Susan's Blog

Thursday, August 31, 2006

20 Things That May Surpise You

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 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.

Wednesday, August 30, 2006


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.

Tuesday, August 29, 2006

Rollercoaster — Of Life

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.

My Year of Living Fabulously

(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

Monday, August 28, 2006

A New Spin on Pluto’s Ignominy

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?

Friday, August 25, 2006

Summer’s End

Summertime done
come and gone, my oh my.
–Grateful Dead, “U.S. Blues,” 1974

This summer I did take
many a trip to the ole’ Cape
There I did many things fun
Mostly made of sand and sun
But there was so much more
There was Mom and Dad, there was Laur
There were dinners out with Neddy Sweets
Where I ate many tasty treats
We went to P-Town not once but twice
And went into stores both naughty and nice
We made friends with a groovy lifeguard
I ogled him while on his surboard
Mom turned sixty-seven
I baked her a pie that tasted like heaven
Blueberry peach with cornmeal crust
Breaking Atkins was a real must
I bought some belly dance clothes
And stuck a magnetic diamond in my nose
(I’m too much of a wimp to get a real pierce)
And hey, the ache in my knee is no longer fierce
My puppies rolled and played in the waves
Benji learned he was really brave
Now it’s high tide that he craves
And the lifeguard had to make no saves
Except if you count Ned swimming into a school of blues
We heard that they can really a body abuse
You could lose a finger or a toe
Or some other appendage, don’t you know
So that was kind of scary, but also funny
And the fish did not eat my Honey
Nat is still the champ at riding a board
But flat waves make him really bored
All he wants to do is eat junk
And if he doesn’t get to, he goes into a funk
Max still practices juggling pins and balls
He lost a bit of a tooth, that’s all
We are ready to leave this place, if we must
And go back home to a house of dust
To school preparation, to lots of mail
I hope that my newly learned optimism does not fail.

Tabblo: Summer's End

See my Tabblo>

Tuesday, August 22, 2006

Worth 1,000 Words

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.

Monday, August 21, 2006

Perchance to Feem

I had a dream about Nat last night. He was wearing his navy blue blazer and tie, and he was giving a talk about some royal succession, some very dry, complicated thing, complete with drawing on the blackboard. I remember gasping with surprise that he could do this and feeling so nervous that he would not be able to really do it. Here he was, speaking in complete sentences, finishing thoughts, connecting dots, and all so believable, because he still sounded the way he does, with his “th” sounding like an “f,” etc. Saying “feem.” But he even said something like, “Oh, this next part is kind of retarded,” and again, I gasped, to think he would use that word, and sound like every other kid, but also, what did this mean? That he couldn’t possible be retarded, if he could do this!

I woke up so sad, so very sad. How badly I want him to be able to talk like that, to really shine like that! A mother’s selfishness, or dreams and desires, never really die. We wrestle them to the ground and we reshape them according to reality and life’s limitations, but every now and then they just spring right back to their original form, as if we hadn’t touched them, like our beach pop-up tent.

Sunday, August 20, 2006

You’re Gonna Make Me Lonesome When You Go

Purple clover, Queen Anne’s lace,
(golden) hair across your face
You can make me cry but you don’t know

Can’t remember what I was thinking of

You might be spoiling me too much, love

You’re gonna make me lonesome when you go.

Flowers on the hillside blooming crazy
talking back and forth in rhyme

Blue (ocean)
running slow and lazy

I could stay with you forever, and never realize the time
…Yer gonna make me wonder what I’m doin’,
Stayin’ far behind without you.
Yer gonna make me wonder what I’m sayin’,

Yer gonna make me give myself a good talkin’ to.
I looked for you in old Honolula, San Francisco, Ashtabula
You’re gonna have to leave me now, I know

But I’ll see you in the sky above,

In the tall grass, in the ones I love
You’re gonna make me lonesome when you go
Bob Dylan, 1974, with a few minor changes a propos to my guy

Oh, Neddy Sweets!!!! You have to go back to work!!!!! I wish you were staying here with me. What will it be like? I know everyone thinks I’m silly but I miss you already. And that’s that.

Friday, August 18, 2006

Summer Tableaux

I invite all of you to check out Tabblo and make your own memories! If I can do it, you can. Ned made this one.

Tabblo: Summer 2006 (so far)

Our 2006 summer (so far) has been like many of our summers: Lots of beach time.

Thursday, August 17, 2006

Down the Rabbit Hole

I’ve been thinking a lot about the spin we put on things to feel better about them. I don’t do this often enough; I frequently torment myself with just how bad something was over and over again. Why do I want to make myself miserable? But I can’t help it. My mind gets stuck in certain tracks. Therapy and other tools have helped over the years — I won’t pretend I don’t have OCD — but still, obsessing and getting bogged down rather than spinning is part of my personality. Love me, love my bog.
Ned and Dad are better at spinning. In my last post, I mentioned how Ned spins the whole waiting-in-line irritant, where people do not move up to just the right distance behind the next person. What is the correct distance? Dane Cook has a funny bit about this, where he talks about a guy who was hedging, neither in one line or the other at Wal-Mart. I think the correct distance is something cultural; I actually studied this at Penn as part of my Communication degree. This study is called Proxemics, I kid you not. The right distance is totally ethnocentric. Yet I would expect that cars from Massachusetts and Connecticut would know that one whole car length is too long a distance! Ned spins his annoyance by saying, “What does it matter? It doesn’t get us in any sooner!” Ad nauseum.

Dad spins many, many things. Dad is totally Qui Gon Gin about everything. As I have no doubt mentioned, 69-year-old Dad is a total jock who must get a lot of hard exercise daily or he will be miserable. He loves to ride his bike, and here on the Cape the bike paths are wonderful. Dad mentioned the other day a phenomenon called, “Bike Path Farn,” which is only something you will understand if you are well-versed in the book, Watership Down by Richard Adams. Our family life and lore is suffused with stories, language, and characters from Watership Down. This book is not a child’s animal story; it is a fantastic read with fleshed-out characters, most of whom happen to be rabbits, a basic rabbit language and glossary, and a riveting adventure of how the rabbits go to find a safer place to live.

The rabbits’ lives are rife with danger. They are called the creatures with a thousand enemies. Much of what they think about and do is about identifying or escaping danger. Many of us can relate, I’m sure. “Farn” is the daze a rabbit gets in when staring at something, usually something dangerous, but also mesmerizing. The headlights of a hurududu (moving vehicle) can give a rabbit farn, and cause him to be killed.

Bike-path farn is what Dad came up with to spin his irritation with the families who gather in the middle of the bike-path, oblivious to all others, because they are so caught up in their vacation moment and enjoyment of each other, that they create a danger to themselves or other unsuspecting, fast-moving bikers. Dad’s ability to pin something annoying into a pleasurable, funny context (anything from Watership Down) helps him get on with his ride and his life. And it makes us all laugh next time we happen upon some annoying clusters of other vacationers.

How do you spin your life’s torments?

Wednesday, August 16, 2006

A Day in the Life

I am on vacation, as I’ve said, and I am marvelously content, which is not my usual state. I am much more frenetic and edgy at home. But here, on Cape Cod, there are few choices. Here is what my usual day is like:
Wake up at 7
Make the coffee (8-9 cups of Peet’s French Roast, half-caf)
Stretch and do therapy stuff for knee while coffee brews
Drink the coffee (1 1/2 packets of Splenda, a little cream) on the deck and look at the salt marsh
Get on my bike and go somewhere: the bay; the ocean; the harbor in Orleans
End up at Mom and Dad’s place around 8:30
Drink a cup of coffee with them until around 9. Shmooze, check email.
Ride home. Bike total: ~13 miles
Make lunches and pack up for the beach (15-30 mins.)
Choose bikini (takes 1-10 mins)
Drive to Nauset Light, wait in line for around 40 mins. for a parking space. This sounds insane to some of you, right? But Nauset is our favorite beach and there is limited parking, even at 10:15 a.m. If you go to Coast Guard, you have to take the shuttle there (no parking at all). I would ride there, but none of them do! Or we go to Wellfleet, and pay $15 and walk down (and then up) an enormous dune. So, wait in the car and gossip about all the other people in line. (Sue:”Why don’t they move up?”
Ned: “What do you care? There’s no place to go anyway!”
Sue: “Yeah, but why leave such a big space between him and the other car? Why not move up?”
Ned: “It doesn’t matter.”
Sue: “You’re never on my side!”
Ned: “I’m just trying to enjoy myself.”
Sue: “So am I!”
And so on)
Survey beach; find emptiest part near best waves; set up, apply goop, and lie down.
Immediately fend off Benji’s requests for lunch. Give him fruit, then of course Nat and Max want some, too. One hour until lunch.
Look for interesting men to look at (sorry, it’s true!) who are older than 20.
Feel the water.
Lie back down, listen to iPod.
Give Benj lunch early.
Eat an Atkins bar because Benji’s lunch makes my mouth water.
Give everyone lunch.
Everyone tries the water! Get wet, maybe stay in if it’s really hot out.
Go back to blanket for boogie boards.
Catch a bunch of waves, sometimes right onto the sand. Let the waves pull you back in without getting your legs all scratched up. Hang on board with Benj or Nat.
Ride waves until your body aches and it starts to get scary whenever a big one approaches you because your too old and tired to ride it properly.
Straggle out and adjust suit.
Throw yourself down on blanket and sleep as long as Benji will let you.
Stay until around 3.
Pack up, shake out, pull on clothes, walk up the endless stairs to parking lot.
Outdoor showers at home. This is one of the biggest joys of the vacation: being naked outdoors in the privacy of the outdoor shower.
Get dressed, maybe take a nap.
5 p.m. Drink some wine, think about dinner.
See what Mom and Dad want to do.
Get some fish, grill it with corn.
Give the kids ice cream, try not to smell it or look at it.
Try not to eat too much sugar-free fudge from Provincetown after you smell and look at and taste the kids’ ice cream (the Maltitol gives one diarrhea. Remember, no such thing as a free lunch. you don’t gain weight from sugar-free fudge, but you can get really sick!).
Clean up from dinner and do something for the night (kids play games with Mom and Dad, writing for me, work for Ned)
Get everyone to bed by 9:30
Try to stay up unitl 11 to see Jon Stewart.
Hang out, laugh, cuddle, etc., with Ned
Sleep deeply, one leg thrown out of covers to feel the breeze coming in from open windows.

Monday, August 14, 2006

Life Force

When I was a kid, I spent a few weeks some summers with my sister Laura, my grandma (Esther), and her sisters (Pearl, Henrietta, and Ethel). We stayed at a bungalow colony in the Catskills, in New York State. There was a game hall with pinball, a snack bar with frozen Milky Ways and ice cream, and a cold pool that was so mossy it was almost more of a pond. There were other kids but mostly they were snotty Long Islanders. Laura and I kept to ourselves, and had plenty to do. Dad left us with a handful of change on Grandma’s dresser and everyday I took fifteen cents for a frozen Milky Way and we always had at least one ice cream. Sometimes we picked blueberries (“huckleberries” with Uncle Herman, Aunt Pearl’s husband) and later ate them with sour cream. Laura remembers not showering for a whole week! I remember a deep tub and a pink shower curtain, however.

We also went on the swings and jumped off, even though Grandma said not to, and once my shorts fringe caught on the swing and I was just hanging from it! I tore a piece off in time to avoid the yelling. It was always a bit odd visiting Grandma. Nothing seemed quite right. The food was weird (“minute steaks?”) and the adults were all from the Old Country (Poland/Russia, depending on the era) and back then they all seemed out of it culturally, like they didn’t know anything about our music or t.v. or Barbies. But I do remember Aunt Pearl polishing her toenails with bright orangy-pink, a color I now like to use. I remember how much fun it was playing “Fishies” with Uncle Herman in the pool. And Grandma was a force of nature, with a huge temper, a passionate heart, and a great love of anything pink.

One icky, questionable thing: when Mom and Dad left, they gave me instructions to play “at least one” game of Monopoly a day with Laura. They gave her no such instructions about playing pretend games with me. I seethed about the Monopoly ukaze, but obeyed nevertheless.

To this day, I still hate playing board games. (Right now Ben, Ned, Max, and Dad are playing Chinese Checkers and nobody expects me to play. YAY!) But the thing is, I do wonder about what my parents were thinking when they did this. I asked them about it today. It seems to have to do with what they perceived our needs to be. It is hard to talk about it, because there is the whole conflict I feel about not having had my gaming needs met — although I’m pretty much over it by now! What I believe is that — right or wrong — they viewed me as being the stronger one in this case, and that I therefore needed to help Laura.

I think it is good to view each child individually and address his needs accordingly. But this particular games thing did not feel good to me. I find I am wondering about this philosophy of parenting, however, because lately it is really upsetting to me to see Nat left out so much around his puppy brothers. Max and Ben enjoy each other’s company so much, and Nat is so difficult to engage, that they mostly just play with each other and not with him. But I have been feeling lately like this is wrong, and I would like to change it. But, this runs counter to my usual parenting instinct, which is not to force things socially (because I was forced to play Monopoly with Laura).

But what about the other things Mom and Dad insisted on? I feel differently, for instance, about forcing chores and helping. Everyone has to help. They all have to learn how to perform tasks in this world, and in their family. Mom and Dad made Laura and me do many jobs: mowing, raking, weeding, trash, dusting, vacuuming, laundry, cooking. I learned how to run a household this way. And now, I really know how to take care of a lawn and garden, and I love to. I am proud of what a balabusta I am, too. And that’s because Mom had me cook and clean.

Then, there’s the fitness thing. Dad and Mom also forced us to exercise. Freshman year of high school, I had to run track, and to learn how to become a runner (not one and the same thing). I did not like it at first, but I learned. I then learned to play field hockey, too. With reference to it, I began to see myself as a fit person. And now — I would never question the need for exercise. It is always with me, like the need to eat or sleep. That’s because of my parents. But I hated running back then.

So, knowing how, with most things I was forced to do as a kid, I learned later to like them, I am thinking that it is okay to force Max and Ben to do a little with Nat socially, in the hope that one day it will not feel like a chore, but more like a natural part of life.

I told them the other day that I was going to be asking them to include Nat a little each day. I was met with dead silence. I told them that I know it was hard and not really fun, but that I felt that Nat really needed their help and was possibly lonely. I think they need to know this and to learn a little about helping him, just as they need to learn how to do math or how to read. Even more important than that, Nat is a part of their lives and they can find a connecting piece to him if they interact a little more with him. But at first, it may just feel resentful and like a chore, the way yardwork used to feel to me. The way visiting my Grandma sometimes felt: weird and out of the norm. But now, when I think of the sunny days in that slightly ramshackle cottage in the meadows, and Grandma making me the darkest chocolate milk ever, I am really thankful that my parents threw us all together. Although I could have done without the Monopoly so much.

Sunday, August 13, 2006

Joyful E-M-Ocean

We are at the beginning of our two week stint on Cape Cod, but this time, in a house that has “Internyet.” So I have to use my parents’ DSL connection in order to get my fix. Luckily, the whole world seems to be on vacation now, too, because I have been getting almost no email, just from friends, the best kind.

We stayed in this house last August. It is one year old now, still pristine, all white inside, black granite counters in kitchen, windows everywhere, and a view of the saltmarsh and sunset. The decor is similar to my taste: a lot of seagreen and periwinkle, so all my sheets and towels match and it is just a tasty melange of pastels. Makes me want to cook (just a little, and seafood, of course); the bed is so soft it makes me want to nap! But then again, just about every surface has that effect on me. Unfortunately the bed has a noisy headboard, which can be annoying to say the least.

This morning I rode my bike to my parents’ house with Max, on the new bike they bought him for eighth grade graduation. We used the Internet, and then I rode with my parents a little to Coast Guard Beach, and then I rode back to the rental with Nat. I was so proud of my boys on bikes! Nat is so aware of traffic and other bike etiquette. He actually maintains better space than Max, who rides too close behind me. Once I had a sudden stop and he crashed into me, but he still hasn’t learned! Nat on the other hand did a fantastic job looking for cars, listening to directions, pumping up hills. At one point I was just about bursting open with pride, just leaking it, and when we crossed the highway safely, I yelled out, “Yeah, and he’s autistic!” with a big thumbs up. I could not help myself. I was grinning at everyone sitting there in their cars, wanting them all to know: don’t you dare assume anything about my kid! (Except good things.)

Today we went to Benji’s beach choice. He has been nudging us about it for weeks: the beach with the big dune, that you’re allowed to run down. He means White Crest Beach in Wellfleet, which is not part of the National Seashore, and is unprotected and oh-so-laid back, a la Wellfleet itself. Accessible dunes, only one (very mellow) lifeguard, even a couple smoking pot nearby. Very different from Nauset Light’s straight up crowd. I enjoy both, frankly. I am really thankful for the National Seashore and in fact the entire National Park system, created by Teddy Roosevelt, but the National Seashore was founded by the Kennedys. Its loveliness will be protected forever. Another reason I love them!

But today, as I said, we were Fed-free. This beach will not live forever; Wellfleet is having terrible erosion problems. But they are not doing anything about it. So, okay, let’s all live for the moment. We were there during high tide, so the waves just rolled right in, very deep and high, a delight to float in. Sixty-three degrees, practically like Florida! Benj and Max had a blast on the dune, and I enjoyed watching them cavort. Nat did not enjoy the beach much because with his thin frame, the water was still too cold. We tried sharing a boogie board and floating together, but the poor guy was shuddering, so I sent him out. He sat in the chair with the i-Pod.

I found a charred log nearby and posed behind it, trying to look like a well-done roasted Mermaid!

I Kneed a Miracle

I got a feeling, and it won’t go away. oh, no.
Just one thing, then I’ll be okay
I need a miracle, every day.
–Bob Weir, Shakedown Street, 1978

I need a miracle. Writing this with very little battery and very little time. I am on my two-week vacation and it turns out that the house we have rented does not have Internet!!!! D’oh. Quel D’ohage. I have ridden my bike over to my parents’ house to use their Internet (and see them, and do a little exercise with them) so now’s my chance.

We rented this house last year; but last year the neighbors’ internet was not secure. This year, as I said, D’oh!!!!!!!! Poor Max. Two weeks Sans Uru. But. We will see Mom and Dad everyday, laptops in hand. (Max’s new laptop is named Eve, and we have decided that Eve is the cool teenage daughter of Precious, my laptop, who is cool but in an older generation way, and most of the letters on her keyboard are rubbed off but she is still cute!)

Also: my physical therapist feels that my knee problem is a slightly torn medial meniscus. The knee joint bones catch on the little flap of whatever between the joints and tear it so bought some specific shoes recommended by orthopedists. Gross, gross! And ouch, ouch. Running makes it WORSE!! Belly Dance — perhaps. I danced last night anyway. I kneed a miracle in this way, too.

Thursday, August 10, 2006

Life With Cato

I’m dating myself (but I think I’m a pretty fun date!)… but I was thinking about Inspector Clouseau of Pink Panther fame because of Benji. No, Benji is not a bumbling detective. Quite the opposite. It is more that I am Clouseau, and he is — Cato. Cato was the servant that Clouseau hired to keep his instincts “sharp.” Cato’s job was to jump out at Clouseau and force him to defend himself at a moment’s notice.

Today, while I was wandering around picking up, I headed upstairs, figuring I would straighten beds and start my shower (our 120 year old house has strange plumbing, needless to say, so you have to turn on the shower a bit in advance of taking one if you want the water to be hot; and that is in the one modern bathroom!). I realized I hadn’t seen or heard Ben in a while. I looked in his room, and saw a familiar lump under the covers. Was he back in bed? Too odd, even for Ben. I went up to the lump and gingerly poked at it. It did not respond. I yanked back the covers — aha! BlueBeary and a pile of sweatshirts! Oh no! That meant Benji was on the loose and about to jump out at me from somewhere.
“Ben?” I called, halfheartedly, knowing I was doomed.
But nothing happened. Oh well. It was time for my shower; the water was probably reasonably warm by now. Took my shower, emerged fresh and dewy.
As soon as I opened the bathroom door, there he was. YOW! AAAGH!
“Mom, I was hiding in the couch waiting for you!”
Be still, my heart. I adore that little guy.

Rank and File

Could my book rank get any lower? Even though the paperback edition is due in December of this year, (that means it did well!) my Amazon rank has not gotten into the good numbers in a while. But my dinner at the White House may help that; I just got this lovely thank you note from Laura Bush. Now there’s a lady who was raised with good manners. Maybe she’ll read it; maybe she’ll like it; maybe she’ll talk about it to someone somewhere! Stranger things have happened, after all (like my being invited to the White House by the Bushes, for starters!). Anyway, this is one thank you note I am saving! I think I’ll start a “Fame File.”

Wednesday, August 9, 2006

Channeling Andy Rooney

Did you ever wonder…

Why “Botox” and “Buttocks” sound so similar?
Why “Smother” is just one letter removed from “Mother?”
Why do they call them “Tucks?” Are you supposed to think “tux,” as in galas and balls?
Why can’t we just rename Uranus? Enough embarrassment, already!
How they first discovered the Diet Coke and Mentos thing?
Or how they figured out that they should save the moldy bread and use it to fight infection?
Why “Prius?” It is such a little car, yet the name makes me think the wrong thing! No one will be fooled.
How is it Keith Richard is still alive?
How much we need 1-800-DEAD-YET because it’s hard to keep track! Like Jimmy Stewart?
If you’re not supposed to mix chlorine bleach and ammonia, why is it okay to pee into a toilet that is full of bleach-laden toilet cleaner?
Why is a AA bra size smaller than an A cup but a DD cup is bigger than a D cup?
That sweetmeats are actually stomach entrails? And sweetbreads are from brains, not breads?
…and Grape Nuts have no grapes and no nuts.
If the correct way to use dinner silverware is to “eat your way in,” then why is the teaspoon (ostensibly for dessert and/or coffee) laid outside of the knife?
Why does one woman need both a curling iron and a hair straightener?
Why is it only either boxers or briefs?
How did Pirates vs. Ninjas come about?
Why is it just Ginger or Maryanne and not Gilligan vs. The Professor?
Why are men so into monkeys?
How do you throw out a garbage pail?
Why not equip airplane passenger seats with parachutes? Then I’d listen to those instructions prior to take-off.

Range of Emotion

Yesterday was a satisfying day. Well, almost. Flawless sunshine, meetings with friends, a lot of writing, out with the puppies to McDonald’s.

I had coffee with a guy I used to be on School Committee with. I first met him eight years ago, when I was attending one of my first special needs parents meetings in my town, so I was a complete political rube. He was at the meeting to represent the School Committee and answer parents’ questions. He had a nice smile and blue eyes that drooped down in the corner and looked a little like Bob Dylan to me, so I liked him right away. I also liked the way he listened carefully to everyone there, never got rattled, and always had an answer that was packed with empathy, information, plus political innuendo. Few people can win an argument with him, and even fewer realize they are even arguing.

We have been friends ever since that night. When I ran for School Committee, three years later, he helped me with some very good advice. Over the years, we have been on different sides of issues often, and I have to admit, he has changed my mind once or twice but I don’t know if I’ve ever managed to change his. I still remember the one time that I convinced the other seven members of the Board to do something in opposition to what he wanted. Wow.

So yesterday morning I dipped back into local political intrigue over a Starbucks iced coffee, and got reacquainted with those happy blue eyes. And plotted the next big political battle in my town: the CPA (Community Preservation Act). I won’t bore you with the details, suffice it to say that the Libra in me is making it difficult to decide which side I’m on.

Then, home with the puppies, and I took them to an early lunch at McDonald’s. Benj was afraid he would get the Polly Pocket toy (rather than the *&*@! Hummer) until both Max and I reassured him that if you ask for a “boy” Happy Meal, you will get the Hummer. I really wanted the Polly Pocket, but it was not my meal. Nevertheless, the Hummer was kind of cool, military green, with a mechanical hook on the front that could tow the entire Hummer upwards.

Then, lunch with Emily, my favorite writer friend and one of my favorite people. She is due to deliver her third baby in about 8 weeks, and her body looked lovely, like a colorful scoop of ice cream. She wore a big pink floppy hat, a stretchy floral peasant top and a white skirt. I wanted to be pregnant, too, just for the look! But she tells me she longs for a waist. “Oh, the belts are so great this fall,” she lamented wistfully. I remember that feeling.

We both ordered the Greek salad with grilled chicken and she ate voraciously. I picked at it, not because I’m delicate, but because the roof of my mouth is still raw from having burned it on a verboten brownie Nat baked on Friday.

Back home with the puppies, who were playing with Max’s Mac, “Garage Band.” They were recording their voices in creative ways and setting this to dance music. Ben’s bubbly laugh and Max’s more hoarse one can be heard through the pulsating sounds. I wrote a lot in the same room with them. Later Ben asked me to help him with the “Bug-A-Tron,” a Lego insect/monster/robot. Quite grotesque and ingeniously engineered. My contribution: a big drill-like stinger on the back. Ben resisted my idea for a while until I produced the piece and then he could visualize it.

I took Nat to speech therapy, and I wrote some more in the zoo-like waiting room. I could not believe the kids. Two were from one family, and two more from other families. Totally “absent” parents, in the sense of being there but not in charge. The kids were playing D&D; right at the feet of the other adults. The mom asked weakly if “it was alright” with me. I nodded, smiled, and tried to block it out. But it was tough. Then they started playing ball. Ball! Right there between the adults. Did anyone else care, other than me? Why am I the crab? I tried to block it out and willed it to go away. I was struck, as I so often am, by the way other kids are allowed to act — so out of control — and here I am with Nat, who is deeply affected by autism, working so hard to cue him into how to behave among others, and 99% of the time, he does a fantastic job. He and I work so hard at this, while the rest of the “typical” world is allowed to do as it pleases. Yet I can’t seem to be any other way. And I am very proud of Nat’s excellent behavior. He is so pleasant to be with because of his hard work. And because he is so cute.

Then, after with Ned, we agreed to all meet for dinner at the Cheesecake Factory, so that I could meet a colleague of his. She is a graphic designer and works from home in L.A., so I had not met her before. She is young and pretty; clearly connected to Ned and they have a good work relationship. She was very taken with the boys, especially Ben, and they drew things together while we waited for our food. (I ordered a trough of chicken nachos, avoiding the chips. )

Several times during dinner I noticed Nat looking across Ned at her. He looked like he wanted to say something. He kept smiling at her. I wanted to help him, give him the words, but I didn’t know what they were. I felt an aching pain for him. I felt longing: was it his, or mine? Is he lonely? Did he want to talk to her? Or was he okay? What could I do? “Sweet Guy!” I called to him. “You’re happy.”
“Yes,” he said.
Okay, yes.

Back at home, I belly danced with no ill effects, other than fighting with Ned because I felt that once again he was not paying any attention. (Even though he came into the room to be with me while I did it; still, laptop open, typing away. Only looked up when I dangled my veil over him.) And I am getting really good at it, too. I’m thrilled to have no pain; physical therapy is really working.

We did not go to sleep angry (we never do), so we talked until midnight. That is the work of a good marriage. As Ringo said, “It Don’t Come Easy.” But that Ned is worth every fight.

Slept well, got up early, and here I am. More flawless sunshine and lots of writing ideas and several good plans.

Tuesday, August 8, 2006

Egregious and Kathy Lee

(You have to read it out loud to get it.)
Okay, what am I talking about? Try to follow my twisted comic brain: I think of Regis and Kathy Lee/Kelly as the lowest of the low in talk-show phenomena, so I am using them as a jumping off point to talk about another lowest of the low : privacy violation. AOL is the latest winner (or should I say weiner, all apologies to a delicious thing to eat) in Egregious conduct. So now there is a published list of anything anyone has ever searched for in AOL’s search engine??!!

Anyone who has ever typed “booby” or “sex toy:” or even “Susan Senator,” watch out! Yer days are numbered! Soon the Thought Police will swoop down and neutralize yer subversive self so that all you search for are yer missing sox! And I don’t mean the Red ones… (God I am on a roll! Like a weiner!)

Forget AOL, which is really an abbreviation for A—OL- (try a game of hangman with that) and go for Google. Last I checked, their motto was: “Don’t be evil.” Weren’t they the ones who refused to give such similar information to Chinese Government? Although Max tells me that gives that info anyway! Jeez!

My question is: If the Internet is truly a “series of tubes,” then how did we get to this point? I say we need to get AOL’s tubes tied!

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