Susan Senator

I want this costume. I want it so badly. It is just exactly right. It is pink, it is silver, it has just the right amount of coverage, it is a flattering straight skirt, and it looks like something a Bellydance Superstar would wear (that is Petite Jamilla you see spinning her double veils, on the website. She is one of my favorites. Double veil is incredible to watch; one of those things that is mesmerizing, and looks fun and easy, but just try it…!) Or this is something someone in Cairo would wear (is there any other city name that is as exotic and sophisticated sounding as that?).

Tonight I practiced for an hour. Our “homework” from my new class was to find three drum solos, listen to them, and pick out each time the beat changes. We did this in class, and we also improvised solos as we listened. So tonight I picked out some from my old teacher, whom I miss because she was so sweet, she taught in a circle, and she was a real joyful character. I also listened to some from the Sonia and Issam DVD, which has a bonus CD of drum solos.

These Issam solos were perfect; they were only a minute and a half, which is still long when you are constantly popping, shimmying, and undulating. All while staying lifted, of course. And trying not to look like you’re in pain.

By the end of my dancing tonight I was so loose that I could actually do a really nice choo-choo shimmy with twisting hips and even a chest lift every now and then for accent. It helped to imagine my new, friendly class and my teacher, and how psyched she would be that I am this into it. I even got out my zills and tried a little of that, but, not so much. Zilling while doing all that other stuff is very hard, but I did succeed a bit last night.

The recital for this class is May 12. There will be a group dance and solos. I think I will either do a short drum solo, or my favorite, the Misirlou, with veil and maybe, just maybe, zills.

Just kind of resting now, in my pink jammies, post-dance, warm and sleepy, dreaming about future performances and waiting for my guy to come home (he’s at Guys’ Night Out). He said he’d be home in time for Jon Stewart. Always worth staying up for (both Ned and Jon Stewart).

Here is another of my best and worst lists:

BEST:
1) Eating parmesan right from the wedge
2) Writing exactly what I mean to say
3) Placing an essay in a world class journal
4) Noticing that the light has changed outside — flush winter down the terlet
5) The smell of Ben’s hair when he needs a shower
6) The colors in Ned’s, Max’s, and Nat’s faces (gold, pink, and blue)
7) Finding out that Nat has a girlfriend in his class
8) Imagining Ben as a man
9) Packing for a trip
10) Writing in a sunny spot, and having something to write there!

WORST:
1) Being emotionally smothered
2) Being summed up
3) When my therapy hour ends
4) When bellydance class ends
5) When my knee/hip pain flares up
6) When even makeup doesn’t make a difference
7) When I really, truly don’t feel like dancing
8) When Ned is too preoccupied with work
9) When Nat is too upset about the light to enjoy anything
10) When people don’t call back for playdates with Ben

Yesterday was a shimmering golden day. I found out that my book, Making Peace with Autism, has won the Exceptional Parent Symbol of Excellence Award! This touched me on many levels; first, because Exceptional Parent is the first magazine many special needs parents come to for help (this is what I did, way back when Nat was diagnosed). Second, because Exceptional Parent was the first place that published me, giving me my start as a writer! And third, because they wrote such a beautiful review of the book; they really “got” it. Fourth, this will absolutely help my agent sell my new book proposal, which she is going to work on this week!

I also learned that the Washington Post accepted an oped of mine, my sixth oped on that page seventh piece for the paper overall (I LOVE the WASHPO!!!! They are one of the three most respected newspapers in this country, the other two being the NY Times and the LA Times, of course. I suppose you could throw in WSJ but do I stand a chance being published with them, they are so conservative. Of course I have tried many times.). My piece is about autism and late intervention. This is a topic that is of increasing concern to me as Nat moves towards adulthood and I see the utter dearth of services, supports, choices, and funding out there for adults with developmental disabilities. Much of today’s attention and funding is going towards early intervention and detection, to the very young. How sadly ironic this is, when you consider that “developmental disability” often implies atypical development, meaning, growth can occur when you least expect it, at a far later age than a typically developing person. My Nat, for example, did not learn to read until he was 8. He did not have a real friendship until he was 15. At 17, he is going through the toddler’s “I don’t want to share” phase! These guys need Late Intervention so that they can blossom, whenever that may be and whatever kind of flower they turn into! I can see that this is going to be my crusade for the next decade: getting the powers that be to wake up to all the potential of guys like Nat, and helping them get there. As the alleged Super Power Nation, I’d like to see the United States earn that moniker, and start helping its most vulnerable citizens thrive (rather than ploughing so much money into a war that should never happened in the first place!) Give us your tired, your poor; hello? Anybody there?

The final wonderful thing about yesterday was that I started taking a class with a new bellydance teacher whose aim is to help us with technique, improvisation, and performance. There were two women in there whom I recognized from performances around Boston! I was actually dancing among performers, and (sometimes) keeping up. At one point one (young!) woman said, “You have a really beautiful shimmy. I wish I could shimmy like that.” I could have floated away out of sheer joy. I have never been told that I do anything well in BD, especially by another bellydancer! Although the class felt at times over my head, it was in that exhilarating way that the ocean can feel too deep but you still know how to get your footing and swim in the waves.

I was not surprised that there were many feelings among my readers about Nat’s conversation program. Educational approaches are always a bit controversial, and autism education approaches are even moreso. Plus it is the first time most of you have ever seen Nat in action. I understand the feelings people have expressed to me, both in private and blog comments. I even agree that there is a bit of a canned aspect to the program, an artificial feel to the conversation, which can be frustrating to watch.

But I stand by Natty’s teachers and this work that they do, because the staff there fulfill my primary requirement for educators: they understand him, and they love and accept him. They take the time to figure him out and within the parameters of their Behavioral training, they come up with programs that will provide the building blocks of a particular desirable skill.

The conversation program that I YouTubed was the very beginning of teaching Nat attending and responding skills. The content is not necessarily important, although in all the programs featured on the Nat DVD (and there several more) the teachers have picked subjects that will catch his attention (movies, family pictures, ocean). Some readers were upset by the bizarre feel of the conversation, repeated several times exactly the same way, the teacher’s tone of voice, the apparently boring aspect of the entire thing.

I believe that Nat might sometimes find schooltime to be all of these, and perhaps a little bizarre as well, but this is so far the technique that has worked best in getting Nat to understand how the world works. Incidental learning, the osmosis-style learning most of us are capable of, does not generally work with Nat. Also, he is long familiar with his school’s approaches and he by now understands that this is how he learns new things at school. All children have to accept that the school is the boss, after all. That’s how it works when you’re a kid. Benji is struggling mightily with this concept right now, as a third-grader. And Nat figures out extremely quickly what it is these NT teachers want from him and he gives it to them. He ends up enjoying some of these new skills — like working at his several (paying) jobs, reading, and playing interactive games with a peer — and other skills he does not like, such as math or using the telephone. For Nat the rewarding thing is figuring out what the expectation is and fulfilling it as soon as possible, moving on to the next thing. He is a total overachiever, classically so; a perfectionist. I don’t mean this pejoratively. I admire his follow-through and I wish I had more of it myself.

The Behavioral/Discrete Trial Training Approach is not perfect. Some may utterly hate the trained-dog aspect of it. But I think it is a good tool for giving one building blocks and steps to a skill, particularly a learner like Nat who spaces out easily and requires repetition and consistency to capture his attention and make him feel comfortable. Some things we learn are just not that easily picked up on naturally or incidentally — a good example is Benji having to use flashcards to learn his math facts — but they must be drilled for acquisition. I think that once Nat gets the hang of listening to a question and answering, he will be able to branch out and come up with his own topics and responses. He will even become more comfortable with saying, “No talking,” which is what he says when he absolutely can’t take any more. But he is too good a student to do that to his teacher.

But even more than the merits of DTT/ABA, I think that Nat is surrounded by teachers who care about him and start from where he is linguistically and help bring him to new levels. This is what education is all about.

Yesterday I participated in a Spelling Bee run by our town’s educational foundation, one of those private groups that raises funds to pilot projects at the schools, with the hopes that the school department will pick up the cost the following year. I have grown to realize that we need these kinds of groups, because they can be more creative and quick about what they start, and they cover certain needs that might otherwise be ignored because of tight budgets. Ideally, of course, we wouldn’t need this; our taxes should be enough. But they are not. And so we have these private foundations, and I see that they do a lot of good, particularly in terms of building teacher morale.

The Spelling Bee is one of my favorite town activities of the year. I am always asked to be on a team, because I am not a bad speller but mostly because I get so excited about the thing! Each team is supposed to come up with a theme and a costume. That is the part I love. So when I was on the School Committee, I spelled for the School Committee, and our team was various things over the years, such as the “S’Cool Committee,” where we dressed “cool,” with jeans, leather, sunglasses, etc. This year I spelled for my little guy’s school and we were the Lincoln Spellbinders. So one teammate made beautiful wizard hats and I brought bellydance gear and Max’s black Sith robe. Chris wore the robe and looked like a wizard; Lisa and I wore hipscarves over our jeans and matching veils and my cobra bracelets and the wizard hats. I shimmied onto the stage a tiny bit.

We did respectably, though we did not win our round, or “swarm.” The words were incredibly hard, I can’t even remember what they were. Lisa was a total spelling ringer, a doctor who is also very well read, so she had great instincts!

I love spelling, but I really only care about the costume. I was sure that we would win the costume; I’ve never won in all these years but I have always had good costumes! And this year, the superintendent (whom I hired, mind you) was the JUDGE for the costumes. So I shook my finger at him mockingly, as if to say, “you owe me!”

Well, I guess he did not think so! Because the people who won were three men dressed as Queen Bees, complete with wig and tiara. As my friend said, “Well, you guys were good, but you can’t top men in drag.”

Last night I dreamed that I had discovered a pair of windows on the third floor that had several large gaps where the sashes met, and holes in the screens, which were covered in bugs and God knows what else. I realized in terrible sinking fear that bats could have gotten in. Ned was not home, so I had to take care of it myself. I went all the way down to the basement (in my dream) and looked for the steel wool Ned uses to plug up such holes. I couldn’t find much, so I got some foam and some foil, which ran out after I’d pulled out only five sheets.

I went all the way back up to the rickety windows with all this junk in my hands to stuff the cracks, and leaned into the window on the right. A chubby black spider was sitting there. It leaped out. As it leaped, I watched in horror and then amazement as an aqua green spotted tiny tutu and wings sprung out from its body and it became kind of a fairy spider. It landed on my head and I was both horrified and calm. I felt that it would probably be okay because it was actually this beautiful thing.

And so I woke up thinking about, of all things, my bellydancing. Why? I think because I have been searching for just the right teacher, someone who is not too much of a diva, but who also knows how to make a class rich, challenging enough, but not scary challenging. At this point I have had five teachers in less than one year. I have enjoyed and benefited from them all, but still I have not yet found my home. More and more, I like using my DVDs and practicing with them. I don’t know if this is okay, but I want it to be okay. I worry about my tendency in general to withdraw from things and be by myself. I do this sometimes with friends, with groups, with committees, etc. After a while, I need to be in the comfort and safety of my own space. I am trying to honor those feelings because I don’t want to kill this wonderful hobby of mine with “shoulds.” I “should” join a class. I “should” aim for a recital. I “should not” just use DVDs. Those are the negative messages I hear sometimes.

What I need is a new DVD, and I’m waiting for them to arrive from Amazon. I am continuing to look for a class. Last night when I was dancing I realized that I could do every single step and movement in the Drum Solo DVD, so easily that I could concentrate on staying lifted and placement of my hands. The staying-lifted is extremely important, especially with someone like me (there I go again with the negative messages) who does not have the slimmest, longest midsection. Staying lifted means you pull your upper ribcage up as high as you can, separating it from your abdomen and hips.

Last night I did a lot of my movements staying lifted the entire time. That is one of my requirements for doing any sort of public performance; I will have to be able to stay like that as much as possible. Otherwise I feel grotesque. The fascinating thing to me about my doing bellydance is that I have always felt that my belly was my worst physical aspect, even as a smooth-bodied teen. I have hated my belly. So how wildly ironic for me to have alighted upon a hobby that forces me to look at it. I have to stare at it and control its movement and learn to live with it, all the while trying to perfect it and love it, this belly of mine. And slowly, it is happening. But fear and self-loathing will swallow up all the joy. I can not allow this beautiful thing I have discovered to become something ugly and fearful.

I think maybe this dream is a metaphor for the larger aspects of my life as an adult. I find myself alone with this difficulty, of fixing something scary. Ned is out of the house, but I know he will be back. Ned is with me but not always. Some things I do alone, even if they are really hard. I believe somehow that the spider is me dancing. I discovered it in a place I knew nothing about, in my own house, for all this time. It leaped out, scaring me at first with my chubby ugliness, and then fascinating me. I did not kill it, and it morphed into this fairy thing. Given the right chance, it sprouted beautiful wings and a colorful skirt. It landed on me and I was terrified at first and yet I was okay. I actually cannot believe that such a beautiful thing would come out of something so ugly, but there it is.

I know on the surface that I am not ugly, physically or otherwise, certainly not spider-ugly, and yet sometimes I feel ugly. There are some very old messages we carry around from childhood. I think that somewhere along the way I got the idea that my needs and my real self are difficult for others to take. Therapy and growth help dislodge some of these feelings, but every now and then they still jump out at me. The trick is to remember that I am the Fairy, not the Spider, or that perhaps I can live with being both, if I just stay lifted.

OOh Baby I love your way, everyday.
–Peter Frampton

It is springtime in my family. Nat, my tall yellow flower, seems to be blossoming once more. He has become very enthusiastic about making his art creations, which are cray-pas on colored construction paper, cut up, and then carefully glued. They are just beautiful, magnificent mosaics of paper and soft color. His teacher recently discovered his preferred medium, and helped him articulate it by cutting up some of his drawings and getting out the glue. Now he is a cutting-and-gluing fiend!

Nat is also now a laundry maven. He forces me to do the laundry as soon as the hamper is half-full (when to me, eternal lazi-est, it is half-empty!). He says, softly but intently, staring into my eyes, holding onto my hands, “Laundry…” And he won’t quit until it gets done. So, you might say that this means in ABA-land, that I should NOT give in, since he is nagging me. Or does it mean that I should give in, to reward him for talking to me? Or does it mean I should NOT give in because I should be setting the terms of the household? Or does it mean I should give in because here is something that Nat really likes to do, that is important to him?

You see how you can really fardreit dein kopf with this stuff. I chose the last option, because I like knowing what is important to Nat and honoring that, particularly since he asked me so nicely! So, together we did a few loads. Here there is always laundry to do, dust to pick up, food to buy, toilets to clean. You vant doit and drek? Ve got.

Anyway, where was I? My tall yellow flower. Today our Home Based Therapist came to do more training and troubleshooting, basically to help me work on the IEP programs in our home. So for months we have been working on getting Nat to initiate with what he wants. The program is to walk within five feet or more of Nat, and without looking at him or cuing him, getting him to ask me for his pills. We have really gotten very far with this.

Now, at school, they have been working on ways to get Nat to converse. I love the way they have done this. They help him by knowing him so well, and they are able to encourage accurate responses from him because of this. So Jessica came today to show us how to run Nat’s conversation programs. She brought this DVD of Nat working on conversing at school. I love the way his teacher is enjoying him, and he is right there with her. See if you can pick out the utterly age appropriate thing he does during the clip!

Ned and I were at a bit of a loss as to what Max’s birthday cake should be. We had done many Myst-related or Uru cakes already, which came out great, (look in my blog index to see them, too many to link to). It is hard to capture the interest of a very cool now 15-year-old.

But — the other day I was talking to Max about where he would want to go if he had his choice of places. And this conversation was actually leading up to a real possibility because Ned and I have found a sleepaway camp that we are going to send Nat to! So Nat will be away from home for a week, for the first time ever, doing all kinds of amazing activities, mostly extreme sports. And it is only kids on the autism spectrum!!! I am so psyched for him, and for us, to have this opportunity to try separate vacations (just the four of us, without Nat).

So — what to do? Go to the Rockies? Europe? Japan? I looked into all of these things. But Max said he wants to see ruins. He loves ruins.

So I told Ned that Max loves ruins, and right away Ned sent me a link to something called, “CakeHenge.” Devil dogs cut up and lined up like the stones in England. I said, “We so have to make that. And do it better.” He agreed.

Last night Nat, Ben and I baked and Ned came home with a bag of buildable candy (Three Musketeers, Twix, and the inevitable Hershey). Ben and Ned mixed up some grassy green, or thereabouts (so hard to get intense colors with the pastels of frosting), and I worked on a rock color. I frosted the candy bits with my fingers; so much more control than a frosting knife, and it allows you to give the surface a rock-like texture. And — sigh — an opportunity to lick frosting off the fingers.

The cake turned out magnificent. Ned had the brilliant idea of shining a flashlight to simulate the StoneHenge sunrise, and I had the idea of getting a Lego druid, which Ben put together. Nat came in and obliged us by “cleaning out” the frosting bowls. A true family effort. And Max, of course, was delighted with his CakeHenge.

Max turned 15 today.  He didn’t have a specific idea for a cake, so Susan and I riffed on the theme of ruins, and came up with Cakehenge.
…

You are my sunshine
My big boy sunshine
You make me happy
all night and day
–My adaptation of the song; sang it to my sons for as many years as they would allow.

Today is Maximillian Zachary Batchelder’s 15th birthday. A big name for a big person. He was my biggest baby of the three, weighing in at 8 pounds, 9 ounces. The first moment I looked at him, I laughed. He had a little sharp nose and high cheekbones that reminded me of my mom’s, and he was all at once familiar and a stranger. “Who is this?” I remember asking him.

I wanted to get to know this new/old person right away. He made it easy. He ate and ate, and he settled into a napping routine that fit with his big brother Nat’s pretty quickly. He never had that feeble newborn air. His eyes popped open by the time we were home with him. At six weeks old he had so much head and neck strength that I could just prop him a little on chair and use the backpack instead of the snugli (the precursor to the Baby Bjorn carrier). He was smiling as soon as his infant face would allow it, and that is how I will always think of him: with a beautiful smile, lit up by an inner contentment that I envy. He might have my family’s gorgeous cheekbones but he has Ned’s golden serenity (and hair).

He also has Ned’s mathematical mind, but also my artistic leanings. He has always been a sculptor, constructing amazing things from what you might consider garbage or just part of the scenery (his room is a collection of cast-off mechanical stuff as well as folded business card structures.) When he was four, we had Laura’s baby shower. She unwrapped a gift that had to be assembled; a lot of parts. Little Max looked down at the box of parts and at the picture of the finished item and said, “It’s missing a part.” We smiled skeptically and then tried to assemble it — he was right.

I used to worry about him when he was younger, growing up in the sometimes confusing shadows his brother’s erratic behavior or my anxiety and depression cast his way. By the time he was eleven, however, I could see that he knew what he was about in a way that I still did not, at 40. He started to find a major part of himself at that point, with computer programming and playing the game Uru Live. He refused to go along with any of the prefabricated cliques in his middle school, and now at the high school, instead forging out on his own to be a kind of socially skilled nerd. A geek with a lot of girlfriends (over the years; currently just one).

At 6’2″, Max is the biggest in the family. He is softspoken, and I have never seen him become aggressive. Only once, when he was a toddler, he hit Nat in the head with a little wooden hammer (from the toy “Tap-A-Chap,” which he called, “Bap-Bap-Bap”), and it was done playfully, not angrily. He teases Benj mercilessly, but also knows when to stop.

For his fifteenth birthday, I wish for him all the good things this life can bring you, and the ability to continue to handle the rest.

Is this the little boy I carried?
Is this the little boy at play?
I don’t remember growing older…

… See my Tabblo>

In pain shall youse give birth.
— Archie Bunker

Spending the night with a tennis ball is a phrase that can evoke the biggest smiles from Ned and me. This phrase will always mean the night leading to Max’s birth day. I was having back labor, and our childbirth class coach had instructed Ned to use a tennis ball, to apply a firm counter pressure to the area where it hurt the most, the small of my back. Every few hours, and then minutes, I would wake up with my pains, and he would hold me or get the ball. At one point he took me into the shower and we stood there in the delicious heat, holding on to each other while the pain washed over me with the water.

This, we both feel, was one of the best nights of our lives, despite my physical pain. We got into a pattern of dozing, waking up, holding, and falling back asleep. I remember feeling that blazing golden excitement that screams This is It, when you know that after all this you will have a new baby.

We waited for Laura and John to arrive so that we could go to the hospital. They were taking care of little Nat. When they arrived, joking and laughing as always, it was funny to see them sober up as they took in my state. Serious labor.

We continued our holding-and-tennis-ball technique until we got in the car. At the hospital, I was not quite as ready as I had imagined. It is so hard to believe you are going to be feeling even more pain than you are at those moments, but hard labor is simply unbelievable. So much so, that we don’t even remember just how bad it is.

My particular birth horror story for Max is that I started feeling fiery, pounding pains again sometime after the epidural had been applied. By the time they rolled me over to check on what I was whining about, I was at eight or nine centimeters; the requisite pushing number is, of course, ten. Turns out the epidural needle had indeed fallen out.

“Too late,” my doctor said. “You just have to blow through it.”
And no tennis ball was going to help me now. Except, perhaps if I could have walloped her with one.

To be Continued…

I always thought it was cute and clever that I had changed Benj’s nickname, “Little B,” into “Little Beast.” He did not like “Little B,” which had a little song attached to it, more like a jingle, “Little B!” (doo, doo, doo, oh well, if you meet me, ask me to sing it for you, if Benj is not around, that is) and which morphed into “The Bee-ster,” and then became “The Beast,” etc. “Little B” was too sweet and sidekick-like; but he seemed content with “Beast,” because he admired things that are wild, scary, forceful, and perhaps, mean.

This devilish and tough-guy attitude, or “‘tude,” you might say, has been Ben’s persona for quite sometime, now. It has fit him to a “T,” or should I say, to a “B.”

But then came the weekend Ned went away, and Ben admitted to me, in the dark of night, that he missed his Dad. I lay there, swallowing my salty-sad tears, also feeling happy that he actually had such feelings. Who knew? I am ashamed to admit I thought of the Grinch’s heart that grew three sizes that one day, and broke out of the magnifying glass. And how Laura and I joke about Ben and his cousin Kimmie’s (also known as Kimji, because they are like two parts of one person when they are together) “hearts of stone.”

And then, last night, he came into my room with a bad dream. It wasn’t until we moved to his bed (so as not to wake up Ned while we talked), that he admitted, “Well, you see, you died.” I could see his in the gray darkness that his lips were pressed together in a line, to prevent himself from crying, and his eyes kept blinking rapidly. Ben is not a softie. Or a hugger. He does not ever, ever talk about his feelings for other people, except the angry ones. I lay there, thinking, “Yeah, I am going to die someday.” How to talk about this, reassure him, and yet be honest?

Hugger or not, I reached over and pulled him to me, tasting tears from his cheeks. I told him that yes, everyone is going to die someday, and that that really sucked. I also told him that I was going to be here a good long time. I told him how I thought about my own parents, how they’re getting older, and how it makes me very, very sad to think about losing them. But I said that everyone feels that way and that we try not to think about it too much. We should be thinking instead about Max’s birthday (this Friday) and what his cake should be, and how could we trick him into smelling it so we could push his face into it! Ben laughed a little, but then said how that wouldn’t be nice on Max’s birthday.

I thought about the story our rabbi told us, long ago:

An angel was told by God to bring back the most precious, most beautiful thing he could find on earth. So the angel searched all over the earth. He looked at treasures from the wealthiest kingdoms, jewels, gold, silver. He looked at colorful silks. He marveled at magnificent castles. He was at a loss as to what was the most precious, beautiful treasure from mankind.

And then one night he happened upon a house in the woods. A thief was standing outside, about to break in. But the thief happened to be right outside of the room of the little boy who lived there. The mother was tucking him in for the night.

The thief started to cry as he witnessed the scene. The angel watched, holding his breath, and felt his own heart beat faster. He gathered up the tears from the thief’s face and brought them back to God, who felt he had done very well indeed.

Benji, of course, is no thief. But I have worried about his seemingly tough heart. I have grown used to the idea that my third son is tough inside and out, and that I love him just the same. Our children are not given to us to fix what is wrong with us, or to give us what we so sorely need. They just exist, like anyone else, and we love them simply for who they are.

But Benji has grown in such a way that he felt able to show me a part of his heart, and in doing so, he helped heal something sore, needy, and gaping in mine.

The child’s worth ten of the mother.
–Belle Watling, to Rhett Butler, GWTW

The child is father to the man.
–Gerard Manley Hopkins, 1840

They’re my millions. I’ve got two millions. One, two. And you’re the third.
—Grandma Esther Senator Gross, to me, about Max and Nat


I know other people are not like this, but I experience life as an ever-shifting force, a moving puzzle beneath my feet. There is no stasis, the only times that do not feel like this are the strange empty sinkholes that pop open during my day, inexplicable periods when there is nothing to do — or is it nothing I want to do?

On top of the problem of this strange boredom is the guilt: I know that so many people have the opposite problem, of too much to do, and never enough time for themselves. So I feel ashamed about this, kind of idiotic to have time on my hands. And then, of course, suddenly it’s pick-up time for the kids, and it all changes, it’s all a blur of seeing to everyone’s needs and then the Dreaded Dinnertime (I have lost all inspiration for cooking for my family. It is boring and it is thankless.)

Ned says that I don’t have enough to do during the day that gives me the positive feedback people need. My work is to write and pitch articles to different editors, and at some point, to work on my second book once it’s accepted by the publisher. So this means a lot of dead time of no contact with people. And then my mind wanders — into trouble.

I would like to be more like Max, I think. He has a lot of time spent in his own mind, working on something on the computer, happy just being. He knows what he wants, and asks for it gently but persistently when he really wants it, such as the blue hair, or his new phone, or to go to a particular rotten movie with his friends.

People ask me all the time about how Max does with Nat. “Is it hard for him to bring friends to your house,” they wonder, as if Nat is something to be fearful of. I understand it is their lack of familiarity with Natty and autism that makes them ask this, but still. If they only knew just how okay Max is with it all. (Knock wood. I could always be wrong, but why? Nat is his brother. This is his family. He doesn’t seem to question the way these things are.)

Tonight I made chili, and I always make cornbread with it; actually, I have Nat make the cornbread. I thought he knew the recipe by heart, but I was wrong. I got everything out, and got distracted by Max who was telling me something about his math teacher, whom he adores. When I turned back to the mixing bowl, I saw a heavy white blanket of flour on top of the cornmeal, oil, etc. Far more than what is called for (one cup). I said aloud, “Jeez, that is too much flour.” I knew that Nat would not be able to answer how many cups he’d put in, so I asked Max if he knew. “Two,” Max said. I sighed. “Nat, that is too much. It is just one cup. I thought you knew that.” I proceeded to shovel out the extra flour, until I had close to a cup, which miraculously had no corn meal mixed into it. Nat started mixing it, and it was viscous, almost immobile against the wooden spoon. I sloshed in a little water to make it less paste-like.

Max slipped out of the room, back to his peaceful space upstairs, while I grumbled over the mess in my kitchen. The oven beeped its preheated message to us and I put the pan in. Nat went back to his station on the couch, where I’ll admit he often sits hunched over in fetal position. Why does he do this? Is he unhappy? Or is he okay like that? I felt a very old, rusty pang inside me, looking at him like that. What more should I be doing, if anything?

Sighing again, I took the cornbread out twenty minutes later. Dinner was all ready. Ned came home a bit late, but everything was still warm. Afterwards, when we were cleaning up, Max said, “That was like the best cornbread we ever had.” I turned to him and smiled gratefully. “Yeah? Tell Nat,” (who was sitting right next to Max).

Max’s face shifted slowly, into the most beautiful smile, a look that sort of said, “Relax, Ma. Everything’s okay.” And he said, laughing, “I just did.”

Where have I been? Totally submerged with my sister in a wonderful visit. She came here with her two children, who love my boys so much. They all play so well together. And so do Laura and I!

My sister Laura came to visit me this weekend with her two children.  As you can see, we had a great time.  We went downtown shopping, walking, talking, drinking coffee, and of course, laughing, for all of Saturday.  In the evening we went out with Ned to a Thai restaurant, and had a most delicious meal, made all the more exquisite for the company.  I will be as sad to see her go as I was happy to be with her.
… See my Tabblo>

My column for this week’s Brookline Tab delves into the absurdity of local politics by taking a humorous look at the use of traffic signs all around town. I have been struggling with whether I want to run for Town Meeting again in my precinct, which not only would mean spending an entire day at the polls asking for people to vote for me, but also would mean six nights a year sitting through Warrant articles about any of the following: zoning changes, money spent on playing fields, being required to say the Pledge of Allegiance at the beginning of Town Meeting (yes, it’s true, this one did come up!), resolutions to impeach the president, leaf and snow blower laws, leash laws, and other minutiae of running a very diverse community. Do I have the koyach to do this? I hate these votes that end up making your own neighbors mad at you! Who needs that?

And yet… and yet. As Ned says, I am like a moth to the flame. I get drawn to passionate conflict, excitement, and intense debate. Town Meeting is 240 of my fellow Brookliners, sitting in the Brookline High auditorium, and sometimes, I have to admit, it feels like a big party. It is the very essence of what it is like to be a part of a community.

Oy vey, I’m probably going to run. It’s not until May, anyway. And you know what will happen if I lose, or get thoroughly disgusted? Another “I hate Town Meeting” garden!

More about bellydance; sorry. I always feel a little guilty blogging about bellydance because I wonder if so many of my readers are just looking for autism stories, news about Nat? (And yes, nasty Anonymous has told me as much, but all I can say is, don’t read me then!) But Nat’s always in my head; I keep a lot in my head and sometimes need to clear it and dance is the way. (Except that I’ll say that we had a sad little thing happen last night. I was giving out grapes to the boys at dinner time. A little background: I had just announced that Ned and I were going out to dinner, just the two of us. As I was pulling apart the stems my hand jerked away and connected with Nat’s jaw. He was instantly furious. I didn’t blame him. “Ah, I’m so sorry Nat! Oh Darling!”

But he was so mad he started deeply biting his arm (presumably more painful than the bump I gave him but of course anger is not rational) and then lunging for me. Then Ned. Nat was easy to contain; we just stroked his arms and had him sit down on the floor, and I kept repeating that it was an accident and that I was sorry. I tried to explain how it had happened so that he would understand I had not intended to hurt him! Oh, another circle of Hell exists for Mommies who hurt their children!!!!!

I think he was also upset that we were going out. We stayed home a good long while to get the boys through dinner and to make sure Nat was feeling okay again. He and I hugged, and although he was shaking with emotion, he did not try to hurt me again.)

So things were okay. Later on, I was feeling somehow too full — from dinner and the day’s drek, that I was either going to go to bed at 9, or dance. And because all afternoon I had been sewing that green costume, I knew I was going to have to try it all on.

Ooh, la la! C’etait magnifique! The rocaille fringe was gorgeous and the new silver sequin layer looked wonderful. I was so incredibly psyched to see this creation of my own and to be able to wear it! (Although it is pinned only still on one side and I have to finish off all of the edges.) Plus the color was a dream. Ben and Ned both said at different times that I looked like a mermaid in it! That is true; the sequins sometimes seem scale-like and the straight skirt is sea-green and like a tail. This will color how I dance with it: my choreography will be water-like and flowy.

I danced to about an hour’s worth of Bellydance Superstars Live at the Folies Bergere DVD, and because I do that so often, the choreography was very familiar. I found I could do a lot of what they were doing, in the Egyptian Nights number. I finally mastered the large hip circle traveling step!

The whole thing felt wonderful and looked wonderful. Then, at the very end, when I did my spin and finish, one arm up in the air, my hip scarf slid down to the floor! At least my skirt stayed on! I picked it up, smiling, pretending it had happened in a real performance, and acting, of course, like it was all part of the act!

Here, for your viewing enjoyment, is my absolute favorite bellydancer, Sonia, doing a drum solo that I can now do, too (thanks to Michelle Dove for the You Tube clip). Second photo by Ben Batchelder.

Stupid things I’m not really supposed to like:

1) Bubble gum
2) Blasting Yes in my car when I’m alone, particularly Close to the Edge and Yours is No Disgrace, esp. at the very end when it sounds like a rocket taking off.
3) Listening to Max’s music at the gym (the Black-Eyed Peas)
4) Napping every day
5) Curling my naturally curly hair
6) Sequins, tassels, tulle
7) Buying new gym outfits
8) Cheap make up
9) Writing erotica, but not reading it
10) Quitting things that bug me
11) Picking a fight with someone I trust (knowing deep down we will be okay)
12) Organizing angry people towards a good cause
13) Inappropriate humor
14) Jalapeno peppers and melted cheese, even on just a plate
15) Getting a suntan
16) Blowing off appointments
17) Making up dumb songs about my kids to whatever music is in my head, then singing them and bugging my kids
18) Driving somewhere far with all five of us in the car
19) Deciding to have a good cry
20) Making fun of people with my sister

This has been quite a time, being without Ned. I really have three very nice boys. Unusual, but nice. I took them to the video store this afternoon and we just kind of did our thing: Max went straight for Jackass II, which I decided to allow; I found nothing except a movie I’ve seen many times (Rain Man) but figured I’d inveigle the boys into watching with me; and Benj got some awful new cartoon. Nat walked and talked up and down the aisles, only to end up choosing a vid we already owned (Alice in Wonderland), but who’s judging? Ben was. He muttered, “Of course, we already have that.” And I said, “What do you care?” Poor Benj. I often do not validate his comments like that because I feel that he needs instruction more than validation about Nat.

So, then we went to Bertucci’s in SoBro (South Brookline) for dinner; the favorite when Ned is not around (he does not enjoy going out to eat with the kiddos because it is tough when the service is slow and that Bertucci’s is uneven that way). But I don’t mind, and I love how much cheese they use in everything! Their rolls are torture, however. So I allowed myself a morsel with a lot of butter; such is the skewed way of eating in the Atkins universe.

A lot of people stared at us because of Nat’s stimming and Max’s blue hair. I found I was completely amused by it; what has happened to me? Where did this mellow chick come from> How strange, that suddenly the double staring made it all easier! Like, we are so bizarre a quartet to the untrained eye, what’s a little more? I should have worn a hip scarf!

Got home, everyone had their showers, except me (I’m morning) and Max (he’s blue-haired and must wait one more day). Usually Ned runs the showers so it was a bit of a surprise how much skin can fit in a small bathroom. Somehow one of the towels is now sopping wet, as in, was dropped in the toilet perhaps. D’oh.

Later, I tried to get Beast to watch Rain Man with me: my version of sibshops. I think it helped Max understand more about autism and having a sibling when he was younger. Dustin Hoffman does a terrific job of it, too. But Beast is different from Max; less patient, less willing to be seduced by vague promises of funny things to come. He did, however, love how Dustin Hoffman was acting and was fascinated by him. (“Is he really autistic, Mom?”) Eventually, though, I lost him: he suddenly jumped off the couch and crawled out of the room, backwards, and on his back. He’d had enough empathy for one night. I shut it off because I’ve seen it a bunch and really had had my heart on watching it with boys. I’d had enough empathy, too.

I went upstairs and watched some Jackass II with Max. Well, I suppose it was a bonding experience, at least. Some of it actually did make me laugh against my will (a fartmask?). Other parts nearly made me sick (the fartmask). It is so totally one of those young men kind of things, a test-fest (testosterone festival, my phrase, make sure you credit me).

Tomorrow for lunch: Neddy Sweets

Funny thing about going it alone; you kind of learn more about your own strength, and about others. Ned adds so much to our life; he is woven intricately well into our rich and complicated family fabric. When he leaves, like he did yesterday, there is a big tear, and it seems as if all the fraying will start a gigantic unraveling. But then we get our bearings, and we figure out a way to come back together, to reattach ourselves to each other in his absence.

So yesterday, I spent a lot more time with Max than I ever do. We shared companionable silences in my car, and had satisfying conversations on I.M. He kept laughing upstairs, so I would I.M. him and ask him to send me what was funny. Then I would laugh. We did this a couple of times. Then later, I and the three boys watched “Man Vs. Wild” on the Discovery channel, something I would never watch, but it was absorbing for all of us. The guy, whose first name is aptly “Bear,” I think, was a young, fit, thirtiesh Brit who loved putting himself into dangerous situations, like bear trails, shark-infested waters, and the inside of crevasses. All the sorts of mishegos that gives me nightmares, but which were riveting to watch him survive. Max was really into it. Ben made it funnier by reminding us that the camera guy was with him the whole time, what about him? Nat loved to watch all the extreme sport aspects of the show. And I loved hearing Bear say, “Glahssier,” instead of “Glay-sher” and watching him take off his shirt now and then.

We all went to bed fairly early; I had gotten up with Ned at 4 a.m. after all, had danced after “supper” (too much bad ice cream), and had had no nap. But Ben was anxious, I think, from Ned being gone, (Sweet Little B!) and he showed up in my room at 10:30 saying, “I find I am thinking about death” in his little helium voice. Oh, man! So we had a discussion about how everyone dies at some point, and you just can’t think about it too much. (Yeah, good luck with that! As Seinfeld would say) I knew what was coming. He wanted to sleep with me, especially with Ned gone. Now, I am not a Family Bed kind of person. I saw this Great Guide On Short Infant Cribs for my small mother, and all of my children have always had their own cribs, their own beds, their own bedtimes, and my bedroom is just my bedroom (and Ned’s). I’m not cold; I just like my space. Ned and I need adult time, simple as that. And yet, I am not a rigid person. Sometimes a kid just needs more, you know? And how could I refuse when my Beast suddenly gets all squooshy on me?

So Ben slept with me. Incredibly sweet. At one point I was awakened by a little snoring face right in my face. I breathed him in, his little nightime breath, then pushed him over, just like his father!

And today, my challenge was to take Nat to basketball on my own. I have never done that before. Ned does the public interface more often, if you remember, and the sports. So I was really nervous, and half-decided to bag it. But then what would Nat have this weekend? Nothing! So how could I? Suck it up, Sue, and get going, I thought. All coffeed up, I was ready.

Stopped for the candy-after treat: butterfinger for Nat, 3 Musketeers for Ben. Don’t look, don’t smell, for me. All was well. Got to Boston College, and promptly forgot how to go. I had a tiny feeling of the directions, but not enough. “Uh…is it here, Nat? Can you help me get to the parking lot? Is it here, or next?”
“Next,” he said.
“Next? Really? Next? Or here?”
“Next.”
Son of a gun, he was right. “Okay, so now, here?”
“Yes, here.” I turned the car. It looked right. Sure enough, there was the parking lot! Why do I have so little faith?
Then Nat pointed to the exact spot he and Ned always take. I pulled in, and felt like I’d just won the lottery.