Friday, July 31, 2009

The Autism Meltdown

You know how you feel when your toddler throws a tantrum" That unmotherly combination of anger, frustration, revenge, acquiescience, intolerance and a strong desire to swill down the bottle of Listerene?

Now imagine it when your toddler is 13. And you live in a house w/out AC so your windows are open. And your house is really close to the neighbors whom you've barely met. So now you can add in "embarrassed."

Add those emotions together and you have a heaping helping of G-U-I-L-T.

Then it's over - mercifully I am usually able to get it under control without losing my temper. Not always. Sometimes I snap like Joe Theismann's (thanks BT) thighbone and become psycho Mom. I scream. I hold little arms down by sides and wrap bodies in ultra squeezes. I turn my face into a twisted mask of anger and fear. I want to instill fear. Anything to make the screaming STOP. It never works.

I grab the book that's always in her hands. It's a book of emotions. Funny, huh? I open the page to angry and ask, "Are you angry?" I flip to sad, "Are you sad?" I wish for a page that reads, "Are you a crazy child put on this earth to torment me forever?"

Finally she quiets. I hit the right note. I find, "silly" or "excited" the page she perseverates on all day and all night. She grins. Tears fall from her eyes. She catches her breath. I remember to breathe.

It passes.

She sleeps.

I worry.

We both feel like this:

Just counting my blessings today.

Good news later.

Thursday, July 30, 2009

Sirius Pain: Running Up That Hill

I used to be really fit. 17% body fat is really fit in my book. I ran 5 miles several times a week. I taught aerobics 2 - 4 times a week. I lifted weights (remember Nautilus clubs?) I went out dancing even. We call that "the good old days."

Today? I'm thin. But thin is not fit.And I'm Italian, so pendulous arms are my birthright. As is a dyed black cotton candy style pile of hair on my head and a housecoat. So I'm back to exercising. What set me off? A few things. 1) I feel fat. 2) I look fattish (naked.) 3) I can not afford new clothes. 4) I need to stay stronger than my kids, which isn't easy. Mia is really strong! 5) I don't want to have to wear Teez-her t-shirts with girdles built in (see post a few days ago about that mistake.)

Kate Bush - Running up that Hill
Uploaded by scopitones. - Music videos, artist interviews, concerts and more.

I've been walking with my Sirius Stiletto on my head. I listen to Howard Stern mostly. But today he had on two porn stars and frankly, when I was eighteen I was cramming for an economics final at Tufts while they were cramming wonkaloids into their rectora. Not my cup of kaopectate, you know?

So I switched onto music. Music makes me stop walking and start running. Except my route takes me up a big old hill. I managed some of it up, some of it down.

Thank goodness Bruce came on (no coincidence, I'd switched to the Bruce channel, Sirius 10)

Mark are going to see Bruce in Mansfield, MA next month. YAY! It's our first splurge in a long time. My folks live minutes from the Comcast Center (formerly known as Great Woods) so we don't have to pay a sitter. Double Yay! And we won't have a long drive home from the City like when we go to Madison Square Garden (an hour at 1:00am is a long trip!)

I feel less fat for the moment. But Mark has literally a dozen boxes of yummy cookies in the fridge - he reps a line of gourmet cookies Too Good Gourmet and they are calling me.

Monday, July 27, 2009

I love this site.

T-Shirt False Advertising! Mad Men!

Good grief! Women have always tricked men into thinking they had better figures than they do. Or maybe men, who designed clothes, demanded it? Think Mad Men and the be-girdled beauties, corsets, bras filled with water, gel and such. Well, it seems undergarments have "stiff" competition from the entire wardrobe.
Imagine this - on Thursday I went to Trader Joe's to stock up on food and drink and stuff for our weekend at my Mother In Laws. We bring all food we're going to eat, as if we're camping. We take all food out when we leave (including the log for the fire) - like The Grinch. Don't ask.

There's a lovely shop next to Trader Joe's called Harper's. Check out the site, (the music sounds like a bad porn movie.) The store is mostly fur and jewelry - it took me several peeks in the window to work up my courage to enter, since I do not have a fur and jewerly budget, unless you mean Muppets and the occasional sterling earrings (my last pair was $10, puzzle pieces from NAA while at Autism One.)

Turns out, there's a clothing boutique in Harpers - and they do have lovely, wearable clothes at good prices. Fine brands, but not exclusive. And you can find things that don't make this 45 year old women feel like she's trying to look like a 20 year old, nor do they make me feel like I'm wearing Sag Harbor and Village from Vermont Country Store.

I bought a layered look T-shirt off the sidewalk sale rack. $14.99! I didn't try it on. I threw it into my duffel bag and took it to the Cape.

Friday night: MIL is taking us out to dinner at Cooke's Seafood

Yum! I grab the T-shirt and go to put it on. Struggle, squish, twist, dislocated shoulder WHAT IS WRONG WITH THIS SHIRT!!! I read the tag: Teez-Her. It's got a GIRDLE BUILT INTO IT! I swear to God - it's got a spandex center layer under the cotton - and I though it was just a layered T-shirt.

Can I tell you? Nothing says, "You're fat" more than an uncomfortable sausage casing of spandex swaddling your middle and riding up and around.

And what of poor men? They've most caught on that the boobs aren't actually the boobs they imagine under the shirt. They are usually stuffing and propping and lifting and separating and cajoled into place. Good God, you go on a date with a nice looking gal, you get her into bed and she expands like a freaking raft boat! "PFooooooottttt!

Wednesday, July 22, 2009

Congrats, Kelly on the Oprah Pick! Memoirs We Love

Welcome To Shirley, A Memoir From an Atomic Town

I posted about this wonderful book by Kelly McMasters last year. It's a memoir about life on Long Island, in a town called Shirley - located far too close to the Brookhaven Nuclear facility to avoid illness and death and yet too far from the money of Montauk to matter to the powers that be (although they are next door neighbors.) Distance is often measure in social class and money, not miles. From Kirkus Reviews:

"Powerful...debut explores the author's happy childhood next to a controversial nuclear laboratory that leaked toxic waste into a Long Island aquifer. McMasters follows up this moving material with pages that delve into case-study numbers and scientific quotes ... Sincere and expertly researched."

As I've learned from my pal John Robison's book, Look Me in the Eye, the best non-fiction reads like fiction. This book was a terrific read. Engaging, informative and with a good story at its core. I'm sure Kelly and the people of Shirley, Long Island, New York, wish this book was fiction.

The story traces Kelly's nomad-like childhood with a golf pro Dad, who found the 18th hole in Shirley, New York, where Kelly ultimately grew up. Although Shirley was supposed to be a town of flowers according to its founder, it turns out to be anything but floral when the nuclear facility nearby wreaks havoc on old, young and in between.

I see a lot of similarities to our struggles in the autism world. The government and medical establishment turning a blind eye to the obvious problems growing around them and in them(literally inside the people of Shirley, as cancer ravaged so many.)

You can buy a copy HERE. Kelly was kind enough to answer some questions for me about her book. Here's our "interview."

When did you realize you had to tell this fascinating and frightening story?

The lab is a Superfund site, which is a researcher’s dream—literally hundreds of pages of documents available to the public. And after working on the project for three years, I was finally able to get access to do some research at the lab itself. There is a “Public Documents” room in their library (which is anything but—it was impossible to get access, and then they only allowed me 3 days there, during which I needed to show my approved badge four times to get in). The reports I found there felt like pieces of a puzzle falling into place. During that meeting I met with a representative from the lab who asked why I wanted to bring up all of these bad memories again. I explained that I was interested in telling the story from Shirley’s point of view. I was interested not just in the lab itself, but in the way the relationship between the lab and Shirley has impacted the town. She replied. “But there is no relationship between Shirley and the lab.”

At that moment, I realized how important this story as, because while the lab had the luxury to decide they did not have a relationship with the town, Shirley had no choice—their relationship permeates the drinking water aquifer, the soil, and the air. The town had a relationship whether they wanted one or not, and I think this scientific arrogance and the idea that the pollution and poisons our neighbor produces and releases into the environment are only the business of that neighbor is deadly.

How long did it take you to research and write the book?

I originally started circling the issue in a series of essays during graduate school. One of my favorite professors, Richard Locke, pulled me aside and showed me that the lab was functioning as this haunted house on a hill in each piece, and he said although I was clearly afraid of it, I had to look straight at it to understand what I was writing. He was absolutely right.

Along with my own memory, hours of written and tape-recorded interviews were supplemented with other research, including newspaper articles, scientiļ¬c studies, reports resulting from Freedom of Information Act requests, and hundreds of pages of documents culled from the (not so) public reading room at the Brookhaven National Laboratory. My imagined scenes of the town’s founder, Walter T. Shirley, were informed by history books and archives. Five years after my discussion with Richard Locke, the book emerged from the printer.

You’ve really brought the story to life – I’ve heard that the best non-fic reads like fiction. You’ve captured that. How did you do it?

Thanks so much—that was an important goal of mine. When my agent and I were first showing editors the proposal, they were pretty split down the middle: half wanted me to remove myself from the mix and tell the story in a purely journalistic fashion, and half wanted me to take out all of the science and medical information and focus strictly on the memoir. I thought it was important to keep that mix in there, and I was lucky to find an editor and a publishing house that believed in the hybrid as strongly as I did. So many scientific studies had already been done that didn’t tell the whole story, and since we were dealing with the Department of Defense I knew there would be no Erin Brokovitch moment of finding the incriminating evidence (or, if there was a moment like that, I’d have to go into hiding!). And while I do believe the genre of memoir can be incredibly powerful, I felt that there were so many facts and figures to marshal, that pure memoir ultimately wouldn’t be able to do the story justice.

I love literary nonfiction because it is able to take the best of both the nonfiction world—fact-based, real human drama—and the fiction world—plot, character, suspense, landscape—and apply both brushes to a single canvas. I believe it is the most exciting genre to work in right now. Literary nonfiction has that frontier feeling of anything-is-possible because the borders are so malleable and flexible. My next book is absolutely going to continue to push the hybrid form.

Do you think because Shirley was not as affluent as other areas that your concerns were ignored?

Absolutely. And almost every national laboratory around the country has a town like Shirley nestled up next to it—a blue-collar dumping ground. The most frustrating message I kept getting was that Shirley didn’t matter—that our people were disposable. You can imagine how painful it is to be told that your family and friends, the people you love most, are disposable and that their lives are not worth as much as the Nobel prize or results from an experiment.

More damaging, however, is the fact that after decades of being sent this message, it was internalized. The people in town really began to believe that they were disposable and that somehow this was just par for the course, or what they deserved. That’s the saddest and most damaging part, I think.

How do you manage the anger you must feel at that folks who refused to listen for so long?

Wow. That is a really difficult question to answer. I think writing this, of course, really allowed me a kind of release. To be honest, I cried through so much of the writing. And I was mostly crying over things that happened twenty years ago. It is difficult to know where to put that kind of anger because it is displaced—people are already sick or dead, and there is no way to change that. And since cancer often takes 20 years to show up, there is no way to retroactively protect my friends, family, or even myself right now.

Most of my anger is wrapped up in this powerlessness. My mother’s character in the book acts as a kind of Cassandra—she sees where things are headed and tries to warn people, but no one listens. I think anyone who deals with environmental health issues must feel this way. But it is a faceless anger, which is the worst kind—since there is no one person to take it out on, it can really engulf your world, and I’ve also seen this kind of anger turn inward and engulf the person, which helps no one. I think the most constructive thing you can do is simply to try to accomplish one thing each day. Tell one person or write one letter or learn one more thing to strengthen your case so the next letter you write might be the one that shines the light in that deep, dark basement where no one wants to look. Translate that anger into something useful.

Thank you, Kelly!

Tuesday, July 21, 2009

Elderly Drivers

This topic came up when my folks were visiting. My Dad is 86. He was complaining that the headrests in his car are in his way. I can understand that - to a point. My headrest is in my way too. I have to move my head left or right in order to see when I back out of a spot. My Dad felt headrests should be removed. I say they are a safety precaution to help prevent whiplash. We agreed to disagree.

Massachusetts recently had a spate of elderly drivers injuring or killing people. Surely teen drivers die at a far more alarming rate. Older drivers tend to be safer drivers.

But is there an age at which by default, a person should turn in his/her license or the state should start road testing?

Today I followed a large Caddy into post office parking lot. Driven by another headless person (older, too short to be above the headrest.) He blew through not ONE but TWO stop signs in the parking lot and had to conduct a 43 point turn to get into a parking space. Should he be driving?

In a weird twist, my Dad's car died the other day. It just up and died. Fortunately he recognized the noise as a death rattle and came home. So he's safe. Phew! But now he has no car. And I'm sure that's big loss to him. Getting older is no picnic.

Saturday, July 18, 2009

Fox Searchlight Films Love Story: ADAM Features Title Character w/ Aspergers. (Look how cute he is.)

ADAM, a romance featuring a title character with Asperger's Syndrome, opens July 29, 2009, but I have your ticket to an advance screening in select cities. CLICK HERE to find a screening.

Plus, Fox Searchlight Films has given Age of Autism a signed movie poster - leave your name in the comments to enter. Click HERE to enter!

Click HERE to visit the official Fox Searchlight site for Adam.

Romance can be risky, perplexing and filled with the perils of miscommunication - and that's if you aren't ADAM, for whom life itself is this way. In this heartfelt romantic comedy, Hugh Dancy (THE JANE AUSTEN BOOK CLUB, CONFESSIONS OF A SHOPAHOLIC) stars as Adam, a handsome but intriguing young man who has all his life led a sheltered existence - until he meets his new neighbor, Beth (Rose Byrne, "Damages," 28 WEEKS LATER, KNOWING), a beautiful, cosmopolitan young woman who pulls him into the outside world, with funny, touching and entirely unexpected results. Their implausible and enigmatic relationship reveals just how far two people from different realities can stretch in search of an extraordinary connection.

Directed by: Max Mayer Written by: Max Mayer Produced by: Leslie Urdang, Miranda De Pencier and Dean Vanech Co-produced by: Gary Guidice, Geoff Linville Executive produced by: Dan Revers and Christina Weiss Lurie Cast: Hugh Dancy, Rose Byrne, Peter Gallagher, Amy Irving and Frankie Faison.

Thursday, July 16, 2009

Autism Excluded from Healthcare

Click HERE to read my latest HuffPo, "Nancy Pelosi's Sarah Palin Moment" on the failure of HR 3200 healthcare to include autism.

Half Crazy Mother Attends Half Blood Prince

That's right! I am shirking today. Shirk shirk shirk shirk shirk. I'm going to see Harry Potter and the Half Blood Prince's 11:00am showing at the Bow Tie (my my) theatre.

I haven't seen an HP in the theatre in years. I used to take my nephew - we saw the first and second one I think. That was a long time ago. Since then, the movies come out and I just can't seem to get away for the 3 hours. I have the DVDs but it's not the same.

The kids are in ESY and camp and Mark is in Trenton on business (wonder if he'll run into Stephanie Plum?) and Kim is going to play hookey and go to the movies!

Wednesday, July 15, 2009

Friday, July 10, 2009

Gov. Jay Nixon of Missouri: My New Hero

Watch this six minute video on Governor Jay Nixon of Missouri present angrily and eloquently on the failure of the autism insurance bill passage in his state. Paraphrasing, "We have coverage for Alzheimers..." "The industry has survived other mandates. Mammograms, prostate screening." If the video doesn't download on AoA for you, click HERE to go to You Tube.

Thank you, Governor. And thanks for keeping the insurance industry and weak politician's feet to the fire. Thank him yourself HERE.

Wednesday, July 08, 2009

Do You Read Janet Evanovich?

Which character is this? She's perfect isn't she? I can almost smell the donuts and Cluck in a Bucket chicken that's just out of the shot. And you know she's wearing Via Spigas. This must have been taken when she was engaged to Tank - that's purported to be a wedding dress!

I just downloaded Finger Lickin' Fifteen onto my Kindle. This house has almost no wireless ability at all - and it's funking out my Kindle. It took forever to download because I kept losing my connection. More charm in the neighborhood...

Hiding. Writing. Must.

Saturday, July 04, 2009

This sums me up today.

Is it possible to hate a future adult?

Maybe "hate" is a strong word.

Tonight we were at the ice cream parlor (enzymes in, girls? Coconut ice cream for Bella) and I saw a girl no older than 6 and immediately disliked her. Not her actually, I disliked her adult self.

I'm telling you, she had a look that told me, "As an adult, little girl, you will be an asshole and I will not like you." She did. I swear. I don't usually sum up the entire future of tots at first glance. Really. And it's not as if I dislike ALL adult women with pool slide noses, watery blue eyes and razor straight chin length straw colored bobbed hair and a smattering of freckles.

Somehow, this child telegraphed, "One day I will live in NewDarienStamWich and drive a H23 which will get .02 miles per gallon and I will not give a shit and I will have 3 kids named Madison, Addison and young Ladison IV named after his father Ladison Freemont Saltonpratt the III each of whom will attend Montessouri school and excel in squash, Spanish and who will think that Consuela, our maid, is a nicer person than I am."

Is today over yet?

Friday, July 03, 2009

Swabbing (bleaching) the Decks

Good Lord. So we rented this house and have been here for a couple of weeks. I mopped the hardwood floors, polished them and vacuumed all the carpets before we moved in. The house was surface clean.

But now that I'm living in it, it has dawned on me that the previous tenant was a P-I-G pig. I've heard she was a nurse. For the love of God I hope she works in a veterinary clinic and not a hospital.

The curtain over the kitchen sink was black on the back with cooking residue. And the light over the sink? Hey! It's actually white and not brown! Some people just never deep clean. The ceiling fan in the kids room qualifies for an experiment at CDC.

When I left the "green house" in June (damn I miss that sweet little house) you could eat off the floors. And the toilets for that matter. I'd have been horrified to leave it dirty. I put a CAKE in the freezer for the landlord who was moving back in for Criminy sakes.

I'm bleaching the expansive tile floor in the kitchen, eating area and entry all off the garage. Can you hear the Doobie Brothers in the background? "Oh black water, keep on mopping..." The girls' white socks are filthy at the end of the day. I bought a steamer from Ebay - but need the pads for it.

The bathrooms were horrendous too. Not on the surface - so the LL probably didn't notice. They happen to be lovely people and they take outstanding care of this house, inside and out. No problems there at all. They're great. But the tub and shower floor? UGH. Twenty three Mr. Clean sponges later I'd scraped off the yuckiness.


Happy Independence Day. (Insert eye roll here.)

Thursday, July 02, 2009

Seeking an Agent this Fall?

Found this on the Backspace message board. Backspace is an amazing writers' org. If you're serious about writing and getting published, you should check them out. I met my agent at their agent/author conference. If you bid, good luck!

Ms. Irene Goodman, president of the Irene Goodman Literary Agency (HERE), will auction a single spaced, half-page critique for 25 partial manuscripts (approximately 50 pages and a synopsis).

This will be done on Ebay from Dec. 1 to Dec. 15th. The 25 highest bidders will win. The critiques will all be done personally by Ms. Goodman. They will not be farmed out. Ms. Goodman will email the completed critiques to each of the authors within one month after the auction closing date.

All proceeds will go directly into one of two foundations: the Foundation Fighting Blindness and the Deafness Research Foundation. Both foundations are well established, and the research in each area is incredibly promising. If the necessary funds are obtained to continue research, effective treatments can be expected in the next several years.

Ms. Goodman will consider any commercial fiction--thrillers, romance, urban fantasy, mystery, women's fiction, and historical fiction--and will also look at commercial non-fiction, prescriptive or narrative. For the purposes of this auction, literary fiction and weighty non-fiction submissions will not be accepted.

All starting bids must be $100 or more. Ms. Goodman has been a leading member of the publishing community for over 30 years. Her clients are regulars on the New York Times, USA Today, Walden, Publishers Weekly, and Bookscan bestseller lists. Together with her dynamic staff, her agency represents over 80 authors. Deals range from five to seven figures. Ms. Goodman has led many a career to bestsellerdom and has an intimate knowledge of the art and craft of the commercial novel.