Susan Senator

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 books, 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.

It's the circle of life
And it moves us all
From despair and hope
Through faith and love
Till we find our place
On the path unwinding
In the circle -- the circle of life.
--The Lion King


My life is shifting again. I can almost feel the different forces undulating in circles around me, like ripples in water moving outward, new touching old, with me at the very center. Each circle flows around me and connects me with other people and ultimately brings a new understanding of myself. One of the circles is my travel, which literally brings me to new places and new people. Another circle is my understanding of Nat and autism, which intersects with the travel circle. Yet another circle is the belly dance, which is best performed in a circle and brings me out of myself, makes me feel bold and confident, and brings me into contact with a lot of new women who share this joy and mode of self-expression. And another circle is my writing, which takes me to new places through my mind but lately has also enabled me to travel in actuality.

Never before have I felt such a strong sense of things being meant to be. I am not a determinist, although I was fascinated with determinism and fatalism in graduate school, and in fact my master's thesis asked the question: Was Tolstoy's Worldview in War and Peace Determinist? (I believe that in fact it was not.) But lately, everywhere I go -- and I have been going very far afield -- I meet people who affect some of my core beliefs and assumptions. When I was in Toronto, I met Valerie Paradiz, who caused me to rethink autism stereotypes, even though I had thought I was way past having any. Valerie made me realize, among other things, that I still had some residual shame regarding Nat's autism, and that I needed to cast that off so that I could better help him deal with his differences. It is my responsibility as his mom to explain autism to him and how it affects him and what he can do to advocate for himself.

Yesterday I returned from Wisconsin, the Autism Society of Southeastern Wisconsin annual conference, where I and Peter Gerhardt were the keynotes. Peter just blew my mind. His whole thing is about taking guys like Nat and helping them bridge school to work. He helps autistic people become independent, or actually, interdependent, as he put it, because in this world you actually have to learn how to get help from others in order to be truly independent. He talks about giving his guys skills out in the workplace, in real-life situations, and he succeeds by also training the neurotypical environments around his guys. You give the outside world the information they need to help, and you give your ASD kid the skills he needs to do the job. The skills are broken down into three components: 1) production, the actual product you are making; 2) social, the interacting among others in the workplace and customers; and 3) navigational, the actual moving around from place-to-place in a job. Peter says that all three must be taught and that often only production is taught in schools. The other two components are harder to teach, but it can be done.

Peter is such a can-do kind of thinker, he makes it all seem obvious and common sense, but he is actually doing a very difficult thing: giving someone who has limited neurotypical understanding the tools to succeed in a neurotypical environment. When you think of it that way, it is so much easier to avoid embarrassment, judgment, shame. An example of this is how Peter explains stims to the NT employer: he says, "You like to rock in a rocking chair? Feels good, right? Well, he rocks while he's working or talking to you. It feels right to him." Simple as that. Or, let's say he talks to himself. You can get him an ear attachment for a cell phone so that it looks as if he's talking to someone! Little tricks to help an ASD guy navigate the NT world.

All this got me thinking about my perpetual reluctance to bring Nat out into the public. The fear of embarrassment (mine) and shame (mine) if he has a tantrum. But I realized today that I can handle it, no matter what. We met friends (a D.C. couple we became friendly with at the White House party we attended in July) for brunch and we took Nat with us. He had a total meltdown when he found out we could not go to Zaftig's Eatery; it had a 90 minute wait. I wasn't afraid, while he was clawing Ned and people were staring at us! All I felt was, "I'm going to help Nat feel better about this." And I wanted to explain to people that all was well, and they should stop staring and tend to their own gardens. It was their problem, not mine, however! I had absolute confidence he would be okay. Gone entirely were the spectral feelings that I had a monster with me. I know, I know, I keep re-learning this. It is one of my life's lessons. Nat shows me that I am stronger than I think.

I don't know yet where the belly dance fits in, except that it has made me feel stronger and happier in my own skin, and more open to meeting people. I talk to them about dance, and autism, and I find people almost always connect with one or the other. A friend of mine who is in publishing became my friend through writing but she now takes a belly dance class with me and she bought me a beautiful book on belly dance by Dolphina, which fills me with excitement and anticipation for my next class, every time I read it! Another connection. My friend from D.C. -- whose husband is a big international lawyer for disability rights -- (there's the autism connection) -- told me that her four-year-old loves to belly dance! A tiny circle. And in November, I will begin dance lessons with a new teacher, who teaches in a circle, not with mirrors. I keep coming across her name in the belly dance websites; she even went to Penn (another tiny circle!).

I feel the circles that began emanating outwards -- from mothering Nat (who once nested in a circle in my womb), to writing my book, to going to DC, to becoming more known and being asked to give more and more talks, meeting more people who then change my mind further -- and curving around and meeting up again with where I mother Nat. I began kind of alone, with my beautiful, en-soi baby whom I did not understand, but whom I loved until my heart felt wrung out, and I ventured out into the world to learn about him. Along the way I became a writer, a public speaker, a dancer. In doing so, I learned about Nat; and in doing all of this, I learned about me.

(and by the way, Nat listened to the Lion King CD after his bar mitzvah was over, his bar mitzvah being one of the most momentous and transformative experiences of my life so far.)

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

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

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

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

Exactly.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Happy Birthday

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

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

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

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

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

Happy Birthday from Dad

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And today has been a wonderful day:

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

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

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

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

I felt like a queen, or perhaps a princess...

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

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



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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Today I have been a good mother. It feels like it has been a while. I hate that. Why is it so hard for me to suspend my stuff and transition to the kids? What is the block to just sitting down with them, or putting them in the car and going somewhere with them? I still do not understand that. I am very dismayed that it still happens to me, after all these years. Maybe it is because Ben doesn't like going places like out to a park, on bikes, the beach, or malls (unless there is a Lego store). Nat doesn't say where he wants to go, but I cannot honestly say it is because of Nat having a potential tantrum; it's been so long since he has been difficult in public. But maybe it is partly that, because it doesn't take much to make someone gun-shy.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Did I disappoint you?
Or leave a bad taste in your mouth?
-- U2 "One"

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I wrote this last night, then went to bed without posting it.

I look outside and the darkness of Erev Yom Kippur, 10th Tishrei, in the year 5767, has (appropriately) descended. This is supposed to be the holiest day of the year for Jews, and here I sit with my laptop feeling just a little bit melancholy that I'm not honoring it in the traditional way. Old habits die hard. By that I mean, I'm not going to services tonight and hearing the sharp, loud, breathy tones of the shofar (ram's horn) or Kol Nidre, which is a tenth century prayer that you are supposed to hear three times during Yom Kippur. It means, literally, "All Vows." Its origins are supposedly about releasing common folk from vows they made during the year which they did not fully understand. It then became a release of all vows made to God, but not to anyone else. It allegedly became popular throughout history because of the many times Jews were forced to convert to a different religion; Kol Nidre absolved them from these vows. My understanding is that Kol Nidre is a kind of erasing the slate, a way of beginning the Day of Atonement, Yom Kippur.

On Yom Kippur we're supposed to think about all the things over the past year that we did which we should not have done, things we regret, things that hurt people or ourselves, things that do nothing to make the world a better place. I love hearing the rabbi recite all the different sins we may have committed, and then putting them into real life context: "for the sin we sinned before you by acting callously..." becomes "I was nasty or competitive with someone in the PTO."

Mostly I think about how many times I just let Nat lie around without making the effort to engage him "purposefully," which is good for his development, his independent living skills. I think about how I should also try to find that special connecting point every day, share a laugh or smile with him. Nat is like a big orange poppy, so wonderful to look at, delicate to touch (petals fall right off), finicky to grow.

I think about how to be a better friend to Ned, to shut up and listen to him more. Ned, my bouquet of daisies, easy to grow, abundant, bright and light and hardy, beautiful in a backdrop or in a crystal vase, and which, if you pick the petals, always end on "he loves me." How to take care of Ned, because he takes care of all of us.

I think about how to reconnect with Max, tall, masculine indigo delphinium, strong, stunning to all. A favorite in the garden. Yet can't grow everywhere. If happy, returns and stays forever. How to make sure he's happy.

I think about how to nurture Ben, my rose, smells wonderful, must be pruned and fed just right to grow properly, who has so much sweetness dripping out in between his thorns. How to respond right to Ben when Ben corrects Nat for something Nat has said incorrectly, but uses a mean, sharp tone.

I think about how to be better to me, (not in terms of pampering myself, which I excel at) about not beating myself up or engaging in destructive behavior with others. How to let go when I need to, and hold on when I need to. I think maybe I'm an oriental lilly, which appear delicate but are actually very tough, grow in many kinds of places, can overwhelm with their scent and exotic looks.

We don't belong to a synagogue, but we used to. That is how Nat and Max became educated in Judaism. I and a few other parents started a Special Needs Task Force, because prior to our joining there was nothing available for the education of kids with disabilities. We shamed them into doing the right thing. I kept referring to Moses, who had a speech problem. By the time we left, there were trained tutors for kids with autism there.

So why did I leave? The cantor broke my heart. When Nat was 12, with bar mitzvahs just around the corner, I found out that all the other kids in his class had already picked their bar mitzvah dates. All that was left for Nat was a Monday bar mitzvah. I wanted the whole nine yards: a Saturday morning bar mitzvah, in front of the whole congregation. I was told he would have to wait until next year, then. I felt so betrayed, we withdrew from the temple and we made our own bar mitzvah for Nat. We did it not to be "good Jews," but because we wanted to show our world, our little circle of family and friends, all that Nat could do and that he was no tragedy. What better way than to have have him lead a ceremony that goes way back, thousands of years, just like so many other 13-year-olds before him? Not to mention how much fun it was to have a party in the Copley Plaza!

We are Jews without a temple. It's not so terrible. What matters is what we believe, how we act, and what we do with our lives. That's what I tell my boys.

I told Nat that this is a holiday where you think about being good and calm. Where you think about God, who is all around but you can't see Him.

He said, "Yes."

I tell them all, be the best you can possibly be, make the world a better place, starting here in our home. We celebrate the holidays in our own way, at home, with family or friends. It's just that on Yom Kippur, I feel bereft without hearing the Kol Nidre, or the shofar blown. (So I looked up Kol Nidre on iTunes and listened there!) These ancient, strange sounds bring me chills and shock my senses so that I feel connected with the wandering tribes in Israel, way back when. The shofar is like a call across the centuries, binding together all of us in our belief that God is still with us, though sometimes difficult to sense. If you tune into what is good inside you and others, you will find it, I think. What I tell my sons is, God doesn't care if you speak Hebrew to Him in one particular building or another, in Arabic, English, Farsi, or in Latin; He doesn't care what kind of meat you eat, or whether you know a prayer or even how to talk; God is way above caring about whether you eat food on this day or not; a Being like God is all about goodness, and goodness alone. You know what that is, I know what that is. God is everything good that happens, in the world, between people, in your heart.

God, as Nat says, is "Yes." (No, not that '7o's band!)

Happy New Year, L'Shanah Tovah!

Yes, another blog post! Can you handle it?

Okay, let's just say I'm working on a book that is about living well with autism. I need a sample chapter PDQ, so I am asking all of you autism parents to think about the worst thing that ever happened, the worst crisis ever concerning your autistic child -- this could be how others treated him/her; a school system idiocy; a total meltdown; an embarrassing episode; a really annoying behavior. Now don't worry, this is not a book that will denigrate autistics; it will be a book that illustrates the entire gorgeous and horrifying, boring and mundane, the spectrum of life, the panoply of being, whether autistic or neurotypical, and how to figure out happiness moment-by-moment living with an autism-tinted family life. After you have described said crisis, briefly tell me, what did you do about it that resolved the problem? And, what did you do to make yourself feel better while it was happening?

Email me a little summary or leave a comment with contact info (email or phone). Then when I'm ready I may contact you for an interview and you will be one of the Voices of Experience in my new book.

And thank you very much.

I am working on a new proposal but other things keep going through my mind, so I thought I'd make a list. Here, so far, are a few things I want for my birthday (some only Ned can provide):
1) A gorgeous bellydance costume, accessories
or this one.
2) Tix to Eric Clapton
3) Tix to a Comedy Connection show
4) Dinner out: you gourmands, give me suggestions in the Boston area!
5) This treatment at Bliss Spa
6) Or this one
7) Night out drinking or desserting with a few compatible girlfriends
8) A fantastic cake
9) Real fire in one of my fireplaces -- not a 3-hour log -- huge chocolate bar, champagne
10) Gift card to Anthropologie

I need a book idea!
I have an agent interested in something that I could write, but I'm not sure I feel it deep down in my heart, where my best stuff comes from. Same with my editor: she has given me an idea, but it is very research-y. Not me. I'm a bit of a Lazy Libra. (Note: birthday is October 18...) MPWA came right out of my heart/gut. That's my favorite kind of writing. If I wanted to do research, I'd have my PhD by now (drat that Harvard; but see? they probably could tell that I'm a heart girl not a whatever girl). Anyway...
Here are some ideas I've had. Please don't steal any of them!!!!!

1) Other parents who have made peace with autism -- editor kind of liked but called it a "small" book. ouch.
2) Taking care of your child, taking care of you -- living well with autism. Totally tips and strategies, illustrated with anecdotes, that I and others have come by for being our best even when life gets tough (even yesterday, a really bad day, I managed to cuddle with Ned after a nachos dinner and watch a nice movie with lots of kisses before and after, plus I did three laundries and changed the beds and got Max and Nat to vacuum. In between, I took a huge nap and felt really sorry for myself!) I'd have to interview lots of people, which is fine.
3) Things my sons have taught me -- mother of three very different boys, none of whom are "mainstream," maybe ten chapters, 3 per boy, one sum-up
4) Things autism has taught me -- focus on Nat
5) Things others have asked me (at conferences and in email) about autism
6) Blog of a mad housewife -- collection of my blog posts, some published, some not

Okay, please either rank them in order, favorite to least, tell me why, if possible, or give me a new idea. If someone provides me with an idea that I actually use, he/she will get a prize. Maybe your favorite candy or an autographed, personalized copy of my book? I don't know what you'd like. My undying gratitude? Ned says I get a lot of hits on this blog, so I'm hoping it will help me now!

I am poised and ready. I really need an idea and I'm turning to all of you for help. Thanks! And again, if you steal any of these, you are an evil person. Don't be evil, says, I and Google.

(Here I am, at Mom's house, reading my final draft of MPWA, sigh)