Susan's Blog

Thursday, December 7, 2006

Danse Noir Ce Soir

Tabblo: Danse Noir Ce Soir

B., Centered

I just got back from coffee with a friend, a mom at my kid’s school. B. is a kind and generous person. She is very centered and knows what she’s about, which is what draws me to her, because I crave people like that, not being one myself. (She threw me a book reading/party last year which was just beautiful; just the right kind of hors d’oeuvres and flowers, etc. Warm and fun, too.)

B. lives in my neighborhood, and has one of the most magnificent houses I have ever seen. Hers makes my house look like the carriage house! It is a mansion originally built for Storrow, as in Storrow Drive, in Boston. The grounds were designed by Frederick Law Olmsted. of Central Park design fame. My friend has restored many aspects of the home to its original style, with coordinating layers of William Morris wallpaper, dark woodwork, sliding pocket doors, and kitchen with vaulted, coffered ceiling.

We got to talking about what we are up to these days — our boys are not really seeing each other anymore, they run in different circles and classes these days; the third grade set is a really good group of kids with very diverse interests — so we had a lot of catching up to do. B. is kind of a kindred spirit in that she is the first of the moms at my school who got a henna tattoo on her upper arm, which meant “wild woman” in Japanese. It was brown and the Kanji was very beautiful. It kind of set me free, seeing that. I joked to her then, “Oh, maybe I’ll go get a navel piercing, ha ha ha.”
She said, “Sure, why not? But do you really think you can lift up your shirt among all those teenagers at the mall to get it?”
It took me months, but I finally did have the courage to do that. But that was after going through some really bad emotional turmoil this summer, and finally realizing that the only way out of the turmoil was to get through it — and to find a new way of focusing my energy. That is why I plunged into belly dance. Belly dance was my ticket out of suffering over a very terrible thing that happened to me. It was the only thing that could help me not only forget, but to affirm myself, the good and happy side of me. Belly dance was/is something I could do by myself, rather than something I had to rely on others for. There was no possibility of being let down with belly dance because I was in charge of it, I was doing it myself, for myself.

So three weeks ago I went and got the piercing, after researching all aspects of it, from safety to germs to pain to healing. I found a place I was comfortable going to. I asked the young man, “Am I the oldest person who has come in for this?” And he said, “Well, you’re not the youngest person I’ve had come in!” Love at first sight.

After it was done — not much pain, only pressure, which he warned me about — I felt I had done something momentous. For me, it was like a physical reminder of what was important: being centered. This bit of jewelry is right in my center, my core, and I can always feel it, the Mark of the Goddess. It tells me that I am a good person and that I know how to care for and nurture myself. I have to stay focused and remind myself of the good in life, which I can get from something within, something I do, and not necessarily from others.

I showed my friend the piercing and she was so happy for me. She knew exactly what this meant to me. She then offered to host my first “coming out” party, where I would dance publicly for our friends in her wonderful home. “Oh, we’ll have Middle Eastern food, that kind of thing.” My heart leapt with joy. I could really see doing it, and B. was going to make it possible, in such a classy and warm way.

Now I just have to get to a point where I feel completely confident of my dancing — and body. That is going to take more than a little bit of navel jewelry!

Too Much Joy

Sometimes I escape my life into another world. Sometimes it is out of pain, other times, the escape is out of joy. Then, other times I love to connect my worlds together, so that it is all contained right there, in my arms. Imagine me, standing in the belly dancer’s embrace pose, arms crossed in front of me, then pulling apart wide from the elbows, then circling back, crossed again. Opening up to different worlds, pulling them in towards me, letting them go, opening up to them again.

Last night I gave my belly dance teacher my book. She is writing a memoir, too, so I felt yet another bond with her. I was shy about doing it. It’s funny; I did not give out any books as gifts last year. I was embarrassed to do so. I only gave books to close friends and family who asked for them. Otherwise I felt like it was kind of pushing myself on people.

But last night I felt moved to do this for the first time. It seemed to me that I could make Melinda understand what I was doing; that this was not at attempt at self-promotion, or to steal attention in her class and be the teacher’s pet. This was about quietly reaching out to a kindred spirit and giving her something that I think will move her.

She was great about it. She stood there stroking the cover and asking about the design. Then she told the whole class that we had a “published author” with us. It was very sweet, very warm, all of us talking about personal things for that few minutes before we began. Me mentioning Natty. I love talking about him. “My boy is 17,” I said proudly. “I’m glad people are finally paying attention to autism. It’s been a long time.”

Then we disbanded our cluster and formed out circle, hip scarves jingling, and got into position (arms stretched out, parallel to the floor, elbows soft, fingers up with middle and thumb almost touching, as if a tiny rubber band were pulling them together. The hands are very important; you can’t let them be splayed or limp or sloppy. Pelvis tucked, back straight, chest out, knees bent).

We practiced turning, spotting, all the things I did in ballet. It is so similar to ballet, it is amazing to me! I never realized it. The same straight posture and attention to placement of hands and arms. But there is a warmth and sexiness to belly dance, a sassy attitude, where you pop your hip up and drop it down, roll your shoulders, or you look over your shoulder quickly and then look away (Melinda calls this move: “I want you, you can’t have me.”) Also, you don’t get jingly coins or sequins too often in ballet, but I guess you do get all that lovely tulle, satin shoes, ribbons, and feathers. Sigh.

I sometimes just want to be lost in that music and the chiffon. It reminds me of when I was in my thirties and made all those turn-of-the-century clothes, and how I wanted so badly to be able to live back then, that I wrote books about living back then. I just had such a profound need to escape.

And that is what motivates me now, I suppose. As much as I am thrilled about my life here on earth, with my best friend/man-of-my-dreams husband, my new book idea, my strapping sons, etc., I am just as much in need of completely escaping it all. Is it because it is too much joy, the expression I made up for Nat when he was a baby, and would smile and look away or cover his little face when we smiled at him? Back then, I felt he was expressing to me that there was just “too much joy” in my gaze and in how it made him feel. Here was the song I made up about it, when I was 27, a new mother:

Baby Delight,
You give me baby delight
Oh, when you smile at me and cover your face
It’s baby delight.

Baby Delight,
So full of baby delight
He loves to stand
He’s Miniman
He’s Baby Delight

Baby Delight
He’s little Baby Delight
He drools and drools
he could fell ten pools
It’s baby delight.

Baby Delight,
You give me Baby Delight
Oh, when you smile at me and cover your face
It’s baby delight.

I knew but I didn’t know. Sometimes it’s still all too much.

Wednesday, December 6, 2006

The Autism Manifesto part I

There is power in numbers.

I am now part of a large group of parents whose kids are on the autism spectrum in my town and this is one group to be reckoned with. I dreamed of such a group fourteen years ago, when Nat was just diagnosed at three, but back then the parents were either so disenfranchised and therefore happy to be out-of-district, or they were afraid to be at odds with the administration, so not much happened. Plus, the administration was playing “catch-up,” whereby they needed to regroup from the new numbers of ASD kids suddenly in the system, and they needed to figure out what had to be done.

Well, they’ve had plenty of time, I would say…

Now there are so many more families aware of autism and dealing with it. These are savvy moms. And they are well-educated about what their children need, and they are not going to put up with band-aid approaches to autism education. They are primarily interested in quality inclusion of their children in their neighborhoods schools, all the way through high school. They are serious about needing each school to be accountable to each child, which is tough in this era of school-based management, when most of the time the SPED director is in Town Hall somewhere, and not at the schools either physically or metaphorically.

This group is going to make some waves. I am determined that there will be positive changes in our town vis a vis autism education. I am the old lady of the group, too: they are all younger and more energetic, which is great.

I am telling you all this to exhort you to follow this example, if you have not already done so: organize the other ASD parents in your town or school district.

1) Host a meeting and get to know who they are.
2) Put up signs at every school.
3) Start a yahoogroup so that there is a safe way in to discusss your town’s issues.
4) Meet with the administrators and forge a collaborative, but not co-opted, relationship.
5) Attend School Committee meetings and make courteous but meaningful comments during Public Comment, so that your School Committee and Superintendent hear about ASD and see that this is a large group that means business.
6) If all else fails, go to your local newspaper, write op eds and letters to the editor, and get them to report on ASD issues.

Autism is of huge public interest in terms of expense and population. The more the people of this world know about us and our kids, the more hope we have of 1) understanding of our children and rachmunis (compassion, understanding) for them; 2)a better education for our children; and 3) a better life for our children.

Remember: if the world is mostly neurotypical, then the world by definition has the social skills to accommodate our atypical kids. It is therefore the world that needs to be flexible and can be. But we have to continue to push and explain, gently, but consistently.

Tuesday, December 5, 2006

Raqs Beledi

Raqs beledi
la danse orientale
belly dance

Any way you say it it is magical, romantic, mystical. Foreign. Ancient. Alive with the power of women. You dance together, you dance alone. Either way, you give yourself up to something very old and powerful. You can’t do it wrong, and yet, it is extremely difficult to do it right. You stand completely still, and break a sweat with your effort.

I’ve got to do it soon and expel the demons. Burn away grief so that it becomes beauty. Tie on the sea green scarf, the heaviest one, with all the silver sewn onto it. Over the blood red skirt. The red top I made, too. Green sparkly earrings, down to my neck.

This morning I did the belly roll perfectly. My skin rippled, one muscle after another, like I had swallowed something alive. It went down my belly, dipping into the navel, now stamped by the Goddess with a silver jeweled ball. My belly is not pretty, but it is strong.

And if I bend my knees just right and push from the waist, push out one hip, bring it back, then the other, bring it back —
I get a perfect Eight. It looks like Infinity. I could dance forever. I wish I could dance forever.

Springtime in the Winter

Good things can happen to good people.

There’s been a softening within The Beast lately. For months now, I have been feeling a greater connection with him. His therapist told us the same thing. He will be stopping therapy soon, because he has had such terrific growth. Oh, sure, he still talks and writes about bad guys like the Voguons being killed (by Max and Andy, super twins, dying in horrible ways). He still is quick to anger, and once angry, feels the need to crush everything in his path.

But, the other day, he explained Nat’s autism to his therapist, in kind of an offhand way, “Oh, it means that his brain grows differently.” And he didn’t add (as he used to): “Isn’t that stupid?!” And on Saturday, he wandered into the playroom, where Nat and I were playing Pajama Sam on the computer, he sat down and started to help. I left, and Ben stayed next to Nat, hand on mouse, for an entire hour! Finally he came and found me and said, “Mom, can you go in now? I’ve been helping Nat for so long!”

I could have seized him and mauled him with kisses, but he is a Little Wild Beastie and that is not recommended. (I think I did it anyway.)

So here we have, under one roof: Nat enjoying a computer game for an hour, solving problems and feeling engaged, rather than just wanting to lie on the couch, when he had seemed to have lost interest in those for nearly a year; and Benji playing with him and being kind, and feeling the nascent tender seedlings of empathy and compassion unfurl within.

Monday, December 4, 2006

Starry Eyed

I must take a break from The Book. ‘Tis going well, but I get bleary doing all that thinking and research. It’s like chewing gum: at first it is heavenly, crushing the sweet thin shell in your teeth and first connecting your tongue with the soft inside part. Then you chew and you chew evenly, passing the wad of gum from one side of your mouth to the other, fully experiencing its flavor while your saliva runs. You feel as if you could chew it forever.

Then suddenly, you’re not sure when, the chewing becomes laborious. Your jaw aches a little. Maybe your head hurts. The little wad is harder, colder, and not as sweet. You keep working at it, out of habit. Eventually, abruptly, you make the decision to spit it out, provided you have the proper receptacle on hand (an old receipt in my pocketbook will do nicely).

So now I am spitting out The Book for a little while, until I get a fresh burst, which will be tomorrow, probably. And I have turned to my blog to relax.

What do I want to talk about tonight? Astrology. No, I do not believe I am a flake, but I’ll bet all you Tauruses think so now! I just find the general characteristics interesting and somehow alarmingly true. It is fun to see who is what, and read up on it, who is well-matched with whom, and why. Earth sign, Air sign, Water sign, Fire sign, all that.

I’m a Libra (of course) and Ned is a Gemini (not at all obvious, except that he is a twin!). The way I explain Ned being the sign he is, is by figuring that he and Sarai, his sister, split the characteristics of the Gemini, or they trade off at times! Anyway, Gemini and Libra are supposed to be a fantastic match, and — voila! C’est vrai.

There have been some very important Tauruses in my life. My Grandma, and her son, (my Dad), for starters. They stick to the facts in life; they don’t like generalizations; they keep count of things; they are extremely loyal and passionate. I have also had a couple of Tauruses in my life who nearly drove me crazy with their passion for me! But if I can get them under control, I end up with a friend for life. They do have a temper, though.

Mom is a Leo. They are very charismatic and demand the spotlight. But married to a Taurus gives her a challenge to get all that. He keeps her grounded, I think. But she’s got to get that attention, and she always finds away. She even has a mane of hair like a lion. I get along great with Leos. One of them pursued me and made me feel like a star. They have a temper, but it is less focused than the Taurus, burns quickly.

Laura is an Aries and so is Benj. They are excellent leaders and independent thinkers, and very bright. They can be bossy. They are a very good foil for Libras, almost complete opposites. I’ve had some Aries boyfriends in my time, a bit too analytical, I kind of just wanted them to shut up and kiss me already!

Max is a Pisces, and so was my best friend from junior high and high school. I think of Pisceans as people who make very good friends. I have heard it said that they can’t commit to much, however. That hasn’t been my experience with them. They tend to accommodate a lot.

Nat is a Scorpio. They are known to be highly charismatic, creative, and charming — seductive, I suppose. Nat certainly attracts a lot of people to him. In our family, this is known as “The Cult.” There have always been people who were in “The Cult;” meaning, they really got Nat, and were totally into him.

My book is a Virgo, born August 30, 2005. What does that mean?
Now, readers who identify themselves and show me your personalities from time to time: what are you? Here are some of my guesses, and some of you, I just don’t know!!! But I want to know!

1) Guy You thought Was Rude: Pisces?
2) Kristin: Taurus?
3) Jen: Aries?
4) H n H from L.A.: Scorpio or Leo?
5) SA from B: Aquarius? Pisces?
6) Mrs. Gilb: Pisces?
7) susan: Libra?
8) Janet: Virgo?
9) Kyra: ??????
10) Mom, NOS: ????
11) Autism Diva: Aries?
If I didn’t list you, leave a comment with your moniker and your sign and why you think it’s you, or why it is not you!

Book Talk

I have mentioned that my Special Olympics book idea was not going anywhere. I could not pull it out of my heart, and my Kennedy connection is currently tied up with a lot of his own work, so it appears that it is not the time for that book.

However — I have come up with a new idea that is based on an old one. I have been working on chapter headings and descriptions, as well as parts of the new proposal. I sent this little bit to my agent, who is no longer an agent but is able to be mine for a bit longer.

My agent LOVES my new project idea! You have to understand, she hardly loves anything!!!! She is a curmudgeon, with a heart of gold, but she is a tough New York chick so I always get chewed out when I send her stuff. (“Are you sure this wasn’t already done by so-and-so?” and “The title is flat” and “Are you absolutely sure that every word here is your absolute best writing? No laziness!”)

I sent her the chapter headings and descriptions and she actually wrote back within a few days, using words like “GREAT” and “FANTASTIC” and “YOU’VE DONE IT!!!”

Now the work begins — and for me that is not the writing of the thing but the marketing analysis of the proposal. I have to spend days doing research and going to bookstores to analyze the competition and making my case. But — I already have 20 pages of the proposal, because the “Why me/about the author” section was very easy. I already have a publicity record because of Making Peace With Autism, which is out in paperback, a fact that speaks very well for my marketability. (By the way, Making Peace With Autism would make an excellent gift for extended family members, neighbors, teachers, doctors, lunch ladies, bus drivers, friends; anyone who doesn’t quite “get it” about autism but would like to. It is primarily a hopeful book, honestly written, not depressing, and nobody gets cured in the end, except me, of my autism myopia! It is not prescriptive, but rather, descriptive).

Once I’ve handed in the proposal (probably by the new year) I will go public with the idea and ask for your help because I want to make sure that this book matches the needs of parents with kids with disabilities.

So, stay tuned…
And buy my paperback! Heck, buy two! It’s cheap enuf.
BTW, the opening line about Nat’s birthday has been subtly changed… to be more fair to him, my sweet boy.

Sunday, December 3, 2006

Tour of My House

Tabblo: Tour of My House

What a great time I had last night! Ned and I went with friends to Tangierino, that beautiful restaurant in very cool Charlestown (where the Bunker Hill memorial stands) where they have belly dancing. This restaurant has so much atmosphere, with each booth draped in ruby-colored gauze, tiny lights, and beads, and the walls covered with moorish shapes and exotic paintings, and the food is wonderful, that we wanted to go back. (We had gone for our 22nd anniversary in July, too.)

The belly dancer was the same one we saw in July. She was very beautiful and had that impossibly smooth, plump and juicy skin of the young-and-never-pregnant. She moved slowly down the aisle with dollar bills stuck inside her sparkly green outfit, which I think is so unfortunate because it really detracts from the whole look.

Anyway, she was very skilled; this time I could analyze what she was doing. She did some very good ab undulations and moved gracefully, but not much hip work and almost no zills (finger cymbals). We were all very taken with the whole thing.

I had a lamb, feta, eggplant, and carmelized fig & apricot dish (Sultan’s Kadra) and we shared a white-and-dark chocolate mousse cube (!) and some good coffees. Fantastic!

Saturday, December 2, 2006

While My Guitar Gently Sleeps

It appears that I have given short shrift to a very important but lately latent side of myself: the guitar-playing me. My readers don’t seem to realize that I play. That is my Fender Stratocaster in the background of my latest belly dance photo, on two posts back. I bought the strat
before Benji was born, back when Max was three and Nat was five. But I’ve actually been playing guitar since I was seven. I started out learning chords and playing folk music, stuff like the Weavers (which I hated) and also Paul Simon and Bob Dylan (whom I loved and still do), and as I got older I learned cooler stuff like the Beatle’s Blackbird, and some of the tablature to Roundabout and Mood for A Day (which is arguably the best Yes song of all time, even more beautiful in some ways than And You And I, but And You And I is a fuller experience, like Close to the Edge, so I feel that all around it is a better listen. Do me a favor and listen to Mood for A Day and tell me what you think.). I even learned some Bach and some Segovia stuff. I was pretty good, for a teen, I have to say.

As I got more advanced, I remember reading stuff on MusicCritic about guitarist and what their gears are and all that stuff. Then I took a break from playing and haven’t played since.

I did play a little in college. Our dorm had a variety show and one year I played Blackbird with a friend, Paul Downs, who happens to be NancyBea’s husband now! He played the flute, just beautifully while I did the guitar licks. And the following year I did not play guitar but my friend Dirk Ziff did (of Ziff-Davis publishing, who also went on to play guitar for Carly Simon. Me and Carly, sure, we go way back!). I used to type Dirk’s papers and if I had known how rich he was, I would have charged more than one dollar a page! He also wanted me to break up with Ned and go out with him. I, of course, would not. And no, I do not regret that!! It’s the typing I regret. Jin Sung-Pak (now a higher-up in the Unification Church, a.k.a, the “Moonies”) was Ned’s roommate and our bassist, and John Hayden, another good friend, was the drummer. We were “Pat Senatar” and I was Pat, the singer. We did Hit me with your Best Shot, and it was a huge success. I do impersonations, and I could imitate her very well.

Then along came kiddos and other things not that much fun and I put away happy stuff like guitar while I suffered with depression and OCD and adulthood.

But when I was 32, I started to come out of it. I fell hard for Eric Clapton. And as you have probably guessed by now, when I fall for something, it consumes me. So I bought an electric guitar and some of the Hal Leonard books that give you the tablature for any guitar solo. I practiced a lot and could play the solos to a couple of Clapton things (slowly and badly), some slide guitar, some Allmans: Sweet Melissa, Ramblin’ Man, Jessica. Also Bob Dylan, but that’s just picking and strumming, no solos. Once I get really good, I might experiment with pedals and effects. Browsing on will show you just how many have been invented in the last 10 years. It would be silly to miss out on all the innovative sounds possible.

I get discouraged because I can’t really solo the way you’re supposed to: making stuff up within the scales and making it sound authentic. I can’t improvise. I can imitate. So I stop because I want to be really good, like playing-in-a-band good, and a) I’m not; and b) I have no band.

So my guitar sits in the corner for now, until I pick him up again… Or until it comes around again, on the gee-tar…


Lover of light
Baby Delight
Hater of night
Keep you in sight

Devouring your sleep
Pleasure so deep
Challenge so steep
Worry I keep

Thoughts unknown
Desire – alone
Then something shown
Embrace as my own

Friday, December 1, 2006

Keys to the Universe, Encore

In the past I have made lists of my Keys to the Universe, by which I mean the things that never fail to do what they are supposed to do. They can be light, they can be deep. I have some new ones that I would like to share with you, and I hope that you will share yours with me so that I may consider including them in my new book.

My Latest Keys to the Universe
1) Going to Great Eastern Trading Company, River Street, Central Square, Cambridge and just browsing, but let’s face it: I always end up buying something there. Case in point: I just bought a gorgeous deep purple and lavendar beaded cabaret style Egyptian belly dance costume! It is incredible. Totally over-the-top (except the top actually fits quite well). Glass bead fringe, matching belt! It moves with a life of its own! Makes me look like I know what I’m doing!
2) Putting on a belly dance costume and practicing.
3) with Ned.
4) Lunch at Family Restaurant; it is the lunchplace to see and be seen in Brookline! I run into all my old Town Hall friends there. I talked to the owner and he says he is thinking of having belly dancers there, for special occasions…!!!!
5) Dinner at a restaurant (do you see a theme here?)
6) Visiting Nat’s school. They now have a wonderful music teacher, who is teaching Nat some music theory!
7) A 20 minute nap, in the middle of all the action in the living room, on the couch with the yellow Restoration Hardware pillow under my head, and the green-striped Crate and Barrel pillow on top of my head, and the blue, green, and purple afghan Mom brought back from Wales.
8) Remembering to have Shabbat (Jewish Sabbath) on Friday night; it is a great way to end the week and set up a peaceful, family-oriented weekend. Plus I love making the boys recite the prayers in Hebrew, and watching their sweet faces as they struggle with the ancient, foreign words. Shehechiyanu, V’kiyamanu, V’hikianu, Lazman Ha-zeh. It is a Commandment, after all!
9) A good book idea. Yes, I have it. At last.
10) Giving a talk about Making Peace With Autism. It never fails; I always enjoy these.
11) My chocolate brown shearling coat. Totally gorgeous, totally warm. Makes me look forward to cold weather. Well, sort of…
12) Fun comments on my blog.

Your turn…

Teh Yums

This painting was done by a woman who knows what is good in life. My friend and favorite artist NancyBea paints delicious food, trees in summer, her kids, her friends. She coined the term “Genre of Inclusion” (I think), which is where she paints pictures that might also have something different in them, something or someone we are not used to seeing in portraits, like her son stimming. When I look at her stuff, I want to be in that house with those women chatting, or I want to hug her boys, or introduce them to mine. Her paintings burst with honesty, color, and love. Just like her, come to think of it!

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