Susan Senator

It is the shopping cliché of all time. The annual bathing-suit try-on. I do not know of a single woman out there for whom this is an easy task. I lost twenty pounds about 3 1/2 years ago, got down to maybe a 6 or a 4, and yet it is still the biggest drag in the world to buy a bathing suit. When you go to buy a dress, you know where to go; you go to several stores where you will eventually find just the thing. When you go for shoes — and this is not that easy a task — you still know that you are basically a size “8” or whatever, and you get an idea of what looks good and what does not fairly quickly. There is not tons of self-esteem at risk here. The dress, yes, perhaps, but it is easy enough to find one that covers you in just the right way.

So what is it with bathing suits? Why is it so excruciating? Why does it take twenty different ones to maybe get one?

It is the designers. They don’t know sh** about women. And this is not about “everyone hates their body.” This is about designers who cannot measure, who don’t understand the first thing about the female form and can’t be creative if their lives depended on it. Therefore I am making a list to “out” the worst features and see if they can do better from now on.

First of all, the Miraclesuit: there is no miracle here. It does not work. Nobody is fooled. Any suit that is two sizes two small will reduce ones waistline by an inch or two, but what do you do about the way the excess — usually your thighs — bulge over the leg elastic? And why do they always come in hideous, mournful color combos, namely black or black with something? Do the designers thing that because a woman feels she needs a bit of squeezing that she is also in mourning?

Second: the tankini: Why is it that these all look the same and fit completely different? Why do most of them have the high bottom if there’s also a long top to pull down, creating layers of excess stetchy fabric around the middle (Nautica)? Why do many of their bottoms have a seam down the ass crack (Ann Cole, Calvin Klein, Anne Klein, and Ralph Lauren)? Do the designers think that just because it’s mostly soccer moms wearing the things that they don’t care if it looks like they have an ass crack on the outside of their bottoms? And finally, what about the tankinis that come down to just below the bust, leaving a huge gap of stomach showing? If we wanted our stomachs to show, we would wear bikinis!

Which brings me to my third gripe: the bikini: What is the point of labelling these things small, medium, and large, when they are really small, smaller, smallest? I looked at a top marked “large” today (Calvin again) and I held the triangle “cup” in the palm of my hand and it fit right there! Then I tried on one marked “DDD” thinking, “wow! All the power to you, Shoshanna (the designer) for thinking in terms of large-busted women’s sizes, only to find that the front was cut so low and so wide that half my breast was still showing! Shoshanna must be designing for porn stars.

Fourth: Why don’t manufacturers get it together and do all mix and match? Why not decide that stores can mix and match brands, not just tops and bottoms? What woman is always an “8” in bathing suits, top and bottom? Most people who are small on top are larger on bottom, and those who are heftier around the top and middle tend to be a little lighter in the ass. That’s the way God planned it: almost nobody gets both ways. That’s why the women you see with the perfectly skinny bodies and the floaty round breasts are usually implant victims. Anyway, that way if the Nautica bottom fits you, but the Ralph Lauren top is better, you can put them together.

Fifth: What is with the colors and patterns this year? Is it 1978? If I see one more flower-power suit I think I’ll scream! Ann Cole used to be the best for color; this year, it’s all that retro garbage! The rule is, that if you wore the pattern or style when you were a kid, you probably don’t feel like wearing it now!

Sixth: If there is a tummy tightener, a waist lengthener, and a high-cut thigh for fat thighs, why is there no bust minimizer bathing suit that is not a grandmother one-piece? Why can’t they make tankinis and bikinis for people with big busts? Or an ass-shaping kind for the babies who got back? Use some of that great underwear technology harvested by Victoria’s Secret or Minimizer Bras to do some good! You’d think Victoria’s would have a clue but forget it! Their bathing suits fall prey to the same problems as everyone else’s. Believe me, we don’t want strangers knowing this much about us that only our husbands, boyfriends, or doctors should know!

We women want colors, patterns, cuts, shaping for real women: not funeral guests, not Skipper, not Barbie! Get a $#% clue, designers or we’ll all start going in the water in our shorts and tee shirts! Hey, that’s not a bad idea!

My Brookline Tab column this week was about my town’s inadequate school budget. This would have been my fifth budget cycle, had I not stepped down from School Committee this past January. I could not do it any longer. I have the book tour and other distractions these days and it was too difficult to give it my full attention. In my town, School Committee is supposed to be part-time volunteer work but it ends up being nearly full-time, and with no pay. It’s not about the money, really, but the job is tremendously thankless, and it was very hard for me to advocate for change while being in that position. And I feel there is a great need for change in my town, as progressive and forward-thinking as it is.

We should not be making cuts to the schools, not if we are as proud of the schools as we profess to be. We should be increasing the budget, and raising taxes to do so. Why are taxes a dirty word? Taxes are how we get our roads, our schools, our national parks, our programs like Head Start and Title I. Taxes are how we pay for special education. Private money is just too unpredictable, too prone to narrow ideology.

This year, the proposed budget includes two boneheaded items: reductions in our Performing Arts program and the hiring of a half-time Board Certified Behavioral Analyst (BCBA) for the kids on the autism spectrum who are not in the substantially separate programs. This is a 20-hour staffer for up to 60 kids! At 7 schools! I was appalled, so I spoke at School Committee last night, as a parent. Very weird to be on the other side of the table.

I talked about how, to paraphrase Shakespeare (I think): For want of a behaviorist, a public school placement was lost. I talked about how Nat has almost never been included in the public schools, even though I am a strong believer in public school, because there has never been adequate behavioral support for his needs. There is no mystery to educating kids with autism and behavioral issues: BCBA’s are a great help, they are the autistic kid’s wheelchair.

I am sick to death of hearing about the Mystery of Autism. And the high cost of special education. It is only a mystery if you don’t learn the approaches. SPED is costly but no SPED is even costlier. Think about it. Where do those people end up?

Poor planning is the culprit. My town did not provide for Nat other than to place him in an expensive out-of-district private school, and I’m grateful for that, of course, but there is a rub: Nat is practically lost to his community because of the much-vaunted Mystery of Autism.

The only mystery here is how to get my elected officials and school administrators to start planning and stop being pennywise and pound foolish.

This means, literally, “One beautiful chicken.” It is something my grandfather used to say whenever something broke. It is a Yiddish expression that is loosely translated, “Better that it happened to the chicken [the thing that broke] than to us.” “Us,” meaning, the family, or the Jews. Better to lose the chicken, slaughter it, whatever, than … The attitude comes from centuries of oppression, Gentlemen’s Agreements, pogroms, Inquisitions, Expulsions, Kristallnachts, Massadas, etc. As a people, the Jews have certainly endured more than their share of abuse, and it is in our DNA to remember that, no matter how much therapy one might undergo.

Anyway, I love “eine shayna capura,” because it is a great way to shrug off one’s feelings about loss. It reminds me that these things are only things, whether it is a plate that broke (a wedding dish broke this morning, prompting these thoughts) or something else not turning out the way you expected it to. Even autism. Even a flaky friend. Even nasty blog comments. Even having a mid-life crisis. It’s not the end of the world. It is just the chicken, not us.

Every so often, I let a new person into my life. I don’t do this easily, because I don’t trust easily. I know the reasons for this, and I’ll sum them up by saying that certain inconsistencies in my childhood left their mark, and so trust comes hard.

But I have had this same experience more than once by now, where I am pursued by someone interested in being my friend, and I am not sure of them for some reason. Maybe I’m wrapped up in a project, or simply content with the friends I already have. But these pursuers persist, and I slowly give myself over to their friendship. And then something shifts, and I realize that this new friendship is important to me. I realize that I liked being pursued. As soon as I have this realization, I begin to get anxious about holding onto the relationship. I start noticing it. I start noticing the dynamic of who-is-calling-whom; who-initiates-what. I think this is known as an “anxious attachment,” and it is a very tough dysfunctional behavior to break. I remember way back when I was 10, and I had my first intense friendship, with someone named Cynthia. I remember when she told me I was her “best friend.” This thrilled me so much that I felt almost addicted to it. I asked her frequently if I were still her best friend. This was my first conscious anxious attachment. Eventually (eight years later) she dumped me.

I feel it happening now sometimes with someone who pursued me and made me feel like I was the finest person on earth. I was uncertain about it. At last I opened my heart, and shortly after, the anxious attachment began sinking its black teeth into the friendship. This person often withdraws. My evil insecurity poisons it. So that’s what I’m dealing with now. A feeling of wondering if I’m a chump for trusting, and the burning shame of feeling not appreciated for being who I am. I probably see these things coming and so I resist these intense new friends, but they get under my skin, especially if they are Tauruses.

I sometimes wonder if my anxious wiring is related to Nat’s being autistic. I feel that they are related; we are both on SSRIs, and we both obsess about things. I wonder if he is free from this sort of pain, because his relationships with people are so much more basic. Although maybe they feel very, very complicated to him.

I guess we all have our own private hells to navigate.

Tomorrow, March 24, is Little B’s eighth birthday. It is also my sister Laura’s. They are both so special to me. Benj was 5 years in the making; Ned and I could not agree on having a third baby, but I prevailed (I often do). I remember telling God that he owed me, because things had been so hard with Nat. I absolutely believed that he was listening, because I was one of his best customers (I have always believed in him and had confidence that he exists).

Well, it just goes to show you, don’t f*** around with God. Benj is not easy, at all. I struggle a little bit with Little B every day, maybe not the same angst I had with Nat, but angst just the same. Ben, my brown-eyed boy, has a quick temper and is highly sensitive to what people say to him. He is a harsh judge of everyone around him. He sees things in Old Testament terms, black and white. He has a lightning-quick mind and a devilish wit. He pisses people off easily, and doesn’t understand why. My Benji is dusted with The Spectrum, in an amount not detectable to a psychologist, but just enough to make him a wildly original thinker, and a real prickly person. Just a little autism pixie dust.

My sister is another quick-witted, hot-tempered thing. She is smaller than me, darker skinned, darker eyed. As children we were extremely close, and we loved each other as hard as we fought each other. We made up a language together. We have the same sense of humor. We can finish each other’s sentences. Like Ben, she also sees things rather black and white, and for the longest time she and I struggled because I was too soft and she was too hard. But somewhere along the way, we figured out how we complement each other, rather than take away from each other.

I find it so interesting that people born on the same day can share certain characteristics. The two of them, Benj and Laura, are so fiery, they are such Aries!

Happy Birthday to two of my favorite people on earth!

Well my feet they finally took root in the earth
But I got me a nice little place in the stars
And I swear I found the key to the universe
In the engine of an old parked car.

Bruce Springsteen, Greetings from Asbury Park, 1972

Figures that for Bruce the Juice, crooner to Candy, Sandy, Mary, and Windy, and highways, motorcycles, and everything gear-and-grease related, the key to the universe can be found in the engine of an old parked car. For me, the keys to the universe are a bit more diverse and personal. For something to qualify as “key to the universe” in my book (or my blog), it must fit the following criteria: 1) it is a fairly simple, obvious, or common item or concept; 2) it does the job it is supposed to do with utter perfection and satisfaction; 3) it never gets me into trouble; 4) it helps make me hugely happy. Here are ten of my keys to the universe, and why:

1) iPod Shuffle, because it gets me happily through anything boring (like waiting for RK, EMT, INF, or any friend to show up (I’m always on time or early), waiting for boys’ therapies to be done, getting through a workout).
2) Atkins Diet, because it allows me to lose or maintain weight just by following a few simple rules. At worst, Atkins is boring, but you are never hungry. And yes, my cholestrol is actually better than it used to be.
3) Chi Flatiron, because it straightens my hair in seconds and makes it look as if it were always straight.
4) BCBG Girls black suede cowboy boots, because they go with everything, are comfortable, and always stylish.
5) Precious, my Mac iBook G4, because it is always there waiting for me either with interesting email and bloglines or blank screens for me to fill.
6) Lunch at Cheesecake Factory, because it is just nice enough for dressing up, it has the Santa Fe Salad, which always fills me up and tastes great, it is affordable, it is housed in my favorite mall, and you can almost always get a booth. Plus, 6 carb cheesecake!
7) A great respite worker, because they are not afraid of Nat, because they relish working with him, and they give him new experiences and I don’t have to worry for those few hours!
8) The attention of a man I love, need I say more?
9) Trish McEvoy concealer, because I hate dark circles under my eyes and this stuff really works but floats on my skin in the lightest of layers.
10) Dane Cook because he is always funny.

Passover is just about a month away, and it is during the Passover seder that we ask, Why is this night different from all other nights? (In Hebrew: Mah Nish Ta Nah Ha Lilah Hazeh Mi Call Ha Laylot?) Then you talk about all the different things you do on Passover, like sit comfortably (as if you never do the rest of the year), eat matzah (as if I ever would), dip matzah in horseradish (don’t ask), and other strange and wondrous things. Most of the answers relate to the fact that, way back when, in the days of Yore — as in “Yo’re Jewish? Yo’re a slave to the Egyptians, Dude!” — life sucked as a slave, building the pyramids and all, so we should remember this and be grateful it doesn’t suck as much now.

I would say that compared to being enslaved, my life is pretty good. But weekends are often rough for me, because of the lack of structure combined with the infusion of expectations. Everyone’s home; we’ve got nothing to do. So why aren’t I happier on weekends?

But today has been a solidly good day. My question is, Why is this day different from all other days? Why did today feel so good, with so many of the same things happening that happen every Saturday?

Was it that today my focus was at just the right intensity, so that I could see everything that happens to me with just the right perspective? Today, my focus was almost entirely on my boys, and to be honest, I dreaded today because I knew that there was very little scheduled for just me. All I did this morning was go sweatshirt shopping with Little B. But I rarely have a task like that which is just about him, and it was incredibly sweet driving to the mall and seeing his little face in the rearview mirror every so often. And he was thrilled with the gray Gap sweatshirt we found for him, way too big on him (just like Max wears them) and as boring as you can get in terms of clothes, but, hey, that’s what makes the world go ’round, right?

After the sweatshirt, it was onto Lego play and then some cartoons.

Or was it a good day because I had a nice little plan for Nat? I had arranged a “facilitated playdate,” something I have never done but has been on my list for years (this is that list most mothers carry around in their heads, of things they know they should be doing for their children, but have not yet managed to, and they use this handy list to kick themselves every now and then when they need to feel bad). Today I made the facilitated playdate happen, with Nat’s friend Rossi. Maureen, who used to be Nat’s and Rossi’s teacher, came over, with the purpose of taking them both and getting a snack and doing something special (zoo, or bowling). When Maureen walked in the door, Rossi burst out laughing. Rossi is a huge eighteen year old kid with autism, with a very big, contagious laugh. Nat looked happy, too, pacing a bit and eagerly grabbing his coat. Rossi and Nat both had money in their pockets, and Rossi’s mom made sure he knew where his money was, and so did I with Nat, and Maureen kept saying, “Don’t worry, I have been out with these guys a lot!” She was as happy as they were.

Three hours later, they are still out! Not a peep from my phone.

Or was it that Max was so happy today? His friend Yaz came over, with the plan to drop Mentos in Coke and measure the explosions. A true experiment, they were also going to use seltzer and Sprite. The playroom is full of Beevis and Butthead-like laughter, that low-pitched staccato goofy stuff only teenage boys are capable of.

I got to take a nap, so deep and sweet that when I woke up I panicked. Where was I? What day was it? Where were my boys? But Max reassured me that everything was fine. Ned was at the pool.

I fixed myself some Peet’s decaf, and to myself a chocolately peanut butter Atkins bar and settled into my warm windowseat with Precious and decided to figure out exactly why today was different from all other days.

Maybe, as Quai-Gon Ginn said in Star Wars Episode 1 (not the first Star Wars we all saw as kids but the one they are saying is the first one now), “Your focus determines your reality.”

I think I’ll try mentioning that at the seder next month.

One of the best feelings in life is for someone to play with my hair. It is a great high for me. When I was a little girl, this was one of the favored activities with friends and my babysitters, to get out a brush, rubber bands, and barettes and create wild hairdos in each other’s hair. The activity was sometimes fraught with a dash of anxiety, however, because my mother had put the fear of God in me about catching lice. One premier commandment, along with the Top Ten from Moses, was “Thou shalt not use someone else’s brush.” This was followed up with a reminder of how Cathy O’Neil, a friend who had caught lice, had to get all her hair cut off to get rid of it. Being a total girlie-girl, (before that was even a thing), this would have been one of the worst things I could experience. I have almost always had long hair and will have it as long as I can get away with it!

Still, I would engage in hair-play as much as possible. One of my favorite players was my father, who was as much of a “groomee” as I was. My sister and I would set up “Lorette’s,” a full-service salon, where she would color Dad’s nails with chalk dipped in water (our premium manicure), and I would put his hair in various styles. Dad, who is pretty macho, was also a very good sport. And I must say he looked quite fetching in pigtails!

Once I had children of my own — all boys — I assumed that my hair-playing days were over. To my great delight, little Max did not mind playing salon/dentist, a strange combo of fixing teeth and combing hair. And once again I had the great pleasure of feeling a child’s fingers twirling my tresses. Even though Ned is willing to oblige me with the brush, there is nothing like the innocent, agenda-free hands of a little kid.

When Max hit the tween and teen years, I had to retire my hair fun. I couldn’t expect a 12- or 14- year old boy to want to play with his mom’s hair! But this morning I had a surprise. Little Benj started wrapping my hair around his hands while I sat here typing. He found his own particular joy in hair-play by making me into all kinds of Star Wars characters, from Padme to the Wookie to Princess Leia (“bunhead”). Every now and then I would catch the scent of a little of his sweet breath. I maintained my sang-froid and pretended to type, so that he would not realize just how happy this was making me; Benj is not comfortable with too much emotional display. But I wanted to swoon right into my keyboard at the wonderful return of small fingers in my hair!

I will be reading and signing copies of my book at the Barnes & Noble in Union Square in New York, on this coming Tuesday, 3/21/06 at 6 PM, 2 East 18th Street

If you are in the neighborhood, stop by and say hello!

Autism Diva clued me into this fantastic bit of — poetry, observation, what? — from the Ballastexistenz blog, from which I have pulled out what I think are the most poignant and mind-blowing bits:

Questions for Neurotypicals

How have you learned to compensate for being nearly incapable of directly perceiving your surroundings?

Surely you must miss the all-encompassing joy of simple perceptual experiences. Don’t try to tell me that all your canned, pre-filtered experiences of sunsets and the like hold a candle to watching a tiny spider crawl across the carpet or rubbing a fuzzy blanket on your face. Nobody would believe anything that ridiculous, you’re just trying to romanticize neurotypicality.

How do you deal with being unable to perceive minds different from your own? Doesn’t that limit you socially?

Have you learned to make real conversation with strangers instead of just measuring them up socially and moving on?

And here is my own send-up to all those who insist that autism is less than, that autistics can’t connect, and need to be fixed. This, for those who don’t know, is Nat, my 16 year-old who has a pretty severe degree of autism, embracing, quite willingly, his teacher, Maureen:

Yesterday the President visited Jason MacElwain, the Greece, NY high schooler on the autism spectrum who shot 20 points in a matter of minutes after being allowed to play for the first time all season. My friend Andrew sent me this article from Rochester, NY, and my first response was that it was a very nice interchange. I felt good for them both, and I am no Republican. I am happy for J-Mac to have the honor of a meeting with a President, and I think what Bush said to him “You can call me ‘George W'” was sweet and appropriate.

My second response, however, was to think of the President’s low approval ratings (37%) which will probably go up a little bit now. Ah, politics!

So now it is my turn to go political. My third response is, let’s hope that this new awareness that the President has for a child with a disability grows and he begins to think about funding public education, rather than making the harsh cuts to education that his budget recommends, the worst in the history of the Federal Department of Education, so that others have the same kind of opportunity to give life their best shot, as J-Mac has gotten. After all, in all its years of existence, the IDEA (Individuals with Disabilities Education Act) has never once been fully funded, while school systems nationwide struggle to do the right thing by their kids, and then all students suffer for lack of proper funding. Having been on a School Board, I know firsthand what cuts to Title 1, etc., can do in terms of denying struggling kids the supports to succeed. I know how schools sweat to piece together budgets that accommodate all kids. And I am sick to death of nothing but cuts everywhere I look! And being the parent of a kid on the autism spectrum, I also know firsthand how difficult it is to get my child the basic skills he will need to survive in this world.

I wish that the United States would set an example for the rest of the world by demonstrating its committment to take care of its most vulnerable populations. Whatever happened to the Social Contract, which this country was based upon?

I’m worried about my little guy, Benj. This seems to be a year where he is becoming more of an individual, and I wish I could celebrate that, but we live in such a cookie cutter society, it is hard for me to feel okay about who he is. I love him so deeply, I even feel it in my guts sometimes when I look at him. We like to joke that he is dessert personified. Anyway, his personality does not fit with his perfect little face. He is such a rigid thinker; one bad experience with another kid and he will never again consider that kid a friend. So his playdate pool is getting narrower and narrower. He doesn’t seem to notice, however; only that when one particular kid can’t play, he gets upset. He is very possessive of that kid, who is very popular, and so I find I am constantly gently pushing Benj towards other kids. But he has so little interest in the other kids, who are largely into sports or XBox. Benj hardly watches any t.v. All he does watch are the videos that Nat happens to have on, mindless Disney Sing-Alongs. I think he enjoys spending the time with Nat, though, so I let them do this. It gives me pleasure to see them together, but their age-inappropriate activity makes me a little sad, too.

But only if I judge us by the rest of the world’s norms. Too bad I can’t tell the rest of the world to F*** off. Sometimes I just want to keep my boys to myself, in the house, safe and sound, my cocoon. Where no one can tease them or mistreat them. How many times have I fantasized about homeschooling them for this very reason? But I know my limitations. I don’t have it in me to spend long days instructing them. I also know that the very thing that hurts us so much — venturing outside — is what is going to make us strong. Nat needs to be in contact with the community to keep the world informed of people like him, and to inform himself of these experiences. Ben needs to be in contact with more and more different kinds of kids so that he can have more friends instead of fewer and stay flexible, grown, and learn. Other kids can benefit from a mind like Benji’s, too. A kid who has invented his own world (Stickfus, a planet made of stick figures) and an entire language (Sticktopian) and alphabet. He remembers all the details, too, each time. All the characters, all their foibles. He has created so many amazing things, I can’t even begin to list them all here.

But why can’t his peers see how wonderful he is? Why does a boy have to be a little cruel, a little tough, and know how to throw a damned ball to be liked in this society?

Why does love have to be so sad?

I raked my gardens today and collected about 6 huge bags of leaf mold and partial compost. Out, out, damned rot! But unlike Mme Macbeth, this lady is none too eager to wash her hands. And lo: there, sleeping just below the mess was this tiny cluster of snowdrops. Oh, the perfume of the cold, dark soil! The tender croppes in the yonge sonne! Tiny green clusters of life ripping through tight gray masses of thatch. My feet sinking softly into the wet, raw, lawn. Everything so new, so tentative, achingly sweet, like the very first moments of life, and love. Happy Spring!

“Even God had some autistic moments which is why all the planets spin.”
This enchanting thought came to me from a young reader who works as a peer model to autistic children. Her grandfather came to a reading of mine and gave her my book. This insight of hers took my breath away, and made me think more about autism as a way of being, rather than a disorder.

At each of my events, someone asks whether Nat knows that he is “different.” I think that people also wonder if he is unhappy, if he understands his difference enough to make him unhappy. It is still such an alien concept for people to think that autism is not equal to less than. It is endemic to the culture we live in that autism is akin to a disease, a disgusting malady that steals children and turns them into monsters. I have been guilty of those exact thoughts, during the time that I was first coming to terms with Nat’s autism. I think the monster part is because manifestations of autism, particularly of an autistic person who is untrained or misunderstood, can be so difficult for others to live with. Nat’s aggressive behaviors and his destructive tendencies made us feel as if we were living under siege, in a war zone. It is still difficult for me always to remember that Nat’s mind goes extremely quickly to blind rage and old behavior patterns when the triggers occur. But come to think of it, this is true for me, too. The minute a friend, INF, for example, goes AWOL and is out of communication, I go right back to little-girl mode, insecurity, sulking, despair, just like in my childhood. In those moments I truly believe that I have been abandoned. It takes a lot of thinking and diversion to bring myself back to my center. That’s just how I’m wired.

Same goes for Nat, then. He snaps right back into “Must pinch that stupid person” mode.

But recently, at two different events, people in the audience insisted that our autistic kids must really be unhappy because they know they are different. They cited examples of higher functioning autistics who expressed unhappiness at their difference. I was at a loss as to what to say. My instinct was to point out that anyone can feel unhappy if there is something in their environment, whether inside or out, that is not nurturing them. I am not autistic; I would be considered a well-adjusted, high-functioning human by most standards. Yet I have so many moments in a day during which I feel unhappy with myself because I am so different from those around me. Maybe I’m different from Nat in that I have enough language to talk myself through these moments.

But maybe he is better off than me because he does not have the language to understand what others around him may or may not think of him. Maybe all he has is an occasional frisson, a feeling of discomfort, a shimmer of unhappiness that remains unexplained — and then it passes and he’s fine.

If that is the case, then I envy Nat his autism.

Yesterday was the bluest I have felt in a very long time. Even though it was Max’s birthday — or maybe because it was. This is interesting to me because I used to feel the bluest on Nat’s birthday, in fact I started my book with the confession that November 15 is the saddest day of the year. Well, it may have been that March 9 was, this time. Just goes to show you, why blame autism for your unhappiness? There’s plenty to be unhappy about in this life!

I guess it’s because Max and I have drifted a little. He is now 14, and still a sweet, caring boy, but a teenager nevertheless and that means he has little overt use for his mother. It also means that I have a tough time finding things in common with him, or even understanding half of what he says. Not only is his voice very low and rumbly, so it is difficult to actually hear him; the stuff he talks about is either computer-related or Myst/Uru-related. I only know how to use computers, not program them, and I can’t keep up with Uru Obsession, the chat-game-hacking he does nightly.

All week, particularly yesterday, I did my usual birthday song-and-dance. Conferring constantly with Ned, I planned two cakes (actual birthday and party); I planned a party (Saturday, 3 boys sleeping over); in addition to Ned and Ben’s gifts Godless, by Pete Hautman, and Matt Groening’s Huge Book of Hell), I bought presents (3 funny XL tee-shirts, a silly tie, $50 I-Tunes card); I decorated the playroom to look like something out of Riven, a sequel to Myst; and Ben and I hid tiny birthday cards all over the house for Max to find.

When Max clomped in at around 3:30, Ben and I were all eager for it all to begin. But just then the phone rang; it was Max’s girlfriend, who is currently living in Norway (yes, Norway! and she calls frequently!) So when Max walked into the decorated playroom, he was — needless to say — distracted. By the time I could explain what it was I had done to the place, it was a bit anticlimactic.

“I like it!” Max said cheerfully, good naturedly. He was humoring me a little, I think. I went upstairs, suddenly overwhelmed with the desire to cry. I couldn’t help but remember his fourth birthday, when I had converted the whole living room into a pirate world, complete with a ship (the coffee table, which has a knot hole in the middle, and I stuck a broom in it to form the mast). Back then I suppose I was a goddess. Now I was just what? Dear Old Mom.

I pulled myself together in time to make the cake with Nat, who loves batter. There was a moment when I thought trouble would erupt because this time I only gave Nat the mixer to lick, and I gave Max the bowl and spoon (Benj doesn’t like batter). Max said, “Really? I get the whole thing?” Another thing that made me want to cry. All along I have been just giving the batter to mostly Nat, who is to share it with anyone else who wants any. But Max, mellow, non-confrontational guy that he is, never insists on his share. Max’s joy at having the bowl to himself stabbed me in the guilt-gut.

Finally Ned came home, and I felt some of my ill-timed misery lift as it does when he walks in, shouting, “Yo!” Comes upstairs, kisses me hard on the lips and takes over. Into the back part of the kitchen we went, squeezed in with Ben and Nat, working on the cake, which was — what else? A scene from Riven, of a golden dome split in half, with kind of a round thing peeping out (so many subtly vaginal images in that game, no wonder it is so popular with teenage boys), and a long phallic bridge leading up to it, and stones with symbols on them. We frosted a tiny muffin to be the dome, split in half, with a tiny clitoral chocolate truffle inside,and made everything else out of Hershey bars.

Max was delighted. I had to content myself with smelling all the sugary chocolate, because I’m still trying to lose 5 pounds. More torture. Still, the cake came out pretty good! And my smile was genuine.

So I bought the Volvo XC90. In order to do so, I had to agree to a draconian financial agreement with Ned, which reduced my clothing and hair expenditures by 2/3. So I will be going around almost naked and with perpetual bad hair days. Not really. I believe I have enough new stuff from the last three years to get by on this feeble budget; that being said, I am already into May in terms of what I’ve spent in the last few weeks.

But it is worth it. I love the car. I call her The Amazon: she is a strong, sleek, beautiful warrior woman. I had to compare car insurance polices to get only the best one for her. She has a mouth-watering soft pale leather interior, a crystal-clear sound system, seats that are quick to warm with the touch of a button. Her top opens to the sun. She is fast and sure-footed. When I see her sitting by the side of the road, I sigh happily that she is mine.

She also has deep thirst for gasoline, which is something I hate about her; the miles per gallon in the ads were better than what I’m getting. So perhaps she is a bit duplicitous, but I, of the ever fudged budget can hardly throw stones.

Something happened with The Amazon that threatened to sour me on her. I discovered that the lease on my old Volvo, the Party Slipper, (my V70), was not actually up until August. I discovered this too late, after I’d already taken delivery on my Amazon, believing the Slipper was up in February. So now I have to pay for the Slipper’s lease until August. My thinking is that the dealer, Lee Volvo of Wellesely, from whom I’d leased both cars, should have known this and should have said something. If nothing else, he is profiting from holding onto my Slipper until August, when presumably he will turn it into Chase Manhattan, who holds the lease. While I pay $441 a month for a car I no longer possess.

Lee prides itself on treatment of the customer. Lee was ecstatic that I was a return customer. Why then do they not return my or my lawyer’s phone calls? Do they feel a bit guilty, perhaps? If nothing else, they are a shitty company that does not really care at all about the customer. Maybe you’re laughing because what could I expect from a car dealer? Well, I expected more than this almost-scam.

I let the Amazon get a little dirty, while I stewed, and it wasn’t until a friend pointed this out, saying, “Are you taking it out on her?” that I realized I wasn’t being fair to either of us — the Amazon or me. Even though she, like many good people I know, is ending up costing me far more than I bargained for, she is mine and I should be loyal to her.

So I took her for her first wash the other day, to one of those soft-touch places, because the dealer, Lee Volvo of Wellesley, MA — did I mention I hate them — told us that we should wait six months before using brushes on her, to preserve the paint job. In this car wash, an attendant drives the car for you, to the end, and you can watch the entire thing, walking along a glass-enclosed corridor next to it.

I watched the car go through each phase of her bath, from being sluiced with water, to being soaped up, and then rubbed down with cloths moving in circular fashion. But the best part was when she shot though the streaming towels and seven eager men ran forward with gray towels, rubbing and shining her softly burnished sides. Caressing her lovingly. I felt a rush of — heat and maybe even a little jealousy! To be so lovingly attended, and come out looking so dewey and radiant. I loved her as much as ever. More, now with what we’ve gone through with the circumstances of her terrible birth parents.

I am told that I make this blog too personal, and some close friends and family feel voyeuristic reading it. I am also told that I’m an idiot for stating my opinions about certain current events. I won’t go into that here. Go into my archives if you want to know what I’m talking about.

My blog is my blog. Maybe I need a tag line, so that people will know what to expect and will not be put off in one way or another by reading it. My tag line would say something like: Susan’s Blog, about relationships, life observations, sex, fashion, comedy, autism, love, and parenting. I write about all those things, so caveat emptor. Or is it cave canem? Buyer beware, beware of dog. Maybe it should be cave blogem, and let the surfer beware.

Play-Doh turns 50 this year. Unlike most things, that does not make me feel old. I guess because I don’t really believe it. How can Play-Doh have an age? Wasn’t it always around? I always had some on hand, literally, and when it was on my hands, I would eat it. Why not? It said, “Non-toxic” right there on the little yellow barrel. If it was not meant to be eaten, why make it non-toxic and more importantly, why make it so tasty? Also, who could resist those colors? Is there anything as delicious and sensuous as the brand new cylindrical wedge of Play-Doh fresh from the can, unsullied by fat little hands, the mouth-watering bits of drier pieces clinging to its smooth sides?

They are apparently coming out with a pack of 50 colors in honor of this birthday. Ned wisely asked, “What’s the point? They’ll all be brown in the morning!” But you know, there is a point. Just because the joyful purity of color is ephemeral, doesn’t mean it is not worth having for that brief moment.

I did a reading tonight and had a great time. I always do. I have never enjoyed anything as much as going around and talking about my book and my family to people. One of the best things about it is that people are so receptive to how I’ve written it and what I’ve got to say; it is extremely rewarding. The other wonderful thing is finding so many kindred spirits out there. It is tremendously validating to meet people who have gone through what I did and to hear about their kids.

At my events, I often am asked similar questions, which I want to list and answer here:
1) How do your two other boys react to their older brother and his autism? How do you balance their needs with Nat’s?
Everyone gets to have their feelings but must be sensitive in expressing them. But Max and Ben react very differently to Nat and autism. Max grew up with Nat, has always known Nat to be the way he is, and is a very centered, compassionate person to begin with. An old soul, he gets it. Ben is a very different kind of guy. Very black and white in how he thinks, to him a big brother should act like Max, not Nat. We are helping him articulate his feelings, but we also set boundaries (we don’t let him say mean things to Nat in front of Nat or Max).

We balance their needs by individualizing our attention. We spend time with just Max and Ben, or just Max, etc. We use sitters to accomplish this, if we have to. But quality time can mean a lot of different things: 5 good minutes of conversation with Max; 20 minutes of Legos with Benj; reading with Nat. We also try to keep things fair, and have each boy do chores, so that no one feels like anyone is getting a free ride.

2) How do you have any fun? As a couple?
We get out every so often, even if only for an hour. We create “bubbles,” little moments in time where we are not solving anything, or working on anything, but simply being together. We stay loyal to each other, by honoring the other’s strengths and dividing up the kid-labor. I’m better at the school and doctor and home interface; Ned is better at the community interface (taking Nat out into the world). We also pick and choose how we spend our time; we don’t do everything we would like to do: we don’t travel a lot, we don’t entertain a lot, but we do go out every now and then with friends or with each other. Above all else, we laugh — mostly at our kids.

3) What therapies/interventions do you recommend?
For us, medication targeted at certain difficult symptoms was effective. We use behavioral techniques for teaching Nat certain skills, and more and more we talk him through difficulties (we get him intensive speech/language therapy) and his language continues to grow. We find that sports and social groups are the best therapies for Nat. These are natural ways to teach him about the world and they are fun for him. It is good for his brothers to see the things Nat can do, such as running and swimming for the Special Olympics. We do not use biomedical interventions, but know many who have alleviated certain symptoms that way. We are not looking to cure Nat of autism, but rather, to help him be the best he can be. Same with my other two boys.

4) What is the hardest thing for you?
Going out in public with Nat has been very hard from time to time because of potential tantrums. But we do it anyway because it is good for him and good for the world. The hardest thing now is wondering if he’ll be okay as an adult, and what will his situation be when I’m gone. I’m doing everything in my power to make him independent, but who knows?

You never stray too far from how you were as a child, though perhaps if you are lucky you learn how to compensate or protect yourself. It is easy for me to recall how I was as a child, to go back in time and feel myself looking out from wider eyes. I was very other-focused, which paradoxically also makes you very self-focused, but not always in a happy way. When you are too concerned with what others think, you become too concerned with making sure that they think good things about you, and then everything’s out of whack. My inner self is very carefully calibrated, even now as a far wiser adult, and it gets knocked out of balance far too easily (not a good situation for a Libra, but a typical one, nevertheless. There is a misconception out there that Libras are in balance; the reality is, they strive for balance but rarely stay within it. There are too many distractions, positive and negative, too many compelling thoughts and arguments to keep us completely in harmony, though we crave it.).

I am happiest these days when I am project-focused; when I have something interesting to do. My happiest days so far were the summer before last, when I had to finish my book by September. That deadline did not hang over me, however. It encompassed me as if in a golden light, buoying me and keeping me anchored within a purpose, a goal. That summer, Ben and Max had no camp, and they buzzed around me like the fat lazy bees out in my pink and blue garden.

As a child, I was often told, “Find a friend,” or “Go play,” words that did not help, but rather, filled me with dread. Find a friend? Who should that be, if they were not already here? And play with what? Wouldn’t I be doing that, if I wanted to? This admonition was like a sentence to me: if I could find a friend or play happily, I would have been doing it already. But I had no purpose, no project, only a vague feeling that I was somehow not right as I was. I would then look for someone else to reassure me that I was just fine, and that is how the cycle was born.

So I guess I have learned how to “go play” or “find a friend” or compensate, as an adult. I still have days of amorphous dread, however, where I think that the rest of the world seems to be so purposefully busy, and I am not. (And this is not about just getting a job — which became my parents’ mantra once I grew up and experienced the same malaise, the adult equivalent of “Go play” — because I have had jobs, and the feeling remained. This is not about being merely busy; it is about being purposefully engaged with something truly gratifying.)

By now I know enough about my amorphous dread; I understand it and recognize it like an old friend or relative. As someone who is in your life whom you did not choose but must suffer nonetheless. I now know that turning outwards to another person is not going to soothe it away. I now know that some days are worse than others. And I know, too, that the best way to feel good again is to look within, and figure out what it is I want to do. Most often, that means, what do I want to write about, and do it.

Wonder what would have happened if my parents had said instead, “Okay, write it down. Write about how you feel.” Makes me wonder what I am not saying to my own children…