Mother of boys
Shepherd of toys.
Collector of lace,
Endowed of face.
–Ned, to me, on our 9th anniversary

Tonight, even though it is around sixty degrees, it feels like fall. It is Halloween, which used to be my favorite holiday as a child. I remember once getting a really great costume together, a gypsy. I had on all kinds of scarves and schmattas, and a gold hoop earring and a bandana. I looked fantastic. I was probably around seven. I figured, if I could just keep this on until Halloween, I would have the perfect costume, no last-minute panicking.

The only problem was, it was only September. Mom said I couldn’t wear the costume that long. So now, I spend the rest of my life trying to find opportunities to wear great costumes! Sadly, for women of a certain age, there are too few.

I haven’t really loved Halloween as a mom. That’s because none of my kids love it the way I did. I find it hard to relate to their indifference. They don’t care that much about candy(!); they don’t care that much about dressing up(!). It starts earlier and earlier and ends earlier and earlier every year.

Nat never really got Halloween. This used to make me miserable. I remember trying to get him to say, “Trick or treat,” and to wait to be told to take candy. It was so hard for him! Plus not eating it until we got home! Crazy stuff. But really, there was one year when he was around nine and I went with him and Baby Benj around the neighborhood, and perhaps Max was with us, too, with tons of friends and their parents. I had a lump in my throat the whole time, which threatened to burst into an ugly mess of tears at any moment. Nat’s different-ness and his utter indifference to what was going on made me feel as if I were living as two selves at once: the happy mom accompanying her three lovely boys out on Halloween, reminding them to say “thank you,” and the sad broken-hearted mom wishing that things would just for once go the way I had expected them to. The one child I could relate to — Max — was already lightyears beyond us, surrounded by admirers who wanted him with them, leaving me behind with my angry baby who hated even his very first costume (a peapod sleeper). And of course Nat, who was so spacey and seemed only to want to get home.

I don’t know why I was so sad back then. Who cares about that shit? Now I wish I had little boys again just because they’re so cute!!!

I am just glad that I’m not miserable anymore. At last I have settled into my role of mother (in general and specific to Halloween) rather than participant, waiting back home while whichever of my men go out and get their candy. This time Nat and Max both stayed home — Max is on the phone, of course, and Nat hung out and ate candy from my stash.

I seem to be getting a huge thrill out of just opening the door to the little people who come by dressed as always — fairies, ghouls, firemen, Minnie Mouse, and of course, gypsies/pirates — and entirely excited over the increasingly tiny bars of candy we hand out. I have lit candles and plugged in my birthday lights and I’m wearing a velvet top that looks Elizabethan, and a velvet choker — my nod to the old Susan. And as Dido would say, “It’s not so bad, it’s not so bad.”

And just as I finish this, before I can even press “publish post,” the phone rings, and it’s my friend Lisa asking me to go to the Middle East with her tonight for some Halloween fun and we’re dressing up! I’ll go as …? Not a bellydancer!!!! But something girlie.

Life is always full of happy surprises, just around the corner, or in this case, across the river.

I don’t know if I mentioned this, but some of you who live in the Boston area have said you are interested in hearing me give my talk. I’ll be giving a talk for the Harvard Autism Conference/Cambridge Medical Alliance at the Hyatt Regency in downtown Boston, around 3 p.m. this Friday, November 2. This will be shorter than my usual because I am part of a panel. Anyway, it will be basically the same thing I always do. If you go, stop by and introduce yourself.

I’ll also be speaking in Montreal on November 9th and at Brookline High School on May 8 at around 7 p.m. Other things come up here and there; you can always find stuff on my home page, under “events.” That is, if Ned has been keeping it up to date. If you have an organization that wants to hear from a real live parent who has been there and still is there, email me. I love talking, especially if it does some good in the world. Tikkun Olam!

What’s Good About Today

Red Sox won the World Series! Ned and I actually stayed up to watch it (well, he did. I got into my jammies and slept on the couch next to him until the bottom of the 9th, or whenever it was that Ellsbury made that catch). He woke me up to see the final bits. Yay! Too bad it didn’t happen here — I live pretty close to Fenway, though.

Crisp hot-cold air. Mostly still leafy trees. We get an extra month of fall because of the weird weather. (I feel like Pollyanna: “I’ve found a reason to be glad about global warming! Longer summers!”)

House is all decorated for Halloween. Beastie and I made a skeleton guy with a hat and shoes. We webbed up the porch and I found $6 devil hands, which Beastie stuck into the porch bench so it looks like a bloody guy trying to get out. I made a Martha Stewart spider egg sack: one of Ned’s (juggling) balls in one of my white stockings, suspended and then webbed up and stuck with plastic spiders (who look like they just hatched out of it). Gross! I bought two perfect large round punkins and the men will carve them tonight while I work on camel walking on my tip-toes.

I bought black ballet slippers, real ones from capezio, to practice in! So pretty and so good to my feet.

Just taught my third Baby Bellies Class. I love love love them! They are all getting much better at veil work and balancing. They can spin and spin and hardly get dizzy (unlike me). One of them brought in her own little zills! And while they danced, I practiced smiling while dancing — it’s easy around them.

Took care of a lot of Nat’s paperwork. Feels good to get that stuff mailed off.

Getting ready to read Patti Boyd Harrison Clapton’s book, “Wonderful Tonight,” her memoir about life with George Harrison and then Eric Clapton.

Beastie is in a great mood. He said I was, “Da Bomb” today. He is so beautiful!!!

Natty is in a great mood. He is silly-yelling and grinning. He is so beautiful!!! He just got mad about the crowded refrigerator, biting his arm, and he reached out his fingers to pinch me and then stopped himself!!!!! Way to go, Nat!

This is now one of Ned’s and my favorite things to do: photograph a bellydance session. I think Nat is just as into it! Look at his Sweet Guy face.

With its heavy silver beadwork and its red candy-stripe ribbon, how could I go wrong?  I think Nat agrees.  This is my version of The Red Shoes, minus the tragic ending. … See my Tabblo>

Fixing a hole, where the rain gets in
And stops my mind from wandering
Where it will go
–Beatles

There is definitely a certain satisfaction with taking care of business. I frequently have four- or five- item lists on my kitchen blackboard (gloriously encased in a gilded frame; there should be nothing ugly or purely utilitarian in my kitchen. No plastic papertowel dispenser (it is black wrought-iron), no moldy rubber dishrack, (black wrought-iron again) no ugly pots and pans out, only French blue, yellow, or stainless. No tattered, mismatched dishrags. Hide that crap! Drawers are for ugly.)

The list this week contains these items: electrician, drain guy, plumber, AC ducts. I did two out of the four (the first two). The electrician rewired Max’s room now that he has so much technology in there. And the drain guy took a video of our sewer pipe (sounds like a contender for an Oscar, don’t it? Could call it “Roots,” because there are 11 places in the 35 feet of outdoor sewer pipe that have trees snaking through them. Or perhaps, “Broke-bank Mountain” because this is going to be thousands and thousands of dollars. Or “Sure-Stank Redemption,” which ends with a trip through a sewer pipe (thank you, Max!) I’m open to other (funny) suggestions.) Ned is totally rolling his eyes over these stupid puns, but I am cracking myself up!

But I am so happy to have done that nudgework! In college I learned about pacing myself, and having faith that I would get to all my work, I didn’t have to do it all at once. And that is what happened. Bit by bit, the list gets checked off. If I can’t do it today, I don’t worry. I will do it tomorrow.

So why can’t I apply that same mentality to my relationships? Why do I have so little faith in the ebb and flow of relationships, which have their great moments and then their periods of regrouping and struggle. Unlike how I felt at Penn, with my lists and lists of things to read and papers to write, I have so much trouble pushing my psyche past whatever is the current knot of feelings — not unlike our house waste pipe.

I am so much in love with the book Rules by Cynthia Lord. It is a children’s novel that deals with autism in the family, much like the wonderful Al Capone Does My Shirts, but this is contemporary, and told from a 12-year-old girl’s viewpoint, about her younger autistic brother. It is perfectly done, not heavy-handed, and is completely believable.

It is called “Rules” because both Catherine, the girl, and David, her brother, like rules to live by. Catherine records David’s rules, like “no toys in the fishtank,” or “some jokes are to make you laugh, but some jokes are for making fun of you.” She reminds him of his rules at times. It blows my mind to think of all the intricate social rules that neurotypical people make up and just kind of know, and what that must be like for autistic people. They, of course, have different rules. So David has rules that Catherine knows about, too, like, “When you don’t know the words, borrow somebody else’s.” This he does, when he needs calming or is tongue-tied, he dips into the Frog and Toad books by Arnold Lobel, and uses dialog from there. It is very moving to read about David and Catherine exchanging this dialog and seeing the effect it has on each of them, that they understand the underlying meaning and that they care so much about each other.

I wish it felt like my boys cared more about Nat. Should I have forced more on them when they were younger, so that they would be in the habit of including him and interacting with him? Or would that have made them resent him? Or resent us?

I always felt that I wanted a natural, egalitarian family life, where no one person’s rights were more important than another’s. I did not want Nat to feel like an obligation to them, but he has not evolved into a pleasure to them doing it my way. Maybe obligation is better than oblivion. I know that I did not want an autism-centered house. Our house is mostly neurotypically-centered, because that is the majority here and in the world. But is that fair and right? Maybe it is, when love and respect are the central force. Hope so.

Now that Dirt is finished, at least a good draft for shopping around, my agent wants to know what I want to do about the Fun book, the one where I talk about how to find fun and happiness while raising a challenging child. You could make a case that I am a person who has found a way to have fun, no? Even with the difficulties around disability, like navigating the school and the state systems, dealing with the public, dealing with issues no one can help you with, we all still deserve to live our lives to the fullest, and not just as defined by our children. We need our own time, our own hobbies, passions, evenings, etc. We have to figure out a way to get them, sometimes without leaving our livingrooms. Or without spending any money. It’s about closing your eyes and without judgment thinking about just what it is you want to do with yourself, what you wish, what you envy in others, even. All of our feelings, even the “ugly” ones, teach us something about ourselves.

I started bellydancing because I watched the Shakira video, “Hips Don’t Lie.” I was entranced with the way she moved. I felt a yearning, a pang, something missing in my life. I thought, “I want to be like that,” and I immediately then thought, “No, I can’t.”

That is when I knew that I should.

When I bellydance, I completely escape into a world of my own. I hear the songs in my head and I feel the moves I want to make. I watch the other women in my classes and I get lost in dreamy contemplation of how beautiful they are doing the steps just right (one of them has been dancing for 17 years and she is only in her early 30’s!). Last night, for instance, we learned this step that was incredible: three short steps on the diagonal to the right; three short steps on the diagonal to the left, with arms at midpoint going in an “S” shape to your body. Then you stop and do two complete turns, arms outward. Then you stand still, arms up over your head, hands outward. You look skyward in ecstatic contemplation of your arms and then you run them down, following the line of your body, eyes closed, hip shimmying the whole time. Then you thrust your arms upward and do vertical torso snakes to the right then the left. Then do the whole thing again.

It was so hard! And then I got it, by standing behind that really talented 30 something and imitating her — and it was magnificent!!! The teacher also broke it down for me, which helped. She is so funny, but she has the feel of bellydance in her blood, in the way she speaks. She says you thrust your hands outward while doing the initial steps and turns, as if to say, “This is for you, my audience,” and then, when you throw your arms skyward and shimmy it is as if you are saying, “But this — this is for me.”

And that is what life should be like. Some for you, and some that is just for me. We give and we take. That is what makes a complete, sane person. Find your own dance steps and make it happen! Then tell me about it!

I actually wrote this column two days ago, when the following series of events happened. This was before I got home and my blogger friend Don had sent me this link. Then Ned heard about this same issue on NPR (the cop interviewed in the story is my cop! Although as you will see, his advice is useless.) Turkey is in the air…

Opinion: Close encounters of the bird kind

Susan Senator/Edge of Town

Wed Oct 24, 2007, 03:34 PM EDT

I have found the book I want to read next: Reasonable People by Ralph Savarese. Read this bit from his website and you, too, may feel the same.

Ralph and his wife Emily, an autism expert, adopted DJ, an abused autistic boy, when he was six. Ralph’s writing about the adoption alone takes my breath away. “We were not infertile,” he says, trying to explain to the multitudes of people who could not believe anyone would do such a thing. Nor are they saints or martyrs. Nor were they trying to avoid adopting a child of a different race. It was simply that they had a connection with DJ, from Emily’s work, and he needed them as much as they needed him.

My heart leaped when I read this. This, that he describes in his essay, is exactly how I feel. You and your child connect. It is that simple. God, goodness, hope, foolish optimism — whatever you may call it — are all involved in this dynamic. But it is through our own work (and, of course, God, or good luck, energy, magic, dedication, whatever else) that we make something positive of what we end up with.

You reap what you sow, but it takes a particular kind of wisdom to actually feast on what you’ve harvested.

“First shalt thou take out the Holy Pin. Then shalt thou count to three, no more, no less. Three shall be the number thou shalt count, and the number of the counting shall be three. Four shalt thou not count, neither count thou two, excepting that thou then proceed to three. Five is right out.”
–Monty Python and the Holy Grail, Holy Handgrenade Directions

All I have to do now is …
Meet with the DMR liaison and get the forms.
Then I have to give my pediatrician the template so she can do the write-up about Nat’s need for guardianship.
Then I have to take that form and give it to a licensed psychologist to sign off on said need.
Then I have to take that to a licensed social worker to sign off on the above.
Then I have to get a court date to have it approved.
Oh, did I mention the special form to oversee Nat’s medication as his guardian?

This cannot be done before Nat turns 18 but must be done within 180 days of beginning of process.
This must be done before our spring IEP meeting, so that we can sign IEP for Nat as his guardians.
If not done on time, process must begin again. I think.

At the May meeting, we will have the local high school vocational adviser come and meet Nat and determine if his vocational support needs could possibly be met by Brookline High School, in which case we would work towards transferring him partly to his LOCAL HIGH SCHOOL for some of his job training. The idea here is that one day Nat would work and reside in the town in which he was born, walking everywhere or using the T(!)

But that is a big questionmark, because who knows what the high school staff will be willing to do…

And I’m one of the lucky ones because I know what I’m doing — in this instance. Okay, one step at a time.

That is the news so far about Transition to Adulthood for Nathaniel Isaac Batchelder, son extraordinaire.

When there’s no more for you
No more tests, no more school, no more meetings, no more funds, no more things to try
When the label is all that sticks
When people are sorry for me even before they know me
When even some know you and they forget you are still there
When you hide behind your little voice and your unknown words
And your big black velcro shoes make you seem a little like a clown
or an old man
Not serious
And your ruffled honey hair still bends sideways like it always did (you still don’t brush it)

And they all forget that you hear, see, think and feel
Confusion, anger, yes. But also agony, ecstasy, boredom. Joy.
You just don’t talk like them.
So they forget that you are.

Even after the whole world has given up on you
And everyone stops trying

Just remember that I never, ever will.
Because I know.

I have a new admiration for teachers — real ones, that is, the ones who face classes of 20+ kids of all different learning styles and abilities for six hours straight. Or those who deal with classes of seven, like Nat’s. I believe teaching is one of the most demanding jobs a person can have because I now see firsthand how you have to get to know each child and figure out how to get the material across to them, or why they aren’t able to master it.

In my Baby Bellies class, I only have four girls, but each one brings her own special challenges. I can’t help but start to love them as I get to know them and watch how they learn. Sometimes they make me want to laugh out loud, they are so fun and sweet. Other times, my patience is stretched worse than my thigh muscles, because this one is spacing out and that one is talking and talking and talking to me, and another is being so quiet that I don’t know what she’s thinking.

I began with showing them a brief performance DVD, Jillina from the Bellydance Superstars. Two different girls asked if that was me. Awwwww…

They squealed with delight when I pulled out new veils which I had made by cutting up the chiffon swags from my party decorations. I made them smaller than adult veils, which are around 2 1/2 yards. I had three different colors. I told them that at the very end of the session, they could keep them. More squealing.

Today we worked on isolations: head, shoulders, hips. I made them hold their arms out until they ached, so that they would learn how hard you have to work at this. I showed them isolations at multiple speeds: fast head circles, slow snake arms.

I had them try hip lifts while walking. I was trying to figure out why it looked so strange, what were they not doing right. They were doing everything I said, but somehow, it was wrong. And then, I had it: they have no hips! So I had to figure that if they were alternating sides, they were doing an approximation of a hip lift.

They got out their trays, and everyone could balance! They had all practiced. I was delighted. Now I am thinking that what I want to do eventually is offer bellydance to disabled girls and women. I figure that they might not get too many opportunities to explore their feminine, beautiful, creative sides. Or wear gorgeous hip scarves and play with veils. And anyone could use a little lesson in body control, right? So that’s on my list, now. And of course, I want to come up with a really witty name for it…

This was a phenomenal party. Everyone wore costumes, though some removed them later just for comfort. Natty hang out the whole time, and danced with me. Ben stayed for a little bit, and Max, not at all, except to eat the cake. Around 30 people, and we all fit somehow!

See my Tabblo>

One of the ways I enjoy being a mom is making stuff with my kids, like baking with Nat. These days he is in a pretty good frame of mind, as long as neighbors turn off their outside lights when it is daytime, so he is pretty amenable to projects. The other two boys are not as easy. But Ben asked me to help him make his Halloween costume, and that is right up my alley.

Ben is going to be a Super Mario Fly Guy for Halloween (pictured right). This is a character that is an enemy, someone you have to avoid when playing. The challenge for this costume was the face and the propellor. As you can see, the face looks like it can come off, almost like a paper plate. So Benj imagined it as a paper plate stuck on like a mask, holes cut, and a black stocking behind it, over his head. I made the paper plate into a secure mask by threading a needle with a cut rubber band, piercing small holes for the ends, and knotting the ends of the band.

Then we cut the eye and mouth holes. Then Ben drew propeller blades on cardboard, and I cut them out. The tricky part then was making an axis that could pierce the cardboard blades, hold them together, and stand up straight inside the red sweatshirt hood. I used two paperclips: one I unbent, and made into the axis, and pierced the sweatshirt hood with its end. The other clip slid over the center of the propeller and held it and the axis in place. Voila! It even spins a little. It is a totally adorable bad guy, so Ben. Just don’t tell him the “adorable” part if you know what’s good for you.

Now the next challenge: getting Max to tell me what he’s going to be, if anything, and seeing if there’s a way to help.

Nat came bounding off the bus full of piss and vinegar. He was hopping around, right away talking about Ben’s lunchbox. He always checks Ben’s lunchbox when he gets home, but today he was loaded for bear. There was going to be trouble, no matter what; I could tell just by the way he exploded off the bus. Today he hated the fact that Ben had brought an unopened juice box back home and that I wanted to save it for tomorrow.

We had an argument about it. He got so upset that he raised his arm to his mouth but he did not bite it. He listened to me, and hopped around, repeating, “Save it for lunch tomorrow, save it for lunch tomorrow.”

So I said, “That’s right, Nat!” (Phew, that was easy.)

But he, apparently, had only been giving me lip service. He couldn’t stand it. “Frow it away, frow it away!” Bounce, bounce, bounce.

I said, “Nat, no! That is wasteful! Please don’t throw it away! Let me save it for tomorrow for Benji!”

“No wasteful. No wasteful! Frow away juicebox!”

I said, “I can’t believe you are doing this on my birthday!” And I would not look at him. A little Jewish mother guilt never really hurt anyone — just ask Dr. Freud.

He got very quiet. After a moment he said calmly, “Save it for lunch tomorrow.” My heart blew up bigger than the Grinch’s at Roast Beast time. Oh, Nat, I love you!!!!!!

“That’s right, Nat!”

We sat down at the table and he ate his ice cream, top speed. It was no good. He was just too upset about it.

I got an idea. I said, “Unless — Nat, do you want to drink it yourself?” That would get rid of the damned juice without wasting it. A pyrrhic victory, but a victory no less.

He leaped up. “Yes!” He whipped out the juice box and popped open the straw, pierced the container, then ran over to the sink shouting, “Dump it in sink! Dump it in sink!”

“Oh, Nat,” I muttered. “Drink it! Don’t dump it!”

Squirt, squirt, squirt, squirt. Like a very long piss, Austin-Powers style.

Sigh. “Did you at least drink some of it?” I asked with a tired voice, not even looking up as he rinsed out the sink very thoroughly, destroying all evidence of juice.

“Yes,” he said.

I am out of juice, but you gotta love the guy’s logic and perseverance (you decide which I mean).

Twelve (+ six) long stem lipstick-red roses
Eleven (+ ) tiny cards hidden all over the house
Ten songs on my new Natacha Atlas CD
Nine Red Sox to pull a rabbit out of a hat
Eight steps in Ben and Max’s scavenger hunt leading to new lavender iPod shuffle
Seven lovely cossies
Six yards of fuschia chiffon veil material overhead
Five + forty years
Four new silver Saroyan zills
Three darling children
Two crazy earrings
One first, best, true love

And a very happy birthday for me!

Even though it is not until demain…

Today Ned sent me pre-birthday flowers: blue hydrangea and lavender-blue roses and rolled-up bluish-purple calla-lily type things! Oh, NS!!!!!!! Stunning!!!!!!!!! And perfect with the festooned chiffon that is still hanging from the ceilings down here.

Several cards arrived from friends and family, one with a gorgeous poem in it (thank you Melinda) and some gifts are sitting there, thank you Sarai, CB, M & D, B & A xxxxxxxxxox.

A friend invited me for champagne to celebrate both of our birthdays, and one other friend’s!!!

Also, my red and gold costume is here!!!!! A little tight, so I’m starving for the next few days. (Nah, not really, we’ll simply adjust the lighting.)

And miraculously… Natty sent me a birthday email AND made a present for me in school!!!!!!!!!!!! Oh Sweet Guy!!! Oh, it’s already perfect and it has not even happened yet!

Today I taught my first Baby Bellies class. I am offering an After-School Activity at Ben’s school: Middle-Eastern dance for grades K-4. I got four little girls: two second grade, two first. All I can say is: WOW!!!! Being only the mother of sons, who never played much with girly-girls, this was my first exposure to real girly-girls since I was one myself. (I do not say “girly-girl” pejoratively; I only mean that these are the traditional kind of little girl, the pink-and- hairband-wearing, tights and leggings kind. The kind I was/am.)

I have hardly ever taught anybody anything. So I planned a lot for today. I burned a CD for the class. I studied my own bellydance notes to come up with a lesson. I bought round silver aluminum cookie trays for them to practice posture and balance; I introduced them to beginning veil and zills; I showed them two traveling steps; and I showed them snake arms and head isolations. They used my hip scarves and were delighted by the jingling of the coins and by the colors of the veils.

I am amazed at how quickly little kids learn. Quickly and joyfully. Questions, questions, questions. “Why do you have that on?” (my black lace hip scarf) “Why do they do that?” (balance stuff) “Is this right?” “Can we take these home?” (everything) They are so agile and flexible, they could do just about everything I showed them! And so gracefully! It is just a wonderful thing to watch; they all moved so beautifully, so naturally; delicate, yet strong. It is very different from dancing with older women. It is amazing to think how long it took me to master isolations like snake arms and head circles while doing the grapevine step; these girls tried a few times and could do it. They just needed reminding to slow down!

I am just so happy right now. I can’t imagine a better way to spend my time, frankly, than teaching little kids something they really want to learn. My mind is blown. I hope I can keep up with them.

What’s Good
Gorgeous fall day
House is decorated for my birthday/party. I went all out, Arabian Nights style.
Blood red fingernails, all dry no nicks
Went on Autism Walk with all of us
Nat in totally great mood
Book nearly done, I swear it is!
Bought a ton of different meats so meals will be easy this week
Birthday’s a-coming
I’m so totally in love with my husband

What’s Bad
Gorgeous fall day
Went all out for party next Sat., spent a lot
Ben hated the Autism Walk so finally I had to be a bitch and tell him to cut it out
We will need to pay for both Nat and his aide if we are sending him to social group outings
Not reading anything else at the moment
Shot self in foot vis a vis tons of meat — no excuse not to cook
Ned’s in a bad mood

What’s Beautiful
All six cossies
My decorations
My children
Clean house
Peace, Health, Happiness, Love, Satisfying Work

What’s Funny — My latest Pun-Dit:
My newest joke: Yours until Viagra Falls.