Susan Senator

Readers and friends ask me pretty frequently what to do when their ASD kid starts exhibiting difficult behaviors in school. One friend reported that the principal had said something like, “The goal is to get him to be as normal as possible.” I disagree. That is not the goal. And ironically, if that is the goal, that may just be the reason for the difficult behaviors.

Kids can feel when they are being judged. Hearing others around you say that you are not normal can have a bad effect on a person. We all know that. Why would it be different when you’re autistic?

Then there is the question of getting to normal. First of all, what is normal? I sure as heck don’t know. I’m not being goofy here; I really don’t know anymore. You scratch anyone’s surface and you find a whole Pandora’s box of strangeness. I used to think I was normal, but I’ve been scratching my surface a lot lately and I have found some real weirdness. I used to think Nat wasn’t. But I see Nat, trying so hard to work within the strictures of this world, unquestioning, trying to get along with everyone, to do what we all want of him, to be a good person, a loving family member. That is above normal for a nearly 17 year old boy. And me? Well, just read this blog and decide for yourself.

Normal is an interesting topic. I think it could be a good book, though: Guidebook to Normal Behavior, by I.M. Regularguy. There is some kind of agreed-upon code, though, and I do know what it is, and Nat does not. That probably makes me normal. It is hard to teach him the code, too. It reminds me of what it is like for Max to learn certain aspects of a foreign language, like noun gender. He tells me how ridiculous it is that French has male and female words. He says, “All you can do is memorize them; it makes no sense at all.”

Exactly.

Or, he learns, by using the language in supportive environment, how to converse fluidly and fluently. Sink or swim doesn’t generally work except for certain kinds of learners. Other learning styles must be accommodated by the school system. This is the law. Anyway, it is not acceptable for a principal or staff person to say that the goal is normalcy. The goal is to get the child to be able to learn what it is school has to teach him; the goal is to master his IEP/the curriculum laid out for him.

How does he get there if something is bothering him enough to cause him to act out? That has to be figured out. If the behaviors are disruptive to the class, there has to be an FBA, a Functional Behavioral Assessment, done with the purpose of determining whether the behavior is due to a diagnosis issue or not. The FBA produces recommendations to everyone. An FBA has to be done within a certain, prescribed period of time after the request is made.

If an FBA is not indicated by the child’s actions, then the team should at least be reconvened to troubleshoot. This should be done before things escalate too much. The parents should make sure the child is feeling well; sometimes if a kid is nonverbal it is hard to know if he is sick or sad or pissed off at a particular teacher or something else. There are always reasons for “difficult behavior.” You just need to call in the right people to investigate.

It’s difficult to get it right when you’re getting on in years. I am not complaining about all the wonderful attention I got yesterday; but I find it interesting to see how so many of my birthday wishes were about my unfortunate age (44) — either it was a joke about kind of getting old, or it was a joke about my being eternally 29, 35, whatever. I have never lied about my age, but I understand why people do. I think that for women, especially, there is almost no place to stand as you age. There’s no way to get it right, because our culture puts such a premium on youth — meaning, being in your twenties or even teens. I buy into it, of course, in my desire to stay slim, my pursuit of the latest fashion, my despair over every new wrinkle in my face. Seriously.

I don’t think I’m shallow, but I do admit to spending a little time every week wondering what I’m going to do, what will it be like, when I really start to “show my age.” I am a product of my culture. I have talked about this in therapy. I think showing my age will be a grieving process, a loss, or some kind of transition. Unless I start to “fight” it artifically. First, with diet, workout, haircolor, spa pamperings, and in-style clothing. (But I get exhausted thinking about how I’ll have to torque up my workout as my metabolism worsens, and depressed with I realize how this will all deplete my checkbook, too. Not to mention the time involved with all of it.) Then comes the question: how much further are you willing to go to turn back or stop the clock? All my friends talk about it. Are we or aren’t we? Some of them have already had things “done.” I think about Botox, I think about surgery for my eyes. I won’t do it, because it is dangerous and expensive. Ned is philosophically opposed to it, too. But then I feel that sense of loss, imagining what it will be like to look in the mirror and have my face no longer be what I have always seen. Even though, obviously, my face has changed since my twenties, it hasn’t worsened. But I believe there will come a time when I will feel like it has. Already there are days when I sigh and say to myself, “Scarlet, you done had three children.” I look at girls in their twenties and I can’t believe how soft and smooth and babylike their skin is! Did I once have that, too? Did I even appreciate it? No, I was caught up in feeling too fat or stupid or like an alien among earthlings (because of my perpetual sense of alienation, or — dare I say it — my own dusting of ASD).

Ned tells me that I’ll never feel like I’ve worsened from time, he says it will always be good, and feel right, and make sense, because it will always be me. I don’t agree (yet). But he says, “Look at your mom. Isn’t she beautiful?” And I say, “Yeah, and she doesn’t even wear any makeup! What’s with her?” My mother, who is 67, (and I don’t think minds telling people, at least I hope not), has only two concessions to age: she colors her hair, and she keeps her body extremely slim through careful diet and exercise. Mom raised me not to be vain. When she caught me looking in the mirror, she’d say, “Quit it!” But I’d keep doing it — guiltily. She would not let me have pierced ears (she relented when I was 10, much to my delight), or wear makeup until I was 13. She never let me wear the high-fashion stuff because she said it was “ridiculous” for girls to dress like much older women, or tsotskellahs. These days, so many parents don’t seem to mind if their little girls look like miniature fashion models, with hiphuggers and platform shoes! But should I judge them? I’m an old lady wearing that shit!

I am not where Ned is (or where Mom is) in terms of being in touch with what beauty really is. My ideal is far more stringent, much more attuned to what the fashion magazines say. Even if I were to stop reading them, I would know, because I see how young women dress/look and I get a sense from them what the current fashion is.

Current modes are also found on television, of course. I remember realizing, after watching Friends, that the fashion had changed in terms of how women’s arms are supposed to look. Courteney Cox had very thin, ropey, muscular arms and I was shocked at the time. My own arms were so much more doughy. I started to notice other celebrities’ arms, sinewy and strangely male, though thin, and I was disgusted. Now, my own arms are a lot more toned, though they will never by that skinny because my body can’t be that skinny. I have too much Eastern European genetic material to be that skinny.

To be honest, I am happy with my age probably only because I feel like I’ve done everything I can, fairly naturally, to look and feel my best. It is a slippery slope, and I feel like I’ve already begun the descent. I am hoping that in time I will acquire the wisdom to know how to apply the brakes without injuring myself.

A golden day. Not at all like the day I was born, 44 years ago, when there was a freak snowstorm. Mom says I was born easily, at 5 a.m. She was awake for it all, which is kind of unusual for births back then. She said my nose was a bit squooshed and so I looked a little funny, but I had a head full of black hair and she was in love. She said in a day or two my nose straightened out and she put a little dress on me and she saw that I was beautiful. And thus began a lifelong tradition whereby most things that are ailing me can be fixed by putting on a pretty little something.

The sky cleared around midmorning, with occasional eggplant-colored clouds that filled the sky and then were split by the sun pouring through. It has been around 70 degrees, too. A day custom-made for me, or so I would believe were I in a manic phase.

I had the belly dance class with Deanna this morning, and my friend Allison joined me — I met Allison 8 years ago, when we both took our babies to an infant music class. (Right now that “baby” of mine is annoying me because he just won’t start his homework!) I persuaded Allison to give the class a try. She loved it! Deanna showed us a dance routine to go with a drumming CD, which I happen to own because I bought it from Shadia, my other BD teacher! So now I have a one-minute dance routine. Don’t ask me to perform it, though; I have already forgotten it! I tried to show Ned; he said, “It doesn’t really look like belly dance.” Gee, thanks for the encouragement!!

But he brought me home some of those gorgeous Party Favor cupcakes, with the one inch thick icing. Mine had flowers on the top; Benji and Nat had big purple spiders on theirs. Max has a pumpkin; Ned has a flower (?) not sure why. Then I ate cheese and crackers, (not just cheese), what a treat, and I had half an apple, which I’ve been craving. Yes, fruit is verboten on this stupid diet of mine, because it is full of sugar (carbs). Tonight I will have dessert, too, and bread with dinner!

This a.m. all the boys got in bed with me! They are so big! Then they gave me cards, mostly drawn by Benji. Ned’s card was beautiful, and said how this had been a year of a lot of happiness and pain, a lot of learning about myself, and how he loves me so much. Wow. He always writes a lot on my cards; a man of many (written) words, for such a quiet guy.

I got a new coin belt for dancing from the boys, a Greek music CD and gift card to Anthropologie from Mom and Dad, a birthday card with a button that reads “old” and crystal earrings from Sarai, my sister-in-law, whom I adore, funky earrings from Ned’s dad and stepmom, who are great, and the costume from Ned, which has not arrived yet. Laura says that something “belly” is coming in the mail. She got me an obscene birthday card; I guess I’m now at that age!

Ruth and I had lunch together and then hour-long massages at our healthclub. Just fantastic. Then we soaked in that bubbly hot tub and had a eucalyptus steam. By then I was ready to pass out, so I got dressed and headed home.

Had some nice birthday emails — a couple of male admirers (!) and also old and new friends!

Right now I’m downstairs trying to figure out what we’re doing tonight. Ned wants us to go to this divey belly dance club in Cambridge, but I think I feel like wearing my hot red dress and going out someplace fancy!

I opened my card one day early. I couldn’t help it!

Happy Birthday

October shines in a special way
Red Orange Brown the trees
Grasses dry turn to hay
Of amber fields
Through the shortened day
Heighten the coming changes
Of winter’s season
Not always welcome

October shines in a special way
My Susan’s birthday
The bright soul who came
Into our life
Composed of her own colors
Feelings Thoughts Philosophy Zest

My girl who thinks about
What is happening Feels
Needs to act
To reform To create To help
Family community world

At this time
Questioning where she
Is going Future
Nat Max Benji
What about them
You and Ned
Writing books Your age
Keeping body taut
What else to reflect on my dear
More To be sure

So, think on as you will
Do Feel Create Solve
And also enjoy
Love Laugh Cry Thrive
Love Laugh Love Laugh Love
Grow with grace in peace

Happy Birthday from Dad

Last night I attended a meeting of our town’s special education parent advisory council (SEPAC_. Way back when, I was a co-chair of this group, when I first became interested in what our town was doing in terms of the schools and special education. This was eight years ago, around when Benj was born. I remember being elected co-chair and then realizing I had to run home so I could nurse little B. [Oh, God, was that sweet! I used to hold him up in front of my face and say to him, “Hi Benji! Wanna eat?” And then just sling him across my belly and latch him on. If there is anything I miss about having babies, it is that. That, and the smell of their faces. The best dessert life has to offer. It’s like the labor and delivery are the vegetables (i.e., the worst) part of that meal, and then smelling/kissing/nursing the baby is the dessert!]

Wake up! They are no longer babies and they don’t smell all that good. But they are so cute, and so funny!

So there I was at the SEPAC, “Meet the Administrators” meeting. I realized that I had had a hand in hiring most of the people up there, because of course I hired the superintendent while on School Committee, and also the Deputy Superintendent of Teaching and Learning, and then approved hires like the Out-of-District Liaison, with whom I deal personally all the time because of Nat. I felt very proud of what I had helped do. School Committee is a thankless job that takes at least 20 hours a week (without pay) and you very rarely get to actually see anything you had a hand in.

I noticed that the bulk of the parents sitting there were autism parents. Bad sign. That signaled to me that our town is still not doing what it should be doing in terms of ASD. Otherwise you’d get a smattering of every disability.

When I first became politically active, there were NO programs for autism in our town, and Nat was sent to a collaborative program in a neighboring town. The two towns pooled their kids and their resources and created programs that way. Now my town does not belong to a collaborative at all, and tries to form contiguous programs in all disorders at the various schools (we have eight pre-K through eighth grade elementaries and one high school). We also have a “magnet” school for ASD, but many of the parents are dissatisfied with it, particularly because the classrooms are more substantially separate than inclusive. Sometimes I get pissed with these parents for being unhappy because at least there is a program in town now! Which I helped create!!! But — I stop. I understand how painful it is when it is still not right. Then I kick myself for having resigned from School Committee because I can no longer affect change from that venue!

But it was not the venue for me. I need to be able to be irreverent and critical. On School Committee, so much of it was about public appearance and decorum. So much was listening to recommendations from staff and not the other way around. It is better for me to be off, to be an activist and kvetch with my laptop, and a parent on the other side of the table.

Still, I was frustrated thinking that there was still so much dissatisfaction with the ASD programs here, after all the advocating I (thought) I had done. I have served on the SEPAC, the School Committee, written for the local paper for eight years, and I have written MPWA. What the heck else can I do?

I keep going to the meetings, gently pointing out here and there where things need to change, what we used to do, what we still could try, and hope somebody gets it and moves on it before all these little kids are as old as Natty!

This post is me in my most natural state: jumping from topic to topic, attentionally challenged. That is because I need to be doing a million things at once sometimes, and other times, there is nothing at all to do. I am always hoping for balance, but I rarely achieve it. When I find something I really like to do or think about, I do it and do it until I am sick to death of it. Same thing with something I hate. I think about it and think about it until I am so depressed I have to rip someone’s face off or go to sleep. It is good for me to get away frequently, so I can have some space.

I’m going to Wisconsin Friday night, for a Saturday morning keynote. This is the last of the Big Three I had in terms of travel. I have some other events coming up, but they are easy to get to. I’m trying to get everything done so that it isn’t difficult for Ned, but it still will be. It means I have to keep up with the laundries and the food, and try to have everything on hand so that he can make lunches easily. The beds and the vacuuming will have to wait. I am really behind in that and it makes me feel uptight. I don’t sleep as well when my pillowcase isn’t fresh; I think I have dust allergies.

[Yesterday was the first day we turned on the heat. That makes a difference in terms of dust, too. Ben and I both woke up congested; mine in my nose, his in his chest. He barked a little but I gave him hot chocolate, which cures most things when you’re under 40. (Over 40 it works, too, but you pay metabolically.)]

[Speaking of under 40, I was invited to a party called, “1001 International Nights,” because I now belong to a belly dance meetup group. This party is at a club downtown, and there will be all kinds of dancing. I emailed the guy who is organizing it and asked him if there would be anyone over 30 there; he said, “Sure, a few of the organizers are over 30. The range is usually 21 – 35.” So do I dare go? I go, if I can get a friend to go with me… (I can’t bring Ned; I just can’t see it, him in his Gap jeans, Tabblo tee shirt…) We’ll see, we’ll see. I want to do so much belly dance. It’s like all I want to do. I can’t always just do it alone; I’m already sick of my music. I need new music, and a new hip scarf, not to mention how I’d like a coin bra and other things. My costume should be here any day (Ned bought it for me). I can’t wait to have it. I need more instruction, though, so that I have a really full routine, something I can do for 20+ minutes. I have perfected the chest circle and the five different shimmies. My favorite move is called the “Maya,” which is a reverse hip figure eight (an eight that is parallel to the floor). It really looks like a belly dance move. I find that I have less range of motion on my left side, so I have to practice rotating my left thigh a lot more. That is not the injured side, thank God. I have a new belly dance friend, another mom at the school, and we always see each other on the playground after school and talk belly dance. It is so much fun. I want to get really good at it and maybe teach it to my friends, or even perform a little sometime. There are contests, and I will enter one when I feel ready.

I’m also trying to stay on a schedule for working out, so that it doesn’t matter if I miss it on Friday and Saturday (when I’ll be away). So I went to my healthclub again today, loved it again. I always see lots of people I know there, which is nice, and I did get into that lovely hot tub, too. Tried a eucalyptus steam, for my pores. They look the same. Ruth and I have massages scheduled there for Wednesday, after the belly dance class.

Other things I’m thinking about today: I worked a ton on my novel yesterday. Read the entire thing over the weekend, and it flew! A good sign. Maybe I just needed some space from it. I gave some of it to Manic Mom, who is a writer, and to my friend Tim to read and also some to Mom and Dad, and Guy…Rude, who reads a lot. Guy had a lot to say that was helpful, so I pumped those thoughts right into the draft. Laura, Emily, Susie, and Dori have already read it, and Beth has already read some. I’m getting ready to send it to my agent, who is a dear, and tells me I gotta be me, and that I can still write what I want and make it marketable, n’est-ce pas?

Also did some homework with Nat, a new thing. He is so sweet, so here, and talking more all the time, though not a lot, but more easily. He is joy on legs. This homework was too easy for him: word searches and stuff.

Ben had a playdate, one of his favorites, Chris. They played solidly and yet it was not hard to get Chris to leave, which is sometimes the case. Benj is going gangsta lately, wearing a knit skull cap, long tee shirt and baggy pants. Ultra cute. Uh, sorry, I mean, cool.

Max is not home yet, as usual (almost 5 p.m.). He goes to Yaz’s house because Yaz does not have a laptop, but Max does, so they are all geeked up together over there. The Star Wars light saber has been out on the coffee table, so there must be a discussion of a movie or Halloween going on. I still can connect with Max often, usually over humor. He showed me a funny list, of items that “did not make it onto Wikipedia.” Really funny, random stuff. I am so proud of his sense of humor; he is truly the best of Ned and me.

And where, oh where is Ned in all this? My darling, still at work for another hour, will be so happy when he comes home and smells meatballs cooking.

This is my one year as a blogger!!! Happy Blogoversary!
(But, did I mention that I HATE Blogger? It SUX!!!! I can’t get my pics onto it anymore. Max is telling me to go to WordPress, a suggestion that makes Ned groan. Any other opinions on that?)

What a wonderful year it has been, other than the bad parts.
Good: 1) Book success; 2) Nat’s communication success; 3) Ben’s social life blossomed; 4) Max is acing high school; 5) Ned loves his new job; 6) Attended three galas; 7) White House dinner; 8) Cape vacation; 9) Learned to belly dance; 10) Wrote a pretty good novel; 11) Republicans having a lousy time of it in Congress; 12) Massachusetts may end up with a Democrat for Governor, first time in 16 years; 13) Kept weight off (20 pounds) for four years now; 14) Gave/giving tons of talks; 15) Got elected to Town Meeting

Bad: 1) One very painful relationship, which I still sometimes miss (that’s also bad!); 2) House too expensive for us; 3) Can’t seem to write another non-fiction; 4) Knee injury; 5) Car too expensive; 6) Lifestyle too expensive; 7) Eric Clapton no longer any good; 8) Bob Dylan’s voice is worse than ever; 9) War in Iraq goes on; 10) Tough year for Israel; 11) Got elected to Town Meeting

And today has been a wonderful day:

1) I love my new gym!!!!!
I linked to it in case any of you female readers want to join and live nearby. If you join, tell them I sent you and I’ll get some cash! Join me in the Wednesday morning Belly Dance class!

First, I tried spinning, which I had never done, but had figured I was a natural for it since I love to ride my bike hard. The instructor knew me from a gala we had attended together! She showed me how to use the bike, how to adjust the flywheel and the three different riding positions. Then she introduced me to the class, (as a “famous author” and they applauded me) which was full of slim, ropey-armed women my age and older. I figured, great, no problem!

Twenty minutes into it I think I was sweating blood. My throat felt as if I had swallowed sandpaper, or maybe glass. I had no water, but a woman gave me hers. My face was hot scarlet and my hair was clinging to my head. I had to stop. I did the elliptical after that, and ran into my friend Ruth! She told me I should take a dip in the hot tub, even if I had no swimsuit.

So I did that. It was one of those with all the churning bubbles. That felt amazing on my overtaxed muscles. (See, liberal that I am, I never mind overtaxing in any sense, but I understand the need for occasional relief from it!) Then a shower: they had gorgeous shampoos, conditioners, and soaps in pumps in every beautifully tiled shower.

I felt like a queen, or perhaps a princess…

2) Then, home, and Ned took the boys out to buy me birthday presents. I called Laura and caught up. She is finishing her kitchen; they have had a hell of a time renovating it, but Mom tells me it is gorgeous now: salt-and-pepper granite, cherry Shaker cabs, sage green walls, Wolfe range with fat red knobs, Subzero fridge, hardwood floors! Hooray for Syeestyer! I love it when my loved ones take care of themselves. Thank God John loves to cook, cause Syeestyer sure don’t even boil water! She looks great sitting at the table, though!

3) Caught a woodpecker on my house. Ran outside, yelling at him and throwing acorns at him. He flew away. Problem solved. Right??? (Really, how do you get rid of a woodpecker? Turn on your sound and travel down memory lane: Hahahahaha! Hahahahaha! Hehhehhehhehhehheh)

4) Ned got home and took me out to lunch in the South End! This is Boston’s hip and edgy part of town; kind of SoHo-ish, very gay, very young. So I wore a new mini skirt (bought marked down at Anthropologie; see, Mom, I can be taught!) and black tights and my Lulu Guinness maryjanes (definitely not on sale, from SoHo).

I love blogging and I love October because all kinds of yummy things usually happen this month!
1) Blogoversary
2) Birthday (October 18)
3) Halloween

This post made Ned and me laugh so hard we nearly choked. (Don’t be lazy, just click on the damned thing, you won’t regret it!) BTW, I love cats, as well as Katz.’

This counts as a blog post, but you know I’ll be back with thomething far more pithy…

Off to my new gym — I hope the ladies aren’t snooty. Well, fuggem! I’s needz teh workout b/c of da travL.

On the back of a cartoon coaster
In the blue TV screen light
I drew a map of Canada
Oh Canada
With your face sketched on it, twice
Oh, you’re in my blood like holy wine
–Joni Mitchell, “Case of You”

I am totally in love. With a city. With people in this city. Maybe with a country. I love Toronto. I love Canada! I would love to live here. In parts it looks like midtown Manhattan – and certainly the women are every bit as stylish – and in parts it looks like Greenwich Village, with funky, beautifully painted storefronts mixed with old-fashioned mom and pop stores. Some areas look like Georgetown. Other parts look like Chestnut Hill, Massachusetts, with large turn-of-the century Colonials and Victorians, and still other parts look a little more blue collar, with 1930’s brick houses, like neighborhoods of Queens.

The people are a very interesting mixture of sophisticated and varied ethnicities, and yet also wide open friendly, like the Midwest, like the people I met in Minnesota and Ohio. I had the opportunity to take a walk this morning down Avenue Road to a classic diner, where they took very good care of me; there was a grandmotherly waitress and the flirtatious owner, who told me I was beautiful and made me a fantastic feta omelette (“Poof! You’re a fantastic feta omelette!” my mother would say.)

But this is just skimming the surface of all that happened. Going a little deeper into my two days here, I spent a good deal of time (lunch in and tour of the CN Tower, with my old Israeli boyfriend Gabi, whom I met while I was on Kibbutz HaHoresh for two weeks in 1978. I was fifteen, Gabi was twenty. He was an ebullient young man back then, quite handsome, like a Jewish Alec Baldwin, with droopy blue eyes that I just melted for and, husky voice and easy smile. He showed me a very good time when I was in Israel – too good to go into here – and at the same time he was a good boy.

He is still a good boy. And a really good soul. (Still very handsome, too! Those blue eyes now have crinkles on the sides, even better…) I was so pleased to see that that high spirited young man still exists. He has two lovely kids (a girl Max’s age) and just seems brimming with warmth and generosity, like the rest of the people I came across here.

And then, there was the Conference. I saved the best for last. I am just beginning to process it all. The Autism Acceptance Project that Estee Klar-Wolfond put together on her own, where she assembled a week’s worth of lecturers – authors, academics, and artists, some of whom are autistic – and all of whom, like me, wish to shift the paradigm around autism. This was a very moving and informative evening, with equal participation between panelists and audience.

One of my fellow presenters was author Valerie Paradiz, along with her teenage son Elijah. Valerie wrote the book, Elijah’s Cup, several years ago, a memoir of Elijah’s and of her own increasing self-awareness and incorporation of autism into their lives (both Valerie and Elijah are somewhere on the spectrum. They call themselves “Spectrumites.”). Valerie covered a few points in her talk, about what adolescents with autism need, for nuturing, and to know about themselves and the world. Valerie is the founder of the ASPIE School, (now known as the Open Center), which, in my view would have already been enough (dayenu). How many of us fantasize about starting a school for our autie kids – I know I do but Ned says I need to get real – but we just don’t because it is mind-blowingly difficult. Yet Valerie did it, and it has been a success. She is now researching gender and autism, questioning whether there may be more females with autism out there, but that the symptoms are different because women and girls are generally more outwardly adept at social skills (no offense, hombres, mais c’est vrai) but that inwardly there could be the same confusion and overstimulation, sensory-defensiveness, etc. (This stuff made me think: could I be on the spectrum? Would that explain some of my feelings of alienation, confusion with how certain kinds of relationships work, discomfort with same, and

The huge need/desire to have space/be alone
on the computer rather than phone,
and with very few friends that I can really really tolerate and call my own?
The inexplicable vicissitudes that happen with friends
The alienation that sometimes never ends.

(Who knows? I am interested in finding out. And since autism is most often genetic, why couldn’t I – and Ned, for that matter – be Aspie-ish?)

Valerie is also in the midst of creating a model program for Aspie adolescents at NYU, which I find thrilling news. The adolescent period in the life of any child can be agony but for someone who has difficulty understanding or navigating social conventions, it can be deathly. Valerie had some very good common sense ideas for how to talk to a child about his autism – and she is very much of the mind that one should, in order to reduce potential anxiety and confusion that child may have about himself vis a vis the rest of the world. It made me think that I should and could talk to Nat about his autism. I really do not know for certain how much he is capable of understanding, but there have been many times in his life where he demonstrated that he knew everything that we were saying and that was going on around him. Certainly with our new home program (that has now met three times) I have already seen evidence that Nat knows quite a bit, but just needs to feel confident and needs more comfortable practice. These therapists really know how to make him smile and still do work. There is none of that forced ABA-style drilling, although they are drilling. It is much more organic and fluid, even though they are covering a lot of material in terms of vocabulary and grammar training. Here is an example of how even a “break” works:

“Hey, Nat, it looks like you want juice! ‘I want juice, please,’”
“I want juice, please.”
“Sure, Nat! Hey, Nat, what do you drink out of?” looking at the cup.
“cup.”
“’I drink out of a cup.’”
“I drink out of a cup.”
“Yay, Nat!” Gorgeous smile. “And what do you like to drink?”
“Juice – “
“’I like…’”
“I like juice.”
“Great, you like juice! I like juice, too.”
And so on.

Probably the best thing about our own home program, however, is Emily, the young therapist. I think Nat has a crush on her. She could be played by Anne Hathaway, the young woman who was in The Devil Wears Prada. Emily seems to really enjoy Nat. One interesting thing that happened was that he started touching her hands, and I tensed when I saw that because that is almost a
lways a sign of his tention, that he is going to scratch your hands or pinch them.

But Emily did not know this, which was a good thing, because she put the best possible spin on it, and she smiled prettily at him and said, “Oh, you want to squeeze hands?”
And Nat said, “Yes.” And that’s what they did. So now that’s something he asks for and she gives him. With this training: you ask, you get.

(See, flirting goes a long way. It can build happy connections, but you need to keep your wits about you. Like mother, like son.)

My mind is full and jumping all over the place, from last night’s conference and thinking about what this means for Nat. I guess it means that I am far more optimistic than I have felt in a long time. Valerie and the others gave me such a feeling of the way the autism spectrum sometimes works. One woman kept standing up and asking questions, making comments, and it turns out she is autistic and so full of things to say. Maybe when you are delayed in your language development, and then you finally find speech, you are just overflowing with it. I can completely understand that.

She and others made it very clear that with autism, development can happen very, very late in life. We all know about the late talkers, for instance. Valerie’s son Elijah was a late talker, and then an echolalic talker, and he eventually found that watching comedy was a good way to learn about social timing. He started by watching Charlie Chaplin. All of the silent physical comedy was easy for him to understand, without words to process. He then moved up to other comedians, until he started telling jokes and now writes his own material – at sixteen – and performs it in comedy clubs! And he is very funny, and very dear. I had dinner with him, Valerie, and Estee. Elijah reminded me of Max, in his interests and affect (interesting to note that Max does NOT have a diagnosis…I’m filing that one away for further inspection). But he reminded me of Nat in the way his language progressed over time. I got to thinking that perhaps with time and the right approach, Nat could definitely become more limber in verbalizing his thoughts and more practiced at conversation. This may seem painfully obvious to some of you, but to me it is a revelation. To think that that door is still partially open is like a miracle to me, in fact I’m sitting here in Pearson Airport trying not to cry. I am putting my foot in that door with our home program and I am keeping it open with my will and hope. Very strong stuff; don’t mess with a mother’s will and hope.

Valerie, Elijah, Gabi, and Toronto, you are now in my blood, like holy wine. Oh, Canada.

I woke up at 5 a.m., to dark rain. But I don’t care, unless it makes my flight dangerous (I’m going to Toronto today to participate in Estee’s conference, The Autism Acceptance Project: Redefining Ability and Quality of Life — with such a subject, how could I not participate??!! Very new and exciting stuff.).

My presentation is a power point that I used to call “Extreme Parenting.” But now I call it “Making Peace with Autism.” I talk about the arc of our family life, broken into roughly three phases: 1) Worrying and Wondering; 2) Diagnosis, Learning Curve, Grief; 3) Understanding, Acceptance, Connection.

I also have some “talking points,” such as:
1) Trust your gut;
2) Figure out your priorities;
3) Get the facts and support;
4) Be as eccentric as you need to be;
5) Give yourself (and everyone else) a break;
6) Success is how you define it

I illustrate these points with excerpts from MPWA and slides from over the years. I talk in between about this and that, stuff that just happened, stuff I’ve been thinking about (like the disability baggage one carries around, the meaningless meaning of terms like “Low-functioning;” — I love to end with that one and then to show pictures of Nat being bar mitvhahed and riding his bike with me. Low-functioning, my Seven-For-All-Mankind blue-jeaned ass!

Look at my baby. Natan-El, “Gift of God”

The other day, after I wrote Dancing With Myself, Ned pointed out that I hardly ever blog anything good about my mother. I was taken aback by this, and I wondered if it were true. After Mom read that post, she laughed into the phone, saying, “I wish I’d been a better mother.” But I heard that little twinge, that ache.

This is the last thing I want her, or anyone to think!

I told her that she was a great mother, is a great mother, and that we are all human and I am fascinated with looking at that human, a.k.a., difficult stuff. That’s just me. I don’t know how to begin expressing what I feel for her, it is so complex, and so much. Dad is easier because he is so different from me, he is funny and really stands out as the Head of the Family. I can stand back and observe him and articulate the Dad-ness of Daddy.

But Mom. Oh, Mom. Pardon my lousy poetry, but I need to post this:

Today I have been a good mother. It feels like it has been a while. I hate that. Why is it so hard for me to suspend my stuff and transition to the kids? What is the block to just sitting down with them, or putting them in the car and going somewhere with them? I still do not understand that. I am very dismayed that it still happens to me, after all these years. Maybe it is because Ben doesn’t like going places like out to a park, on bikes, the beach, or malls (unless there is a Lego store). Nat doesn’t say where he wants to go, but I cannot honestly say it is because of Nat having a potential tantrum; it’s been so long since he has been difficult in public. But maybe it is partly that, because it doesn’t take much to make someone gun-shy. The only time I saw Nat showing an interest was when I bought him a pair of professional cleats for his soccer practice from this buying guide at hereon.biz as even my younger brother who is a coach for an ivy league high school team uses the same site to compare and buy his cleats.

I believe my reticence is deeper than just Ben’s intransigence or autism-tantrum malaise. I think this is an issue of existential inertia, whereby I can’t seem to move myself out into the world, even when out in the world is a better place, psychologically or geographically, than where I am. (My dad would call it the Roman phenomenon of “Sittus on Fattus Buttocks.”)

Also, there’s the physical explanation: I was away for an overnight in Ohio and slept poorly for three nights in a row. Last night was the first night I slept really well. So I felt bouncy today. I felt like I knew how to keep moving, what to do with myself. I did some vacuuming, straightened up the house, washed bath towels, returned something for Max, sewed a hole in a slipcover, unclogged a toilet, watered and groomed indoor plants, and shopped for food. I felt really good just getting all that done.

Then I sat down on my windowseat and Ben showed me his latest comic he had drawn: The Egg Man. It is about an egg and what happens to him. It is told in the first person, and the egg man is not a happy being, because, of course, he gets eaten in the end. It is beautifully drawn, funny, and sad. Oh, Benj.

Then I took Ben and Nat to McDonalds, a common denominator, (Max was out, on Newbury Street, with one of his girlfriends; yes, he has around three at this point!) and we enjoyed our junk food. I dragged them into a shoe store with me (I desperately need to get knee-high, high-heel black leather boots to tuck my new skinny jeans into, and ballet flats for belly dancing). Mistake! They hate those kind of stores. Nat behaved great; Ben was atrocious.

Onto the toy store. Nat wandered while Ben selected a small Lego kit he had saved up for. I made Nat choose a tactile toy to buy, and we went home. We decided to go see the new track, which has been redone and the new NFL fake grass they’ve put in, but there was a football game going on so we couldn’t park.

Back home, we started to take off our shoes and unwind again, and Nat picked up a book that he really wanted to look at with me. He could see that it said “Special Olympics” on the cover and he was very eager to see it. It is Roger Corman’s photographic essay book called I Am Proud, and Tim Shriver lent it to me. Nat loved it! Page after page of swimmers, runners, soccer players!

Then my friend Lori knocked on the door. She and Andy were going to a nearby farm to see the frogs and pumpkins. So we went along. They had huge pumpkins there, misshapen and glorious ones that had to be almost three feet in diameter. Pimply squash, poxy gourds in so many colors! We saw the frogs, and watched a yellow Labrador Retriever jump into the pond, and then stood back while he shook himself off. The sun was blazing hot. We needed a drink, so we went into the market to get water. I bought the boys chocolate pumpkins, fudge, and candy apples, as well as corn for a cook-out tonight.

Ben was not happy with his apple (of course!) because the candy was gooey, not hard like a red lollipop (I secretly agreed. I think candy apples should only be the hard red candy kind.) Plus they had coconut on the outside. But Nat just quietly and voraciously chewed it up and then sucked down his water.

Then home, and rest. The therapist is coming to work with Nat soon. Ben is now watching cartoons, but I think it’s okay. We did a lot, for us.

It is only now getting light. Even in the semi-darkness of dawn I can see that the leaves on the trees are past their prime, with a brownish cast to them, set off eerily by the orange street light. I woke up way too early this morning; my mind is already on the go, frenetically bouncing from topic to topic, trying to locate the cause of my buzz.

And it’s Nat. I am breathlessly watching new progress and wondering what to do to nurture it, and what it’s about. Of course, I suspiciously fear talking about it a little bit because I don’t want it to disappear. I know that is “magical thinking,” but without enough sleep it seems more real to me than in the comfort of soft, yellow daylight.

Nat is smiling more than ever. He seems more flexible, more willing to do anything we’re doing. He also seems more jittery; he mutters to himself constantly, in his own language and he will not let me join with him in that. But I don’t care. I feel his happiness so clearly, he could be spouting farts and it would be okay with me. Though far more problematic with the public and his brothers.

In her very articulate and thought-provoking blog, Kristina Chew has brought up the concept that stings like a bee, and I don’t mean Mohammed Ali: the whole issue of “high-functioning” and “low-functioning” in autism. I remember when Nat was first diagnosed, and he was termed “Fairly high-functioning.” Now, he is more frequently said to be, “fairly low-functioning.” I believe the designation is all about how much a person talks. As I said to Kristina in her comments page, what a completely Neuro-Typical-centric definition of functioning! Why the premium on talking?

Or is the definition even more insidious? Is “high-functioning” code for “like normal?” What does that mean? “Acts like a ‘typical’ kid?” Meaning what? Mouths off to parents, dresses badly, considers Yes to be great music, pretends to be interested in high school clubs only to get into a good college, is really only looking to get laid or as close to it as possible without consequences? (Oh, sorry, I just described myself as a ‘typical’ teeenage girl back in the 1970’s). Oh, yes, I would have been considered ‘typical,’ and ‘high-functioning.’ You could not shut me up! I was an A student, I was on two teams, (field hockey and track) I always had a boyfriend, had a best friend, was part of a group of kids just like me, I was in National Honor Society, Ski Club, Latin Club, went to an Ivy League school, blah blah blah .

Which brings me to my point. Nat is, perhaps, none of the things mentioned above. Well, he is on more teams, however: swim team, soccer team, basketball team, and maybe ski team (we’ll see how it goes). Nat does not go after girls (or boys); he is not in any clubs (his school does not have clubs). Nat wears whatever I put in his drawers. He doesn’t know from Abercrombie or AE. Nat will not tell me what is on his mind.

But neither will Max. Maybe for different reasons. Or maybe because neither of them knows how to figure out how to express such a thing.

But, Nat, as I have said, is on at least three teams and has been on more in the past. Nat helps me make dinner, clean the house, bring things in from the car, mow the lawn. Nat eats anything I put in front of him; any concoction I’ve attempted in the kitchen. Nat rides a bike, uses an iPod, reads, does all of his schoolwork without complaint.

Nat had a bar mitzvah. Nat says the prayers at the beginning of any holiday we are celebrating. Nat will always give you a piece of whatever he is eating.

Nat has his own language which he does not want to share with us. Nat likes to pace or lie around on the weekends, rather than I.M. with people or hang out at a mall or spend money. Nat may not even understand money, but he does understand the moment I am finished paying in a restaurant, because he waits for that before he stands up.

Why not make “high” and “low” functioning be about how happy a person is? In that case, I am, half the time, “low” functioning. Nat is far more “high,” in that case.

I can’t begin to convey the specifics of what makes Nat a person; a full, deep, complicated young man. I know what I feel when my eye picks him out, walking back and forth in a crowded airport, and I make fleeting eye contact with him, and there is a burst of lightning between us that I know he feels, too. He just doesn’t go on and on about it the way I do. He notes that I have arrived (yesterday at Logan airport), and instead of pacing back and forth, he starts walking straight, out of the airport. It’s Mommy. Yes.

How do you draw a definition around an entire human being? “High.” “Low.” It is about as telling as a chalk outline of a crime victim. And as dignified.

Sitting here on a big soft white bed in the Beachwood Hilton in Cleveland Ohio. I’m giving a keynote in a few hours. I actually slept well; it probably helped that I had two glasses of wine and an Ambien. I still woke up at 2:30 because of somebody out there in the hall, but I drifted back to sleep. I can’t believe these pillows, how soft and yet firm (enough) they are. Nat would be in hog heaven here.

I brewed their Lavazza coffee with trepidation. One of my peeves in life is bad coffee; but this stuff wasn’t bad. Nice mug, too. My favorite coffee is Peet’s French Roast; even better if Ned makes it before I get up. Then I come down and bring him his mug, the big yellow one, with two teaspoons of sugar! I kind of like Starbucks — who doesn’t, despite it’s being the Microsoft of coffee, gobbling up every street corner in America, putting all the smaller coffee joints out of business, turning America into one giant strip mall, yadayada — but only a grande decaf breve misto in cold weather and and iced decaf in hot weather. I like Starbucks socially. It is my office; it is where I meet friends and colleagues for a nice hour and a half. Sometimes I write there, but rarely. I prefer being alone in my little nest in the the windowseat.

So now I’m in a little nest in the hotel bed. I wish Ned would come with me on one of these trips. I never remember how much fun it is to be in a hotel alone. I loved going to dinner by myself last night. The bar was right in the other room and they were playing all the trashy Top Ten hits I listen to when I work out! After I had my comfort food: glass of pinot grigio, caesar salad, french onion soup, a little of the bread (! That was my dessert) I went into the bar. It was strange. I have never gone to a bar myself. Never. I got a wine and started I.M.ing Ned, telling him what was going on. A lot of men, everywhere. Sports on t.v. Women dressed to the nines (except me, Ms. Laptop, bloodshot-travel-droopy eyes and blue jeans). I was in Testosterone City. A fun place to visit, but I wouldn’t want to live there. A gorgeous man named Steve came up to me and asked eagerly if I was looking at porn. I almost told him he needed to work on his line. But I told him I wasn’t, I said I was I.M.ing and he offered to buy me my next drink. I said, “sure,” but I knew I was only having this one. Maybe I should have just said, “No thanks.”

Halfway through my drink I got the feeling I should go to sleep. I was slurring my I.M’s. So I went back upstairs to my room and finished I.Ming with Ned, and also called him one more time on my cell. It’s fun to travel alone but I miss him so much. He’s like part of my skin, and sometimes that’s not so good (too familiar) and sometimes it’s fantastic and wild (guess when) and sometimes it hurts, like now, when he’s not here.

Coffee’s almost done; time to go down to the restaurant for breakfast and more mediocre coffee! Wish me luck this a.m.

Can you believe how beautiful this is?
Thank you, NancyBea. That blue just made my day. Wish I could grow those; all I got were leafy vines!

The other day Ned and I visited a possible new program for Nat, for the first time in about 6 years. He has been at his current school for so long, longer than any other placement he’d ever had. We love where he is primarily because they love him. This is not something to take lightly when your child is challenging to educate. Teachers and administrators, no matter how idealistic and good-hearted they are, may not realize the particular investment of energy, brainpower, and love that dealing with a kid like Nat involves, and even the best of them may become burned out, feel put-upon, etc. And mediocre teachers of the autistic — and you probably don’t know who you are — watch out!!!!

Since the summer ended, although it may appear to you that my energy has been devoted to writing, belly dance, illicit thoughts about men, and feeling sorry for myself, the bulk of my energy goes to my babies. I just don’t always want to talk and write about them because some of the words related to them are so deep and rooted that it takes a lot of energy to yank them out before they’re ready.

But my thoughts about my boys — and today I’m writing about Nat — have ripened to a degree where perhaps I’ll do a little harvesting, in honor of Sukkot, which I believe is tomorrow. (Five days after Yom Kippur, big fat yellow moon, days of plenty in the garden = Sukkot, the Feast of Booths, the celebration of the harvest.)

One reader/new friend suggested to me that perhaps my looking around at new placements had to do with Nat having asked a question for the first time. Perhaps, but there is more. Since August, we had reduced one of his meds (Resperadone) and switched him to a different SSRI (from Paxil to Luvox). Almost immediately, we saw a small awakening, because the Resperadone acts as a relaxant, I believe, and a buffer against potential aggression. But aggression has become such a non-issue — knock wood, knock wood, please God don’t take this away — that we felt we could adjust downwards. Resperadone is a serious drug, with potential devastating side effect, and we don’t want him on it at all, but a little bit has been necessary, and so we monitor it very strictly, along with a specialist at Children’s Hospital in Boston.

As a result of the decrease, Nat is more “on,” and more visibly nervous, too. (Poor sweetheart.) But we think that we can help him feel better just by helping him express himself. It all comes down to communication, being able to pull out what is in your heart (for me and for him). More and more, it appears to me that helping Nat express himself is the key to his universal progress and peace of mind.

So we have hired a consultant to work with him after school, in a very positive, cheerful way, to get him more in the habit of using words, to get that part of his brain in better shape. It is an error-free training, so there is very little frustration for him; they give him the answers when he doesn’t know them, and they vary the exercises so he doesn’t get too bored. I’m sure it is a bit boring for him, but he still gets enough down time in between.

The home program appears to be going pretty well. So Ned and I decided that maybe if Nat was going to continue progressing verbally, we should consider a placement that is the next level up in rigor but also in potential. This program is housed in a typical high school, about half an hour away from us, and is hugely vocational, but also has a lot of social activities built right into the day (and after school, and even at night). We visited several classrooms and could easily imagine Nat in them. The teachers looked bright and warm, and the program director had a bouncy, can-do attitude.

But I am far too old and cynical to fall in love with a new school program. I’ve been beaten down by high expectations and seduced by wonderful program directors and fancy facilities. Where Nat is now has a far more institutional feel, but inside, beyond the dreariness and rigidity, are many young, lovely teachers who think Nat is a star. If he slides into a bad period, they stick by him and help him remember how to act.

That’s always the piece that gives me pause: what if he has an aggressive phase? How will the new school handle it? Will they call me in at the smallest sign of pinching, hair-pulling? Or will they jump in and problem solve, still seeing Nat in all of his glorious potential?

Whatever we do, we are going to move slowly. I am not used to that, but that’s what is needed. I checkout out the program. I’m going to a meeting at his current school at the end of this month. I’m going to see if there’s things to tweak there. I’m going to look carefully at his progress and his work. I say, “I” but it’s really “we.” Ned and I are going to talk a lot about this and try to figure out if we can gently push Nat upwards, into a slightly more challenging atmosphere, and hope that there are plenty of capable, loving hands to pull him in and hold him there.

Did I disappoint you?
Or leave a bad taste in your mouth?
— U2 “One”

Today I faced up to a couple of pretty big truths. One, I can’t tell you about. But suffice it to say I made a little leap in understanding something about myself and I am feeling pretty good about it. Whatever happens, I am going to be okay because at least now I am clear and honest about how I feel, and about what’s going on.

I went out with Ned for a little coffee after dinner and celebrated my new understanding. Then we watched The Office and had some good laffs.

The other thing I figured out is related to the first in that it involves not forcing something. I have been forcing a book. Raping the muse. Not only that, I have been forcing a marketable book. For me, the only thing more deadly to my creative process than thinking “marketable” is an outline. I hate outlines. It’s strange how, I was sitting here today crying because I was realizing the first Big Truth (see above, and then feel puzzled because you don’t know what the f*** I’m talking about), and I wrote it all down, and then suddenly it was like a dam broke inside of me, and I was crying about my lack-of-book. And then it hit me: I have a God damned book. I have my novel! I wrote that thing all spring and summer and it is done and I have not honored it in the least, because I kept thinking how the next book has to be an Important one. The next book has to either be even more about Autism or about Something Big.

I have completely disregarded my novel as anything serious because I knew I was disappointing everyone. And I knew they don’t sell well. As predicted, my agent was not pleased about the novel idea because “they’re so hard to sell.” My editor was not pleased because she wants a continuation of MPWA. My friend Emily wanted me to snag this opportunity that has fallen into my lap, for a book that would no doubt make me Really Famous because of a certain connection I’ve made, and she knows an agent who can make it happen, etc., etc. I talked to that agent and, yeah, she’s really excited. I feel like EVERYONE wants me to write this Really Important Book, and I should. So I have sat down to write that Big Tome again and again and I just fall asleep. I went to start my Research, and I felt like a fraud. I felt the way I did in grad school, like someone eventually was going to point at me and say, “Ha! Look at her, pretending to do research!”

So then I tried to write it as a Susan Book, not a Big Tome, and I wrote three grafs and then felt only silence in my head. Silence that then made me want to weep. A writer without words is a very sad thing.

So today, while saying to myself about That Which Shall Not Be Named, “Why, why, why?” I, multitasker that I am, also thought about Dirt: A Story of Gardening, Mothering, and a Midlife Crisis. And I thought, a la JFK: “Why not, why not, why not?”

It may not be a blockbuster. It may not be a great literary Work. It isn’t important, and it isn’t the next big thing.

But it’s mine. And it’s already written. Now I should try to make it good. And find a new God Damned agent.

Even before I wanted to be a writer, I wanted to be a ballerina. I’m not going to say, “What girl doesn’t?” because that’s crap. My sister did not. Ever. She was into her own kind of stuff as a kid; I actually don’t know what she wanted to be when she was little (I will ask her). It’s funny that we say when we are little, “What do you want to be when you grow up?” and then when we are grown up, we like to think about what we wanted to be when we were little. When we are little we know ourselves in a way that we can forget when we grow up. I think back to me and I can remember how I thought, how I felt. It was still me, but so much more naive. I can still hear my young thoughts and I smile at how passionate and sweet they were. But I also long to be her sometimes because she knew me without a lot of grown-up discouragement and “reality” knotting up underfoot.

My cousin Karyn (back then she was “Karen”) took ballet, tap, and skating. Karen was beautiful, is beautiful, with long straight black hair and almost black eyes. Once, when I was around seven, I opened Karen’s closet and saw a long row of “flairy” dresses; this was what my sister and I called dresses that flaired out from a sash at the waist. One of those dresses was gold lame. I could not believe that someone my age could have such a dress! But of course Karen did. She also had a great little skating outfit. I did not understand why I could not have clothes like this and lessons for things like that but Mom and Dad did not think it was “for me.” I guess I didn’t push the point, but instead tried to accept how others saw me.

They signed me up for Modern Dance, which I hated. Everyone wore all black and cut-off leggings. I looked at myself in the wall that was entirely mirror and saw my round stomach and muscular thighs and thought I was tubby. The other girls looked like black sticks. The dance teacher, Mrs. Taube, though slim, looked lumpy to me in her leotard and tiny skirt tied around her waist. Why doesn’t she wear a tutu? I thought. That was what I wanted. I would see the girls who were taking ballet in the class after me, like a box of candies, all sugar pink and frothy. I don’t know why I did not ask for something like ballet or a tutu; maybe I did once and was told, “No.” Maybe I felt embarrassed for wanting it, when really Modern Dance was so much more sophisticated, kind of the Anti-Barbie of dance. My parents were not Barbie people, either, though they bought them for me. But see, I knew how they felt about it, even then. That might have dampened my enthusiasm along the way. Playing with Barbie, like wanting a tutu or a gold lame dress, were like my guilty pleasures, even before I really knew what guilt was. They were the things I was not supposed to like, and yet I did. And the not-supposed-to added to the thrill.

I pay attention to that guilty pleasure thing now because I think it will tell me a lot about me, and who I really am, versus who I am supposed to be.

Eventually, as a twelve-year-old, I did take ballet, but it was a similar experience to the Modern Dance. Everyone wore leotards, some even pink, but no tutus. We were too old and “serious” by then. Tutus were for the little kids. Of course we were not actually “serious,” because if you are “serious” about dance you start as a little kid. Too late, too late, were the words that flew around my brain like mosquitos that you can’t really ignore. I looked in the wall-mirror and saw my emerging womanly body and did not like it at all; everything looked misshapen and wrong, squeezed into a pink leotard, stretched tight like a birthday balloon.

Decades passed and ballet became a thing to watch, an event to dress up for at the Wang Center or Lincoln Center; a birthday treat. Swan Lake is my favorite. The music is unbelievable. Ned hates ballet but every now and then accompanies me. The person who loves to go with me is Mom. It is not ironic. Mom always loved ballet; she and Dad just didn’t see it for me. They did not understand me fully back then, and I did not know how to explain myself to them. I did not know how to stick up for myself about that kind of thing; sure, I never took crap from anyone and even punched a boy at the bus stop once, but in terms of revealing a deep, inner desire that others did not believe — that was fraught with shame.

Sometime around April or May I looked at that Shakira “Hips Don’t Lie” video. As I watched her dance, I felt something grip me, a kind of longing, a hunger, sort of like looking up in Karen’s closet and seeing that gold lame dress. I wanted to be like her. I wanted to dance like that. Only now, even though I’m older now and not in my first bloom like Shakira, I’m not afraid or ashamed of what I want.

And the wonderful thing about belly dance is, you can be full bodied; the more voluptuous, the better. There is no lumpy. I am now taking my second series of classes, with a new teacher. She is a real disciplinarian. She corrects our form, even down to how and where our fingers point. Last night I learned a shoulder shimmy and a belly roll. I did it perfectly after practicing at home for two more hours. Just like Shakira. Well, like me, really, but that was good, too.

Yesterday I went to my belly dance teacher’s store in Cambridge. Two double doors, shut. Frame painted deep red. I rattled the knob, and the clerk swung it open. I looked up, and saw costumes hanging overhead, and on walls and racks. Feathers, gold and silver coin belts, bright colored fringe, sequins, sashes. I felt happiness and a deep forbidden thrill wash over me and I stepped inside.

I love to do parodies. I am a lesser Weird Al Yankovic. Think of me as “Weird Gal Yank-it, B****”

Here is one I thought of before coffee, about my latest addiction: belly dancing, and the result, injuries. (Though I’m really okay, don’t worry! This is just for laffs.)

(See why I need a real costume? I’m dancing in a %##$# bathing suit!)

Coccyx (Sung to the tune of “Toxic” by Britney Spears)

Oy vey, can’t you see
I’m in the hall
I twisted wrong
I need to crawl
It’s dangerous
I’ve fallen

There’s so much pain
I feel faint
I need a bolus
Of the Tylenolus
You’re dangerous
For my tuchus

Two thighs
on the ground
Stars in my head
spinning round and round
Feelin’ nothin’ now

Chorus:
With a twist of my hips
I’m on the ground
My coccyx has slipped under
Taste of old age
–I was so proud
I’m addicted to you
But you’ve injured my coccyx