Susan Senator

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?”
Hmmm….
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!

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.

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.

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.

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.

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!

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.

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!

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 https://allaxess.com/best-guitar-pedal/ 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

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) I.M.ing 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…

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!

Have you ever had an experience so rich that your senses are filled, and you feel it in colors, and tastes? I first experienced this when I was fourteen and listened to Yes’ And You And I. I remember putting my headphones on and blasting it, lying on my back on the floor in my bedroom. The music kept building and soaring, a rich chocolate rainbow in my ears. I would listen to it again and again. As I got older, I learned that Yes is thought of as kind of a silly histrionic druggie band and I hid my enjoyment of them. I moved onto other tastes. Only as a 40-something did I realize how I missed them and Ned bought me a CD. I popped it into my car stereo, which is better than my home stereo. When I heard the sugary, light green notes of Steve Howe’s guitar at the beginning, and then those thumps that then lead to the brighter green guitar strumming, I had chills.

It wasn’t until sophomore year of college that I had that feeling again; this time it was from Beethoven. The Pastoral Symphony. So rich, full of green and fuschia, bursting with flavor like jelly beans on my tongue, building and building and exploding hot and triumphant, like mid-June. I could not believe anything could be so beautiful. I became a Beethoven nut for a while, seeing him in concert as much as I could (the Philadelphia Orchestra was so affordable to college kids and newlyweds). Ned even bought me a bust of him, like Schroeder has on his piano. I still have it, sitting sternly on top of my defunct stereo. I still listen to him sometimes, the utterly sad but perfect second movement of the Seventh Symphony; the more spare Archduke Trio, elegant and simple as a single diamond. And of course, I still love the Pastoral.

And so I had that feeling again tonight, at my belly dance class. Standing there in a circle of women — all of us struggling to move our hips up and out in a figure eight, lifting from the waist and moving nothing but the hips in an even shape — with this Arabic music fluttering snakelike, breathy flute and visceral drums, I felt it. Just when I thought the music couldn’t get any more beautiful, they had this high-pitched squealy instrument, which sounded to me like a woman crying for love. My thigh muscles were quivering after a while so that I could not hold the position. My knee and hip were sending out all the wrong signals.

Yet I was supremely happy. My senses were drenched. The hard, dusty floor under my bare feet; the taut and burning muscles, the faint soapy sweat, the strange and foreign, heartbreaking music. The Christmaslike jingling of my white and gold hip scarf. My parched throat, imagining water. My teacher, her waist moving at an impossible, soft angle away from her hips, as if it were alive, (while she cracked jokes like, “Pop your hip up and look at it, like you are suprised and so happy to see it. ‘Oh, look! A hip!'” and later, “When you do this backbend, remember to turn your pelvis away from the audience.” ). She is a wonder, full of real joy that just radiates from her. She also said, “In belly dance, there are no wrong moves, it’s just that you want to be sure that the move you do is the one you set out to do!” She says it all with a laugh.

A lot of laughter in this class, and even more sweat. She worked me so hard, she made me do an entire left pivot with her (everything to the left is harder for me, we all have our more difficult sides). My face was glistening, dripping. But I loved it.

I can’t get over how this teacher can teach any move. She knows exactly how to break it down, muscle by muscle. Sometimes that helps, sometimes it makes it harder, though. Sometimes you just have to close your eyes and try it, how you think it would be, in your mind, and then you can get it. That’s what happened when I finally got the Hip Eight (a figure eight perpendicular to the floor). I had it, and I knew I had it. Lifting from the waist and everything.

I wanted to linger, but class was over. I made some jokes with the other ladies, then got in my car and immediately played — guess what — the CD from my teacher. Especially song number eight, a totally histrionic, violiny thing. The music rushes up in ruby and velvety brown tones, filling my ears and my heart. I opened the window as if it were summer.

It kind of was.

Here is my latest Brookline Tab column, about a high school variety show I attended with Max. How lovely to sit there with him and laugh at what he thought was funny… It all goes so fast…

I am just blown away by the people out there who connect with me. Way back when, W.C., (Without a Clue era), I felt so alone as a new mom. I felt like I was going through the motions, pretending to be a mom, smiling at my tiny boy Natty while inside, just wanting to cry all the time. Why was that? I still don’t know. Was it because he was not responding to me the way I needed him to? Was I post-partum depressed? Or was it because I was simply unhappy living in Yenemsveldt (which for me was Arlington Heights, MA, no offense to you Arlingtonians. It just was no Brookline, forshtays? I needed my ten different bagel bakeries, Kosher butchers, Mel’s Shooz, Linden Park, Cypress Field, Emerson Park, Devotion School Firetruck Playground, Chestnut Hill Mall, and all the other places to take my neurologically-challenged little boy. Instead, I had street after street full of ugly little Cape houses with vinyl sidings of dusty yellow, mint green, and beige. ) I used to sit there in the sandbox with Baby Delight and I would just talk and talk to him, regular voice, telling him how unhappy I was living there, how I had no friends except Merle, but she lived in Boston so I didn’t see her regularly, plus Quinn sometimes depressed me because he actually played with toys and was interested in Nat, who definitely was neither. I used to talk and talk to him about how much I loved him and how he deserved a better mom, one who was happy. I would recite my Pro’s and Con’s list out loud, about why we should move back to Brookline even if it meant taking a loss on our crappy little house and buying a condo. I would weep into the sandbox, hoping a Real Mother would not show up and shame me with her play expertise and her child who used a dumptruck correctly. How I hated “normal” moms who seemed to go around unconscious of anything except their wonderful, responsive child! Then suddenly they would be startled by the odd things Miniman did, like throw wood chips and watch them shimmer down on him, or stuff his mouth with sand or the shovel that I steadfastly brought with me.

If Nat’s toys could talk, what would they say: “Why are we so rejected by this boy? What the heck did we do to deserve such a boring existence? Could you believe it the other day when he put us in his mouth? What, do I look like ice cream to you? I sense a trip to the Salvation Army in my near future…”

Anyway… Where was I? Oh yeah, connecting with other parents. It finally happened, years later. I had to write a $#@ book for it to happen, however. Others find support so much more easily than I do. Sometimes I think I am as prickly as Ben. Maybe I give off a little, “F*** off,” air, when I really don’t mean to. What I really mean is, “F*** off if you’re going to hurt me, you Pr***.” Here is the depth of my pathetic history: I used to even feel alienated in certain autism support groups, for God’s sake, always comparing my kid secretly to the others, thinking thoughts like, “Jeez, so-and-so thinks he’s such a great dad because his kid responds to all that, what’s wrong with me/Nat?” or “Gosh, why doesn’t she get a clue?”

This was way back when. I no longer do that, (well, almost never! 🙂 because I feel so much more of a kinship with the other parents now. I feel like I paid my dues as a young mom. Nat is now 17, and there is very little worry left in my soul about where he is going with his life. I think all of my judgement and lack of connection with others was born out of my own fears and tremendous sense of inadequacy, which by now has shrunken to a bearable size.

For today, anyway.

I just had an experience which only underscores what I have always believed E.N. (Era of Nat. Prior to Nat, I was W.C., Without a Clue). Beware of dogma. I am not referring to religious dogma; I am referring to life dogma.

I have come to understand that in this life, there are no hard-and-fast rules, except the obvious Ten Commandment sort (don’t kill, don’t make people suffer, particularly your parents, don’t order take-out when you have a perfectly wonderful husband menu at home, even when they offer free delivery, etc. ). While my pay-your-dues parents taught me that you had to follow certain prescribed tracks to get anywhere in life, they also taught me that I could do anything I set my mind to. When I was unhappy at college in my freshman year — (I went to Trinity in Hartford; what was I thinking? Only that it was pink and green, blonde and blue-eyed, so beautiful to behold, I must have thought: sign me up for one of those yummy preppy boys! Only to find that they were only interested in dating me at night, if you catch my drift. I was not at all like their Mummies, or their sisters named Muffy or SuSu, so there would be no bringing ethnic old me to the fraternity dance. I think I realized my mistake at last when one young man turned to me at a party and asked, “What does your father do?”
What does my father do? Hello? Why would a fellow 18-year-old want to know something boring like that?
“He’s a high school principal,” I answered. The boy turned back around and did not talk to me the rest of the party. Wrong answer, I guess. ) — I told Mom how sick I was of the loneliness and the snobby people. I wanted friends, a boyfriend, a group of boys and girls who go get pizza together and stay up all hours in their p.j.s discussing Marx. Why didn’t I have that?
“So transfer,” she said.
And I did. That spring vacation I took the train down to Penn and stayed in a high school friend’s dorm room. I looked at College Green, strewn with all types: hippies, princesses, frat boys, internationals. It was like a mini city. I fell in love. I wrote my essay on the train ride home and was accepted a few weeks later.

You don’t like something? Change it. You don’t know how? Find out. Many things are possible in this crazy and wonderful world of ours.

I learned E.N. that rigid beliefs in how the world works are your obstacles. Take the example of writing my book. I had no formal training as a writer. I am not a journalist by background. I am an essayist who has learned how to write what newspapers want (sometimes). I know what I want to write and I find a way to get a newspaper interested. Those are the only rules.

In autism there is a lot of dogma. A lot of people will believe that there is only one real way to teach a kid, and that if you don’t follow that to a T, you will not succeed. Some letters to the editor in yesterday’s Worcester Telegram made that point about me. This mom said that I did not try Nat on The Diet, so therefore I cannot say that it would not help him/cure him. True. I never gave The Diet a fullblown try. I did some of it. Nat’s behavior did not change. In my heart of hearts, I do not believe that it is his diet that is making him behave autistically. I think it is the way the nerve cells grow in his head, the particular deficits of serotonin, etc., that affect his ability to make connections about things he experiences. Maybe if I didn’t believe that so rigidly, I would see an improvement in Nat’s abilities through diet. Maybe. But I have to make choices and I can’t do everything that holds out remote possibilities. That is my own dogma, and it may be that it is a pitfall for Nat. But maybe it isn’t.

Worse dogma is the practitioners who can’t see the forest for the trees. One such therapist practically forced me to buy a DVD player for the therapy room so that Nat could take mini breaks watching DVDs. I told her, “He won’t want to do that. He likes to watch DVDs by himself, when he’s all finished. He doesn’t want minibreaks.” But she insisted that we get Nat to do this her way, that it would be so much better to have him watch a little and it would be a great opportunity for him to learn how to comment on what he sees on t.v.
“He won’t want to do that,” I said, hating to be a wet blanket, “He hates talking during a show.”
But she insisted we try it.

Of course it failed. Nat insisted that he “finish work” before watching anything. He used wonderful language, trying to force the therapist to take the DVD out and put it away! His favorite DVDs, too!

Other practitioners have insisted on one thing or another with Nat, simply because he is autistic and we all know autistic people all respond one way to certain things, right? Like the way some of them insist on visuals for Nat. He is not visual. He listens. He is a listener to noises. He memorizes songs, inflections. He gets distracted by the least little sound. If one more practitioner insists on Mayer-Johnson this or that for Nat …! He can read, for God’s sake. He doesn’t need a stick figure drawing of a bathroom, thank you very much!

But other kids do. So I would never say, “Oh, that visual stuff is crap.” It isn’t for some.

If Nat needs to learn flexibility and fluidity to get along in this world, so do the rest of us. It is only fair.

Please: Curb your Dogma!!

My paperback is now available for order and will be shipped in two weeks. This should be cause for celebration, the fact that I made it to paperback. But I am very unhappy. I am stuck. I am not getting anywhere with new autism projects/articles. I feel I need to move on but I do not yet know how.

The Worcester Telegram did a piece on me to promote the new paperback. But — this is the least accurate article on me I’ve ever read. It is not factually incorrect, but the spirit is completely wrong. I even know the reporter, but obviously not well enough. The hook is wrong: I have and always will fight for Nat. Where did he get the idea that “Making Peace” means “giving up the fight?” The kicker is wrong, too, that half the time Nat does not know what we are talking about and that as he ages he is creating more problems for us. I do not feel that way. I believe that more and more he does know what we are talking about but only half the time does he show it. And as for creating more problems… all of my children “create” problems for me; it is their job. Nat is not special in that regard. His problems are a bit more evident at the time, however…

I am so depressed and this is the tip of the iceberg. There has been a slew of writing going on about autism and none of it is by me. I have submitted piece after piece to the NY Times, especially on the need for Late Intervention, and they went and assigned it to two other writers, and this is making the rounds in the blogosphere. It is a great article, better than mine, but that is beside the point. And today they are talking about buying toys for kids with autism; I wrote about that years ago in Exceptional Parent Magazine. And yesterday WBUR (Boston’s NPR affiliate) did a one hour program on autism in the later years. Two different friends called me to tell me, how wonderful!!! No one at that station remembered all the things I pitched to them, nor the commentary I did almost exactly a year ago?

I feel so irrelevant. Am I over? I know, I know, huge ego, but yeah, didn’t you already know that? Anyway… this is who I am, and right now, I am so bummed. Yes, sure, I am thrilled that autism is so central to the media these days! But as a writer, I’d like to be a part of that. And I’m not anymore. And it is not for lack of trying.

So if I’m to move on, I need to know what’s next. I don’t feel like I can do another autism book yet, because not enough has happened. And there has been a glitch with the Special Olympics book, as of yesterday. So I don’t know what’s next for me and I am in some kind of hellish stasis at the moment, churning my wheels, gnashing my teeth, wringing my hands.

Going to try to take care of myself. A trip to the gym, lunch with my best girlfriend (I hope) and then — work on my newest project, which I may be calling, “Making Peace with Midlife.”

Home
Where my thoughts escaping
Home
Where my music’s playing
Home
Where my love lies waiting
Silently for me.
–Simon & Garfunkel, Homeward Bound

I’m home. Here’s what is good about today, and here’s what is bad about today.

1) Good: My own bed is just right. Bad: I didn’t sleep long enough. Good: Neither did Ned

2) Good: My email is fixed. Bad: I hardly got any email once it was fixed

3) Good: I had a great workout, steam, and shower. Bad: My hair came out terrible

4) Good: I got to take a long nap. Bad: When I woke up, my eyes looked really funny

5) Good: I had Cheesecake Factory salad leftover from last night. Bad: The chicken was bouncy.

6) Good: All five of us took a long walk to buy coffee and books. Bad: Nat was a pain over the water bottle (wanted to drink all of it and piss off Ben); Ben groused the entire time. Good: Enjoyed a good steamed cream latte; Max and Ben got the books they wanted; Nat nuzzled my hair in the bookstore.

7) Good: I have an idea of what to make for dinner. Bad: I’m making meatballs for dinner

8) Good: I will belly dance tonight. Bad: No one here cares

9) Good: The Simpsons tonight, I hope. Bad: It is often a repeat

10) Good: Tomorrow is supposed to be sunny and hot (60 degrees) again. Bad: Global warming