Susan Senator

The detritus of a dancer.
I get such pleasure out of this picture. These are my belly dance costumes, strewn across my bed. The red one is a Susan original (a Shoshana original? Sheherazade? what should my stage name be?); the white and gold is a gift from my darling sister. (Ned and I were talking about how I could have a business: SteamyBras.com; he suggested BellyBras, but I thought that sounded like something you wear on your belly!)

I thought the colors were so delicious I would photograph them. I am very proud of the red top; I made it myself. Yesterday I went to the fabric store and bought beading and trim with the color in my head and came home and laid it all out on an old red satin bra. You are supposed to build the top from a bra or bikini top; I found out the whole trick of it in a wonderful book, called, of all things, The Embellished Bra by Dawn Devine.I tried it with a pink bikini top but after I had finished one cup I tried it on and only then remembered why I never wore that bikini: it’s too small! D’oh. So, ripped it out and started over. But I didn’t mind; I was that into it. I sewed while Benj drew. Occasionally he would look up and ask me a question about it. He also wanted to understand the many uses of the word “boob,” being a third-grader. I tried to explain and to keep him from being too silly, so that he would understand that this was an actual dance costume, etc., etc.

I used to sew a ton B.C. (before children) and when Max and Nat were little, way back when I used to do all kinds of decorating. In fact I had a small business for a while, “On a Shoestring,” where I advised people about rearranging what they had to make a better, more aesthetically pleasing room. I started to get a lot of clients and I freaked. Plus I did not know how to charge friends of friends. Obviously I didn’t charge friends, but what about the friendly women who were almost friends? Oh well. Writing suited me better.

Back when I was home with two baby boys and trying not to go insane, I used to sew Turn-of-the-Century clothing (I mean 19th century) from original dress patterns; it was a company called “Past Patterns.” I made 1890’s shirtwaists (blouses) with all these beautiful tucks in them, and lots of lace at the collar and cuffs; I made a few skirts, a duster, and a little purple jacket. Sometimes I got up the guts to wear my 19th century finery, with laceup boots and a hat with a black veil. I know I probably looked like a freak but I was so happy being 19th century. I still love vintage clothing, but they are always cut too small.

So I haven’t sewn something for myself in years and years. But I got the idea suddenly after going to the belly dance awards the other day. I examined all the costumes that were for sale (and were quite expensive) and I realized that I could probably fake a costume.

All it takes is a bra and some beading. A shmata, some tchatzchkes and some chazzerai. What joy I felt browsing through rose-colored beading and green braid and shiny pink lurex! The colors I picked are saturated, jewel toned, luscious and festive. All my favorites. I don’t care if it’s gaudy. It’s kind of supposed to be! It made me think about my grandmas, too. One, so beautiful and elegant, the other, so passionate and pink-centric. They loved everything I did; what would they have said about the belly dancing? (“Oy! So you’re an Arab now?” Or what my Great Aunt Henrietta once said long ago, eying my developing figure: “Boys like dat!” Or maybe, “Ach, nice!” Actually, that’s what my grandpa used to say… now that was a non-judgmental man!)

I wish they were all here so I could really find out.

Now to work on my routine. I’m going to perform for my family at Thanksgiving, and I think I will ask Laura and John (Laura’s long, lanky, laconic physics geek darling husband) to accompany me on guitar!

I have been feeling ill all day: achey muscles, headache, nausea and other goodies. But, being my parents’ daughter, I still had a kick-ass workout at my gym. I now do spinning at least once a week which is incredibly hard on all parts of the leg but by now you could bounce a quarter off the back of my thighs. I plunged into that hot tub as my reward but I only felt stewed afterwards.

I tried to sleep, but Ben and Max were wrestling so I woke up. I decided to fight this stupid bug and get all dolled up and go to the 3d Annual Boston Belly Dance Contest, in Cambridge, as a spectator, that is. I saw two of my teachers there and bought a ruby red (lips color, Ned’s favorite) panel chiffon skirt. Once that top arrives in the mail, the one my sister bought me for my birthday, I will have a complete cabaret style outfit.

There is a “newbie” category, of those who have been dancing less than a year, and I could have signed up for that but lately I have been feeling confused about some of the basic movements. It is as if my body forgot how to do somethings, maybe because I have so many teachers. I keep hoping that with enough practice I will fuse it together and have my own style.

Today’s “newbies” were very good. One young woman was especially lithe. Long waist, long hair, silver top and belt, maroon skirt. Her quick moves were very sharp and clean, and then her slow moves were snakelike and perfect. I was happy to see some pretty fat women dancing, too. Once they start shaking that stuff, you are mezmerized and you get into it, even with all that waist.

The music just knocks me out. It is very tinny drum, with that Middle-Eastern sax or whatever it is. Kind of like the best part of Zeppelin’s Kashmir. That music makes me high, it is so enchanting.

I left early because my stomach still bothered me and I couldn’t really sit any longer.

Next year, I am entering the contest.

Just feast your eyes on this. A couture ballgown, made of chocolate! Excusez-moi, chocolat. From a fair in Paris. A Chocolate Fair in Paris. Does it get any better than that? Here I sit, having just gotten off the phone with Max, who told me that he won’t be home this evening, because he and the buds are going to a movie, thus shooting my paltry plans with Ned to hell. We were going to have dinner out someplace. I was going to dress up a little (new boots, new jeans, sexy sweater) and he was not, and we were going to have a little romantic evening.

Oh well.

So, instead, we will take Benj and Nat out to dinner, someplace they can manage (probably Chili’s) and I can tolerate. I will have a long hot soak in the tub and let Calgon take me away to the Chocolate Fair in Paris!

Why do I blog about the seemingly irrelevant, goopy, trivial sometimes? Isn’t this supposed to be an autism blog, filled with pith and vinegar? Pathos rather than bathos? Why do I have, as one snotty sniping psuedonymed snark said, pictures of myself on this blog “trying to look young and glamorous?”

How dare I! How dare I try to have a life, a raucous, beautiful, fun-filled life, brass ring and all, even though I am not young and have three boys, the oldest of whom has pretty complicated autism? Who am I, 44-year-old housewife, acting like a Hot Hausfrauer? Isn’t my life supposed to be over? Where’s my freakin’ dignity and pearls?

My pearls belonged to my bubbe, and the last time I wore them was hmm, let’s see… oh yeah, to the White House! As for dignity, well, my dignity belongs to me, and I can dispose of it or flaunt it or flaut it however I see fit. My message, my point, my raison d’etre in the blogosphere, is to say that I am a whole person, that I will not be two-dimensional while others live enviable chocolate-ballgown lives around me. I am not going to be invisible just because society wants women over 35 to disappear. Just because one of my children has a disability doesn’t mean that is all he is and it doesn’t mean my life is over.

Tragedy — or joy — is ours for the taking. Whether in Paris or in Chili’s — choose joy!

The other day I was talking to someone who wants to work with an autistic boy. I loved her enthusiasm and her curiosity. But then she made a starry-eyed comment about how she thinks maybe she can just “unlock” him…

Then, I heard from a friend who told me that her kid’s residential school, once so in love with the boy, is now complaining about his difficulty sleeping and they are making noises about having him there less often…

What’s wrong with this picture? Professionals dumping their incompetence or ignorance on the families. Professionals not understanding what their responsibilities are, who their charges are.

First, let me say that just about every person I have ever encountered who has gone into autism education is an idealistic, bright, competent, loving person. I am eternally grateful to: Debbie, Nyemade, Abby, Teresa, Renee, Jay, Dr. W, Dr. B, Dr. K, Dr. M, Dr. R, Stephanie, Stephanie, Jen, Megan, Maureen… to name a few!

But it must be said that people who go into a profession like teaching need to be aware of their motives and of the possible disappointments. Like anything else, if one’s expectations are too high, or somehow unrealistic, one is bound to be let down sooner or later.

I wonder what, exactly, my friend’s kid’s school thought they were undertaking when they set up a residential home for autistic kids? Did they expect a monolithic group whom they could subdue, guide, enlighten, or unlock? And then, lo and behold, they discover that, hey! Not all autistic kids are alike! Some even have trouble sleeping! Who knew? D’oh, why didn’t anyone tell me?

Seriously, if unlocking is the purpose, then I have a problem with that. Must I say it? Okay: these guys are just people, with unique challenges and personalities, and a school or teacher needs to be willing to get to know them on their terms. Going at a person with a metaphorical key in your hand sounds almost like a violation to me. If my therapist thought, “I am getting closer to unlocking Susan,” I would dump her. Who the hell is she to think she can unlock me? She can tease apart some of my issues, but I am my own keyholder. Some things can stay locked up, know what I mean? My choice.

It is no different for our autistic kids. There’s no mystery, there is only difference. Or as my grandmother might have said, “Unlocked-a is Facoct-ah!

NancyBea has done it again. She is my artist friend from college and if I were ever to like fall, it is because of a picture like this. I mean, this chick has an eye, n’est-ce pas Quik?

This is the perfect jumping-off point for today’s post. Yesterday was a pretty bad day for me (got some hate mail, Anonymous strikes again, plus some local yokels who are annoyed at my stance on a certain ballot question, plus the WaPo rejected another scintillating column, plus I did not enjoy my brand new belly dance class, plus I don’t know what my next serious book is going to be so I feel over). But — I had a great presentation last night, very warm, lots of laffs, so it gave me a good feeling to sleep on.

I thought about how there are moments of extreme pleasure in the oddest times. I realized how happy I felt this morning on my way to the gym, coasting into the red light. The moment that all sides of an intersection have a red light is kind of a wonder. There is a soft stillness and a silence that is such a peaceful contrast from the typical highway-in-action noise. You are forced to stop, wait, look around, breathe.

There is so much color everywhere right now; fall is very late this year. Some of the leaves have turned a ruby red, which Ned calls “lips color.” It is my favorite color to wear and to see. The sky is often a deep silvery gray, which sets off the yellow and the fuschia on the trees. Fall is not my favorite time of year. Its beauty impresses my brain, but it is a cold, flashy beauty that does not reach my heart. To me, autumn is all about going out in style. Glorious, but dying. I don’t like death and dying. I don’t like things ending. I can’t forget that this is what autumn really is about.

And yet I always have a great October and November. They are months where I am often happy and clear-headed. The routine of school forces structure and consistency into my otherwise loose Libra-like existence. My days are shaped by drop-off and pick-up, chores, work-outs, writing sessions, and presentations. The slow spaces in between do not make me ache the way they do in the spring. In the spring I have an enormous feeling of want, and yearning, a need to burst forth into something not quiet perceptible. And yet spring is my favorite season because it is all about potential and beginning. Clean slate, the hot swarming activity of birth, a messy popping out of growth. Yet it sometimes makes me too excited.

So that is the joy of fall. It is a cold and brittle fun, a chilly red nose and chafed hands on the rake, a feeling of imminent loss that makes you rush to enjoy every warm spot you come across. Like my suspended moment at the red light, autumn is a blazing beauty being pursued by hungry, relentless, deathly winter.

But as I said, I’m having a good day.

Wee, sleekit, cowrin', tim'rous beastie,
O, what a panic's in thy breastie!

–Robert Burns, “To a Mouse”

I was sitting at the dining room table thinking what to write when off in the pantry I heard a rustling noise. I froze. Then I unfroze and stood up and walked over to the kitchen. Rustle, rustle, again. I leaned in, heart beating in my throat.

It was coming from the picnic basket on my counter. The one that has little furled up bags of cookies, chips, and some candy. The one that has the little bag of chocolate-covered peanuts with a small hole chewed through the bottom, that I found a few days before. When I discovered that chewed-up bag of candy, I looked at it and thought, “Hmmm, looks like the work of a mouse. I’ll just throw it away, problem solved.”

Ah, the powers of denial. De Nile is just a river in Egypt, it turns out! And I’m the Queen of Egypt, too!

Problem not solved. Rustle, rustle. My mood of fear flipped right over into anger. Why do we have animal problems in this house? Am I such a bad housekeeper? Is our house falling apart? I took out my frustration on the poor — thing. I yelled, “I hear you! I know you’re in there! How dare you?” Or something pathetic like that.

The rustling stopped (of course). Now I had a chewed up basket of snax and a scared critter on my hands. Well, on my counter, anyway. I called Terminex for a home termite inspection, because we have a pest account as well as a termite account with them.

It was the main number. “That’s okay,” the guy said, “We can help you, anyway!”
So helpful was he. I told him my problem and he listened, clucking sympathetically.
“Do you think it’s just a mouse?” I asked, waiting to be petted and soothed.
“Oh, there’s no way of knowing,” he said, and I swallowed hard. “We can send someone out right away,” he cooed. I gave him my address gratefully and hung up.

Then I thought, “That was too easy.” I looked at the basket, which sat inocuously on the counter, as quiet as a — mouse. I dug around my phone numbers and called the local office. A woman answered. I told her about what the other Terminex guy said, about sending someone out here.

She laughed. “Oh, he can’t do that!” she scoffed.
“Well, can you send someone out right away? It’s kind of urgent.”
“Umm, not today. How about tomorrow, between 12 and 2?”
“Okay. Do you think it’s something other than a mouse?” I couldn’t help but ask in my little girl voice.
“No. It’s mouse season.”
“What can I do about this?”
“Just throw the basket away.”
“How?”
“Put it in the trash.”
Oh.

Next I called Ned. I told him about the thing. A lot of silence on his end. The unasked question loomed: Will you come home and take care of this?
And his unasked question hovered nearby: Do you really need me to do that?
I was so mad at him that I hung up.

Okay, Princess, I thought. Get to work. I did not have any gloves. I slipped ziploc baggies on my hands and took out a big garbage bag. I gingerly pushed the basket into the bag, praying nothing would spring out at me and give me rabies. I tied up the bag and ran outside and tossed it in the trashcan. Scrub, scrub, scrubbed my hands. Even though they had touched nothing. You never know.

Today the Terminex guy showed up right on time but a day late. Never mind. I let him in, so happy to see him, and directed him to the empty counter. He looked underneath and in all the bait traps. “No, no action,” he said. He puttered around a little in the basement, looking even in the Silence of the Lambs room (this is what Ned and I call the old basement pantry, a tiny horrible room with gorgeous old brown floor-to-ceiling woodwork matted with cobwebs, one bare lightbulb, rotten wook underfoot, and corners that have never seen the light of day in all 120 years of this house’s life. “Nothing,” he said, coming back upstairs.

“So, what was it?” I asked. “Do you think it was a rat?” My biggest fear: rat or bat.
He looked at me with something I can only describe as pity. “No, you’d know if it was a rat.”
“How?” I couldn’t resist asking. Call it the journalist in me, or call it the scared little girl begging to hear more of the scary story.
“Because they’re big,” he said.
“So what do you think it was?” I asked again.
He shrugged. “Don’t know. You should have looked.”

The following is the proposed text for my professional development brochure. Anyone have any feedback for me?

Inside an Autism Family: What Every Professional Should Know

By Susan Senator, former school committee member, journalist, and author of Making Peace with Autism: One Family’s Story of Struggle, Discovery, and Unexpected Gifts.

I am a writer, public speaker, political activist, and advocate for children and the disabled. My work has appeared in a variety of publications, from educational journals such as Education Week and Teacher Magazine, to the Washington Post, the Boston Globe, and the New York Times. I have covered topics such as my autistic son’s bar mitzvah, his transition to adulthood, my middle son’s adjustment to the high academic expectations of sixth grade, and the day I volunteered in my youngest son’s kindergarten class. From 2001 to 2006 I served on my town’s School Committee.
I talk to groups of any size and make-up.

• therapists
• parents of newly-diagnosed children
• educators
• physicians
• the general public

I have a PowerPoint presentation I can use or not as appropriate. I speak about autism, special education, parenting, living well with adversity and challenge, and taking care of yourself while taking care of children, using my book, Making Peace with Autism, as a jumping off point for discussion. Professionals will be able to complete their picture of the families they work with, and understand better how their efforts translate into family life.

[picture of me, and book cover]

What can the Making Peace with Autism Workshop do for your staff?
The Making Peace with Autism presentation uses a family story with universal truths about struggle, coping, discovery, and acceptance to convey to educators the family perspective of autism. This workshop will

• give professionals a parent’s perspective on autism and family life
• help build understanding as well as provide insight into dealing with autism.
• appeal to any educator who wishes to become familiar with the great challenges as well as useful strategies and resources to help families.
• illustrate, from a mother’s perspective, how to ease a family’s pain and confusion in the early days of diagnosis,
• describe what to do for siblings
• detail what it is like to deal with the school system and other professionals
• give insight into how ultimately achievement, connection and relationships are possible for people with autism.

The Making Peace with Autism Presentation includes:

• PowerPoint slide show
• Reading and commenting on excerpts from Making Peace With Autism
• Resource guide
• Question and answer time
• Making Peace With Autism tips and talking points on what is most important for autism families to know, so that you, the educator can best help and support them:
• -Trust Your Gut: You know what is true about this child
• -Determine Your Priorities. Strategize to achieve them
• -Find Your Supports.
• -Be As Eccentric as You Need to Be. Use humor, turn obsession into hobby, experiment
• -Give Yourself (And Everyone Else) A Break.
• -Define Success Your Own Way

See what others in the field have said about the Making Peace with Autism Presentation:
“My deep appreciation for your exquisite presentation. People were raving about it all day and we have received many comments about your sincerity, honesty, and hopeful perspectives.”
— Dr. Rich Robison, Executive Director, Federation for Children with Special Needs

“Your presentation was both touching and inspirational. We have received many positive comments from the professionals, family members, and students who were in attendance. I found the answers you suggested in response to attendees insightful. Hearing your tips and guidance first hand – from a mother who understands – I am sure offered hope to many struggling families.”
— Dr. Maureen Barber-Carey, Executive Director, The Barber Institute, Erie, Pennsylvania

“Thank you very much for your excellent presentation. Many people commented that they appreciated your candor and insight. Several people also commented that it was reassuring to hear someone talk about gaining confidence even though things did not always go smoothly. I felt your presentation added a valuable dimension to the information this year.”
— Mary Powell, Executive Director, The Autism Society of Minnesota
[pictures from past presentations, television appearance]

Endorsements of the book, Making Peace With Autism:

“Autism is capturing our attention at an almost exponential rate. As more children are diagnosed correctly, more people are coming into contact with children and families who wrestle with autism. As Senator explains, at some point almost everyone will encounter a person or a family confronting the demands it makes on their lives. Fortunately, she has used her own experience as a parent, writer, and advocate tell a moving story, but, more importantly, to offer encouragement and helpful strategies to parents, families, teachers, and friends. This is one of those rare books that not only advises readers how to cope, but also presents very specific ideas families can adapt to help their children and themselves. Educators will find the book particularly helpful understanding both the students and the parents who care about them.

This is, however, much more than just a touching family story. Senator has done her homework – lots of it. She shares the fruits of her research and collaboration with professionals and caregivers who include everyone from physicians and psychologists to physical therapists and professionals who deal with the delicate topic of prescribing drugs to children. She confronts head on the nagging question of whether to medicate, how best to use discipline, just how far to push teachers and caregivers, how to keep one’s own mental health in tow, and how to balance the needs of the rest of her family.”

–Glenn Koocher, Executive Director, Massachusetts Association of School Committees

“This honest account of family life will give great insight into coping successfully with the challenges of raising an autistic child.”

—Dr. Temple Grandin, author of the NY Times Bestseller, Animals in Translation: Using the Mysteries of Autism to Decode Animal Behavior

“There are so many elements of the book that I found compelling—Senator’s capacity to mix eminently practical ideas like Nat bo
oks, with profound internal experiences like desperation and frustration; the capacity to chart a path between challenging society to do better and recognizing the special difficulties of Nat’s condition; the capacity to make autism come alive but retain the book as a story about Nat and her family, not about a disease; the capacity to share the joy of being Nat’s mother while never glossing over the stress. Senator has a huge amount to offer folks who live in the autism world, but also so much more. Somehow, I hope the book succeeds in finding its way onto the bedside tables of many mothers and fathers, teachers and administrators, politicians and doctors. Regardless of whether they have anything to do with autism, they’ll learn a lot about life from Senator and Nat and her family. And what they would learn about acceptance and love would make the world a far better place. I’m hoping…”

—Timothy Shriver, CEO, Special Olympics

A Few Notable Events related to Making Peace with Autism from the Past Year:
Oct 1, 2005: Weekend America, NPR
Oct 2, 2005:The Today Show, on NBC TV nationwide
Nov 17, 2005: WBUR radio, wrote and read a commentary about the Supreme Court decision ruling against special education families.
Dec 28, 2005: MSNBC, interview
Jan 12, 2006: Brandeis University, Genetic Counseling Program, presentation.
Mar 19, 2006: Sudbury Valley Jewish Special Needs Educational Initiative, Annual Best Practices conference, Acton MA, keynote
Mar 4, 2006: Federation for Children with Special Needs annual conference, Boston, keynote speaker.
Apr 11, 2006: Autism Awareness Day, Massachusetts State House, Boston MA, guest speaker
May 3, 2006: Autism Society of Minnesota, 7:30 pm, keynote speaker
Jul 31, 2006: Massachusetts General Hospital, presentation and discussion, Boston, MA.
July 10, 2006: Dinner Guest, The White House, Event Honoring Special Olympics and Eunice Kennedy Shriver

For full list of articles, excerpts, resources, events and engagements, see http://www.susansenator.com

I love Halloween, but there are things about Halloween as an adult that I do not love.

1) Colored spider web: why?? All it does is look messy. Spider web on your house and shrubs should be white, so that it looks like spider web, not as if the spider has been drinking the Koolaid.
2) Boring Jack O’Lanterns: why not take the time to carve something original, personal to you? The triangle eyes and sawtooth mouth is so passe. We’ve done Homestar, Cyan Worlds logo, Spongebob, Harry Potter and the Snitch, polka dots.
3) The bowl of candy without a proprietor. Makes my heart sink when I think of how the kids will take advantage of it, even with your friendly, “Take one, please,” sign
4) The kids who take more than one from the bowl of candy without a proprietor
5) Kids who double-dip, who come back even after you’ve given them three mini Snickers!
6) Houses with no decorations, no lights on. How hard is it to hang up a few pumpkin lights, carve out a pumpkin (creatively), stick a candle in it, and open your door to mini monsters?
7) Psychos who may or may not have spiked our candy with razor blades, making me permanently paranoid, have to inspect every single piece before Nat, Max or Ben quickly gobble it.
8) The fact that parents aren’t really supposed to dress up in a costume. (Guess what I plan to wear, however?)
9) Buying too much candy — D’oh!!!
10) Buying too little candy — Argh!!
11) Teenagers who don’t even bother to wear a costume
12) The fact that candy tastes so good and makes you fat and unhealthy and ill
13) I have no girls, so no pretty costumes for me to make, only stuff like Zorro, Aladdin, Jawa, Met tool, Bag of Candy, frog. Not that there’s anything wrong with it.
14) Stupid doorbell night/mischief; never liked it, never did it. Hate cleaning up wet toilet paper from a shrub, or trying to remove “F***” from a doorstep (happened when I was a kid, felt sorry for Mom and Dad).
15) November 1st is so depressing — apres trick-or-treat, what’s coming? Shorter days, no leaves, hunkering down for the cold weather.

“Hey Mom, if one end of the Asteroid Belt is at Mars and Jupiter, where do you think the other end is?”
–Benji, this morning, before I’d finished my second cup of coffee.

Asteroid Belt? Is that a new fashion, to be worn low and sparkly on the hips?
Why doesn’t he ask Ned? I think it’s so cute and wonderful that he figures he can ask me this stuff; I am so non-science, non-math, but to Ben, I’m still Mom-in-the-know. Or maybe he just thinks I will make the effort to think about it and come up with an answer. Here is a typical conversation with Ben:
“Hey Mom,” is the start of most of my conversations with Ben. “Hey Mom, want to know something about Planet X,025?”
“Hmm?”
“It has three moons and a ring. And the ring on that planet actually protects its moons. I wished I lived there.”
Ahh, this is something I can now relate to. “Why?”
“So I can see how it felt to live with one eye. And you could feel what it is like to just say one word and a laser shoots out of it.”
“Out of what?”
“The eye! And the people of Planet X,025 only live on the three moons. They haven’t ever explored the planet!”
“Oh, then they have something to look forward to.”
“Yeah.” Satisfied, he gets out his pad (There is a stack at the end of the dining room table and assorted pens; a very large stack behind him on the sideboard, of maybe 30 pads, another similarly large stack next to the computer, another of brand new pads on the floor next to the computer, and two totally packed shelves of completed pad stories. Today I am going to try to dust, and I feel very depressed about the prospect! But every time he calls me into his room because there is a spider among the webs of dust on all his Legos, I take the opportunity to say, “That’s why we need to dust in here more often!”)

But I know I am not going to dust today. I won’t get to it. We still have no pumpkins, and it is only two days until Halloween! So the priority today is to go to a nearby farm and get a few pumpkins and carve those mothers. The other thing we must do today is clear our front yard of acorns. The oak tree let loose so many that our front yard is studded with them. You no longer feel grass underfoot; you crunch roundly with your feet.

I will spend a part of today picking up dust balls and picking up acorns and picking up pumpkin seeds and mopping up pumpkin guts and answering hard scientific questions and checking my email and trying not to eat those cookies Nat and I baked and looking for some fun in those things. That is my life on a late October Sunday.

You can pick your friends
And you can pick your nose
But you can’t pick your friend’s nose
— Popular Third Grade Saying

You can pick your friends but you can’t pick your children. This may seem obvious but you don’t really grasp it until you actually have children, and not until they are beyond babies. There is an assumption out there that you will automatically grok your own children. I was thinking this morning about how scrupulously I pick my friends, how I will only choose to spend time with those that 1) make me laugh and laugh at my jokes; 2) think deeply about a lot of things/be intense; 3) don’t agree with everything I say but kind of get me.

We forget that children, even day-old infants, are just people. Do you like/get every person you come across? No. So, just because someone is a composite of your (and your partner’s) DNA, it doesn’t automatically mean immediate understanding and connection.

I am not saying that I don’t like my kids (no F***ing way). I am saying that understanding and enjoying them was not automatic. I have written a great deal about my long process with getting to know, connect with, and find joy in my oldest boy, Nat. Most people probably find it easy to understand that, because he is autistic and the stereotype there is that he is an enigma. (I’ve probably lent to that assumption, as well.)

It is true that Nat is difficult to figure out. But I realized this morning that so are my other two boys. Max is so quiet, so often out or by himself. He was not always like this, but now, I have to get used to a whole different way of experiencing Max. When Max was born, my first reaction was to laugh at this little stranger and say to myself, “Who is this?” He felt both unknown and familiar. When he first opened his eyes, our connection was immediate, lightning. I wouldn’t let friends hold him. I could not get enough of holding him against me. He was so fat and so strong, he held his head up much earlier than babies are supposed to. I could put him in the stroller or backpack almost immediately, which was simpler than using the Snugli (the more complicated precursor to the Baby Bjorn snap-on front carrier) Always making it easy for me, whether he intended to or not. That first summer that we took tiny Max and two-year-old Nat to Cape Cod — that miserable first family vacation spent in a pine-paneled cottage with rain and no television, where Nat cried most of the time because he did not understand what the heck was good about a beach — Max obliged us by lying on his back and kicking sand, smiling. As he grew up, he remained easygoing and sweet. He would always give in to his friends’ demands, rather than fight. I worried so much about him, and my only consolation was his size. Because he was always big, I figured he would not be taken advantage of too much. Because he smiled so easily, I figured he would probably be okay.

I was always careful not to take advantage of his good nature myself. It would have been very easy to spend a lot of time worrying about Nat and leting Max just be. I’m sure I did do that. But I also spent a lot of time wondering about Max’s self-esteem and hobbies. Should I let him be friends with that demanding kid? Should I force him to play piano, soccer? How much should I let him be?

Now, as a high-schooler, he is surrounded by friends (and admirers). He rarely hangs out with me. That boy who used to know exactly how to play with my hair, who loved to play that he was a little ghost sneaking up on me, he turned into a young man overnight, who on his own does his homework, gets A’s, hacks on his computer just like his Dad, and has the same serenity of his Dad. With a sharp sense of humor (like his Mom!). Max just lets me know in his own quiet way how much I should let him be — even though I really, really want to hang out with him so much more! He has become just what he was: a competent, self-contained, strong and tolerant young man. I guess I’m saying that Max was relatively easy to get to know and to love.

Benji, now in third grade, has been much more difficult. One of my earliest memories of Benji was struggling to get him to latch on to my breast for nursing and he was howling angrily and hearing the housepainters on the other side of the wall say, “Angry Baby” in a thick Irish brogue. He always let us know, immediately, his displeasure with anything. The struggle has been in finding what makes Benji happy, getting to his sweet side.

His nickname is “Beast.” This came from when I called him “Little B,” which he did not like. I got annoyed at him for not liking that clever nickname. (Alright, maybe it wasn’t so clever, but I thought that the “B” could also be “Bee” indicating Ben’s sting.) So I spitefully said one day, “Okay, how about Little Beast?” He was very happy with that.

That is the key to Ben, which I only recently discovered (he is now eight). Ben likes things to be harsh, spicy, not sentimental. Soft feelings make him uncomfortable. This took me years to understand, although I did say he was, “Sugar and Spike,” when he was little. I understood him on one level, but not on the level I’m on now. Now I really enjoy his nastiness. He frees up my nasty side, too. He is delighted when I tease him by saying stuff like, “The milk you’re drinking is actually eel’s milk,” or something like that. [Just now, he just asked me, “Have you noticed that when you turn the shape of South America upside down, it looks like a poop?” Good old Brookline Public Schools curriculum! He is actually familiar enough with the shape of South America that he can liken it to the shape of a poop.) And I, with my far more limited knowledge of geography — just answered, “Um hmm!” I don’t know — maybe it is shaped like a poop!

That is Ben. It took me years to understand that I could just roll in the dirt along with him, that not every child had to be easy and obviously happy like Max. Life is probably not going to go smoothly for Ben, but it will always be interesting. Ben is not easy for me but he knows how to get under my skin and latch right onto my heart.

All of our children find their way into our hearts. But connecting with our minds: that is far more of a challenge. We don’t pick our children but if we work really hard at it we can eventually dig them. Hopefully sooner than later.

Today I attended the first part of Jim Fischer and Kristina Chew’s Autism and Advocacy Conference at Fordham University in New York City. The conference was another of these unique new gatherings (I and the organizers hope that it becomes an annual event), in which both those with autism and autism advocates and parents come together to discuss “the mystery of suffering coupled with extraordinary gifts,” as Jim Fischer put it, that is all part of the autism experience, and the idea that people come to the autism experience from very different contexts and perspectives (and the results of that). The thrust of the conference reminded me of Estee Klar-Wolfond’s Joy of Autism lecture series, where both autistics and NTs spoke of their experiences and exhibited art as well. These two conferences have aided in my own awakening of what the experience of autism in my life has meant to me, in a positive sense.

In our society it is very easy to see what disability means to people in a negative sense. The very word “disability” has a negative connotation with the “dis” part. Dissing is never a good thing. In fact, this was the first point that today’s keynote speaker, Special Olympics Chair Tim Shriver, made: he talked about his own term, “diff-ability.” He joked about how it sounds like you’re lisping, but other than the gracelessness of its sound, it is right on the mark.

Are you groaning at the attempt to politically rectify the term disability? Well, cut it out. That’s not what this is. Tim is merely trying to be more accurate about how he views the people in Special Olympics, the people like Nat. It is like Estee’s or Kristina’s point, or Peter Gerhardt’s point: we are talking about autism and “disability” as a different experience of the world, not an inferior or bad one. Diff-ability is more dignified, albeit awkward-sounding.

Why are so many of us at these conferences making this point? Because the paradigm around disability is shifting. As autistics find more and more ways to make themselves heard — and NTs listen — we will all begin to understand a different and extremely important worldview. More people will be able to lead happier and more productive lives, removed from shame. Getting rid of the shame around disability is crucial to happiness.

The point that hit home with me was the difficulty Tim has with explaining what he gets out of working with Special Olympics. People right away assume there is something noble about it; that what he gives is far more than what he gets. It reminds me of when people say to me, “Nat is so lucky to have you, you do so much for him,” as if maybe there were a chance that I wouldn’t do this for him, but he lucked out because I’m such a saint? Look, I know that people do not mean this when they compliment me; but I hear this sometimes nevertheless. There is some sort of implication that I am more than a mother. But I am and will always be just my boys’ mother, with many flaws to boot.

How do I (and Tim and the others) convey that there is nothing to pity here? There is hardship but that does not make my family unique. Would I love it if Nat could talk to me about what’s on his mind? Yes, of course! Would I love it if I did not have to worry about how he was going to support himself one day? Definitely. But why stop there? How do I know what difficulties life will throw Max’s way? Or Ben’s way? Does autism give me some kind of crisis crystal ball?

More than that: How do I convey that there is actually a gift here? Without sounding corny? While I was having coffee with Tim, he asked me if I’m more vulnerable now because of Nat. I thought about it and realized I am tougher because of Nat. I used to be much more of a mess (believe it or not!) in my twenties. Nat came along and forced me to grow up, to listen to my instincts for the first time, and to figure out what was important to me and my family. That little blondie threw me the curve ball of all time, and forced me to become a really good batter. With the bar mitzvah, I hit one out of the park. Other times, I struck out abysmally. (Look at me! Nat even forced me to become a sports mom!)

Nat, in his own Sweet Guy way, taught me that I can love unconditionally, and without any obvious evidence of love in return. I can love on faith. And perhaps best of all — and this is my list only as of today — Nat taught me to have faith. He taught me that shit happens, but also, development happens. If you don’t give up.

Some people curse God and the universe for visiting autism upon them. They believe that their lives or their children were stolen. I used to be one of them. Now I see mine as evidence that there is a God.

I guess you could say I’m lucky to have him.

And breathe. Just breathe.
–Anna Nalick

I wonder about relearning a behavior, or learning a new skill, and how difficult it is to do that. While Nat has been sweating it out with our new home program, which uses a technique called Verbal Behavior, I have been working at mastering a bellyroll for weeks. Both Nat and I are learning new ways of thinking and doing things as basic as breathing these last few weeks, and it strikes me how frustrating such a thing can be.

I still hesitate a moment before I even tell people that I’m belly dancing. Some people don’t get it; they are somehow afraid of it or they think it is something it is not. It is not striptease, pole-dancing, jumping out of a cake, etc. It is an ancient art form that is found in a great many cultures and first came to America in the mid-19th century. It takes as much discipline as ballet, and yet it can be (and is) performed by the very old as well as the very young, the fat, and the thin.

People smirk about belly dance, but the fact is, it is a very difficult exercise to perform. Every set of muscles in the abdomen — everywhere else, too, but abs in particular — eventually is worked and isolated to get those undulations. That is much harder than learning how to do crunches or sit-ups. You have to think about where the muscle set is and then focus on moving it some way (up, down, to the side).

A bellyroll is completely counter to the American cultural view of what a woman should do with her stomach. We are taught as little girls to suck that gut in. We are taught to have flat stomachs only. But a bellyroll celebrates the fairly universal female tummy, which, let’s face it, sticks out a little bit. Especially after having children. With the bellyroll, you have to suck it way in, navel to spine (or as close as you can get it to that) and then lift it up as high as you can, and then, push it out, way out. Then you bring it in and up again. That is the roll. It is quite beautiful to see it, also kind of freaky. You have to do this while not moving anything else, except perhaps while performing a hip shimmy, at a faster rate. Oh, and maybe snake arms, or arms framing your hips. No other jiggles. And still breathe and smile. Good luck.

I find this difficult on a few levels. First of all, I am not used to looking at my belly willingly. I have never liked my stomach; even at my most youthful and firm it was not firm (I’m talking 14 or 15 years old). But now, after three pregnancies — ! Second, I am not used to pushing out my stomach that way, and so quickly. It is difficult and weird looking. Third, I have trouble breathing while I do this, so at about the tenth roll I start to see stars and hyperventilate. Ned asked me, “Are you supposed to make that noise when you do it?” Ned, with his brutal honesty, is the perfect audience to start with because I really have to build up my thick skin to continue through with my performace around him! I only dance well when I’m feeling confident, so my challenge is to pull back into myself (even if I’ve just danced over to under- appreciative Ned) and not lose my cool.

Nat loves to watch me belly dance. He loves everything about it: the music, the beat, the waving of my arms, the fact that I’m not looking at him when I’m moving around the room, so he can stay in there comfortably and experience it. I did try to wrap my veil around him the other day, but he leapt up in terror. Ben, on the other hand, loved the veil dance and even blushed! Max stays far away. So I mostly dance for Nat.

Yesterday, Nat was having a good day (had participated in all kinds of things at school, used words very well to express what he needed, that sort of thing) and seemed happy to be home. And then I mentioned that his therapist was coming soon, so he could watch a video and then work with her. “A short video,” I said.

Ben came in a few minutes later and said, “He didn’t pick a short one, Mom. He’s watching Pinnocchio.” Jeez! Pinnocchio is our longest Disney flick! The therapist would show up and Nat would have to take it out and then he’d be mad. I went in there and said, “Nat! You can’t watch that! It’s too long! I told you to get a short one, like a sing-along!”

Nat started biting his arm, and jumped up. My stomach clenched in fear (not a good isolation for belly dance, by the way. Fear is right out.) I knew what was next, (he was going to go for me) but I did not panic. “Nat, come on,” I said quietly, “It’s okay. Just watch Under the Sea. After you’re done with therapy, you can watch something else.”

He looked at me with those wide eyes, his whole body shaking with anxiety or anger or whatever, and he listened to me as if I were repeating sacred texts. My explanation was his lifeline — or so it felt. Both his teacher and his home therapist have been working hard to teach him that he can get what he needs, he can find the words; they are building up his confidence in part by giving him the words and then letting him say them himself. I imagine that the words they give him almost reach out and pull him out of his despair and frustration.

He approached me and put his hands on my arms, firmly. I prepared myself to be pinched, but I thought, “Look at him! He’s so agitated! How can I help him? He must feel constantly thwarted by the world around him!” I sought for a way to throw him that lifeline. I concentrated on my sweet boy rather than my fear for my arms. I isolated my love like a muscle and focused on that alone.

I think he could tell I was on his side. His hands on my arms became a hug. He pulled me to him and held onto me for like two minutes. He put his hands in my hair, but did not pull it. We just stood like that, quietly. I could feel the electric energy drain out of him. His breath returned to normal. He let me go and walked back to the television, then he came over to me again. Another hard hug. Then again.

And then he was done. He sat down to watch Under the Sea.

I said, “Any time, Nat. Just ask.”

I have pitched this to the “Coupling” section of the Boston Globe mag. I think it’s pretty funny. Maybe some of you with kids and multiple pressures and stresses can relate!

I’ll never forget the burning humiliation and frustration of that summer’s night, twenty-something years ago, when my mother knocked on my bedroom door, saying in a tense voice, “Susan, he can’t spend the night in there,” referring to Ned, who was to become my husband several years later. But we did not know that at the time. All we knew was that we were adults (both of us, nineteen) and I could not believe how unreasonable and Medieval my parents were turning out.

I stepped out into the dark hallway and looked at her in disbelief. Ned and I were living in the same dorm room back at college, after all. But Mom’s lips had that tight, gray look and I knew there was no arguing with her. “I can’t believe this,” I muttered angrily, sending Ned into the guestroom. I chafed at the injustice, and also at the need to stuff all my piping hot libido back where it had come from. But I also remember thinking, “If Mom is this mad, Dad must be even worse,” and I shuffled back into my girlhood bedroom alone, secretly relieved that she had come to do the scolding, rather than Dad.

After that Ned and I simply stole time together, coming up with ever more creative ways to evade my parents’ rules. Like the time later that same year when I told them I needed the car to visit my sister in Williamstown, but instead I drove to Cambridge, to M.I.T. where Ned was working that summer. I called my sister and confessed how I planned to dump her for my boyfriend that weekend.

“Oh,” she said, laughing. “Yeah, go ahead. I completely understand.” After all, she had grown up with the same parents. She knew all about sneaking around them. I headed off to Cambridge, where I had never been, without a map or directions, just a street address. But I knew eventually I’d find Ned because I had the determination of a young woman in love – and in lust.

It turns out that the determination of a young woman in lust has nothing on the determination of an older woman in lust. I don’t really understand it, let’s just say that in my forties my husband and I have had a kind of a blessed Renaissance in our love life. But we are also blessed with three children. And so we have a problem, reminiscent of our old problem: finding ways to be together without their knowing.

Max is our fourteen-year-old. Hiding from Max is tricky. He is always around in the evening, on the computer, which is in a room in the middle of the house. Nothing gets past him, literally. Plus we live in an age where children learn, of necessity, the facts of life very early. And we live in progressive Massachusetts, where such things are often part of the elementary school curriculum.

Because of his age, Max is allowed to stay up until past 10 on a school night. Because of our ages, Ned and I usually can’t stay up much later than 10 on any night. This poses a big problem, in terms of discreetly meeting our needs. Like the a time recently when we slipped upstairs at 9, and he teased us innocently for always going to bed so early. Later, we felt energized enough for some Jon Stewart. When we crept back, Max was still there, online.

“What must he think?” Ned whispered to me. “He’s got to know something’s going on.”

“Maybe he doesn’t put it all together,” I said hopefully. But my face was bright red, and I could not bring myself to look at Max or to tell him that he should have gone up an hour ago. I think I barked something at him from the other room, so I wouldn’t have to guess at what he knew.

Ben, who is eight, is an even thornier challenge. He is still of the age where he might forget to knock on a closed door. Happily, we live in a battered old Victorian, whose doors have swollen into the doorjambs and so nearly every one of them has to be pushed hard to open it, giving the guilty party a little reaction time. Nevertheless, my husband and I had a moment’s panic one recent passionate Saturday morning when we stole upstairs, figuring that we had just enough time, breathless with excitement at the chance for being together in the fresh morning light, as opposed to the dark, tired evening. Nat’s video had just started, Max was on the computer, and Ben seemed to be busily drawing.

What we didn’t count on was the eight-year-old boy’s sudden, inexplicable need for Legos. Even with that door tightly closed, when I heard the light patter of those little feet in the hall, just a few feet away, I felt as if I’d had cold water spilled all over me.

Actually, it was worse: I felt as if my mother were standing right outside. What goes around, comes around, I guess. And when you’re being naughty, you can run but you just can’t hide.

Don’t bring around a cloud of rain on my parade.
–Barbara Streisand, “Funny Girl”

(NOTE: This is dedicated to the Commenter Anonymous whom I usually delete because he/she/it is very meanspirited and makes ad hominem (ad-feminem) remarks to me. This is not for all the Anons who have contributed to the conversation in a civil way. It is not a necessity to agree with me; but being kind and courteous is.)

There once was vile commenter Anonymous
For whom this blog post is eponymous
He/she’d rant and he/she’d rave
Being the opposite of brave
With the grace and manners of a hippopotamus!

What if there were some truth in Bettelheim’s theory of the “refrigerator parent?”

I do not mean to stir up a hornet’s nest, but I am an honest person, so I have to unknot these thoughts that occurred to me the other day. I was talking to a friend — well, not really a friend, but someone I have known for years but never connected with as a friend, though I tried — who has a son close to Nat’s age, a boy very committed to his ASD. I had not seen this friend(ish) in a while, and this time, as I hung out with her and experienced her ways, I was struck by a certainty that she must be on the spectrum. I felt this way because the way she has always come off to me is as cold, superrational, distant, stiff and awkward. (Please do not think that I am saying that all people on the spectrum exhibit these traits; I am commenting on the way her particular social skill set struck me, in an ASD light.) For years I thought that her treatment of me was something about me, that she despised me because of me. (That is where I have traditionally gone when I come across someone who does not appear to warm up to me; I assume they do not like me and that it is because of something intrinsically flawed within me. I have been from time-to-time, a classic low-self-esteem type who goes around believing, deep down, that I am flawed and that sooner or later others will detect it and move on, repulsed. These destructive thoughts have improved within me over the years and for the most part I think I have healed. Increasingly I have the wisdom to realize that what I am feeling when I come into contact with such a person is their own shit, rather than their detection of mine. Also, I have to deal with the fact that not everybody likes me, isn’t that right, Nasty Anonymous Commenter Whom I Delete?)

Anyway, all of this came across to me in a moment of great clarity, as I observed her treat everyone else in our little circle that had gathered after that evening’s presentation, with the same strange, condescending, sometimes insensitive, unpleasant manner, while at the same time realizing that she was trying really hard to socialize with us! I understood, finally, that the way I feel around her is not about me, or anyone esle there, but is truly and discretely about her. I had a flash in my head that said, “maybe she’s got Asperger’s.” And why not? Her son is very autistic; autism is largely genetic. (Buzz, buzz go the hornets. I’m going to duck and take cover after having said that!)

If you connect the dots, you begin to see what it is that Bettelheim might have been seeing. Rather than cold, unloving, rejecting parents, wasn’t it possible that he was observing the behavior of parents who were on the spectrum, albeit in a different location from their autistic children? How often do we hear about autistic children being born to “very intelligent” or “engineer-type” of parents? And then don’t we also often say that “engineer types” are on the spectrum? (Ned’s mother used to say, “just give Ned two pencils and he’ll be happy for hours.” I’m just saying!) The problem with Bettelheim’s conclusion is that he posited that the parents had rejected their children, the same way that I had once concluded that this friend(ish) of mine had rejected me. Bettelheim’s error was in concluding that the cold-appearing parents did not love their children. He appeared to have judged them as being flawed, cold people, when they were probably simply differently wired people who do not exhibit neurotypical modes of parenting. But if you start with the assumption that autism is just a different way of being, rather than a tragedy or a disease, then there is no problem with assuming that the parent may have it, too, and is not actually rejecting his own child but is actually behaving in a manner that comes more naturally to him. In fact, the parent’s ASD may make it easier for the parent to understand and connect with the ASD child, depending on how self-aware the parent is. Who knows?

This friend(ish) of mine loves her son and has done a tremendous amount for him. I can see through her awkward manner. (Just like I can see through Nat’s difficult behavior and understand that he loves us and wants to connect but is a bit stymied as to how to show it in a way that we appreciate. See page 195, MPWA) I remember her trials with his diet, medication, inclusion in the public schools, the joy of finding a good program, and then the heartbreaking decision of residential living. It appears that he has benefited very little from most of her efforts. For now. Or has he? Who knows, except him? How much worse might things have been for him had she not given what she did? Or would he have been different if he had been born to a mushy, messy NT(ish) mother like me? What would Nat say? (“Okay, yes.”)

I do not have the answers, just the questions. Maybe ASD children are often born to ASD parents, albeit undiagnosed ones. Not that there’s anything wrong with it!

Thanks for the Nap

Whatever doesn’t kill me makes me stronger
But those feelings almost killed me, made me hate my head
So does that make me really really strong
Or does that make me almost dead?

An old friend returns to me and beckons
A new friend withers and decays
You, oldest love, my first, were second
Until I and time cut through my haze

Our old baby shines brightly then burns me
I said I wouldn’t but still ask why
Our second son, the sun in splendor
Moves higher and higher into an endless sky
While little one, so young and tender
Already looks at life with jaundiced eye

I’m sure of nothing but my spilled heart
The ground is soft again, my feet fall through
I try to move forward, with dance and art
–I’m okay as long as I can lay down with you.

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

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

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

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

Exactly.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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