Susan Senator

I was mining my old PC documents folder to try to find the script I had written for “Get Over it, Brookline!” — the comedy show I may do for my local access television station. And look at what I found, from May, 2003, just before Nat’s Bar Mitzvah:

Statement for Nat

How can we tell you what you mean to us? When you were born, we were ecstatic. We named you Nathaniel, which means “Gift of God.” We were certain of our gift. We were so eager to get home and begin our life with you.

Our life together was not what we expected. Living with you is always a roller coaster ride, up and down. Times of feast, times of famine. Some very hard times, but they only make the good times so much more intensely sweet. When you are doing well, at school, and with other people, we feel like the sky is the limit. We push you for more, ever more. Sometimes we push too hard. But no one pushes as hard as you. Ever since you were a baby, we have all felt that you do whatever you can, despite how hard it must be for you.

Nat, we admire you so much. For not only what you have achieved in school, in gymnastics, in the work you do, in being here today. But for your sweet Nat self. Your innocence. The way you become sad when I’m sad. The way you re-membered to kiss me on Mother’s Day, first thing in the morning. The way you willingly mow the lawn. The way you make corn bread. Or jump up to get some-thing that Ben left upstairs. The way you go up to people and smell them. The ways you let people know, somehow, what’s on your mind. The way you are fearless in the waves at Cape Cod, undaunted by the wipe-outs or the cold water.

But most of all, the way you have taught us perspective, compassion, empathy.

They say that God works in mysterious ways. Well I think that’s true. Because here you are. Nathaniel, gift of God, we are so proud of you, for all that you have been through, for all that you have given us, and for all that you are yet to become.

Di, dayenu, di dayenu, di dayenu, dayenu dayenu
—Passover song, which means, “It would have been enough.”

Oodillali, oodillali,
Golly what a day.
—Rooster Minstrel guy, “Robin Hood,” (Disney) 1973

I rose to the height of my roller coaster today; (I fear for tomorrow)! So many things… Any one of these things would have made it a wondrous day, but all of them! And Ned is not even here tonight to benefit from my excess of joy.

In the morning, I had my meeting with a writing subcommittee of the Dark Side, where we crafted a letter educating school families about the downside of the CPA, the Community Preservation Act. These folks I worked with are not all that dark; in fact, they are quite nice and we ended the meeting with kisses all around and a damned good letter, courtesy of yours truly. More and more I am convinced that I am on the right side here (no pun intended) because this bit of legislation really would blow our chances of raising money for the schools, and we need big money. We have sustained cuts from the state and of course the federal government (the Bushies et al., though they throw a good party, are heinous when it comes to public education. They have slashed the education budget by half, I believe) for the last five years and them chickens are coming home to roost fer sher.

Naturally I will have my work cut out for me when this thing is defeated — and it’s going down, believe me, it is an arbitrary, troublesome bit of legislation — and I will then have to convince all these people I’m so cozy with right now that we need to raise taxes for the schools (and not open space, historic preservation, and affordable housing projects)! But as Scarlet said, “I’ll think about that tomorrow.”

So, I gave good letterhead. Une autre chose qui s’est passe: Beastie has made a friend. Eliot is a new kid who lives right near us! Most of the kids live on the other side of the hill, closer to the school, but Eliot is actually in our neighborhood. Seems to be a sweet and enthusiastic kid and not a pain in the arse. But, you know, he’s eight, so…

Also, I had a fantastic conversation with Tim Shriver, Chair of the Special Olympics, regarding a book we are going to do, or actually, I am going to do, but with his help and blessing. I can’t say much until I get a contract, but I am quivering with excitement. Wet armpits, wide eyes, talking a mile a minute. While I was talking to him, I kept having to say, “Hold on, Tim,” and then, “Beastie, if you’re done with your math, you can watch cartoons,” or “Hold on, Tim,” and then, “Natty, you want to listen to music?” but Tim, of all people, understands how life is for me; not only has he read my book (and blurbed it), he also has five children, God bless him, and so he knows all about the phone A.D.D. we parents get.

And then, I had a phone call from a friend who is on the board of our local cable television station, and he asked me to do a political comedy show about our town! This is something that has been in the back of my mind forever, because of all the issues that the politicos get all hot and bothered about, friendships are made or murdered over some of these things, and they go on forever. The very stuff of comedy. At least, for a handful of political junkies in my town. But it will be so much fun! I think I can write comedy, don’t you? I got a great knock-knock joke, you start:

And finally, someone exciting from my past reappeared on the scene…

Nat asked me a question tonight!!!!!! He was getting ready for bed and he came downstairs in just his underpants and he asked, “Where are your pajamas?”

I started answering him: “Oh, they’re under your — ” and then, my breath caught in my throat. “Oh my God, Natty! You asked me a question! You asked a question! Hey Ned, did you hear that?” I went running upstairs to tell Ned, who was playing a game with Benj (he was leaning his full weight against Ben’s feet to see how long Ben could hold him up.
“Did you hear that?”
Ned smiled at me. “Yeah.”
“Wow.”
I hugged Nat, saying,”That was really good, asking me where your pajamas are.” Nat, however, looked at me expectantly. He was still undressed, waiting patiently for his pajamas to be found. I threw open his covers, and there they lay.

Nat has almost never asked a question, in all his nearly 17 years on the planet. Only one other time in his life has he done this, when we were driving around and around, and he whispered, (or at least I think he did) “Did you get lost?” Back then, it seemed like he was commenting to himself. Tonight, it was a real live question based on a real live need.

Nat asked me a question.

A lovely weekend, for almost-fall. I took a long bike ride today and there were almost no cars because it was early enough in the morning, and a Sunday.

Last night Ned and I went to a wine tasting party at some friends’ house. It took me a while to figure out what to wear because I was having a “fat” day. Or maybe it was just so hot out, which was great, except it made it very difficult to slide into my newly-washed jeans. I succeeded, and ended up wearing my bright red silk V-neck sleeveless top from Anthropologie which I had bought for my book party at Emily’s, almost a year ago today.

At the party, we hung out with some old friends and met some new ones. Of particular interest were a sociologist couple from Harvard, and another couple that was an artist and a dermatologist. I had a lot of fun asking the dermatologist about all kinds of cosmetic surgery procedures (which I won’t get because Ned would divorce me) and the artist was a lot of fun.

There were six wines served: three white, three red. The white were a Gruet, a Chardonnay, and a Sauvignon Blanc. I loved them all. They paired them with goat cheese toast, tuna with chili aioli wrapped in cucumber skins (my favorite), and curried veggie crepes. It was obviously an eating day for me. Then, the reds, which I generally do not like: a rioja, a valpolicello, and a riunite- like dessert wine. The rioja had a beef carpaccio with it; I did not eat it because I am scared of raw beef (e coli, hello?). Ned ate it, however, and gave me the parmesan toast leftover — yum! And the valpolicello had a saltimbocca and prosciutto wrapped shrimp. Wow. And then, the finale, the dessert wine had vanilla and chocolate mini eclairs. I had five!!! And it was already a fat day, prior to the party!

Never mind, the long bike ride will help. Plus, it’s not what you eat one day, it’s what you eat everyday! We got home late, very tipsy, collapsed into bed and slept the sleep of the drunken.

And today, another party: Emily’s baby shower! This will be her third baby, and her kids are the same age difference as mine, except her oldest is 8, then the boy is six, and the new baby will (hopefully) be a Libra, born in two weeks.

Had less trouble finding an outfit: showers call for pretty dressy girlie stuff. So, a pink trumpet skirt with bows all along the hem, and a sleeveless angora Audrey Hepburn sweater. Peep-toe pumps, and totally straight hair. I walked in, and a friend I haven’t seen a few years did not recognize me! Emily looked absolutely gorgeous: A Tiffany-blue polka-dotted empire waist top, that fit her snug and showed off her marvelous round belly, and a little black ruffled skirt. Most of the women there were friends of mine, which was fun, and the food was great: all salad fixings, easy to eat carefully. (There was a large, round, old-fashioned style chocolate cake with mini baby rattles stuck in it, and I could not resist eating some of the frosting.)

I gave Emily a gift certificate to a great spa near us, so she could get a fantastic treatment after the baby is born, and she has to go with me! New moms — no, make that all moms — need all the pampering they can get!

I had to leave the shower before I wanted to so that I could take Nat to Special Olympics soccer. Rush out of the car in my fancy clothes and high heels and throw on jeans and boots, rush back out with water bottle and a sweat-shirted Nat, and speed away to the soccer field! And, the piece de la resistance: Nat did great at soccer, smiled and participated the whole time!

I’ve been thinking a lot about Nat’s home program, which currently is spotty (read: non-existent). My reasons for the spottiness are manifold: the good person we had was no longer available; the next best person we had stopped returning my calls and emails; most organized special needs activities are suspended during the summer; lack of money; intertia; lack of good ideas of what hired person can do with Nat during a session; despondency; Nat already has speech/language therapy once a week after a long school day so our town was ill-disposed to give us more, after also paying for his expensive private school and transportation there (around $100,000 for my town).

But a series of events occurred that were unrelated but flowed together in a certain way in my head, illuminating one particular truth: Nat needs a home program right now, even if my town does not agree and the state has me on an eighteen-month wating list for the funding! I am getting desperate for this; see MPWA for details about what happens when I start to feel this way about Nat.

What happened was that first I got tired of his utter passivity, so I began to think that he needed to come down a little from his Resperdone dose; his aggression has diminished so consistently (knock wood) for so long that it seems ridiculous to have him on 1 and 1/4 .25 mg. tabs in the morning and 1 and 1/2 in the evening. I always like to think that he has evolved, relearned certain destructive behavior patterns (although God knows how hard that can be, just see past blog posts; maybe it is easier for Nat, who is younger and a different person from me!)

No adverse affect from the reduction so far. Next, I had a phone call from a friend who has a kid Nat’s age and is very savvy in terms of making things happen (she successfully sued Boston Public Schools for all of his needs, need I say more?) This friend of mine told me that her son was getting behavioral consults at home from this great woman, (L), and it turns out she is the one who worked with Nat during our crisis time! The wheels started turning.

Then I called L and we had a meeting, which was very dynamic and exciting. I felt my energy levels rising and my heart starting to float like in the old days when I would get an idea of what Nat needs to do. I thought, “why the heck don’t we start with L right now, find the money, just do whatever Nat needs?” I asked my friend why it was that older kids like ours don’t automatically have home programs — there is no Late Intervention — little kids get so much more nowadays, the 30-hour home programs, easy access to speech/language pathologists, more private schools to choose from. Why is that? My friend said that the research is all about the little kids and how the early interventions are key, etc., and no one has done research about how the older kids benefit from home programs in addition to school, just like the little guys. I said, “Well, duh! The next 5 years could make all the difference for Nat in terms of independent living! Isn’t that just as important as when he was 3 and had to be potty-trained?”

So today I have a meeting with a young woman who seems very smart and capable and experienced, to see if she can work with Nat on communication and independent living skills at home. I have another meeting with L next week to start to set up the whole thing. I’m talking 6 – 10 hours, that’s all.

But some day soon, in the back of my mind, is the other big fantasy, whereby I put Nat in our local high school for a part of the day with some very qualified teacher/aide, and he gets the vocational and inclusion piece there (our high school has a restaurant, a greenhouse, a printshop, a construction site, an auto mechanics course — lots of potentially good voc ed training, plus our community is literally right next door to Boston and Route 128 high tech). The other part of the day he would be working here, and out in the community, with his one-on-one, the same qualified, humane and fun person, on anything he needed to work on, primarily communication and learning how to function in the world on his own: social scenarios, home alone scenarios, money, traveling, safety, telephone use, self-care, leisure activities. All of this using techniques such as PECS and Verbal Behavior, and Good Old Common Sense Interpersonal Connecting, (GOCSIC, no link because I made it up) which Nat responds to pretty damned well.

With what money will all this occur? For now, we have a little bit from the state for respite. That will run out in 12 weeks. What then? A loan from my loving, but retired parents? Ned’s family? A waitressing job for me? (hey, don’t laugh! I waitressed all throughout college to pay my way through!) How about a book project??!! Maybe I should check out Investors Choice Lending website. I hope to have my town on board by then. How could they possibly refuse a small home program for Natty just on the basis of his age? His need is so great. And his potential is, too.

And I will not take NO for an answer (see book, etc.). This is my kid. Don’t f*** with that. Grrr.

“You’re my blue sky, you’re my sunny day
Lord, you know it makes me high when you turn your love my way
Turn your love my way.”
–Allman Brothers, Eat a Peach, 1972

“I’ll fix you up.”
–Ned

Top 10 Things I Love About Ned

1) Puts up with my crap
2) Brilliant
3) Funny
4) Likes my jokes
5) Unconventional
6) Feminist
7) Every time
8) Likes my parents and sister
9) Great dad
10) Gorgeous

“If I ever go looking for my heart’s desire again, I’ll never go looking any further than my own backyard…”
Dorothy, Wizard of Oz

“After all, tomorrow is another day.”
Scarlett, Gone With the Wind

Yesterday, I was down. Today, not so much. After a lot of crying and just thinking and feeling, I came to terms with some pretty hard sh**. In my true turn-on-a-dime fashion, I was much better by dinner time, although my eyes were puffy and strange; nothing that a little Trish McEvoy couldn’t fix. I then did what any red-blooded American Princess (notice I say “A.P.” rather than “J.A.P.” because my thinking is, what does being Jewish have to do with my self-absorbed, entitled attitude? No, really! Don’t blame the Jews for my high-maintenance crap!) So I did what any other red-blooded A.P. would do after having a horrible day: I put on my skinniest jeans, black boots, and black tee shirt and I went to a meeting. A meeting with the Dark Side.

I refer to these neighbors as the “Dark Side” because in all my years of local politics, I have never been allied with these particular folk. They are considered “conservatives” in my extremely Liberal town, a place where people joke about the Left and the Right being Trotskyites and Leninists. Truth is, there are actually Republicans in my town; in my neighborhood, even! And now they are my political bedfellows because of this particular ballot question coming up, about the C.P.A., or the Community Preservation Act.

Warning, the following paragraph is kind of technical/political/potentially boring

The C.P.A. in a nutshell is legislation by which you raise taxes and get a matching sum from the state. These monies can only be used for affordable housing, open space, and historic preservation. I think affordable housing is very important — in fact, we have to work hard to preserve our middle class in this town or there will be fewer families invested in the public schools — but the C.P.A. is not the way to do it. Here are my problems with the C.P.A.: no accountability, endangering rather than helping affordable housing projects, little or no money for the schools, and you ruin your chances for a tax increase for the schools.

There is very little accountability with the C.P.A., in that a committee is appointed who decides on the projects the funds get spent on (not officials elected to that end), and there is no guarantee that so-called affordable but “historically important” buildings will not be taken off the market and deemed historic, thereby taking them out of the running as affordable buildings. Also, even if a school building is deemed historic, there is no way to get educational programming paid for with the C.P.A.; only aesthetic aspects are covered under historic preservation. And finally, if you go to the community for a tax increase for the C.P.A., you spoil your chances of going back to the community for a tax increase for the schools, which is what we really need. How many people can afford not one, but two real estate tax increases in a short period of time?

Wake up! I’m finished. Needless to say, I am really bent out of shape over this, but so many of my Liberal friends are really into the C.P.A.! So I have to fight against them by joining the Dark Side. That’s why I wore black to the meeting. That, and it looked good on me.

So, as I was saying, the nighttime’s events made me feel much better. Nothing like sinking your teeth into a good local political issue and hanging out with new friends (I enjoyed a lot of the people there, plus some old friends from the School Committee). Got home, had some fun with Ned, and went to bed, exhaust-ed.

Today, sunny and hot. The weather was, too! I bounced out of bed and knew I’d be okay today no matter what. I took a long bike ride (had to be very careful now that everyone’s back and traffic is up to its formidable Boston standard) and blew off physical therapy, opting instead to do a good job on stretching and icing. Then I I.M.’ed Ned and asked him out to lunch. He agreed! He rarely wants to take time off from work to go to lunch with me, but I love going out to lunch! And I’m a cheap lunch date: always a salad girl. So what’s the deal with him? It’s that damned laptop that has him bewitched.

I worked hard on my hair and put on a fetching purple sleeveless top and rolled up capri pants. I always dress up for my dates with Ned. Why should twenty-something years change anything? I always want to be attractive to him. I hate it when he catches me putting on eye makeup and says, “Aha! I’m learning your little secrets.” Those are part of my feminine wiles and they are mine. How else can I combat Madame Laptop?

Ned suggested we get salads and sit outside, which we did; surprisingly delicious from a salad bar in the Whole Foods. We sat in a park in Cambridge and talked about my next book project and the boys. We have a new/old behaviorist coming to the house today. She actually worked with Nat years ago when he was having his horrible time (see book, chapter 8 where baby Ben and I are attacked by Nat on subway). I tracked her down! I will pay almost anything to get a great person to work with Nat. I am starting to fantasize about my oldest dream, which is to homeschool Nat with a really great teacher. I don’t know how I’d pay for it, but that’s what I’d do. Imagine the flexibility!

So, the thing is, the point of this post is: there’s always tomorrow, for dreams to come true, as Clarice said. I leave it to you to figure out where that’s from.

The downward slide begins.

A terrible day. I lacerate myself with stupid actions. Why am I so self-destructive? Goodbye to the boys, they go back to school. My heart is so heavy. I miss them, and I should be happy. I just want to lay down and cry. Max — another passage. Another milestone. Max is my trailblazer, even though he is the second-born. Walking to high school, trying to be brave. His voice seems different, his laugh seems different. Nat’s life, on the other hand, continues in a loop of sameness, of Disney sing-alongs and behavioral charts, ice cream when he gets home. How do I measure his progress, when there is regression right alongside? Ben, a straight brown arrow shot into third grade. Same teacher, but a new friend already.

The sky was dark when I woke up, though it was nearly six. I drank coffee that was too sweet, laced with false sugar. Lead in my stomach. I look ahead and struggle to find what’s good. I continue to waver. Moth to flame. Do I have the strength to do the right thing? What is the right thing? What my tautly-wired head tells me or what my red, bloody, fat heart tells me? Both are simply organs within the same flawed body.

O terra addio, addio valle de pianti
–Joe Green, Aida

Don’t ask me why, but I had such a craving to hear the final scene of Aida. I have always loved this piece, having first heard it in college, (“Clapping for Credit,” Music 101). But I loved that course! It introduced me to all the great Western-European music, pre-Dylan. (I particularly loved Verdi, and I have told Ned that I want that particular quote (above) on my gravestone, and I want this played at my funeral. Sorry to be maudlin, just FYI.)
So, because I was holding the livingroom hostage (the stereo and the t.v. are both in there) so that he could do nothing but listen, I tried to interest Benji in the story, of the two lovers who end up being entombed together in good ole Egypt. I had tears in my eyes, listening to Placido Domingo and Aprile Millo sing together, not sounding at all as if their air were being cut off any minute. The high notes were giving me chills. “Benj, they’re saying, ‘Goodbye, earth, goodbye vale of tears…'” and I was wiping my eyes, when Benji suddenly said, “Mom, shouldn’t they be saying, ‘Hello, earth,’ since they are going underground into a tomb?” I burst out laughing in the middle of my bliss. I’m so glad he’s mine.

And I’m so glad I’m still here, hopefully for a very long time, to enjoy him, and Aida. Not that I have any plans to do otherwise, I’m just saying, I’m just staying.

“Hell is other people.” (“L’enfer, c’est les autres.”)
Jean-Paul Sartre, No Exit, 1944

“Yeah, We’ve Got That.”
Staples

Hell is other Staples. And Summertime Assignments. I will explain.

We think of the traditional Hell, of Christian fame, as being a place of orange and red flames. Well, was it? Dante saw it differently. His version of the very lowest point, the worst place in Hell, was pure ice, a place where one became frozen, where all movement and growth ceased to exist.

Hell is neither orange flames, nor frozen ice. Hell is going to Staples at the beginning of September, and also discovering other Summertime Assignments. Dante, with all due respect, was not a third grade parent. Today, two things happened to me that sent me down, down into the circles of Modern Day Parenting Hell. (Now, of course, as I write this, the Jewish superstitious shtetl girl in me says, “Bubelah, get some perspective! No one died, everyone’s healthy, knock wood, you have a roof over your head and a good man bringing home the — well, not bacon, exactly, but the Whole Foods turkey sausage!”)

Nevertheless, Here is My Version of Modern Day Parenting Hell — Given, a minor circle compared to leprosy, but still, worthy of the malebolge.

1) Not one, but two, trips to Staples with back-to-school lists — All in one day!
The moment I walk in, my guide, (not Virgil, but a smiling pale-faced man in bright red shirt) assailed me and asked if he could help me. Before I could really answer I was being steered towards rows and racks of folders, folders, and more folders, across from which were pencils, pencils, pencils, pencils, and pencils. Also, pencils. Sharpies, not-sharpies, Rulers, Erasers. All manner of torture. Worse than torture: Bore-ture. So, so very boring. I started to fall asleep as I walked through the mind-numbing aisles of supplies. Paper, paper, paper, paper, paper. I woke up, and wanted to cry, but I bravely clutched my list and my little boy’s hand and picked out all the stuff and then some for his teacher (see? I’m a nice Mommy.).

But then! Max came home from a sleepover and guess where he needed to go? So, back in the car, back into the traffic, first to McDonald’s to give them their last treat of the summer. Long, long line! Why? For the Mario toy, of course. And all I got was a diet coke because just the smells in that place made me nearly sick.

Back to Staples, where, not only were the same devils parading around leading all the moms and college kids into evil mazes of paper stuff to buy, buy, buy, buy, buy. But I stumbled into a display, made it collapse, and nearly started to cry, cry, cry, cry, cry. $84 Calculator, Binders, Dividers (which is it? are we binding together or dividing apart?) Everything for the well-heeled high-school freshman.

The alarm at the door kept going off and even mellow Max looked teary as he covered his ears (chalk that look up to having pulled an all-nighter with his buds, perhaps). Max and I put it back together, but I feel like Humpty Dumpty: who is going to put me back together? (Answer: Ned)
$158 later, we went home.

2) The discovery of a “math folder,” a binder full of “fun” math activities to do for every day of the summer. And here we are, on the second-to-last day of summer! We pull it out, and see page after page of stapled-together worksheets, math fact cards, word problems, game lists, number fun. After all my care to help encourage him to do his ten-entry summer journal, now this!!!!!!

“Get ready to discover math all around you this summer!…This packet consists of 2 calendar pages, one for July and one for August, as well as directions for math games to be played at home. Each month’s activities are organized into 28 ‘math boxes.’..We encourage your child to complete 20 math boxes each month…”

[With Love,]
Public Schools of Brookline
k8 Mathematics Department

I nearly fainted. I can’t even understand the directions, let alone find patience/time/energy to help Benj do any of this! In a crazed blitz, I started to cut the things out to make the math fact cards, the lazy way, with all the pages together at once, and after I saw that I had cut off the tops of many of the equations. Purple paper shards everywhere, scraps, scissors, and my mind all in disarray. I threw it all on the floor in disgust, saying, “Too bad, Benj. I’m not doing it. Don’t worry about it. This is summer vacation.”

He said, “Maybe we should call Ms. S**** and yell swears at her into the phone?”
Ashamed of myself, I said, “No, Honey, it’s not her fault. She’s a good teacher. It’s just that I’m tired. You don’t have to do this right now. You just have to be sure you know your math facts.” (which I think he does anyway). What is with this culture? Isn’t this supposed to be vacation, time for fun? Why all the emphasis on drill, drill, drill? (I’ll tell you why: it is No Child Left Behind, or the ESEA, the Elementary and Secondary Education Act, which was reinterpreted by the Bushies and this conservative Congress as being a way to put the squeeze on public schools by demanding that there be 100% literacy and math proficiency by the year 2010 or else there will be sanctions against those schools. This, while at the same time cutting public education funding more than ever before. Brilliant way to prove that public schools fail, no? NCLB, in most states, including Massachusetts, is based almost solely on high-stakes, standardized testing that sucks all the life and color out of school curricula and separates the good test-takers from the poor test-takers, the rich from the poor. But NCLB has school districts running scared, so drill-and-kill it is.) Which gives us more lists and lists of things to memorize.

And why?

So that when we’re adults, we can navigate the aisles of Staples like pros.

(By the way, you know what would make it all into heaven? If I could be making yet a third trip to Staples — for Nat’s academic needs.)

The following two pieces came out in my regular Brookline Tab column, Edge of Town:

This one is about parenting by heart, and by cell phone.

This one is about my experience with the bellydance class at Brookline Adult Education.

Enjoy!

Last night I had dreams that were stark, colorful, and horrible. In one Benji was a baby and I was somewhere familiar with him and my sister (it was not Cape Cod, it was urban, like Philadelphia). I was going back for his bathing suit, and she and I had a horrible fight. I looked up inside the room I was in and there were like three huge centipedes on the ceiling — but they looked kind of like those “I Love Monsters” craft kits you get at chi-chi toy stores: each had a bright, neon-colored feather across its multi-limbed hairy body. My mother was there, and horrified by the centipedes, as was I. I was afraid they would drop on our heads, and if you’ve ever had a centipede in your house, you know how disgusting they are. Well, these were like 5 inches long and had feathers!

So I took a wagon down the street (all brick, ugly squat apartments) to go back for Benji’s little bathing suit (I don’t get it either, it’s a dream, remember?) Next thing I know, I’m inside, and outside I hear this terrible vehicular sound. I look out the window and I see a scooter-rider being dragged by a car. The car driver didn’t know it.

One important factoid out of the day’s residue: I had Nat go scootering, kind of against his will, yesterday. There were times when I was not watching him because he has become very aware of traffic.

Also, yesterday I said a terrible thing to Max. I was tired and bored, and I said to them all, “Let’s go outside, it’s beautiful out!” No one moved. I had to force them to go. Max stayed inside and I said to him: “You’re a couch potato and you’re going to be a fat adult!”

Oh, God.

He came out shortly after, and looked daggers at me. I muttered, “I’m sorry,” and went in to wash my hands (I had been weeding, pulling out all those horrid tall yellow dandelion-ish weeds that have sprouted everywhere like — well, like weeds). I checked my email, of course, (I am an email addict. Seriously.) Max had sent me the following email:

“You’re a couch potato and you’re going to be a fat adult”
I don’t think that’s fair, I was out “all day” as you put it 3 days in a row. Not outside all the time, but I did go out, walk to kurman’s and best buy, walk to matt’s house, walk up and down newberry street multiple times, etc. what does ben do? at least what i’m doing on the computer is creative while he watches tv all day…

Boy, was I ashamed. And at the same time, so very proud of him for being able to tell me so articulately and assertively and politely all at once, how he felt! I fired back a total apology. Later on, I made him sit down next to me and I kissed him and told him again.

Back to the dreams. I woke up at that point, with the awful sound of the car catching onto the scooter-rider reverberating throughout my head.

I lay there, wide awake. What did it mean? Was everyone safe?

I guess I don’t feel safe. I guess I feel guilty and like I’m allowing both large and small disgusting, terrible things to happen (centipedes, fights, car accidents)? How do I manage to do right by all three of them, my other loved ones, and even myself?

I fear I am screwing up.

Anyone out there know how to interpret dreams?

My bright and honest friend Pete has an interesting blog post today about things he doesn’t like, which others assume he does. Or things he should like, but does not. I told him I would do one too because I think it is cool.

Things one would think I would like but I really do not/things I should like but I really do not:

1) Jazz. Tried it, I know it is supposed to be so cool, but it always, always sounds like cacophony to me.
2) The Sopranos, 24, Lost. Too gloomy and doomy. Sopranos: stupid, banal violence; 24: Jack Bauer is an idiot who takes too many risks, the other people seem to be somber dolts. No one smiles. Lost: lost me after one episode because it scared me so much, which I don’t like.
3) Deval Patrick, the Progressives’ choice for Governor in Massachusetts. He bugs me, especially his stance on high-stakes testing (he’s for it). Still, of course he’d be eons better than Mitt Romney or Kerry Healy (the Republicans) who just cut everything, even when we have the revenue.
4) Blogs that are too self-absorbed. Ironic, eh? But I mean the ones that are just “today I bought shoes; today I’m bored” and no other, larger point is made. I always try at least to have a larger point and some wit.
5) Leggings with skirts or even with shorts. Leggings are back and should never have been here in the first place (the eighties). Utterly stupid looking and hot (I mean temperature).
6) Red wine and beer. Dry, rusty tasting-stuff. I know it is considered higher quality than white but I can’t drink it, esp. merlot and rioja. Give me Pinot Grigio anyday. Beer, same thing. Tastes like paste to me, but not as good. Nothing is cooler-looking than swigging from one of those thin-necked green bottles but I can’t, I just can’t.
7) Tattoos. I know I’m a bit of a wild woman, but I still don’t like tatts. Except for Jason-the-Lifeguard’s circular wave imprinted on his right calf muscle, I hate most tattoos because they look like bruises or dirt from far away.
8) The Theatre. Most plays feel fake to me. Most musicals embarrass me — all that over-the-top joyous smiley singing.
9) Being asked to play a game. See previous blog posts about how I was forced to play Monopoly with my sister as a kid.
10) Book groups/playgroups. I feel like I’m speaking a different language in these things. I hate the clean-up afterwards, too.
11) Sesame Street. Actually, most children’s “edifying” kind of shows depress me, adults singing and joking with big hairy puppets bugs me in general, but Sesame Street in particular is boring because it changes direction with lightning speed, is not funny when it is trying to be, seems to teach things randomly and arbitrarily (why Spanish? why not Chinese or Yiddish? I have nothing against Spanish, but you see my point?).
12) Woodsy vacations (New Hampshire, Vermont, Maine, Lenox). I need open space and sunlight. The woods smell good, but are often cold and crunchy underfoot, buggy, and dark.
13) Camping. I need luxury on vacation. Soft beds, room service, Do Not Disturb signs. I camped for my whole childhood and enjoyed it but I am grown up now and far too cranky for sleeping in a tent with children. For any of the friends of mine out there looking to book me a vacation, please see my dream villas on enjoymexico.net/villa-rentals/punta-mita/ and get us something to indulge in!
14) Autism cure books. But you wouldn’t think I liked that anyway! They totally depress me!!!!
15) ‘Eighties music. It is my era; I went to college in the early ‘eighties. But it is pretty much a total wasteland for music.
16) Brad Pitt, Tom Cruise, Ashton Kutcher, Justin Timberlake, Matthew McConaughey and the panoply of boy-toy “hunks” of today’s celebrity fame. I hate the semi-shaved head-with-earring-yet-way-too-perfect-wax-museum-body look they all seem to have. I want to see men with some flaws, with a little softness that age and experience bring to the body, I want to see messy hair and intelligent eyes.
17) Snow. I live in Boston, too. But I don’t live here for the weather, that’s for sure. Yeah, the first snowfall of the year is pretty — pretty damned cold and depressing! And hard to shovel, wet, sloppy, can’t park your car in it. And when it hangs around and gets dirty — ugh!
18) The editorial page of a good newspaper. Often the writing is ponderous, not witty, pompous, self-righteous. (not to be confused with the op-ed page, which I love to read).
19) Militant Milkers. Sure, breastfeeding is very good for your baby, but if you can’t or don’t want to do it, that should be okay, too.
20) Lists that must have either ten or twenty items. Why is that? Because we have ten fingers and ten toes, Ned says. No other reason. Ten is totally arbitrary. So there, I’m done.
Fire away.

I was having a long, funny I.M. conversation with Robert Parrish last night. Robert is a talented filmmaker and writer, and dad to two kids, one of whom has ASD. He is also a great guy, about to write a book that will probably be a big hit in the ASD community (full disclosure: he has asked me to write a piece of it; despite that, it will be a good book!)

So, I don’t know how it came up, but I told him that of all the cartoon characters in the world, I most closely identify with Lucy Van Pelt. Mostly because I love her unrestrained crabbiness and passion. To see her leaning wistfully on Schroeder’s piano reminds me of me, waiting around for Ned to finish with his computer. Of the Peanuts characters, here is how I see the rest of my family:
Ned– Schroeder
Max — Linus (compassionate, calm in the face of storms and utter stupidity surrounding him, even has a blue blankie and could probably pat birds on the head)
Nat — Woodstock (can’t really understand what he’s saying but you get the gist of it, he’s yellow-haired, and he flits in and flits out)

Benj — Calvin. That would make Max Hobbes.
Ben is also Nelson from the Simpsons (ha-ha!)

I am also Veronica Lodge + Betty Cooper. Betty because I’m warm-hearted, Veronica because I’m spoiled, demanding, and flirtatious.

I asked Ned who does he most closely identify with as a cartoon character; he agreed with being Schroeder, because of his focus on his keyboard, he’s blond, unflappable, and “there’s the whole Lucy-Schroeder dynamic. Can’t you just see Lucy saying, ‘when I bellydance, you should stop playing the piano!'” (Ned’s quote, not mine.) Blockhead.

So, readers, tell me which cartoon character are you, in the whole panoply of characters, the whole Hysteric Spectrum (not to be confused with Autistic Spectrum, which is not nearly as funny)?

Tell me who and tell me why.

Love, rollercoaster child
Rollercoaster — Loving you is beautiful
The Ohio Players, 1976

My life is like a rollercoaster, Baby. Part of it is the career I’ve chosen, that of a writer. Part of it is my personality: I look for and relish drama the way Nat looks for spice in food. Part of it is the dramatic makeup of my family: having Nat and autism in my life tends to cause some extra drama and emotional vulnerability.

Yesterday I was in the dumps. (Yes, yes poor me, just back from two weeks at the Cape, but I want my moment of misery, so just sit back and read. ) I had just gotten back from my vacation, and even though I wrote a funny blog post about Pluto, the day slid downward from there. Chores and drudgery stretched before me, the house is dirty as promised, no food in the fridge, dirty sheets, tons of mail, and cold rain. Max left to be with friends, and Nat got sick in school so I had to go get him. The minute he walked out with his teacher I knew he was totally fine but I was required to take him home for 24 hours. He was grinning as he got into the car. (Well, I am glad that he wasn’t really sick!) One bright spot: Benj seen me playing solitaire on Online Casino USA and he wanted me to teach him solitaire with cards. He was so cute learning it, flipping cards with his delicate little brown smeary fingers.

Nothing to write either except novel, novel, novel. Is it any good? I just don’t know. It is very subtle and not a lot of action. Sometimes it bores me; not a good sign. Sometimes it moves me to tears, probably a great sign. Anyway, it’s almost done.

But then, while food shopping, I got a call on my cell from someone’s secretary asking to make an appointment for a phone meeting about a book project. So that felt better.

Got all the work done and eventually took a nap. Too good a nap — that’s why I needed the ice cream. I ate a ton of Edy’s chocolate fudge brownie ice cream. (But, to my credit, I resisted the downward carb slide and was “good” for the rest of the day.) Then Ned phoned to say he’d be missing dinner and so did Max! Dinner with Nat and Ben. God forgive me, not the most stellar conversationalists. I had a big salad, whisper of dressing. They had noodles. Pass the salt, don’t take so much salt. Are you asleep yet?

Total blah, except there was that phone call.

Today, I had the phone meeting. It went extremely well. I started working right away, and I felt my brain focus just like the old MPWA days. I had an idea and a verbal committment for a project, a really good project for me. I was on a total high. I ate almost nothing, because I was so busy! Max told me he needed a ride somewhere, hinted really, (so like Max not to ask outright), and I said, “Honey, today is the day to ask me for anything, I just got some really good news!” Dropped him off at the T and didn’t see him until dinner. Nat was all better and went off to school smiling. I ran into a dear friend in CVS. And Ben had a playdate, that kid who is so easy you could just eat him for dessert. Even though Ned once again did not come home for dinner, I am happy. (He has a damned good reason, don’t worry.)

A very good day. Today, I mean, not yesterday. That’s the rollercoaster I live on.

(I know this will come out looking all lumpy, thanks to that awful blogger software, but here it is, nonetheless.)

Tomorrow is the official one-year anniversary of my book’s release. It is also the anniversary of Hurricane Katrina. I remember driving home from my interview on Fox News
and hearing all about this devastating hurricane, not paying too much attention because there were always hurricanes in late August and I was on such a high from the fact that my star was just rising. How high would it go? I had no idea. The month before I had been flown to New York to have meetings with producers from Good Morning America, MSNBC, and the Today Show, as well as a meeting with the president of Time. I had loved my day in New York, just my publicist and me; I was all dressed impeccably, in a slim mauve skirt from Anthropologie and brown Banana Republic stretch V-neck top, light pink Kate Spade briefcase and brown faille 9-West pumps. We took a limo, choosing the best limo services, everywhere and ate an expensive lunch and bought sunglasses from a street vendor. We wowed the Today Show people and made a pal at MSNBC.

So today I was thinking about what happened in the year of The Book, all the highlights (and I don’t mean the fake blonde in my hair).
-Interview on Fox News
-Radio interviews all over country (by phone)
-Book’s release
-Reading at Brookline Booksmith (tons of people came to it)

-Interview on NPR’s Weekend America
-Today Show filmed us here

-Ned and I went to NYC to the Today Show

-Emily’s book party for me in Brookline

-Eric’s book party for me in New York

-Gala in New York at the Hotel Pierre where I met Meryl Streep
-Commentary on NPR (WBUR) tying in Nat’s birthday to Supreme Court Decision

-Appearance on MSNBC
-Appearance on CNN
-Guest speaker, Autism Awareness Day at Massachusetts State House

-Flirtation piece in Boston Globe Magazine- caused some stir
-Keynote at Federation for Children with Special Needs – amazing
-Book talks in New Canann, Hartford, New Jersey, New York City, Pennsylvania
-Keynote in Minneapolis
-Fifth piece in Washington Post
-White House Dinner

-Controversial (sixth) piece in Washington Post:
“What’s Autism Got to Do With It?”

What will 2006-2007 bring? So far, two keynotes, one at which I will meet J-Mac (in October), two talks, paperback release in December…

What I wish for
-New book idea
-Finish my novel
-More WashPost pieces
-More glamorous parties
-Nat’s speech to improve
-Benj to continue to be happy
-Max doing well in high school
–Ned’s company to meet its goal for new users
-No more painful, life-sapping relationships
-Good health for all my loved ones

When the moon is in the seventh house
And Jupiter aligns with Mars
Then peace will guide the planets
And love will steer the stars.
Hair, “Age of Aquarius,” 1967

Talk about Oops, Wrong Planet syndrome. Those of us who have been living with autism for a while can really feel Pluto’s pain. We may be anthropologists on Mars, Jupiter, Venus, Saturn, Mercury, Neptune, and of course, Earth. But not Pluto. Oh, no, not Pluto. He/she/it is no longer even a planet.

We must all grieve, and grapple with the fact that just as sh** happens, so does stuff change. Scientific categorizations are as ephemeral as anything else in this life of ours. If science were static, it might as well be religion! And we know it is not that. Just ask Galileo. Remember him? Well, you can’t, unless you are an Indigo Girl, but still, unless you have been living under a rock (or on Pluto, I guess, which is pretty much the same thing) you must know that Galileo was excommunicated from the Church because he believed that the earth, etc. (including Pluto), revolved around the sun rather than all revolving around the earth. (I bet we have Galileo’s mother to thank for that, actually, because she probably said, as most mothers do, “Hey Galilei, the world doesn’t revolve around you!” And he just never had enough therapy to get that out of his head. But thank goodness for the rest of us!)

But I digress. My point is, things change. Science redefines itself. Just ask Woody Allen. Red wine good, white wine bad. Chocolate is good for you. Sugar’s out, Splenda’s in. Or is it Stevia? Cholestrol should be low/well, not all cholestrol numbers should be low.

Or how about these? Autistics are angels. Autism is caused by funky vaccines. Autism is caused by cold mothers (no way! I have never told Nat that the world doesn’t revolve around him; he believes it does and so do I). Autistics are all geniuses. Autistics don’t like to be touched.

We need science to keep examining itself, for that is how we expand our knowledge of the world. And, to paraphrase another mother, (mine), “to constantly contemplate its navel,” using scientific method and bonafide research, of course. Anecdotal evidence, no matter how warm and intuitively right it may feel, cannot be the basis of science. We feel like mercury in vaccines caused autism and that therefore chelation would suck all the bad chemicals out and leave the child “cured.” But is that scientifically proven yet? We used to feel that leeches would draw out disease (come to think of it, arent’ they using leeches again for some things?) We feel that a needle full of nasty germs will fill our newborns with poison, but it actually is not true; denying a child that needle opens him up to far worse plagues.

We feel like Pluto should be the end of the sentence, “My Very Educated Mother Just Served Us Nine Pickles.” But it cannot be. So let’s try a new one, “Many Vapid Emptyheaded Morons Junk Science Uselessly, Needlessly.”

Eh, not so much.

But — I still have to ask: If we are going to oust a planet, could we at least get rid of — or rename — Uranus?

But I can’t help but point out that in this particular moment in time, “W” is leaning a little towards me, which is on the left! Just doing my part for the cause.