, each so unusual, and so beautiful to look at. I drink them in with my eyes, and gather them to me when they will allow it. My husband and best friend, Ned, and how right we are for each other. Sometimes we feel to me like part of the same person, utterly comfortable and warm, like an embrace or a snuggle on the couch; and then other times we are miraculously separate; he is the Other: foreign, male, cooling to my heat, the cold dangerous wave poised and hovering over my beach.
My garden outside, beginning to wake up, sending out yellowish green tendrils through the wet chocolatey earth. Maybe all that I sense is simply that the stranglehold of winter has let go and we are all breathing freely the gentle air of spring.
And maybe it’s because two gorgeous new bellydance costumes are hanging up on my bedpost, one a vibrant sparkling pink, red, and silver; and the other, a delicious sherbet green, just waiting for me to slip them on…
Courage! What makes the Hottentots so hot? What puts the “ape” in apricot? What have they got that I ain’t got?
(You can say that again.)
— if you don’t know I am not telling you.
I have been thinking alot about what feelings feel like. A lot of people call me “brave,” for example, or say that I have “courage.” They are usually referring to the fact that I speak honestly about what’s going on in my life/head. One friend says I’m “so out there.” It’s funny to me because I don’t go around feeling brave. In fact, it is often the opposite. I frequently feel nervous or a little scared even, and yet I continue to do whatever I have to do or want to do, whichever I am called upon at the moment. I guess this is bravery? To feel fear but to continue with the right thing anyway. It’s just that it doesn’t feel the way I imagined it would, but what does?
When I really think about it, joy doesn’t feel the way it sounded when I first learned the word. It was kind of a silver word, it looked and felt clear, shiny, pure. But the first time I was conscious of actual joy was when I looked at newborn Nat. He was so perfect and yet so utterly fragile and dependent. I was engulfed by my new and tremendous responsibility and I was almost afraid to let myself love him. Almost. The overwhelming feeling was of being breathless and sleepy at the same time. I felt something expanding in my chest and my throat, that squeezed tears from my eyes, and it came to me that this was joy.
Last night I experienced both a sickening fear, courage, and joy, all at once. I was called upon to perform for my belly dance classmates. The teacher took a 20-minute song and divided it into 6 parts (there were 6 of us) and had us each choose a part: intro, veil, zills, drum solo, long-middle-part-whose-name-I-forgot, chiftatelli, finale. I foolishly chose the drum solo, and yet, any part would have been difficult for me because I have never performed improvisationally before, and certainly not in front of other dancers who really know what’s what (in other words, before whom you can’t fake anything).
I watched the dancers go before me, each brilliant and lovely. They have all been dancing at least twice as long as I have. They had a level of comfort that I would have envied had I not been so entranced by their movements. Each one tried a bunch of different moves, some slow, some faster, incorporated spinning, moving around the room, or then being still. It was as if they had all done this thousands of times before.
But as the drum solo part neared, I felt my heart pounding as strongly as the doumbek. What would I do? Would I have enough ideas? Shimmy alot. Undulate. Hip drops. Pivots. The music started and my body was moving, but it was not belly dance. I don’t know what it was. A little regular old club dancing. A little bit of lame shimmying. My stomach dropped to my knees, my face was red with embarrassment. I could not look at anyone. I turned my back on the girls. I looked at the teacher who was watching with an enigmatic, unreadable expression. Eventually she stood up and moved in different ways to give me ideas. I remembered the hair tosses. I shimmied and lifted my arms. She smiled. Ah, that was right! But the song ended and I slithered back to my chair, wishing I could disappear.
And yet. I had done it, and I already felt like I could learn from it. I watched the last person go, the song ended, the world continued to turn. I felt clarity as my embarrassment receded into memory. I thought, I won’t drop out because of this. I will merely adjust my goals. This class is a bit over my head. But I still love it. Just not this part of it. I just won’t do this part next time. I am getting better at dancing, but I am not ready for improvisational performing. One (traveling) step at a time.
After, I went out to dinner with a new friend from the class. That was a great thing for me, because she validated many of my thoughts and feelings about dancing, the class, dancers in the area, and performing. She is my first belly dance friend and it is a precious gift that I hold gently, like those bubbles that Nat likes to blow. Making new friends, no matter how wonderful they are, is also an act of courage, and a joy.
When I woke up I was hearing zills in my head. I knew that I would have to practice and the whole evening would surround me again. I popped in my teacher’s CD and as soon as that crazy, sexy clarinet started up with the heavy, hard drum, I felt my blood rise and my excitement with it. I fastened on the zills (middle finger and thumb) and started clinking them like crazy. Whose hands were these, fingers moving expertly back and forth to the music? I worked on all the different moves with zills, sometimes losing the rhythm, then getting it back. I was out of breath, but every now and then I caught a glimpse of myself, either in the shadowed silhouette on the wall or in the hall mirror. Light pressure in my chest, sleepy-high feeling behind my eyes: Joy. As strange as it sounds, that is joy. And continuing to dance, even with the vomit-like taste of failure in my mouth: that is courage. I should know, because I learned both from Nat.
The only thing that remains the same about life is that nothing remains the same. Nat has become increasingly animated, which is wonderful, but also increasingly fixated on routine. This heightened animation reminds me of his developmental burst that occurred when he was 9. At around that age, we had started him on a course of Zoloft, which I chronicled in my book. The Zoloft first helped calm down the extra noise in his perceptions so that he could focus better on the things we wanted him to focus on, such as communicating directly with us. He began to talk more, and his language was more sophisticated as well. He started commenting freely on things he saw, and he started making jokes. (Pointing at me, and saying, “It’s Max, yes!” So funny!)
What’s going on now is probably due to the fact that Nat has grown a lot in the last year or so, and yet his dosages of Clonidine, Risperdal, and Luvox are very low. We do not want to increase any of the calming medications like the Risperdal or the Clonidine, because he ends up becoming too passive and quiet. I don’t know how he would respond to an increase in Luvox, which is an SSRI like the Zoloft. We will be taking him to his psychiatrist soon to explore this.
But we had a bit of a rough weekend with Nat; rough for him, that is, poor guy. There was no aggresssion; it was all about obsession, an issue near and not-so-dear to his poor Mommy. Nat has been obsessing about the routines of his family members. He noticed, for example, that Max sleeps late on the weekends. He did not like that. “Max will get up!” He kept saying. We kept explaining that Max wanted to sleep. Eventually Nat snuck upstairs and said this to Max, who then woke up, of course. Max good naturedly said it was okay, but really. Let a sleeping teen lie! Nat also had a big problem with our town’s new recycling policy: If you can rip it, recycle it! So when we put cereal boxes in a paper bag to recycle, he became very upset. “Frow in trash!” He even bit his arm, he was so mad. Stupid Recycling Policy! (Said like Homer Simpson or Lucy Van Pelt).
But seriously, all weekend there were these control struggles with Nat. I find myself alternately frustrated with his obsessiveness, and then proud that he is so aware of the things around them and articulating his awareness. At times we would be rolling our eyes, like when we were trying to frost the orange lava birthday cake for Benj and Max and I realized it was a bad kind of frosting. Nat had mixed it up with the green, just right, (although we soon realized we didn’t need green!) and I noticed it looked too fluffy. I tasted a tiny bit and it was almost tasteless, or rather like sweet air. I said, “Ew, Max, taste this.” He did, and made a face. We started to get rid of it, and Nat became upset.
“Nat, it’s the wrong kind!” I explained. “This other one tastes better!”
“No taste better. No wrong kind!” he shouted. He retrieved the container from the trash. “No wrong kind!” (Jumping up and down as if the pantry floor were a trampoline. This room is 9 x 6)
I had to show him that the other, heavy vanilla frosting was better. In this case, there could no argument: that stuff was such fluffy barf, that Nat would have to agree. After several animated go-rounds, Nat let it go. But after that, he was watching everything Max did, right over his shoulder. This pissed off Max, so I had to gently ask Nat to step back a little. The old kitchen where we do our cakework is really a tiny pantry (we do it there so that the birthday person won’t see and will be surprised), so to have the two Giant Sons and me in there was kind of a crowd.
I think tweaking his Luvox will help control this control-thing just a bit, but you never know.
Yesterday was Benji’s 9th birthday. It was also Laura’s. All this nachas, and yet I was very, very anxious, and then sad. I felt mostly like I did not know what to do to make it a special day for Benji, who is so particular about what he likes and doesn’t like. He just wanted to build his new Lego sets, nothing else. I tried to rent a Moonbounce, but it was too short notice.
The day picked up after Ben finished his huge Lego set, a sand crawler from Star Wars, and then Ned and I took a nap together, fingers touching. This bit of physical comfort was “like a witamin,” as my Polish grandma used to say. I woke up feeling so much better, and ready to make a cake. Below is the finished product, and the end of the day, which was a good one, strange morning mood notwithstanding.
Oh my man I love him so
He’ll never know
Oh my life is just despair
But I don’t care
When he takes me in his arms
The world is bright — Alright
–Barbara Streisand, “My Man”
It is official. My husband Ned’s startup company, Tabblo, has been acquired by Hewlett-Packard. This is amazing, wonderful, fantastic news! No, we do not have to move to Silicon Valley, Thank God (the autism services are TERRIBLE in California, shame on them). There is an HP branch in Massachusetts. Ned’s commute just doubled, unfortunately (from 15 mins to 30 or 45 sometimes). But there will (presumably) be other benefits to the acquisition.
This was an intense journey for Ned and his colleagues. Ned joined a year ago January, when there were only three guys: the CEO and two others. Over the year, they grew to nine people, with interns. They have had a great ride, with those gut-wrenching hours you hear about with start-ups, and with the incredible highs of rushing and getting a great product out the door, and being picked up by the press, all of that. There has been a wonderful camaraderie in the office, too, a real magic in how they all work together. It is a really fun office to enter; there are black and white beads over one doorway, lots of Tabblo-red walls, gorgeous Tabblos printed out and displayed everywhere, a huge penguin, a squat fridge, and happy busy people. I knew this was the job for him from the start; the CEO found Ned through his blog, not a headhunter or some other pedestrian mode! They met and hit it off immediately. That was that.
I am just so proud of Ned and his accomplishments. He has stayed true to himself, even though he has become successful in the business/high tech world. He made sure I understood what I was getting into when I married him: “I’ll never be rich, Sue,” he said. “I don’t care!” I answered. Well, it turns out I did, just a little, but that is okay, because we have a love I wouldn’t change for any amount of money. (So my credit card balance is always a little heavy, nobody’s perfect.)
When I first met him, he fascinated me with his quick wit and deep intelligence. (I also loved his blond hair and blue eyes.) He stood out from all the other guys in his quiet way. He has never been a typical male: no sports, no beer, and I am always first in his heart.
Completely his own man, who has always been centered and serene (except when the people around him are being obtuse). He is finally getting recognition he deserves. Hooray for NED!!!!
I am so thrilled; I have just choreographed my first drum solo! I chose a very short one, only 1:16 minutes! It is a lot, however, trust me! Quick action the entire time. I chose Issam’s Tablo Solo 1 from his Drum Solo CD. Here is the choreography, I’m sorry to be such a belly dance geek, but I am just so proud of myself!
1) 4 hip drop sets
2) 5 piston hips downward, jump down on 6th, spring up on 7 -8 with shoulder shimmies; quarter turn
3) 4 point locks; quarter turn
4) 5 piston hips downward, jump down on 6th, then spring up on 7-8 with shoulder shimmies; quarter turn to original position.
5) 2 shimmy slide sets with hip hit
6) Full on Egyptian shimmy for 4 beats, stop, reverse body undulation (6-7-8). Do this three times
7) 2 piston hips to 6, shoulder shimmies 7-8
8) shoulder shimmies leaning back, shoulder shimmies leaning front (I might do something different because this might be boring, maybe add just one 3/4 shimmy for accent. I just don’t know yet!)
9) 2 sets of 4 flat hip 8’s
10) 2 shimmy slide sets with hip hit
11) hip circle walk away w/ chest pop, three times
Pose at end of third.
I feel like I’m on fire! My class tonight was a complete trip! It was not my Tuesday night class; I had to take the Monday night instead because tomorrow night I’m giving a talk at Emerson College.
The Tuesday night class is for people like me, and beyond: experienced beginners and then others who are more than that, who have performed but maybe do not yet consider themselves “Professional Performers” with capital P’s.
The Monday night class is for Professional Performers. I was so over my head, but it was like swimming in a dangerous high tide: totally scary and totally fun.
It started out basically the same, with the traveling step drills (Basic Egyptian, Egyptian Nailed, Hip Clicks, Hip Drop Kick, 3/4 Shimmies, Pivots, Hip M’s, N’s and O’s). But there were also things called “Chantals,” and “Raquias.” And no instructions, just go! With zills, no less. So I went. I did what I could and copied the girls for the rest. My instructor just smiled, happy that I was trying. I felt like Barbara Streisand in the Roller Skate Rag, where she just fakes the whole routine and occasionally gets it right before bringing down all the girls! There was one point where the others were doing these turns and walking in my direction, and suddenly I was just standing there, “Uhhhh.” But it was okay. Some of it I was actually doing correctly and it felt wonderful.
Then we learned how to do flat hip 8’s layered with shimmies, extremely slowly to a Chiftatelli beat, all while turning first clockwise and then counter-clockwise. I did okay by ignoring the shimmy part. Later I was able to add a “shimmer” rather than a “shimmy.” Then she had us improvise to the Chiftatelli, with level changes. She taught us how to do the famous belly dance backbend (lift the chin to the ceiling, then lift the “girls.”) I did a few, and it was okay.
Then one classmate performed a piece she’d been working on. A beautiful Arabic-style rendition of “I Put A Spell On You.” She was mezmerizing. We critiqued her afterwards. Tough stuff, to perform for Performers and then listen to their feedback. I promised the instructor that I would do a short drum solo for my recital (May 12).
Then she did this nutty thing, where she put on some crazy Arabic music, which had no discernible melody to these Western ears, and had us do our “routines.” We wrapped up in our veils, got out our zills, and just danced. Danced to whatever the heck we felt was going on. Sometimes I had nothing. Sometimes I got an idea, and followed through. I seem to do well with torso work, like camels and figure eights, al the sinuous stuff as well as shimmies. Turning drives me nuts. But I can do it now.
I left feeling the way I used to feel in math class, like maybe, just maybe I had it. And maybe I didn’t. Only now, it is okay either way. There’s always next week!
My husband Ned Batchelder has written a blog post on the use of the word retarded when people really mean “functioning in a a disappointed manner,” or “frustrating,” or “ridiculous,” inspired by a very thoughtful letter in the Sunday Boston Globe Magazine, which turned out to be written by a friend of ours. Her son plays basketball with Nat on most Saturdays in the winter.
She was also in my first support group with me, and she gave me one of my first insights into autism. She told a story about how she and her then four-year-old son were walking down a crowded corridor in a school, where the walls were covered with art and other items. He stopped and suddenly said, “Green.”
“Green?” she asked. Green? She looked and looked, running her eyes over the myriad hangings on the walls. Colors, words, everywhere.
Suddenly she saw it, amidst the massive confusion. A tiny green dot on the wall. Green.
To me this story explained how someone with autism might focus on something very different than what I might focus on. That there is something zenlike and calming about the idea of picking out one small dot on the crowded, colorful wall, and seeing only that; it is similar to when you are dancing and you have to “spot,” in order to spin properly. You have to focus on one thing and keep your eyes coming back to that one thing as soon as your head has turned, so as not to become dizzy.
Hers was among the first stories I ever heard about autism that was positive, without being over-the-top wild like some of the savant stories we have all heard, “stupid autism tricks,” as my friend Kim would say. No one here has anything against savants, needless to say; it is the media’s use of savantism to sensationalize autism and make it seem like just one thing, a really neat circus trick.
If this were an SAT question, it would go something like this: Autism is not to circus trick as retarded is not to ridiculous.
Take it from me, one who knows how to be ridiculous.
My article, “Autism: Hope At Any Age,” was published on the Washington Post’s oped page today. You can read it here.
Let’s hear it for Early, Middle, and Late Intervention, and for giving people with developmental disabilities the support and acceptance they need to have a happy life. That means voting for leaders who will do what it takes to properly fund health and human services, and public education. That’s all, Folks.
Michele Dove, a bellydance blogger, has done it again. She is brilliant with posting great bellydance vids from YouTube. Here is Shakira’s Hips Don’t Lie Grammy performance (don’t forget to turn on your sound so you can hear Wyclef Jean’s beautiful soft voice and Shakira’s sexy full one).
Shakira is the one who started it all for me, the bellydance, and the whole idea of fulfilling old childhood dreams, if they are still there. When I first watched Shakira perform, I was filled with a deep excitement and longing that stretched back to my girlhood, when I imagined I would be a ballerina or a singer. Back when all things are possible. I didn’t consider bellydance, because it is not part of mainstream American culture except as some kind of shameful or ridiculous notion of erotic dancing. (It is not and never was, though it certainly can be sexy.) But my aunt, who was already non-mainstream because she had married an Indian man, had taken bellydance lessons when I was a kid, and though I never saw her perform, it stayed with me that she, a wife and mother, would go do this thing that was so out there, so different from what the other mothers (including mine) did.
But watching Shakira last spring, I had that feeling of, “Well, why not me? If I want to be like that, why can’t I be?” (After all, I just published a book, which had been a dream for years. I didn’t get on Oprah, another dream, but I did get on the Today show. So why not become a bellydancer? Why the hell not?)
Amazing how we simply dismiss things that we want to do and be. We just say, “Oh, I can’t.” We think we’re too old, too busy, too fat, too this, too that. But there is always a little room, somewhere, sometime in these God-given days, to do just a little more.
If you’re saying, “I can’t, no time, no money, …” Your lips are lying. You need to think again about what it would take to do this one more thing that would make you happy. And then, just do it.
Because of my depression and related issues, I attended a support group recently. This group is somewhat based on the traditional twelve-step programs. I don’t have much familiarity with the twelve-step thing, being in traditional individual therapy. But one overarching theme that has piqued my interest is the concept of the Higher Being, not necessarily God, and the idea that there are things beyond one’s control. That things happen for a reason.
I have, in the past, rejected the “things happen for a reason” mantra, particularly when people explain Nat’s autism that way. But more and more, I have found a certain degree of faith that there is some rhyme and reason to the Universe and to my life, such as realizing that because of Nat’s autism, I was forced to deal with things head-on: from how to help Nat, to mitigating my own difficulties so that I could have a real understanding of myself and be a better mother/person. So, what I have been feeling is not that God made Nat autistic for a reason, but that Nat’s autism has been a useful jumping-off point for growth in my family.
After attending my support group, however, I began thinking along more literal lines about things happening for a reason. The way it works, I believe, is that you first kind of resign yourself to the fact that you are a flawed human being, subject to errors, and that you therefore have to work hard to overcome these flaws, and at the same time have faith that you will. And with faith, comes a kind of letting go, allowing yourself to feel that calm happiness that, without any reason, tells you you’re going to be okay.
Yesterday I was talking to someone who has had experience with this way of thinking and he told me how it works for him. He said that he was having a particularly bad moment, and then the phone rang, and it was a friend who needed his help. This, he said, has happened before, and he found it quite comforting.
So I began tuning into such moments for me. Today was an extremely low day, in part because I had a glitch with the Washington Post (we straightened it out, thankfully). I was sitting at the table staring out at the black, brown, gray and white yard (all my least favorite colors), feeling cold even in a sweater, and wanting to eat Twinkies. I could not think of a thing I wanted to do, or anything I had going for me.
Then an email popped up, from a woman in my town. She was asking for help with her son’s IEP. I stared at the screen. I had a few good ideas right away. The ugly rawness of outside shrunk back. I felt my energy level rise and my cravings drop away. By the end of the email, I was buzzing with a good feeling.
I could almost hear the words in my head, “things happen for a reason.”
Some people feel that autism gives them a new perspective on life and on what is important. I have been known to say that, myself. But lately I have been feeling that it is depression that has given me a perspective on autism, and everything else!
It will probably not surprise my readers to find that I am prone to bouts of depression. This condition has been with me for a lot of my life, particularly adulthood. I do not make it a secret, because 1) I believe there is no shame in having problems like this; and 2) I hope that my openness will make it easier for others with the same issues to get help.
I was having coffee yesterday with a man who qualifies as being my oldest friend. I met him when I was in sixth grade. We teased each other and hung out together and ultimately we went to the high school prom together, as friends. I love him like a brother. He is a true ziese neshuma, a sweet soul. But I’m not sure that he always “gets” me. After reading my book and knowing me for this long, he still asks, with a face furrowed full of concern, “But how’s Nat?” And it kind of feels like he is assuming that the answer is a sad one.
These days — and for quite some time, I believe — the answer is, “Great!” But I already feel, when the question is posed the way it was, that I seem to be protesting too much (?) How can I explain to people that Nat simply is. That I have known him for seventeen years, eighteen if you consider my clueless pregnancy, and I have never known a different Nat, an Otherwise Nat, the What-If Nat. I would love to, of course. But in the same way that I would love to live a whole different life, simply because there are so many things I don’t get to do in this incarnation. When I was a little girl, I also wanted to be a boy, just to live that particular kind of life, too. So NT Nat would be a trip, I’m sure; a delight, and a pain-in-the-ass. But he is already those things.
It is not Nat, nor is it autism, that makes me pause when people offer to cut me some slack. They seem eager to do so, for his sake. My uncle practically canceled coming to Passover at my house because, “You have your hands full, with the three boys.” I had to convince him that, NO! Everything is fine! I just get really depressed sometimes, that’s all!!!!
But I think that people really believe my life is harder because of my sons, Nat in particular. Maybe it is easier for them to feel compassion about something like autism, than to find out about something like depression.
My life is harder because of depression. When I am feeling good, as I have been for the last week (you can tell by my blog posts; the more dancing and writing, the better), there is a golden cast to everything around me. Autism is a part of my landscape, just as the muddy yard and the noisy birds. Depression, on the other hand, sends cold wet clouds across everything so that I can’t be happy anywhere. Nat, (Max, and Ben), with their beauty and gentleness, are like colorful little blankets to wrap around myself, even during the darkest times.
I want this costume. I want it so badly. It is just exactly right. It is pink, it is silver, it has just the right amount of coverage, it is a flattering straight skirt, and it looks like something a Bellydance Superstar would wear (that is Petite Jamilla you see spinning her double veils, on the website. She is one of my favorites. Double veil is incredible to watch; one of those things that is mesmerizing, and looks fun and easy, but just try it…!) Or this is something someone in Cairo would wear (is there any other city name that is as exotic and sophisticated sounding as that?).
Tonight I practiced for an hour. Our “homework” from my new class was to find three drum solos, listen to them, and pick out each time the beat changes. We did this in class, and we also improvised solos as we listened. So tonight I picked out some from my old teacher, whom I miss because she was so sweet, she taught in a circle, and she was a real joyful character. I also listened to some from the Sonia and Issam DVD, which has a bonus CD of drum solos.
These Issam solos were perfect; they were only a minute and a half, which is still long when you are constantly popping, shimmying, and undulating. All while staying lifted, of course. And trying not to look like you’re in pain.
By the end of my dancing tonight I was so loose that I could actually do a really nice choo-choo shimmy with twisting hips and even a chest lift every now and then for accent. It helped to imagine my new, friendly class and my teacher, and how psyched she would be that I am this into it. I even got out my zills and tried a little of that, but, not so much. Zilling while doing all that other stuff is very hard, but I did succeed a bit last night.
The recital for this class is May 12. There will be a group dance and solos. I think I will either do a short drum solo, or my favorite, the Misirlou, with veil and maybe, just maybe, zills.
Just kind of resting now, in my pink jammies, post-dance, warm and sleepy, dreaming about future performances and waiting for my guy to come home (he’s at Guys’ Night Out). He said he’d be home in time for Jon Stewart. Always worth staying up for (both Ned and Jon Stewart).
Here is another of my best and worst lists:
1) Eating parmesan right from the wedge
2) Writing exactly what I mean to say
3) Placing an essay in a world class journal
4) Noticing that the light has changed outside — flush winter down the terlet
5) The smell of Ben’s hair when he needs a shower
6) The colors in Ned’s, Max’s, and Nat’s faces (gold, pink, and blue)
7) Finding out that Nat has a girlfriend in his class
8) Imagining Ben as a man
9) Packing for a trip
10) Writing in a sunny spot, and having something to write there!
1) Being emotionally smothered
2) Being summed up
3) When my therapy hour ends
4) When bellydance class ends
5) When my knee/hip pain flares up
6) When even makeup doesn’t make a difference
7) When I really, truly don’t feel like dancing
8) When Ned is too preoccupied with work
9) When Nat is too upset about the light to enjoy anything
10) When people don’t call back for playdates with Ben
Yesterday was a shimmering golden day. I found out that my book, Making Peace with Autism, has won the Exceptional Parent Symbol of Excellence Award! This touched me on many levels; first, because Exceptional Parent is the first magazine many special needs parents come to for help (this is what I did, way back when Nat was diagnosed). Second, because Exceptional Parent was the first place that published me, giving me my start as a writer! And third, because they wrote such a beautiful review of the book; they really “got” it. Fourth, this will absolutely help my agent sell my new book proposal, which she is going to work on this week!
I also learned that the Washington Post accepted an oped of mine, my sixth oped on that page seventh piece for the paper overall (I LOVE the WASHPO!!!! They are one of the three most respected newspapers in this country, the other two being the NY Times and the LA Times, of course. I suppose you could throw in WSJ but do I stand a chance being published with them, they are so conservative. Of course I have tried many times.). My piece is about autism and late intervention. This is a topic that is of increasing concern to me as Nat moves towards adulthood and I see the utter dearth of services, supports, choices, and funding out there for adults with developmental disabilities. Much of today’s attention and funding is going towards early intervention and detection, to the very young. How sadly ironic this is, when you consider that “developmental disability” often implies atypical development, meaning, growth can occur when you least expect it, at a far later age than a typically developing person. My Nat, for example, did not learn to read until he was 8. He did not have a real friendship until he was 15. At 17, he is going through the toddler’s “I don’t want to share” phase! These guys need Late Intervention so that they can blossom, whenever that may be and whatever kind of flower they turn into! I can see that this is going to be my crusade for the next decade: getting the powers that be to wake up to all the potential of guys like Nat, and helping them get there. As the alleged Super Power Nation, I’d like to see the United States earn that moniker, and start helping its most vulnerable citizens thrive (rather than ploughing so much money into a war that should never happened in the first place!) Give us your tired, your poor; hello? Anybody there?
The final wonderful thing about yesterday was that I started taking a class with a new bellydance teacher whose aim is to help us with technique, improvisation, and performance. There were two women in there whom I recognized from performances around Boston! I was actually dancing among performers, and (sometimes) keeping up. At one point one (young!) woman said, “You have a really beautiful shimmy. I wish I could shimmy like that.” I could have floated away out of sheer joy. I have never been told that I do anything well in BD, especially by another bellydancer! Although the class felt at times over my head, it was in that exhilarating way that the ocean can feel too deep but you still know how to get your footing and swim in the waves.
I was not surprised that there were many feelings among my readers about Nat’s conversation program. Educational approaches are always a bit controversial, and autism education approaches are even moreso. Plus it is the first time most of you have ever seen Nat in action. I understand the feelings people have expressed to me, both in private and blog comments. I even agree that there is a bit of a canned aspect to the program, an artificial feel to the conversation, which can be frustrating to watch.
But I stand by Natty’s teachers and this work that they do, because the staff there fulfill my primary requirement for educators: they understand him, and they love and accept him. They take the time to figure him out and within the parameters of their Behavioral training, they come up with programs that will provide the building blocks of a particular desirable skill.
The conversation program that I YouTubed was the very beginning of teaching Nat attending and responding skills. The content is not necessarily important, although in all the programs featured on the Nat DVD (and there several more) the teachers have picked subjects that will catch his attention (movies, family pictures, ocean). Some readers were upset by the bizarre feel of the conversation, repeated several times exactly the same way, the teacher’s tone of voice, the apparently boring aspect of the entire thing.
I believe that Nat might sometimes find schooltime to be all of these, and perhaps a little bizarre as well, but this is so far the technique that has worked best in getting Nat to understand how the world works. Incidental learning, the osmosis-style learning most of us are capable of, does not generally work with Nat. Also, he is long familiar with his school’s approaches and he by now understands that this is how he learns new things at school. All children have to accept that the school is the boss, after all. That’s how it works when you’re a kid. Benji is struggling mightily with this concept right now, as a third-grader. And Nat figures out extremely quickly what it is these NT teachers want from him and he gives it to them. He ends up enjoying some of these new skills — like working at his several (paying) jobs, reading, and playing interactive games with a peer — and other skills he does not like, such as math or using the telephone. For Nat the rewarding thing is figuring out what the expectation is and fulfilling it as soon as possible, moving on to the next thing. He is a total overachiever, classically so; a perfectionist. I don’t mean this pejoratively. I admire his follow-through and I wish I had more of it myself.
The Behavioral/Discrete Trial Training Approach is not perfect. Some may utterly hate the trained-dog aspect of it. But I think it is a good tool for giving one building blocks and steps to a skill, particularly a learner like Nat who spaces out easily and requires repetition and consistency to capture his attention and make him feel comfortable. Some things we learn are just not that easily picked up on naturally or incidentally — a good example is Benji having to use flashcards to learn his math facts — but they must be drilled for acquisition. I think that once Nat gets the hang of listening to a question and answering, he will be able to branch out and come up with his own topics and responses. He will even become more comfortable with saying, “No talking,” which is what he says when he absolutely can’t take any more. But he is too good a student to do that to his teacher.
But even more than the merits of DTT/ABA, I think that Nat is surrounded by teachers who care about him and start from where he is linguistically and help bring him to new levels. This is what education is all about.
Yesterday I participated in a Spelling Bee run by our town’s educational foundation, one of those private groups that raises funds to pilot projects at the schools, with the hopes that the school department will pick up the cost the following year. I have grown to realize that we need these kinds of groups, because they can be more creative and quick about what they start, and they cover certain needs that might otherwise be ignored because of tight budgets. Ideally, of course, we wouldn’t need this; our taxes should be enough. But they are not. And so we have these private foundations, and I see that they do a lot of good, particularly in terms of building teacher morale.
The Spelling Bee is one of my favorite town activities of the year. I am always asked to be on a team, because I am not a bad speller but mostly because I get so excited about the thing! Each team is supposed to come up with a theme and a costume. That is the part I love. So when I was on the School Committee, I spelled for the School Committee, and our team was various things over the years, such as the “S’Cool Committee,” where we dressed “cool,” with jeans, leather, sunglasses, etc. This year I spelled for my little guy’s school and we were the Lincoln Spellbinders. So one teammate made beautiful wizard hats and I brought bellydance gear and Max’s black Sith robe. Chris wore the robe and looked like a wizard; Lisa and I wore hipscarves over our jeans and matching veils and my cobra bracelets and the wizard hats. I shimmied onto the stage a tiny bit.
We did respectably, though we did not win our round, or “swarm.” The words were incredibly hard, I can’t even remember what they were. Lisa was a total spelling ringer, a doctor who is also very well read, so she had great instincts!
I love spelling, but I really only care about the costume. I was sure that we would win the costume; I’ve never won in all these years but I have always had good costumes! And this year, the superintendent (whom I hired, mind you) was the JUDGE for the costumes. So I shook my finger at him mockingly, as if to say, “you owe me!”
Well, I guess he did not think so! Because the people who won were three men dressed as Queen Bees, complete with wig and tiara. As my friend said, “Well, you guys were good, but you can’t top men in drag.”
Last night I dreamed that I had discovered a pair of windows on the third floor that had several large gaps where the sashes met, and holes in the screens, which were covered in bugs and God knows what else. I realized in terrible sinking fear that bats could have gotten in. Ned was not home, so I had to take care of it myself. I went all the way down to the basement (in my dream) and looked for the steel wool Ned uses to plug up such holes. I couldn’t find much, so I got some foam and some foil, which ran out after I’d pulled out only five sheets.
I went all the way back up to the rickety windows with all this junk in my hands to stuff the cracks, and leaned into the window on the right. A chubby black spider was sitting there. It leaped out. As it leaped, I watched in horror and then amazement as an aqua green spotted tiny tutu and wings sprung out from its body and it became kind of a fairy spider. It landed on my head and I was both horrified and calm. I felt that it would probably be okay because it was actually this beautiful thing.
And so I woke up thinking about, of all things, my bellydancing. Why? I think because I have been searching for just the right teacher, someone who is not too much of a diva, but who also knows how to make a class rich, challenging enough, but not scary challenging. At this point I have had five teachers in less than one year. I have enjoyed and benefited from them all, but still I have not yet found my home. More and more, I like using my DVDs and practicing with them. I don’t know if this is okay, but I want it to be okay. I worry about my tendency in general to withdraw from things and be by myself. I do this sometimes with friends, with groups, with committees, etc. After a while, I need to be in the comfort and safety of my own space. I am trying to honor those feelings because I don’t want to kill this wonderful hobby of mine with “shoulds.” I “should” join a class. I “should” aim for a recital. I “should not” just use DVDs. Those are the negative messages I hear sometimes.
What I need is a new DVD, and I’m waiting for them to arrive from Amazon. I am continuing to look for a class. Last night when I was dancing I realized that I could do every single step and movement in the Drum Solo DVD, so easily that I could concentrate on staying lifted and placement of my hands. The staying-lifted is extremely important, especially with someone like me (there I go again with the negative messages) who does not have the slimmest, longest midsection. Staying lifted means you pull your upper ribcage up as high as you can, separating it from your abdomen and hips.
Last night I did a lot of my movements staying lifted the entire time. That is one of my requirements for doing any sort of public performance; I will have to be able to stay like that as much as possible. Otherwise I feel grotesque. The fascinating thing to me about my doing bellydance is that I have always felt that my belly was my worst physical aspect, even as a smooth-bodied teen. I have hated my belly. So how wildly ironic for me to have alighted upon a hobby that forces me to look at it. I have to stare at it and control its movement and learn to live with it, all the while trying to perfect it and love it, this belly of mine. And slowly, it is happening. But fear and self-loathing will swallow up all the joy. I can not allow this beautiful thing I have discovered to become something ugly and fearful.
I think maybe this dream is a metaphor for the larger aspects of my life as an adult. I find myself alone with this difficulty, of fixing something scary. Ned is out of the house, but I know he will be back. Ned is with me but not always. Some things I do alone, even if they are really hard. I believe somehow that the spider is me dancing. I discovered it in a place I knew nothing about, in my own house, for all this time. It leaped out, scaring me at first with my chubby ugliness, and then fascinating me. I did not kill it, and it morphed into this fairy thing. Given the right chance, it sprouted beautiful wings and a colorful skirt. It landed on me and I was terrified at first and yet I was okay. I actually cannot believe that such a beautiful thing would come out of something so ugly, but there it is.
I know on the surface that I am not ugly, physically or otherwise, certainly not spider-ugly, and yet sometimes I feel ugly. There are some very old messages we carry around from childhood. I think that somewhere along the way I got the idea that my needs and my real self are difficult for others to take. Therapy and growth help dislodge some of these feelings, but every now and then they still jump out at me. The trick is to remember that I am the Fairy, not the Spider, or that perhaps I can live with being both, if I just stay lifted.
It is springtime in my family. Nat, my tall yellow flower, seems to be blossoming once more. He has become very enthusiastic about making his art creations, which are cray-pas on colored construction paper, cut up, and then carefully glued. They are just beautiful, magnificent mosaics of paper and soft color. His teacher recently discovered his preferred medium, and helped him articulate it by cutting up some of his drawings and getting out the glue. Now he is a cutting-and-gluing fiend!
Nat is also now a laundry maven. He forces me to do the laundry as soon as the hamper is half-full (when to me, eternal lazi-est, it is half-empty!). He says, softly but intently, staring into my eyes, holding onto my hands, “Laundry…” And he won’t quit until it gets done. So, you might say that this means in ABA-land, that I should NOT give in, since he is nagging me. Or does it mean that I should give in, to reward him for talking to me? Or does it mean I should NOT give in because I should be setting the terms of the household? Or does it mean I should give in because here is something that Nat really likes to do, that is important to him?
You see how you can really fardreit dein kopf with this stuff. I chose the last option, because I like knowing what is important to Nat and honoring that, particularly since he asked me so nicely! So, together we did a few loads. Here there is always laundry to do, dust to pick up, food to buy, toilets to clean. You vant doit and drek? Ve got.
Anyway, where was I? My tall yellow flower. Today our Home Based Therapist came to do more training and troubleshooting, basically to help me work on the IEP programs in our home. So for months we have been working on getting Nat to initiate with what he wants. The program is to walk within five feet or more of Nat, and without looking at him or cuing him, getting him to ask me for his pills. We have really gotten very far with this.
Now, at school, they have been working on ways to get Nat to converse. I love the way they have done this. They help him by knowing him so well, and they are able to encourage accurate responses from him because of this. So Jessica came today to show us how to run Nat’s conversation programs. She brought this DVD of Nat working on conversing at school. I love the way his teacher is enjoying him, and he is right there with her. See if you can pick out the utterly age appropriate thing he does during the clip!
Ned and I were at a bit of a loss as to what Max’s birthday cake should be. We had done many Myst-related or Uru cakes already, which came out great, (look in my blog index to see them, too many to link to). It is hard to capture the interest of a very cool now 15-year-old.
But — the other day I was talking to Max about where he would want to go if he had his choice of places. And this conversation was actually leading up to a real possibility because Ned and I have found a sleepaway camp that we are going to send Nat to! So Nat will be away from home for a week, for the first time ever, doing all kinds of amazing activities, mostly extreme sports. And it is only kids on the autism spectrum!!! I am so psyched for him, and for us, to have this opportunity to try separate vacations (just the four of us, without Nat).
So — what to do? Go to the Rockies? Europe? Japan? I looked into all of these things. But Max said he wants to see ruins. He loves ruins.
So I told Ned that Max loves ruins, and right away Ned sent me a link to something called, “CakeHenge.” Devil dogs cut up and lined up like the stones in England. I said, “We so have to make that. And do it better.” He agreed.
Last night Nat, Ben and I baked and Ned came home with a bag of buildable candy (Three Musketeers, Twix, and the inevitable Hershey). Ben and Ned mixed up some grassy green, or thereabouts (so hard to get intense colors with the pastels of frosting), and I worked on a rock color. I frosted the candy bits with my fingers; so much more control than a frosting knife, and it allows you to give the surface a rock-like texture. And — sigh — an opportunity to lick frosting off the fingers.
The cake turned out magnificent. Ned had the brilliant idea of shining a flashlight to simulate the StoneHenge sunrise, and I had the idea of getting a Lego druid, which Ben put together. Nat came in and obliged us by “cleaning out” the frosting bowls. A true family effort. And Max, of course, was delighted with his CakeHenge.