Susan Senator

Ned goes to work everyday but just knowing he won’t be back until Sunday makes me blue. I’m sitting here eating low-carb vanilla chocolate chip ice cream with a fork just surfing the Net, feeling sorry for myself! I’ll have to dance for an hour tonight, and with no photographer.

But, pig-out notwithstanding, a few good things happened so far:
1) Ned landed safely and we were IMing during one of the workshops he was in. Nothing like sexy, funny emails.
2) I got Beast a playdate in the afternoon with one of his best, best friends. They have been quiet for hours! Just the clatter of Legos and the high-pitched cadences of little boy voices. Sweet!
3) When he does talk to me, Max is a wealth of interesting information and the very latest in humor. Take a look at these three links that he sent me; I think they are hilarious, especially the knock-knock joke one (the second link)! Boy, did Beastie like that one! And I nearly horked my choc. chip ice cream laughing at the others.
3) In the morning I took the puppies to get their hair cut, at long last. In our family, that happens like twice a year. Max has been wanting to put blue in his hair. I am not the kind of mom who just says, “No,” outright if my child likes something and it is harmless. I discuss it with him (and with Ned) and think it over before crushing his spirit. No! I called my favorite hair salon and discussed the whole thing with Jen, who has had “every color” in her hair. She told me how they would have to strip his color out and put the blue in. It would be very permanent, with roots and everything. Max did not care. He seemed to really want it. So I discussed color correction with Jen, in case he hated it. Finally, we worked out a compromise: blue streaks.

Three hours later…

Now that’s a Max in a Million!

Do me a favor, as you read this, knock wood. I don’t want any Evil Eyes to come along and take this away. But — Nat has had a burst in initiative! It’s part of his burgeoning need to control the things around him, but I suppose that being a Control Freak is at the heart of every successful initiator, when you think about it.

He has become very concerned about other people’s business, other people’s routines. You may remember I reported a few weeks ago that when Ben refused to put on socks, Nat became upset. He does not like bare feet; anyone who has read that autism book Making Peace With Autism (hey, I hear it’s now out in paperback, quite affordable, makes a great gift!) would know just how much Natty hates bare feet. Anyway, after Ben kept refusing, and then when that Little Beast actually put on his socks and then took them right off, Nat yelled out, “I want to hit!” But he did not. That menschkeit MiniMan held it together!

You might also remember the coat incident. Not nearly as charming a story. My shearling is fine, but the memory of being smacked in the head again and again simply because of a coat not being removed still smarts.

Well now we have the laundry story. The other day, Nat saw our brimming laundry basket and said, “Do a laundry.” Laundry baskets, in his mind, are supposed to be empty, I guess! Well I guess I’m the sloth mother! Anyway, I said, “Okay, Natty, do it with me!” So we went through the house collecting everyone’s dirty stuff and Nat lugged the heavy basket down to the basement for me. How wonderful to be surrounded by big strong men! A dream come true. Max puts out the trash, Nat carries the laundry basket.

So, as always, I forgot about the load until it was congealed wet and solid against the sides of the washing machine. But Nat reminded me. We went down together and put it in the dryer. After the dryer had long buzzed, I remained upstairs doing my thing, whatever that was. Soon I hear Nat trudging up from the basement, but I thought he was merely bringing it all to my bed for me to take care of later.

I went upstairs a few minutes later, and the laundry was nowhere to be seen. But then, I saw Nat smashing a large pile of socks and briefs into his drawer: it was all the socks, (both his and Max’s), and all the briefs (both his and Ned’s). They all look the same; why not? Only I know the differences. I see a pile of sheets smooshed into a chair in the corner. I see my stuff laid out on my dresser! Ned’s tee shirts, in his drawer!

Hmm, “Where’s Max’s boxers?” Finally I look in Ben’s room. They were in there, I guess because Nat figured they were little pants and belonged to Ben!

So clever, such a self-starter, my Natty.

I am not a joiner. My boys and Ned are not, either. However, I was raised by people who were ambivalent about their joiner-ness, and so for a long time I did not realize I was not a joiner. So I would join groups, sign up for things, and then eventually withdraw/stop going/quit in disgust because the group thing would get to me. Then would come a long period of self-hatred because what was wrong with me? Why didn’t I stick with anything? Why did these people in these groups seem to speak a language that I could not parse? In my playgroups I would feel like I was an alien, the only mom not interested in discussing children’s clothing, diaper services, breastfeeding, or the cute thing our kids were doing. I wanted to get to know the moms as people, as friends. I wanted to talk about things that really interested me, like current events, how it felt to be a mother, husbands, boredom. Or why was my baby different from all other babies? (Ma nish ta nah ha yeled ha zeh mi call ha yeledim?)

The same thing happened in my book group, my one and only book group. I felt like the discussion of the book was always shallow. People were focused, again, on their children, or the snacks that were being served, or the decor of the place we were in. I’m as into decorating and food as the next person, but I think a book group should be about the writing, the characters, the themes, etc., and not whether to serve Chinese food when you “critique” Amy Tan.

And then there was our synagogue. I tried, as G-d is my witness. Not only did I join; I started a special education task force there. I kind of gently forced them to have education for disabled kids. The Rabbis eventually took it up like a favored cause. It was wonderful, natural, beautiful. I would tell them, the public schools have the law, but we answer to a higher authority!! I invoked Moses, too. And so, Nat got a Sunday School education for several years. So did Max. And then — stop me if you’ve heard this one — when it came time for the kids in Nat’s grade to choose their bar mitzvah dates, they all went ahead and chose them without telling us and we were left with only a Monday or some other reject date. The cantor was flustered when we went in to ask why this had happened, but there was nothing to be done. They had assumed Nat would not do a “normal” bar mitzvah, and so they had made it so. My heart broke. We withdrew and did our own bar mitzvah for him.

The other day my mother asked if Benj was having a bar mitzvah and I just said, “No.” Heavy, sluggish brown silence filled the car like a bad fart. She was really disappointed: that we would not rejoin a temple, and that Max and Ben never had one. I told her I don’t like bar mitzvahs. I actually hate them. I find them pompous, long-winded, boring, indulgent. I don’t know how much meaning they have to the kids participating. Maybe they have meaning. But I can’t stand them. It’s all personal, selfish, I admit it. I hate watching the other kids, dressed up, giggling. Not really paying any attention to their classmate.

Plus, there is the whole trauma of my own experience: I remember how I was excluded from the bar mitzvah circuit because my parents chose not to give us bat mitzvahs! (They sent us to Israel instead, but somehow, my peers did not get the memo, and never invited me to theirs even though I was in Sunday School with them through age 15.)

Mom wondered why we had done one for Nat, then. I told her that it was about the fact that we felt we had a lot to celebrate as far as Nat’s progress, but that there were no natural milestones for him. He goes to the same school, year after year, no rite of passage. No 8th grade graduation, no high school graduation. No award ceremonies, except for the Special Olympics. So, a bar mitzvah, created out of thin air. Nat’s had a lot of meaning for him, and for us, but that was an extraordinary circumstance, not some ritual forced down his throat. I didn’t have one, and I didn’t need one: my trip to Israel did everything for me and more. (Not the least of which was meeting Gabi, whom I am still in touch with, my Canadian friend. He taught me how to drive a tractor, and much more! 🙂 But I also saw the Western Wall; I still remember how it smelled. I slept on the Sinai; I visited Yad V’Shem, the Memorial to the Six Million; I swam in Eilat; I went to Lebanon, the Golan Heights, the West Bank; I met relatives; I climbed Masada; I went to Tel Aviv and Jerusalem and Haifa. What would standing up in front of that petty group of people at Temple Shalom have given me that would be better than that?)

I am not a joiner. I will not join a synagogue again in this lifetime. I probably won’t join a book group either. It is a miracle that I still occasionally go to my writer’s group. It is an even more blessed miracle that I have been able to attend bellydance class but I must do that. I have to get over my anti-group thing and stick with that class and be a novice and bad at it and ultimately do the recital. But I am terrified. This is making me so very vulnerable. I have no problem putting pics of myself dancing on the Internet but the idea of dancing in front of family and friends — EGAD!!!!

(I asked Max what he felt his religion was and he said, “I’m Jew–ish.”) Ben said, “I’m more into Technology.”

There you go. They’re American Jews!

Well I stood stone-like at midnight
Suspended in my masquerade
And I combed my hair till it was just right
And commanded the night brigade
I was open to pain and crossed by the rain
And I walked on a crooked crutch
I strolled all alone through a fallout zone
Came out with my soul untouched.
I hid in the clouded wrath of the crowd
When they said sit down
I stood up.
–Growing Up, Bruce Springsteen

When I was little, I only did four things with my friends or my sister: draw, play dress up, play with Barbies, and play Pretend games. Barbies I would play with any of my friends or by myself; mostly just trying on gown after gown and doing their hair and dreaming.

Laura and I would draw in the back of the car on all of our family trips: funny stories about twins and stuff like that. We even made up our own language and alphabet.

Dress up I would play with my friend Debbie, when our families would visit. I had gowns that were cast-off designer dresses from my grandmother. Once I put together a great costume for Halloween: a gypsy. It was early October, I think. I remember begging my mother to let me keep it on the entire month until it was Halloween, so that I would be perfectly attired. She said no, however. I think I managed, nevertheless, when Halloween arrived.

Pretend was my favorite, though. I would lose myself for days in the Pretend games I played with Bonnie and Sharon (my friends up to age 10, after which we moved, and I started middle school, and I became friends with Cynthia, until age 18, when she dropped me like a hot potato or piece de merde. With Cynthia, everything we did was gossip, clothes, food, and boys, boys, boys.) Bonnie and I once played a game that lasted three days, in which we were stranded on an island and had to live off the land. We twisted branches together to make our shelter, we made clothes out of grasses, and that sort of thing.

I just got back from a movie that has all of those best elements of my childhood: Bridge to Terabithia. This is a kids’ movie, and yet it was several huge cuts above anything I’ve seen in a long time, especially anything I’ve seen with Beast at my side. It is a simple story, about kids who are in need of a little escape from certain difficult realities in their lives, such as loneliness or bullying or inattentive parents. The boy and girl imagine a land in the woods near their homes: Terabithia. They fix up a treehouse and lug stuff to keep there! That is the childhood dream come true. They paint stuff and hang stuff and fight the enemy. Together they become stronger and more confident and happier, just like any of us when we get a really good friend who gets us.

There is nothing gooey in this movie, although the young sister Mabel did get on my nerves a bit, even with her penchant for Barbie play. She seemed a bit like a tiny adult, the most cloying kind of kid actor. But she pulled it off, in the end. The two main characters, the funky music teacher, and the boy’s father were absolutely terrific.

I detest the evil plot turn in the movie. Ben himself told me it did not have end that way. I heartily agree. I was sitting there next to him, crying my eyes out, thinking of loss and how hard it is to say good-bye. I have recently said good-bye to someone who wasn’t even always good to me, and yet my heart was twisting as I thought about it in this context. Let go, grow up, give in, move on. Sigh.

See my Tabblo>

Last night I practiced by simply imitating the Bellydance Superstars Live at the Folies Bergere DVD. I was amazed at how many moves I could actually do, though of course not as beautifully as those gals… Still, an extremely satisfying and grueling workout! With Beast and Ned watching and playing nearby.

A day of dreaming and nothing. Three boys home, too cold to play outside. I danced, I napped, read, I cleaned, I got a (silver) pedicure. I feel a bit like a parasite, however; a purposeless, adrift thing. One of those creatures that just floats around under the sea. I keep trying to do things of value, but it is hard to always contribute. I feel the need to justify my existence. Here’s my list: I am waiting to hear from two editors and my agent; what else is new? One editor has a piece I wrote on the new CDC numbers and what that means to me; the other is a piece I wrote on the American College of Obstetrics and Gynecology and their new guidelines for Down Syndrome, etc. where they will now test every pregnant woman and counsel her “neutrally.” So if that gets published — in the Sunday Globe Mag, no less — I guess I will be on record now as not being all that Pro-Choice. Life becomes more complicated for me, no pun intended.

I have also booked two more conferences: one is actually the Harvard Medical School annual autism conference, which is kind of an honor, I suppose. The other is another gig in Montreal. That makes three in Canada in the next year, perhaps one in Alabama, one in progress in Virginia, one in Sioux Falls, and one in NYC.

On the homefront, in the name of trying to be a good mom, I taught Nat how to do laundries, both colored and white. He was very interested. I also had him make his own breakfast and lunch. I really try to teach him things, help him grow, all the time. I took the three of them to Finagle a Bagle, because we needed bagles and because we needed to get out of here for a little bit. I got a Greek salad, and they got snacks. We ran into some friends there, which was nice.

But I feel so overwhelmingly cold, and kind of listless. So I googled some warm weather vacations which we won’t take. Jamaica, Bermuda, St. Thomas. All five of us on a plane! Makes me tired just thinking about it. What I really want/need is a vacation just with Ned but my parents are very busy these days. That would fix me up pretty good. Probably not gonna happen.

So here is my vacation, when I can’t do anything else: I daydream about bellydance. I imagine looking like Sonya, of the Bellydance Superstars (she is the last one performing on this little YouTube video). I have found the perfect outfit, which I would love to buy, and I just might. Maybe once I sell the second book, I will celebrate with buying this outfit. I still can’t imagine ever performing, however.

If I dance tonight, I suppose I will feel more worthwhile.

Yesterday was a good day, a two Starbucks day. I went to my gym with Mom and showed off the place to her, which was fun. Very hard trying to work out, however, because now my left hip is giving me trouble due to some overzealous bellydancing. Still, I did around 25 minutes Stairmaster and then 10 on the Elliptical.

After we were done we went to Starbucks and I had my usual (breve misto: like a latte but made Atkins style, with half-and-half foamed up). Mom had nothing. We talked about relationships, and how they change. It was really beautiful, sitting there in the lit window with her, looking at her very familiar lovely face, sipping sweet coffee, and exchanging stories about friendships: how they help; how they hurt; how to let go; how to know.

Later, after Mom and Dad went home I tried to nap with the ice pack on my hip (this works for me sometimes: to get deep under the covers with the ice and sleep with it on the sore part; I wake up with it feeling a lot better). I could not nap, however. I wanted to go to the bookstore and get some of the books Mom and Dad had recommended to me (The History of Love, by Nicole Krouse; A Fine Balance; The Emperor’s Children; Gesture Life; and Richard North Patterson’s Exile).

Nat, Max, and Ned were at Nat’s swim practice so I had Beast to myself. I asked him if he wanted to come and he remembered that he wanted to get the Franny K. Stein Activity Book. So I took him to my favorite part of town, Northern Brookline, the urban, ethnic, busy part, and we broused in Booksmith for a while (where I had my very first reading; truly the best bookstore on earth).

When we were done with our purchasing we went to Starbucks and I got him a soft molasses cookie and a water. I had a breve misto, decaf this time, and a very different time than the morning, but equally enjoyable. Across from me, a dear little face, messy hair, dark intelligent eyes, tiny nose, perfect little lips, newly emerging slightly crooked large front teeth. More delicious than the cookie.

Guess who’s coming to visit today…
I’m very excited. Have not seen my loco parentes since early December. They been globetrotting. So today, I am ready for some sweet-smelling hugs, laughter, maybe a little annoyance, intense conversation, gift exchange,(there’s always some occasion to celebrate!) long looks, and making up for lost time. (I have stuck Laura into this Tabblo because she is inseparable from the Senator family mix and memory machine). I hope to see her beginning of March, however, for more of the same! Here’s a little quiz for my readers: which one is me, in the little girl photo on the left?

Perhaps it’s the color of the sun cut flat and coverin’
The crossroad I’m standing at
Maybe it’s the weather, or something like that
But Mama [Daddy] you been on my mind.
–Joan Baez and Bob Dylan

… See my Tabblo>

Nothing cures like time and love.
–Barbara Streisand

Parenting has so much to do with faith. And when I say “faith,” I am not actually talking about faith as in Religion. I am talking about the inner voice, the unprovable, the feeling you go with that you hope/wish is the truth. In Nat’s case, I wish I had found that sort of faith earlier, and believed what my gut was telling me. I even had dreamt about him in utero, and still I gave this no credence. In the dream he looked the way he did when he was four. He was standing in my sister’s childhood room and laughing. Laughing! How important a role his laughter has played in my life! This was my intuition, or Nat, or something, telling me loud and clear that everything would be alright. But I did not harken to it. At the time I remember thinking, “Oh, I guess that means that if I have a boy, it will be okay [having a boy rather than a girl].” That’s what my naive little self thought about; the gender! I want to hug that girl I was, and shake her at the same time and say, “Shtummy! Get with the program! Life has a big surprise in store for you and you’d better get some rest so you’ll be up for this!”

I have said before that my relationship with Nat often feels like a leap of faith. I believe more than can prove that he feels certain things. About me, about everything. I look, I observe, I have gotten to know; but mostly, I feel. Maybe I wish. But who can contest this? I know Nat better than most, I would say. I absorb him, I sit next to him, breathing him in, wondering how this is that same person who showed himself to me as an unborn baby. This is that same boy who seemed unknowable, yet whom I have always known so well. This is the boy who has always been a delight to be with because he is pure Id, he just is who he is, and if he smiles at you, it is nothing short of a gift. (These days he smiles the most when I pop in the Bellydance Superstars DVD and he gets to watch all those pretty girls on the stage!)

My faith in Benj has grown lately. I used to be so afraid for him. I worried that he would have trouble socially because his development was quirky for a while. I had a certain feeling of doom surrounding me when it came to Ben and his friends. But by third grade, he has figured it out. He has his own little posse of boys. He has absolute faith in his appeal; utter confidence. How did I, such an insecure person, manage to give him this? Or was he born this way? I found that today, as he ran across the back yard and up the hill to a friend’s house, on his own, for the first time, I was so proud of him and so relieved I could have cried.

People really do develop and change, for the better. With love, understanding, hard work, and time, so much can happen. Just have faith. That is so simple, yet so much.

A cold and frozen world out there, but inside, my mind is alive and warm. So here’s a list of what I’m thinking about not necessarily in order of importance:
1) Should all five of us go to the Atlantis in April, like we did five years ago, our last winter vacation together?
2) Or save, save, save the money?
3) Will the costume really work once the bead fringe is added?
4) Should I take M and D to the bellydance club? Will they like it, or act weird about it and make me feel weird, too?
5) Where is H and H?
6) Will 30 Rock survive?

Cape Cod and the Atlantis … See my Tabblo>

Eighteen years ago today Nat’s life began. Ned and I had been trying for a little while to get me pregnant. We went out to a Thai Restaurant for Valentine’s Day dinner. Just the two of us! Imagine that! What babies we were! 27 years old, earnest little people dreaming about their first baby. I was so clueless I thought I’d have a girl. Ha! As if.

I don’t remember the Thai food although I’m sure I had Pad Thai because back then I was a Noodle Eater. I do remember the romance that followed. And the thing I remember the most was that at the best moment, I closed my eyes and I saw, in my mind, swirling black concentric circles with a burst of black in the middle. I knew — or I felt, or hoped — at that moment that I had conceived.

And of course Nat’s due date was November 14, but he has always had a rhythm of his own and he did not show us his beautiful self until November 15!

I can’t believe how beautiful this Tabblo is. It makes my eyes happy. The artist lives in Vancouver and is very talented. Delphinium is my favorite flower, and its beauty if proof that God exists. Lucky bees! You an agnostic? An atheist? A Nietzsche Freak? A Doubting Thomas? Fear not! Look upon the delphinium and your heart will know the truth.

The blue shown here is my favorite color (I guess? I also love baby pink, rose red, and jade green). I painted Baby Benji’s room this color when he was born; actually, every boy of mine had a room this color at one point in his little darling life. Just imagine a bellydance costume with these colors! Actually, I have many of them already. Maybe now I’ll make a delphinium blue bra top with pink and green beading and use the rose red petal skirt I already have (or the jade green one I just made!) and maybe I should now try to make a cabaret style belt with fringe, also in delphinium blue.

And then my hips have to heal, but how? I can’t stop dancing. It is like that girl with the red shoes in the fairly tale, except my feet are bare!

I got a new cellphone today and I guess I’m a primadonna but I don’t like the shade of pink! It is a flashy fuschia instead of a true pink. Max says, “Whoa, it is mad thin,” which means it’s good (of course, he has the Krzr, which is even thinner. He is completely in love. With the phone, that is. Although he does not do too badly with the opposite sex, either. The other day he told me he was IMing with Monique, Dina, and Mikki all at once. Yo Max). The only person I IM with these days is Ned, which is lovely but not three admirers at once!

The phone I got clashes with itself when it is all lit up. Kind of a neon periwinkle, next to a flashy, trashy, magenta pink. Hmm. Not my choice of combo, that’s for sure.

Max took apart my old phone and said, “Whoa, this thing is old.” Just like me, in his view, I suppose.

I hate a day like today, although it started really great. I went to Ben’s breakfast share for the third grade, which was about the 50 states. Ben’s state was New Jersey because his cousin Kimmy lives there and he adores her. Each kid did a state and then they stood there in the front of the room and sang a song about the “nifty fifty” states. They stood there, faces earnest, working on remembering all the words, singing proudly and seriously. It was just about the cutest thing I’ve ever seen, right up there with Benji’s baby feet. Then I had coffee with a fellow autism mom whose kid was Nat’s first real friend. She and I have a lot in common, needless to say, and she is kind of a fascinating person, full of plans and hopes for DJ, just the way I am for Nat. Then I had lunch with a new friend, which was absolutely lovely and fun. He and I have a lot in common, too, in terms of politics and certain basic beliefs.

I guess most of my day was great, as a matter of fact, until 4, my witching hour. My mood swings come back around then. I get hungry and tired then. I take a nap, wake up, and sometimes, like today, I become kind of a carb-seeking zombie. I bit the M &Ms; out of most of the M &M; cookies. Then, to assuage my guilt, (and shift to a different mindset), I made a bowl of popcorn and pretended I was going to share it with Max and Nat. But I never called Nat in from the livingroom (Hey, can’t he just come in by himself? Just how far does this initiating problem go? I can’t even assume he’ll come in if he wants popcorn?? Is it my responsibility to give him food, too? Oops, oh yeah, I AM HIS MOTHER, D’oh) And I ate and ate in a buttery, salty carb haze while Max played with his new phone next to me, only occasionally dipping his large male hand into the bowl. Double D’oh!

There’s a meeting tonight of all the autism parents in my town. Of course I should go. Of course I don’t want to go. I get sick of being an activist. I get sick of all my problems and the problems that just go on and on. I am annoyed at myself for eating popcorn (yes, yes, and M & Ms though they don’t really count because it is like breaking up the cookies and we all know that broken cookies don’t count).

Mostly, I feel too cold to do anything productive; that’s why I’m here. Yesterday I was Ms. Productive, whereby I wrote two essays and sent them to two excellent papers where they will languish in ignominy. Plus I finished my book proposal, which ended up 76 pages long, and Neddy Sweets went over the layout to make sure it looked scrumptious and professional. So today I am empty.

I should just put on my loveliest bellydance outfit and do an hour of dancing. I’m afraid that I hurt my hips really badly yesterday, however. I was practicing a hip-down, or a hip lock-down, (not like a hip lockdown, which is when all the cool people in a building are prevented from leaving the premises). This is a very cool move, which when done properly, looks like the dancers hips are, one at a time, moving downward, lower and lower. It is different from hip drops or piston hips or vertical eights. So I practiced over and over and — YOW — my hips are so sore. But still, I have been stretching and practicing all day today, even in my tight new size 28 jeans. (My kids are quite accustomed by now to seeing me start some kind of dance move right in the middle of the kitchen.)

I finished the jade colored outfit of my dreams, although I still am waiting for the bead fringe to arrive from Egypt. So much of bellydance originates from Egypt, it’s kind of funny to me. Growing up and into adulthood, I never went to the Other Side of Semitism or sampled the charms of the Arab world. There is a little frisson of the verboten in the whole thing for me, a nice Jewish girl. The other day my teacher had us cross our arms under our veils in “pharonic pose.” I said, “Pharonic? As in ‘Pharoah?'” And she nodded, not realizing what pharoah means to me: enslavement of my peeps! For thousands of years, or hundreds? For as long as it took for us to build those pyramids, way back when. So here I am, emulating the Pharoah, and ordering costumes from Egypt! Oh God! What would Moses say? Don’t know, apparently he was slow of speech. Okay, what would Aaron, his brother say? “Oh, Shoshana, Let [My People] It Go!”

So I did. If only everything else were so easy! Oy = D’oh = Sigh

We watched it together.
I watched it and I watched you.
You smiled at the hand flapping.
You stimmed quietly
Your hand comfortable in your pajama pants
(Typical guy)
You rocked to the song.

Then, listened with no smile
To her words
One tone, flowing together like the water
She played with.
Chilling, like ice.

You knew what she was saying.
Some of it
All of it
You felt something.
We felt it together.
I believe, Nat.
I believe.

Sometimes I feel
Like I been tied to the whippin post
–Allman Brothers Band

Lately in these here parts, there has been a revival of public education’s favorite whipping boy: special education, also known as SPED, or the blood-sucking parasite that steals the lifeforce from the far more deserving regular education kids, the ones who can actually do something with their lives.

Yes, this is the line of reasoning that came across my email this morning, from one of the email lists I am on which serves those in local government. Basically he asked me to “stand outside of myself for a moment,” and consider the pure economic reality of the situation. He said that SPED does take away from regular education, surely I can see that, because there is less money. And the return we get on our dollar might not be worth it, he suggested or implied or maybe I inferred.

After the red cleared from my eyes, and I went and reattached my popped-off head, I fired back the following reply:

You assume I don’t stand outside myself, but in fact I do. But I will never, ever agree that the way we educate people should be dictated by economics that are dictated by politicians who cut education funding and fund unnecessary wars and oil companies instead. Think about that. Why is there less money available for all education? Not a big enough pie. Why not? Because the federal and state governments’ priorities are all wrong.

This is a civilized society. We have to do better for all of our people, regular ed and special ed and stop thinking so narrowly about what “reality” is and go to the powers that be and demand a bigger pie for ALL education. Until then, I am sorry to hear that some people will resent — or blame — the victim of this system.

I am also starting to hear the drumbeat of “That greedy SPED That greedy SPED.” This is the way the song goes:

Ha! I don’t mean what you are thinking. It sure ain’t Natty’s voice I’m talking about. It’s the Voice of Recovery. Those who are hell-bent on forcing the autism out of their children as if they were exorcists. They chase the cure and stop living. Their entire life’s configuration has become about something being wrong, if-we-can-just-fix-this-life-will-be-okay-once-more. But it isn’t. Life is really messy and unpredictable, and we forget that. Life is like my big weird house, you think you’re buying a Victorian dreamhome and you end up running around worrying about what’s going to break next. Or you enjoy its quirky beauty and keep decorating anyway. In the end, Camus was right. The point was not curing; it was about helping. You have to keep making the life you are handed the best it can be, despite the fact that rats may be dying all around you. Despite the hounds of hell being unleashed now and then.

My own personal demons are about my own career as a writer, as someone who started writing an autism book because I wanted to educate the world about a family like ours and basically tell everyone that it’s not what you think. Don’t pity us. We are fine. Our lives can be very hard because of things that happen with Nat, but also because of things that happen with any of us. If it’s not wiring, it’s plumbing. But it seems like the general public doesn’t buy that. They want miracle stories, they want tragedy and pathos. And they want magic bullets.

Sure enough, every time I look at the Amazon rankings, Let Me Hear Your Voice is always way up there, way ahead of mine. Recovery autism books always do so well. My philosophy is not about recovery, unless you have the flu or some such illness. Autism is not an illness. Autism is not a disease.

In fact, autism can be a gift. This truly amazing item has already traveled around the blogosphere, but it is truly worth another look. Amanda Baggs has put together a fantastic short video on her way of experiencing the world as an autistic person. I watched this, the first part, with her humming and I suppose “stimming” on things, and I found myself feeling at first like, Oh my God this is just like Nat, and I hear this all the time so I don’t really need to watch it. Yes, that is what I thought. I kind of turned away, feeling a little sad and tired of autism.

And then she starts typing, explaining in my language what she experiences as she connects all of her senses with her environment, something I am pretty much unable to do. She also raises the issue that her way of being probably only elicited sad or other negative feelings until you learn that she can use our language, and then suddenly she is a person. Wow. My biases were laid bare. I still have them, I realized, and this video helped me see that. And of course, it makes me wonder about all the amazing things and feelings Nat gets to experience that I do not.

I hear his voice all the time. Now maybe I’ll hear the happiness in it.

The May bellydance performance has taken over my mind, blooming like my garden in June. It is fueling all sorts of feelings for me, that I haven’t had in a long time. This obsession reminds me of when I bought my electric guitar, around ten years ago. Back then I was obsessed with Eric Clapton, (I mean, my God, look at him in that picture! Still makes my mouth water; plus he plays the guitar pretty well, too.) who filled up our CD collection and blasted from my car (which was a Jeep Grand Cherokee, now my most hated vehicle next to a Hummer, but for personal reasons, because it broke all the time; the Hummer Hate is more political about how f***ing big and army-like they are).

I bought a Fender Stratocaster and amp and everything, as well as music books. I already knew how to play the guitar because I had been playing folk and classical since third grade. So I decided it wasn’t enough to just listen and sing to Clapton; I also wanted to play like him! I bought those Hal Leonard books, that give you the tablature, the diagrams of the fingerings of many of Clapton’s solos. Unbelievable! I felt like I had the key to the universe. I couldn’t play a lot of his music very well, but the Hal Leonard books demystified them and made it possible for me to approach his solos. I mastered one or two of them, especially from the Unplugged album, where most are acoustic, the style to which I am most accustomed.

My boys were thus raised on Clapton, Dylan, Beethoven, Mozart, Beatles, and Allman Brothers, rather than Raffi et al., although every now and then I did play kiddie CDs for them. I rarely played them in the car, however, because I hate kiddie music and I figured my kids could be exposed to real music, all sorts. Although I do have a few very lovely memories of Nat shouting “Robin in the rain, what a saucy fellow, Robin in the rain, mind your socks of yellow…” and “Where is Thumbkin? Her I am,” (he said, “Her” instead of “Here!”) right in the middle of the T! Shouting! I remember being both burstingly proud of him and at the same time, mortified. I think I’d give my right thumbkin to have that moment back, however; it was so cute, so dear, so innocent. Young parents: heed my words!!!!! As odd as your little guy appears now, you will one day miss his wonderful little self!!!!!

At any time during the day I could be found getting out my guitar, plugging it in, and cranking something out. This lasted for years, until finally I guess I moved on. Or I went back to acoustic, because it was my first love and frankly, I am much better at it. I never really got the hang of improvising lead guitar solos. I never jumped from the memorized Clapton solos to my own. I could only imitate really well, and that was not ultimately enough for me. Sometimes I feel like I’m Yertle the Turtle, (minus the whole Nazi-fascist allegory), always wanting to get closer and closer to a particular adored thing until maybe I collapse. It is Yertle’s yearning I am fascinated with. It is a classic tragedy, wherein the seeds of his own self-destruction are present throughout. Which leads me to wonder:

Are obsessions based on self-destructive impulses? Or are they somewhat misguided acts of self-fulfillment?

I think that the Obsessed would say the latter, but those who observe the Obsessed would say the former. There is a small voice I hear every now and then, when I embark on an Obsessive Journey, that, not unlike the Fish in the Cat in the Hat, warns me that danger is near, or that my obsession is going too far in some way. Is this a voice to heed, or is it just my fears speaking up? What’s wrong with pursuing the lust for a hobby as far as I want it to go, as long as I’m still able to do my other jobs? Why does that Fish worry so much? Is he a destructive force, or a caring force?

So every day — Fish be damned — I have been dancing. Sometimes twice a day. I have been trying to stretch before and after, to truly warm up my muscles, but sometimes I just can’t wait. In the middle of the night, I feel my hips aching. When I get out of bed and my feet first touch the floor, all muscles ache. So far nothing feels like a dangerous ache, not like my knee used to feel during the summer. So I figure it is just the pain of newly awakened muscles.

I am determined to gain full control over my moves by the time May rolls around. Last night when I practiced, I was able to stay lifted and do that Choo-Choo shimmy, with a lot less auxiliary jiggling. I had already done a workout that morning, but around 8 pm. I heard that music in my head and I told Ned I had to dance. I practiced until 9:30.

I can’t stop for now. I am in the throes of a lovely obsession and I just hope it lasts a long, long time because it makes me feel beautiful and powerful, and just a touch worried about myself, which is better than other states of mind I’ve had.