Susan Senator

Here, by the grace of God and an inside straight, we have a personality untouched by the psychotic taboos of our tribe — and you want to turn him into a carbon copy of every fourth-rate conformist in this frightened land!
–Robert Heinlein, 1961

Oy, go and have children.
–My Great-Grandmother, “Bubbe,” Sarel Wolfson

Little B is on his playdate with A!! I have been nervous for the last hour, just hoping it works out. I know I should relax, and get a life. I just want him to have a friend or two, I don’t want him to have a hard life, to be lonely or sad. I just hate it when he asks me to get him a playdate and I just know the preferred child is going to be unavailable. But as I’ve said, it will do no good to force B to be in PALS (the singing/acting group at our school that sucks up all the little kids on Mondays and Thursdays until they are old enough to chafe under the strictness of the hours and the director). It is no use suggesting T-ball or soccer or anything remotely resembling a sport. But it is my job to make sure he has enough social skills to get through life okay, and since he cares about having friends, I use that as my way in.

I coached him a little about the upcoming playdate with A yesterday: “Now Beastie, you know that when you’re with A, you should probably try not to joke about anything that’s about him; that doesn’t go over too well with him, right? He’s kind of sensitive.”

“Right.” In a robotic voice. He goes back to his pad. “Hey, Ma, you know I think the lava guy should have crystal shards in him. I think they all should.”

WTF?? “Yeah, probably.”

It is so hard to know what is on his mind, because he hates to talk about feelings. He hates to talk about anything that he did not think to talk about. Simple conversation, with a give-and-take, is just not his cup of tea. He is not comfortable in the realm of emotion, either, except anger and happiness. His therapist has helped him with this considerably, however, and I think that development will take care of some of it, too.

Natural development is totally underrated these days. Everyone wants to get in there and force progress out of their kids, ASD or NT. They have to learn tennis before first grade, so they don’t pick up any bad habits. They have to do piano by age six, or it’s too late. Math facts memorized by age eight. And don’t forget Early Intervention and the Marvels of the Elasto-Brain of the Five and Under Child! Therapy, therapy, and more therapy! Toilet train by two. 80 hours of ABA a week when they’re 9 months old, that will make ’em snap out of it! Uh, Oh, we only did 79 hours with Nat! Oh, that’s why!

(Okay, okay, I’m just joking!!! Sorry!!!)

Some of my critics call me old-fashioned because I champion acceptance of our kids’ quirks (Hello, Making Peace With Autism) rather than forcing them into the narrow round holes of Mainstream USA. But listen, I really do understand the impulse to push, push, push! I, too, tried a bunch of things with Natty when he and I were younger, (dietary change; Floortime; we had him tested for Celiac’s disease and gluten/casein intolerance; we were on a waiting list for that pig hormone everyone went ga-ga over in the 90’s, but then Nat was determined not a good case for it. (I don’t know why, I think because he has never shown any G.I. problems, he’s as regular as a clock); sensory integration; and of course, ABA ad nauseum.)and mark my words, the trends come and go. Sometimes I get close to trying one thing or another but then I start to get skeptical again and to feel like it all sounds like it could be anything that causes the positive changes cited. This is what happened to us over the years with all the well-vaunted approaches we tried.

But most parents get a feel for what works for their kid over time, and it can be any of the above or more that works. It could also be a better attitude on the part of the parents and teachers that help the child do better!

And guess what worked best for Nat? Getting him into sports! How’s that for irony? I always say, “At least I have ONE NORMAL BOY!”

Progress is what you decide it should be. I think Nat is whizzing ahead in lightyears these days. Yesterday I was scolding Ben for wearing the same pants for two weeks (yes, that is what I said), and he protested my demand that he change. Nat whips around and looks at Ben’s annoyed face, and a big grin appears on Nat’s face. He starts rocking and smiling and then laughing a little. I said, “Natty, are you laughing at Ben?”

The smile got even broader. Oh my God! Ned and I looked at each other. Whoa, Nat! It was definitely a case of Nat being a nasty older brother, glad to see his sibling (with whom he has a difficult relationship) a little unhappy. Thank goodness Ben didn’t see! I guess that is progress, too, that they didn’t end up fighting. He just sighed and went upstairs and changed his pants.

Mean Nat! Resigned Benji! Now I’ve seen everything! But to me, here in Bizarro Land, that is real progress.

While cleaning up the breakfast dishes, I heard Max and Ben shrieking with laughter. I asked them what was so funny, and they showed me. We have nothing against cats, Katz, or catz, mind you! But somehow, they provide excellent humor fodder. See what you think.

When Max was Ben’s age, I had the same worries, about who would be his friends. This was not because of anything intrinsically wrong with Max’s personality; it was because Max did very few of the typical afterschool activities. We pretty much pleaded with/forced him to play soccer for several years, and he was so blase about it that he became the only kid who would walk across the field towards the ball.

As boys get to be ‘tweens and then teens, it appears to me that most of them veer off into sports of some kind. If not a formal team, they seem to want to be moving quickly, outside, with some kind of ball. I remember watching as, one by one, Max’s friends became less and less available to him. It broke my heart for him and it also angered me, that everyone seemed so unoriginal, that sports was the only thing they seemed to want to do and it was the main thing parents encouraged them to do. Parents did not encourage them to work on their art, or anything else.

The same thing is happening with Ben’s friends now. More and more of them want to play sports. It is very difficult finding him a playdate, and I worry about him finding friends. But maybe it will be the same for him as it was for Max: eventually they find kids whom maybe they didn’t notice before. Kids who seem a bit quirky, or geeky. Max found a boy who was into Flash animation, and that started him on his whole technology hobby. Max eventually identified with this kind of kid, the nerd. Now he has a very nice group of boys he is friends with at the high school, who are into Star Wars, computers, the Matrix movies, and Manga.

That might be in the cards for Ben, too. I look around and notice the boys who don’t do sports, who often go home with their moms instead of riding with their scooters or bikes with the other kids. There is one in particular whom I think is a real sweetheart, but for the longest time he has not wanted to play with Ben because in the fall Ben punched him. Yes, punched him. It was terrible. Ben had become really frustrated with this boy, who was kidding around and kind of teasing him, and before he knew it, he punched him in the stomach. This boy has been really unnerved about the idea of playing with Ben since then, although they often do team up in school projects. I have been talking with the parents about what to do, but they don’t want to insist. I can’t blame them, but I really feel for my little B. He made a bad mistake, but he is so sorry about it by now.

Anyway, B told me today that this boy said he wanted to play tomorrow! I was so happy I nearly cried right there, but of course I didn’t. I felt so proud of Ben, working hard to resolve things. Social life does not always come easily to him, that’s for sure: he is very strong-willed, impulsive, oversensitive, and can sometimes be mean. But he is also brilliantly creative, funny, and talented. It’s a good thing his positives are so strong.

Sometimes I think: If Ben could only survive childhood; and If Nat could only survive adulthood. And If Max can survive all of us.

The Boston Globe ran my essay on autism and choice today.

This year we had our Passover seder towards the very end of the holiday, because that was how we could manage to get everyone in one place at one time! I invited my Aunt Georgia and Uncle Gerard (Mom’s younger brother, you can really see the family resemblance), with my cousin Jessica and her toddler twins, Emily and Nick, who were the special ingredient that made the holiday that much more tasty. We had 16 people in my dining room! Whew! But what is a family holiday dinner if you’re not all crammed in? Dayenu!

Oprah covered autism today, as she said, her “first time ever doing a show on this subject.”
Hmm, where has Ms. Winfrey been all this time? Didn’t she get the memo?

1) If every twenty minutes a child is diagnosed with autism, is it time that we adjust our definition of “normal?”

2) Why is it, when people speak on talk shows about autism, the emphasis always is on what the parents have had to give up, instead of what they have gained? As if we were all promised one particular kind of life. I understand that everyone has the right to feel bad, and complain, and grieve for the life they are not getting. God knows I do it often enough, no argument there. But it is also possible, over time, to move one’s focus, and reflect, instead, on how autism is the road given, and that there are no guarantees in this life. (See this Sunday’s April 8 Boston Globe Magazine for more of my thoughts on this point.) And that this particular road is rife with potential, happiness, and growth.

3) I wish I had never said to little Ben, five years ago, that Nat’s “brain is broken,” in order to explain autism. I heard it on television just now. “His brain is messed up,” said only sibling about his autistic brother. Why is there so little thought given to “different wiring,” and acceptance? Is it that our society is so hellbent on everyone fitting in and being perfect? Every kid is gifted, every kid is high-functioning, every family is trying to keep up with the Joneses, and so when something overtly different comes along, it feels like lives are coming to an end. I really believe there is too much emphasis on everyone being the same. If you are a boy and you don’t play sports, you’re a nerd. If you’re a girl and you don’t like pink, you’re a tomboy. If you’re a boy and you do like pink, you’re gay. Everyone is so quick to sum up and dismiss. Autism and quirkiness become just another way to sum up and dismiss: “Lost Cause.” “Weird kid.” “In his own world.” “Tragedy.”

4) The “Can you just…” part of the show was excellent. Parents talking about how others judge them for their kids’ behavior. Why are we all so f***ing judgmental of each other? I actually loved hearing Alison Tepper Singer advise the public to say simply, “Do you need help?” Rather than scorn and scowl at us. Difference is so hard for us to see and tolerate. But you know what? Tolerating difference is supposed to be the American way, although certainly every single different group (immigrants, blacks, women) has had to fight for their rights. So now it is the auties’ turn!!! So get with it, America!

5) What is amazing to me is that sooooooo many families are getting home therapies and supports, across the country! Things have improved in that regard since Natty was little and there were few providers anywhere. With the exception of what the May Center provided when he was 5, I had to make it all up, hire college girls and train them the way I saw fit!

6) Early Intervention again! Quit hocking me with the Early Intervention! Just do this early enough and your kid will be mainstreamed! Oh Joy! The Mainstream Classroom is the new Promised Land. But then you go neurotic trying to intervene enough and correctly. And if your kid does not get mainstreamed, did you fail? Did he? How does one interpret success and failure here? Nat is living proof that you don’t need to worry so much about a kid not getting help “in time.”

7) I like the way the show ended with every single parent talking about the gifts their autistic children have given them! “He has made me more spiritual,” “He has made me look outside of myself,” “He takes people just as they are.” “He has given me someone to love way beyond what I ever thought possible.” Amen.

8) I watched the show with Nat — ironic, eh? — and wondered what he thought of it. I said “Do you know what autism is?” He said, “Yes.” I told him he had autism, and that that was fine. And later, at one point I said that I love him, I smiled at him, and said, “It’s not bad like that, Nat.” He smiled back at me.

I give her a B. I think she tried to emphasize hope and good efforts, she tried to steer clear of the cause controversies, and she did not go for too much melodrama. The B is because she had no examples of older kids and no autistic people as guests. Not sure what Nat thought, but he is still sitting in there looking happy.

The sun just came out, first time in days. It has been a typical cold New England spring. Everything greens up and grows in spite of the raw wet weather, or maybe because of it. But I tend to shrivel up a bit. If I were a flower I would be a deep pink Oriental poppy, that needs full, hot open field sun of late June, and is just a little bit dangerous if used the wrong way (heroin is made from it), and is a bit exotic. Parts of it are ugly and strange, like its spiny, spiky leaves. I would never be a bulb that flourishes in the cold and must stand there shivering in the wan March/April sunshine, nothing but hardened grass or mud around your feet.

An important thought came to me during this very indoorsy, introspective period I’m going through. I was interviewed yesterday by a very bright and empathic young man from the Seattle-Post Intelligencer. We talked a bit about the organization Autism Speaks. I realized, in expressing my thoughts on Nat and autism, that actually there were some commonalities between that large organization and me. We start from the same point, I believe, which is that we love our children and desire to help them. I think it is admirable that Autism Speaks seeks to improve the lives of people with autism and their families. I, too, do everything I can to improve my sons’ skills and their strong points, so that they may lead full adult lives. Nat needs more help than Max and Ben so far, in that he has problems communicating the way most people around him do. Even if he does have his own language, to refer respectfully to Amanda Baggs et al., he still needs to learn our language, the speech of the NT (Neurotypical) world. The NT world holds the power for now and a lot of his success will depend on his ability to connect to and access the NT world. You go to a foreign country, you do better if you speak the language and follow the customs. Sure, you can hope that others will know your language and tolerate what you do, but you can’t depend on that.

Autism Speaks, however, diverges from my interests when they talk about the end goal being to eradicate autism. I do not see that as the end goal. I believe instead that the goal should be bolstering the skills and abilities and supports of people with autism, while at the same time, seeking to shift the view of the rest of the world to a more tolerant, accommodating one. The goal can’t be to wipe out autism because that assumes that autism is an evil thing, a scourge. Many people with autism who express themselves do not feel that they can easily separate their autism from who they are. So how does it feel for them to hear autism described as such? That is what gives me the most pause. What is personality? What is personality with disability? Where is the line? Shouldn’t we all be concerned about how hatred of autism feels to those with autism?

I wish that the people in that organization would consider this. Because I think they mean to do great things, and have the muscle to do so, but they cannot forget an important part of their equation: the autistic people themselves, and how do they feel about autism.

Nor am I saying that I love autism, however. I love Nat. Autism is a part of who Nat is, and I have to figure out how much of that I accept and what parts I try to help him change. Any parent tries to do this with any child, whatever their issues, diagnosed or not. I see how Nat’s wiring hinders him from doing things he would like to do, express himself in a way that we can understand him. (And our wiring hinders us from understanding him better!) But as I have said above, the mainstream world requires certain skills for independence and a full life, and I want that for Nat, so I want to do what I can to give him those skills. NOT, however, at the expense of his self-esteem.

Nat has shown a remarkable ability to adapt to the NT way of life. And I think that this makes him more comfortable, and proud of himself, to have things go smoothly. So I guess he is the more flexible one of the five of us because he has had to learn our ways and we have hardly scratched the surface of his.

Just today he did his entire morning program, completely unprompted. Out of necessity, because his bus was here and we were oblivious to it! We were all eating. Finally he said, “YES! You need your pills!!!” So I jumped up and congratulated him for telling me just like that!!!! And then he said, “Get ready, your bus is here. Bye Daddy!” He did it ALL!!! (Except then he went out the door without his coat. But that could be because my Natty, my tall yellow sonflower, is perpetually hoping for warm sunny weather, too.)

All she wants to do is dance.
—Don Henley, who is a bit of a turkey, but who nevertheless does have a lovely, satiny voice and some great songs to his credit.

It’s a total slump. Well, not total, or I wouldn’t be writing this. I am in writer’s limbo again, waiting to hear from my editor about the proposal for the Fun book, and waiting to hear from some people at Special Olympics about a potential project.

WARNING: POLITICAL (LOCAL) POLEMIC FOLLOWS, for no apparent reason:

In my tired and blurry state of mind I have ignored my column in the local paper because I cannot rouse myself from this funk to address all the issues that need a hue and a cry. The budget is going to hell; the town is raising all kinds of fees and such to pay for its services, and somehow it takes some kind of Committee to make happen what should be obvious: we need to raise taxes beyond the annual 2.5 percent the State allows us. And for that the citizens need to vote to override the current statute. To get an override on the ballot, the Selectmen have to be convinced there is a need and for reasons only known to the few who cherish the minutiae of local politics, that board is not yet convinced. They have convened a Committee, as I’ve said, of “neutral” citizens to “look into” the Override.

I find it really ironic that in politics, if you care too much, you are often considered a kook, or marginalized. I went into local politics with one burning issue on my mind, and that was how my town ran its Special Education program. I was told over and over again that I could not be a One Issue Candidate, (gasp) and that I had to care about many things. Of course I cared about many things; it’s just that the real need was attention to SPED.

I found, over the years, that I had to find ways to suppress my passion for Special Education to gain Credibility with the rest of the School Committee. Meaning, I couldn’t care as much, or at least, I was not to act as if I cared. The more effective politicians on the Board or anywhere else for that matter, I would wager, don’t care deep down about most issues.

I know I sound cynical, and I suppose I am a bit. This was my experience, five years in local government. I had to “broaden” my interests, learn about how all the programs intersect, before I could be listened to for my views on Special Education. Those who had no such anger with the system had a much easier time than I on the Board. I spent so many years enthralled with the power base in my town, trying to become a part of it and influence things. Only to find that one person can only do so much without being in the inner circle of power. By the time I was close to the inner circle I was burned out and going on book tour.

Bottom line is, our School Committee does not want to advocate for more money. They are far too political for their own good. They want to do things “the way they’ve always been done,” and not make waves. They want to wait and go with the system. But what’s happening is that services and supports are being cut – for regular education and Special Education – and it is all of our kids who will suffer from their meekness. Because if the School Committee do not make their case, some of the Selectmen do not believe that there is a need for an Override. And then there won’t be money for FY’09.

AND NOW, BACK TO OUR SHOW…

Why am I thinking about all this now? Because I can’t get angry enough to write a column. I feel tapped out. I go to almost no meetings. I have not been hanging around with my political friends. I am tired, tired, tired. Tired of the stuff I’ve been so involved in for so long. Because my interests are shifting. Because I am changing.

I’ve been turning inward, to find and work on spiritual, physical, and active beauty. I’ve been losing weight, shopping for the house, and dancing. I have been peacock-feathering my nest: buying furniture and accessories, the things I have been putting off for a few years while our budget was leaner. Today I bought some gorgeous sage green silk pillows and a periwinkle throw. New white slipcover, new bronze lamp and heavy pearl silk curtain from RH. Ned bought me a huge bowl of popsicle colored hyacinths, that smell the way they look: sugary and cool. The living room is so beautiful I keep wandering in there and just looking around, drinking in the rich color and soothing whites.

The only other thing I want to do is dance. It makes me feel more than alive, it makes me feel on fire. Some days I dance in the morning and then again at night. In the morning I drill to my Arabic hip hop, all the leg work: hip clicks, hip hits, Egyptian walk, maya walk, twisting raquias, drop-kick. (This I call an Israelites’ best revenge, a la Passover: do Egyptian belly dance with a passion, to celebrate our freedom from being enslaved by the Pharoah!) And then at night, put on a costume and dance more improvisationally for Ned upstairs. (Just rattling off the names of the moves makes me feel happy, and the dance-lust quickly rises to try something.) Every night before going to bed I pull up my camisole top to see my belly and I practice a little more in front of the cheval glass. Ned invariably catches me at it and says, “Ooh! A belly dancer! Cool.” Later in bed, I rest in the crook of his arm and he says, “I think it’s really cool that you belly dance.”

I did a session of belly dance with Nat. I tried to teach him some of the most basic moves, like knee shimmies and stretches with arms. Funny how the male body has a much harder time articulating these sinuous, curvy moves. Nat tried really hard, but could not do much of it. He still loves to watch, however. He grins from ear to ear. It’s hard to feel like he is not laughing at me! That’s because I still sometimes feel a tiny bit silly and indecorous doing it. Then I get over it.

It is so different working out at the gym from being in my belly dance class. At the gym, the focus is so much on perfection, driving yourself, punishing your body into shape. So many women, even if they look kind of like magazine women, feel that they don’t look good. Even the surgically altered, spa-enhanced ones. They invariably cover up in baggy tee shirts and work out jut to get through it. Even in my belly dance class at my gym, the women joke about how they don’t want to see themselves because they don’t look like the ultra thin and young instructor. They look at me in my bra top, belly showing, pierced navel and all, and they stare. I probably am easy to dismiss as a “Midlife crisis type.” Sure, I’ve been through one of those. But there is so much more than that. I look at them and I want to ask, “How can you believe you are ugly? Who says how a belly – or a woman – is supposed to look?”

In my belly dance class it is as if they are all from a blissfully different planet. There was a very heavy woman once, and all anyone could talk about was how riveting her performance was, and how great the shimmies looked on her body. It was true! That doesn’t mean that the slim ones don’t look great, they do! I just feel very comfortable in there showing my voluptuous gut and falling on my face. It means I am immersed in that culture and I am relearning things, from body image to body movements. I’ve been practicing with a dowel or a book on my head to keep my upper body “quiet
.” It has done wonders for my bearing. I feel more elongated in the middle, more in control of top and bottom halves.

I guess it is not a total slump I’m in, because I am happy, in a very quiet way. I have never been in better shape, and I have never felt more beautiful, and never more surrounded by — steeped in — female beauty. It is interesting to me that I began this journey of self-expression and exploration by venturing out of the house and into politics, which led me to become an acitivist and writer, which then led me to explore even notions of body image. Which brought me to dancing, the ultimate in self-expression.

She walks in beauty, like the night.
–Lord Byron

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?
–Courage!
(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.

Now here is something else for you to read and think about, this amazing speech written by a high school senior (thanks to our friend Bob Congdon).

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.