Thursday, March 29, 2007

What's the most powerful book you've ever read?

So I'm thinking about Oprah's pick, The Road and its dark theme. I don't shy away from the book simply because it is described as "dispiriting." I simply have no interest in reading about the struggle of father and son escaping an apocalyptic doom. I saw The Road in Target today on the BestPicks shelf. May it sell a zillion copies.

I asked myself what's the darkest book I've ever read and LOVED. Hands down, "Night" by Holocaust survivor Elie Weisel. I read it long before Oprah recommended it. It was required reading at my prep school. Even as a blissfully naive "are these Vidal Sasoon jeans tight enough?" football captain dating, when's the next party high schooler I knew that Night was no ordinary book.

So, what book impacted you the most?

Wednesday, March 28, 2007

So much for Oprah's Book Pick

She picked "The Road" by Cormac McCarthy. Here's the first line or two from the review on Amazon for this critically acclaimed book.

"Cormac McCarthy sets his new novel, The Road, in a post-apocalyptic blight of gray skies that drizzle ash, a world in which all matter of wildlife is extinct, starvation is not only prevalent but nearly all-encompassing, and marauding bands of cannibals roam the environment with pieces of human flesh stuck between their teeth. If this sounds oppressive and dispiriting, it is."

Now doesn't that sound like a fun book club read???

"Myrtle, will you re-read the passage about how the little girl got her flesh ripped off her body by her step-dad's teeth while I re-heat the Velveeta nacho cheese dip? Thanks, hon."


Homeowners Association Refuses to Allow Family to Install Fence to Protect their Son with Autism.

Mark and I installed $7,000 worth of fence in our yard in Ohio to keep our three girls safe. The town gave us grief. We whispered "disabled child, safety issue, lawsuit" and we got our permit. Our association gave us INSTANT approval. Of course, we agreed to install a beautiful pool style fence in a bronze color that blended into the trees/grass and woods. We did not install a stockade. But if this family NEEDS a stockade to protect their son, they should be able to have one. They don't need any more agita in their lives. Just approve the fence!

Cyber Raspberries to this pathetic homeowners association.

CLAYTON - Hunter Guyader, 2, shows signs of autism, and he is a climber. He broke out of his crib when he was 11 months old. He almost fell from an upstairs window while scaling a couch.
Michele and Rene Guyader hoped to build a 6-foot fence to keep their fast-growing boy from falling into a sewage drain hole at the back of their steeply sloping lot. The homeowners association of their Clayton subdivision turned them down.

Although a U.S. Centers for Disease Control and Prevention study released in February says that about 1 in 150 children born in the nation have autism or a related disorder, getting accommodations for such children can still be a struggle in private neighborhoods.
A privacy fence that tall "just creates a wall," said Rob Bailey of the architectural review committee. The Guyaders appealed the decision based on their son's special needs.

"It's not, 'Gee, I want a 6-foot fence because I don't like my neighbors,'" said Michele Guyader. "I like my neighbors, but I also like my son, and I want to see him safe."

North Carolina is one of only six states the federal government has certified for incorporating Americans With Disabilities Act accessibility guidelines in building codes. But such rules are geared toward public or commercial buildings or dwellings such as hotels, dormitories and nursing homes. They specify widths for wheelchair-accessible toilet stalls, heights for water fountains or the minimum percentage of units in apartment complexes that should be accessible. Backyard fences, though, aren't mentioned.

"ADA regulations only apply to public facilities," Theresa Cathey, president of TLC Management of Raleigh, told the Guyaders in an e-mail message after they appealed. A few days later, the Guyaders received a letter denying their initial request.

Telling a family with an autistic child they can't put up a fence is akin to telling someone in a wheelchair he can't have a ramp up to his front door, said lawyer Greg McGrew of Apex.
McGrew fought his Dogwood Ridge homeowners association in 2001 for permission to build a 5-foot-tall fence.

"My son at the time was an escape artist," McGrew said. "Turn your back, and he'd be gone."
Jacob, then 5, had already been diagnosed with autism. Even though autism is not a physical disorder, McGrew said, parents must often take physical measures to keep children with the disability safe, such as having an alarm system on their doors. Jacob had clambered over a 4-foot-tall fence at a previous home. McGrew and his wife were so desperate to put up a taller fence at their new residence, they went ahead and installed one without permission because the homeowners association was dragging its feet. The homeowners association in turn threatened to sue.

"By all means, let's go," McGrew said. With help from Carolina Legal Assistance, a nonprofit agency that represents clients with mental disability, McGrew eventually got the association to back down. Four of five association board members resigned after the tiff, McGrew said. McGrew later became homeowners association president and president of the Carolina Legal Assistance board of directors.

Bailey, the architectural review committee member in the Guyaders' neighborhood, said he was not fully aware of the son's condition until contacted by a reporter. He would consider a 4-foot-tall fence, topped with a see-through lattice.

The Guyaders aren't sure yet that will work. They argue an exception to the covenant is warranted because they didn't know of their son's condition before moving into Cobblestone subdivision about a year ago.
Early signs of autism

Hunter had been developmentally on track his first 12 months. But after the Guyaders' second child, Annabelle, was born, he started to regress. He won't get in to see a neurologist for an official diagnosis until May. But Hunter already shows signs of being on the spectrum for autism.
The 2-year old has regular meltdowns in the grocery store. To get him to nap, Michele Guyader must drive him around Clayton in the car for 20 to 30 minutes each afternoon.
On this day, after Hunter wakes up from a midday slumber, his mother scoops him up and carries him to the fridge.
"Mmmmmmmmm," Hunter says, hugging her neck then holding out his hands.
"You want milk?" she asks.
Hunter grabs the sippy cup. "Awaayway wawah," he says.
"Really?" Guyader says as if the babble makes perfect sense.

While most children at 18 months know about 40 words and are able to string together two- to three-word sentences, Hunter's vocabulary is limited to hand gestures for "more" and "please." He points his index fingers together, for instance, to say he wants more food.
Half the time, he seems deaf, Guyader says.

She and her husband must watch him closely when he plays in the front yard, pushing his Fisher Price lawnmower or loading rocks into a toy truck. He'll eat the rocks, his mother said. And he doesn't hear them calling his name, telling him not to run into the street.
That's why the Guyaders won't take him to parks without fences, and why they hope to find a safe enclosed space for him to play in their backyard.

Staff writer Peggy Lim can be reached at 836-5799 or

Tuesday, March 27, 2007

Autism AND Publishing Rumors of the Day

1) Oprah has put out a call for families with kids with autism for a show.
2) Oprah is about to choose Temple Grandin's book for her book club.

Money To Burn Wish List

Today you have $1000 of completely disposable income in your pocket. What do you buy? You can't spend a nickel on anything remotely resembling a bill, a debt, or basic food, clothing and shelter. You're a kid in a candy store. Start shopping. My list?

1) A ten ticket pack to Grand Central Station on Metro North
2) The petit fours pan in The Williams Sonoma catalog
3) The two piece Bunny Cake pan in the Williams Sonoma catalog
4) One, just one pair of Manolo Blahniks or Jimmy Choos
5) Another pair of Joe's jeans from Anthropologie, they fit me perfectly
6) A $100 gift card to Starbucks to swipe anytime I need a cuppa
7) An Arbonne anti-aging skin care set
8) A Sirius Stiletto so I could listen to Howard Stern and all my music anywhere

I think I've spent more than $1000. What else is new? Your turn.

Sunday, March 25, 2007

Larry King Live tonight, 9:oopm edt

Larry King Live is re-airing the Autism episode from last week. Please tune in! Toni Braxton speaks about how difficult it has been to learn her young son has autism. Bill Cosby speaks out and offers his services at a concert with proceeds going to the BIOMEDICAL causes of autism, not pure "genetics" like the VAST majority (95%) of studies currently run through the major autism group. Suzanne Wright shows her intense passion for this topic as only a Grandmom can. Michele Illionardi (who I am proud to call friend) give us a glimpse into parenting 3 gorgeous boys with autism. Gary Cole (Mike Brady!) tells us about his 14 year old daughter with autism.

If you missed it, do tune in.

Thursday, March 22, 2007

Welcome HuffPo visitors. You'll find posts about autism, writing and a few about life in general. Please, make yourselves at home!

Let's Make Gravy!

Let's Mambo Italiano! You wanna make-a some gravy? I have a pot on the stove and will share my recipe here. It's from my father in law, Mike Stagliano, who was a phenomenal cook. I miss him.

6 cans Imported Italian Tomatoes - SAN MARZANO STYLE (this is a must. San Marzano's are expensive and worth the money) You can get a huge can if the NINA brand at Costco for a few bucks or you can find other brands at stores for as much as $5.00 a small can! Don't skimp here. It's tomato sauce, the tomatoes matter.)

1 tube of tomato paste. I use Amore brand imported from Italy, it has the best flavor. Use what you can find. Use two of the tiny cans if you buy Contadina. Have a third on hand in case you need to boost the flavor at the end.

1 package short ribs or pork chops (with bone) or ground meatloaf mix of beef/pork and veal. Pick your favorite or none if you prefer meatless gravy

4 HUGE sweet onions, softball sized. Onions = flavor

2 bay leaves

A dash of red pepper flakes

Kosher salt (best for cooking)

4 cloves garlic, sliced not pressed! That injures the cells.

Olive oil

OK - coat the bottom of a large dutch oven with oil. Gently heat. Add sliced garlic. Cook garlic over low heat to get the flavor into the oil. DO NOT BROWN the garlic. Garlic, once burned, ruins the gravy. Remove garlic from pan.

Increase heat and add your meat. Brown the heck out of it. Let it stick to the bottom of the pan. There's flavor in them thar burnt bits! Remove the meat.

Add the onions, the red pepper flakes (I use only about 12 flakes) the bay leaves and the salt. Keep the heat going and brown the onions. Keep scraping the yummies off the bottom of the pan and leave them!

After the onions cook for a good thirty minutes add back your meat and now your tomatoes. If you use 6 cans add 5 cans of water. If you use the giant Costco can add 3/4 full water.

Squeeze in your 4.5 ounce tube of tomato paste.

Bring to a boil, stirring frequently. The tomato acid will foam - scoop off the foam as you go. Allow to boil for an hour, keep stirring, don't let it burn. Lower heat and cook at a low bubble for 4 hours. NO LID ON THE POT!

Keep stirring to break down the tomatoes. Add salt to taste. If it seems blah at the end add a can of tomato paste.

Buon Appetito!
Pink Zinc, It Helps You Think!

Yes it does. The human body is a miracle of balances and formulae. I've learned this since starting my kids autism treatment journey. I should have paid more attention in school to things like adenosine triphosphate and less to Andrew Allen Wheeler (the first boy I kissed in high school. Hi, Andrew!)

Calcium and Magnesium work in tandem. When one is out of balance the body is not happy. Copper and Zinc also have a dance. My kids test high in copper frequently. Too much copper makes your mind foggy, distrupts your concentration. Adding ZINC helps clear their minds and they function better.

My oldest swallows pills. Easy. My younger two need chewable, so we use Trader Joe's pink raspberry tablets. We have a song (I make up songs for everything, my kids "hear" songs better than straight speech.)

"Pink Zinc it helps us think!" Chew chew chew swallow.

Tuesday, March 20, 2007

I couldn't resist. I got my contract in the mail today. Here I am signing it. I am happy. Very happy.
Jelly Donut Jam, or "How I lied to my husband's face."

My husband Mark has taught himself a lot about nutrition and healthy living over the last few years. I'm quite proud of him. He lost 25 pounds and has kept it off for years now. He's 6'1" tall and just over 200 pounds. And very handsome to boot. Jeez, I'd better stop before I grab him out of his home office and have my way with him.

OK - I am sort of healthy. I feed my girls organic, gluten free, dairy free, all natural, no artifical anything foods. I bake and cook from scratch for them. For myself? I'm an under-eater. Thank God. I eat mostly healthy - but confess I like my treats.

So today, in celebration that I can open my mouth after oral surgery yesterday I bought two donuts at Porricellis. Yes, TWO. I came home, grabbed my treat and a huge mug of Starbucks and sat down to read the Times.

I'm happily wiping jelly off my fingers when I heard Mark say "Look at the new upside down food pyramid" as he approached the dining room. I shoved my donut bag under The Times. Meanwhile, I have three quarters of a jelly donut jammed into my cheek and am trying not to laugh, spewing coffee and donut bits all over his book. I feigned total interest in the pyramid, like a good wife.

Today I will find out if he reads this blog regularly or not.

Monday, March 19, 2007


Did you read my post where I cracked a tooth in half on Valentine's Day? Talking about not feeling the love. Well, today, in preparation for my bionic implant I had the tooth pulled. A big honking molar. And Dr. Salvatore Florio, my oral surgeon, gave me narcotics.

An autism Mom with narcotics!? It's a freaking dream come true. That horse sized hydrocodone is just starting to trickle into my system. I can actually feel myself feeling better. Happy. A little giddy. ME LIKEY!!! Now I know why I stopped doing dr-- nevermind.

And Dr. Florio? A dreamboat. Remember how Marcia Brady had a crush on her dentist? Well, I don't exactly have a crush on Dr. Florio. First, he's my age and crushes need to be on older men. At this point that might require that I visit the retired dentists' home... Second, his lovely wife Carolyn works in his office and she's a delight. My Dad was a dentist. As was a favorite uncle and a cousin. We are a dental family. And my Dad's friends who were docs growing up were all Paisans - Lino Tiberi, Fiore Rullo. So Salvatore Florio from Brooklyn (or maybe da Bronx) feels very comfortable to me.

Almost as good as this hyrdocodone!

(PS) Do not fret, my husband is home to help with the kids in case I get completely whacked out.

Sunday, March 18, 2007

THIS IS A FABULOUS ARTICLE! Growing number of autistics want to complete college education.

March 4, 2007
The Associated Press

Stephanie Hurley, right, a Marshall University senior from Portsmouth, Ohio works with David Massey an autistic student from Woodstock, Ill., Wednesday, Feb. 28, 2007 at the West Virginia Autism Training Center at Marshall University in Huntington, W.Va. The ever-increasing number of children diagnosed with autism spectrum disorders has spawned a new challenge: parents and autistic students want improved access to college.

HUNTINGTON - The ever-increasing number of children diagnosed with autism spectrum disorders has spawned a new challenge: parents and autistic students want improved access to college. Before the federal government mandated specialized educational plans for autistics from kindergarten through 12th grade, a high school diploma was a rare achievement. With high school diplomas becoming more common, a college education is now the next frontier for autistic students.

"Autism is an emerging issue," said David R. Johnson, director of the National Center on Secondary Education and Transition. "There's an enormous job to be done here in terms of the post-secondary programs in training faculty and staff and disability staff."

It's unknown exactly how many will attempt college or how many colleges offer programs for students with the neurological disorder. What is known is that one in 150 American children have an autism spectrum disorder, according to a Centers for Disease Control and Prevention study released last month.

Autism is a neurological disorder wherein a child falls within a normal range of intelligence -- and sometimes excels in certain areas, such as rattling off sports statistics. However, many struggle with even the simplest social interactions, such as the correct degree of firmness for a handshake. Many autistics have rigid views that frustrate them in a classroom settings and they can become easily distracted during tests.

"Most parents will tell us that they never even dreamed of college for their child because of the problems in high school, their social difficulties," said Barbara Becker-Cottrill, director of the West Virginia Autism Training Center at Marshall University in Huntington. Marshall's program is believed to be the first of its kind and likely wouldn't have existed without $75,000 in donations from Arlington, Va., lawyer Larry J. Austin, who was desperate to find a college program for his autistic son, Lowell.

When Lowell was 4, his parents were told he should be institutionalized.

"They wanted us to send him away," Austin said. "I couldn't."

Under Marshall's guidance, Lowell plans to graduate with a degree in sports management this year. He will be the third student to complete the five-year-old program.
Clad in a giant green Marshall jacket, Lowell looks like most college students. There are small cues he is autistic: he doesn't maintain eye contact, he fidgets a bit as he speaks. But this is a vast improvement from how he began, administrators say. Lowell agrees.

"This process has helped me a lot with my classes," he said. "When I first came here, I thought it was difficult trying to communicate with others." Now he enjoys performing karaoke, and has friends who like pro-wrestling, just like he does. "It's like a collection of miracles," his father said of Lowell's progress. It actually may be a collection of federal mandates for equal rights that have been enacted for the last three decades.

Laws such as the Individuals with Disabilities Education Act mandated individualized education plans for K-12 students that many autistic students used to maneuver the social hurdles of public education, earning grades and test scores that entitle them to advanced education.
Marshall's program works to extend that individualized attention through the college years by holding daily meetings, keeping tabs on their classrooms and helping them stay organized.

Those accepted pay $3,100 a semester on top of normal tuition and housing costs. The program receives about 40 queries a month. Lowell is one of 10 students currently enrolled and there are only two openings for the fall semester. The program began in 2002.
Marguerite Kirst-Colston has a 6-year-old son who is autistic.

"We have a lot of great information from adults who have autism and who have gotten through the system alone and what they would say is give these kids a chance," said Kirst-Colston, spokeswoman for the Autism Society of America. "Many of these kids are so bright and have such an intellectual curiosity. Colleges are potentially some of the best areas for our children."

Saturday, March 17, 2007

Happy St. Paddy's Day! I am 1/4 Irish you know!

When I was a kid I used to tell people, "I'm half Italian, a quarter Irish, a quarter Venezuelan and all the rest American." I really was a cutie pie! Oh, I also told my baby sitter's pimply boyfriend, "You're ugly you ass." I was five. Not such a cutie pie.

Trip to Boston cancelled. That's OK. I had a great week. I might have overindulged had I gotten out of town. Perhaps the Good Lord was looking out for me.

Careful with the green beer!

Friday, March 16, 2007

Today's FOUR letter word?

SNOW! ARGH! The kids are home from school.

I'm supposed to head out for a girls night away from home tomorrow to meet my dear friend Gen in Boston. Gen and I used to live and play in Boston. We attended BC. We drank alcoholic beverages with cute boy/men, ate pancakes at the IHOP while nursing hangovers and took aerobics classes religiously at Esposito's gym (where the buff boy/men lifted weights.) Gen and I complement and compliment eachother well.

Girls night out means sleeping in a bed made by a stranger in a room vacuumed by a stranger with a bathroom cleaned by a stranger. Rumor has it I am allowed to leave said room with the bed tussy mussied, the bathroom strewn with soppy towels and a ten dollar bill on the nightstand to say thank you to the stranger. Perhaps if my maiden and last names did not end in vowels I could acconmplish this feat of rudeness.

I make the hotel bed and I clean up the bathroom, leaving the towels in a neat pile, the sink clear of toothpaste splurbles, the dark hair that proves my Italian/neanderthal roots out of the tub.

Call Hertz - I need to rent a plow, I am going to Boston tomorrow.

Thursday, March 15, 2007

HPV Vaccine Researcher Speaks Out. SPREAD THE WORD, WARTS AND ALL.

This article ran in an Indiana daily newspaper. Not too many major outlets will pick it up, I'm sure. So do feel free to ah, "spread" the news. The more info you have the better medical decision you can make for yourself and your daughters. You need both sides of a story to decide though.

Diane Harper is at Dartmouth Hitchcock Medical Center, a top US medical institution.

Diane M. Harper, a lead researcher in the development of the humanpapilloma virus vaccine, says giving the drug to 11-year-old girls "is a great big public health experiment." (Photo contributed)

LEBANON, N.H. — A lead researcher who spent 20 years developing the vaccine for humanpapilloma virus says the HPV vaccine is not for younger girls, and that it is "silly" for states to be mandating it for them.
Not only that, she says it's not been tested for effectiveness in younger girls, and administering the vaccine to girls as young as 9 may not even protect them at all. And, in the worst-case scenario, instead of serving to reduce the numbers of cervical cancers within 25 years, such a vaccination crusade actually could cause the numbers to go up.

"Giving it to 11-year-olds is a great big public health experiment," said Diane M. Harper, who is a scientist, physician, professor and the director of the Gynecologic Cancer Prevention Research Group at the Norris Cotton Cancer Center at Dartmouth Medical School in New Hampshire.
"It is silly to mandate vaccination of 11- to 12-year-old girls There also is not enough evidence gathered on side effects to know that safety is not an issue."

Internationally recognized as a pioneer in the field, Harper has been studying HPV and a possible vaccine for several of the more than 100 strains of HPV for 20 years - most of her adult life.

All of her trials have been with subjects ages 15 to 25. In her own practice, Harper believes the ideal way of administering the new vaccine is to offer it to women ages 18 and up. At the time of their first inoculation, they should be tested for the presence of HPV in their system.
If the test comes back negative, then schedule the follow-up series of the three-part shots. But if it comes back positive?

"Then we don't know squat, because medically we don't know how to respond to that," Harper said.

Harper is an independent researcher whose vaccine work is funded through Dartmouth in part by both Merck & Co. and GlaxoSmithKline, which means she is an employee of the university, not the drug companies. Merck's vaccine, Gardasil, protects against four strains of HPV, two of which cause genital warts, Nos. 6 and 11. The other two, HPV 16 and 18, are cancer-causing viruses.

Merck's vaccine was approved last year by the Food and Drug Administration, and recommended in June for females ages 9 to 26 by the Centers for Disease Control's Advisory Committee on Immunization Practices (ACIP).

Glaxo has stated publicly that its vaccine, Cervarix, which protects against the two cancer-causing strains, should be on the market by 2008.

As the director of an international clinical trial for these vaccines, and as author of lead articles about the vaccines'
effectiveness, Harper has been quoted widely as saying this vaccine could have enormous potential to eradicate the great majority of cervical cancers.
Not tested on young girls.

Picking up on this, but before the trials were even completed, major news media and women's advocacy groups began trumpeting the vaccine as an answer to cancer of the cervix.
Once it was approved by the FDA and ACIP, Women In Government (WIG), a non-profit organization comprised of female state and federal legislators, began championing Merck's vaccine in their home states, with many of the ladies introducing legislation that would mandate the vaccine for 11- and 12-year-olds.

In Indiana, Sen. Connie Lawson, R-Danville, introduced such a bill in this year's General Assembly, but in the face of strong opposition, it was reduced to an education/information-only bill that requires data collection on any Hoosier girls who do get the vaccine. The bill is now awaiting a hearing in the Indiana House.

So far at least 26 states are reported to be considering some form of legislation requiring the new vaccine for younger girls. In February, Republican Texas Gov. Rick Perry bypassed his legislature and mandated it for all 11- and 12-year-old girls in his state.
Monday, The Associated Press reported that New Mexico's governor, Democratic presidential contender Bill Richardson, is set to sign a bill requiring sixth grade girls in his state to get the vaccine.

The idea is to inoculate them before they become sexually active, since HPV can be spread through sexual intercourse.

But that idea, no matter how good the intentions behind it, is not the right thinking, Harper said. The zealousness to inoculate all these younger girls may very well backfire at the very time they need protection most, she said.

"This vaccine should not be mandated for 11-year-old girls," she reiterated. "It's not been tested in little girls for efficacy. At 11, these girls don't get cervical cancer - they won't know for 25 years if they will get cervical cancer.

"Also, the public needs to know that with vaccinated women and women who still get Pap smears (which test for abnormal cells that can lead to cancer), some of them will still get cervical cancer."

The reason, she said, is because the vaccine does not protect against all HPV viruses that cause cancer - it's only effective against two that cause about 70 percent of cervical cancers.
For months, Harper said, she's been trying to convince major television and print media to listen to her and tell the facts about the usefulness and effectiveness of this vaccine.

"But no one will print it," she said.

The rest of the story
According to Harper, the facts about the HPV vaccine are:
• It is not a cancer vaccine or cure. It is a prophylactic - preventative - vaccine for a virus that can cause cancer. "Merck has proven it has zero percent effectiveness for curing cancer," Harper said. "But it is a very, very good vaccine that prevents types of HPV responsible for half of the high-grade cervical lesions that cause about 70 percent of cervical cancers. For the U.S. what that means is the vaccine will prevent about half of high-grade precursors of cancer but half will still occur, so hundreds of thousands of women who are vaccinated with Gardasil and get yearly Pap testing will still get a high-grade dysplasia (cell abnormality)."
• It is not 100 percent effective against all HPVs. It is 100 percent effective against two types that cause 70 percent of cervical cancers.
• The vaccine only works if the woman/girl does not have a current vaccine type related infection (in other words, the vaccine only works when the woman/girl does not have HPV 6, 11, 16 or 18 - the viruses that Gardasil targets when she receives her first vaccine shot).
• The vaccine doesn't care if the girl/woman has been sexually active, Harper said. "HPV is a skin-to-skin infection. Although the only way to get cervical dysplasia is through an HPV infection, and HPV is most often associated with sexual activity, HPV is not just spread through sex. We have multiple papers where that's documented.
We know that 3-year-olds, 5-year-olds, 10-year-olds, and women who have never had sex have been found to be positive for the cancer-causing HPV types."
• Therefore, for example, if a girl is positive for HPV 16 when she is inoculated with the vaccine at any age, she will not be protected against it later, Harper said. "That means it's a failure and those people are at risk for getting the HPV 16 and 18 cancers later."
• The only way to test for the presence of HPV is through a vaginal swab - which is inappropriate for young girls, she said.
• So what happens if the girls are vaccinated anyway, not knowing whether they were carrying the virus at the time of their inoculation?
"They will not be protected if they were positive for the virus at the time they are vaccinated," Harper said.
• That is why it is important to note that the vaccine has not been tested for efficacy (effectiveness) in younger girls, she said.
Instead, the effectiveness was "bridged" from the older girls to the younger ones - meaning that Merck assumed that because it proved effective in the older girls, it also would be effective in the younger ones. The actual tests on the younger girls, ages 9 to 15, were only for safety and immune response, Harper said, and then only as a shot by itself, or in combination with only one other vaccine, Hepatitis B. It has not been tested in conjunction with any other shots a girl receives at about age 11, Harper said.
• So far more than 40 cases of Guillian-Barre syndrome - a dangerous immune disorder that causes tingling, numbness and even paralysis of the muscles have been reported in girls who have received the HPV vaccine in combination with the meningitis vaccine. Scientists already know that sometimes a vaccine can trigger the syndrome in a subject. "With the HPV vaccine, it is a small number but higher than is expected, and we don't know if it's the combination of the two, or the meningitis alone," Harper said.
• In the end, inoculating young girls may backfire because it will give them a false sense of protection. And, for both young girls and women, because the vaccine's purpose has been so misinterpreted - and mis-marketed - Harper feels that too many girls and women who have had the vaccine will develop a false sense of security, believing they are immune to cancer when they are not, and failing to continue with their annual Pap exams, are crucial to diagnosing dysplasia before it can develop into cancer.
Keep getting pap smears
The message to consumers, Harper said, is don't stop getting Pap smears just because you've gotten the HPV vaccine.
"This vaccine is good, and it will save a huge number of lives around the world," Harper said. "But an important point is that, if women get the vaccine and then not get their Pap smears, or decide to get them infrequently, what will happen in the U.S. is that we will have an increase in cervical cancer, because the Pap screening does a very good job.
"That's my main diatribe. We don't need mandatory vaccinations for little girls. What we do need to ask, though, is how long does it last, and when do you need a booster?"
Message for governors
For the governors of the states in this country, Harper has another message. One has to do with the fact that vaccinating little girls now is not going to protect them later. Since it can take a decade or more to even manifest itself as dysplasia, the HPVs against which this vaccine works may infect a little girl at the age she needs the vaccine most - meaning she will have to have a booster at the right point in time or she will not be protected. And, remember, it won't work at all if she was positive for the virus when she was inoculated in the first place.
Merck knows this, Harper said. "To mandate now is simply to Merck's benefit, and only to Merck's benefit," she said.
Merck was required to put together a database on the efficacy in children before Gardasil was approved, Harper said. But instead, the company put together four study sites that "are not necessarily representative, and may not even have enough numbers to determine what they need to know."
Since she doesn't personally have access to the money Merck and GlaxoSmithKline pay for her HPV vaccine research, Harper doesn't know exactly how much either has paid Dartmouth for her work.
The trials are expensive, between $4,000 and $5,000 for each patient, she said. With over 100 patients in her study, some big bucks could be in the balance, should Merck or Glaxo become upset with her for making these comments.
Why, then, would she risk speaking out like this - at a time when her words very well could influence legislation across the country, and prompt legislators to drop the mandates? Isn't she afraid of losing her funding?
"I want to be able to sleep with myself when I go to bed at night," Harper said. "My concern is still, let's get women's health better. It is still a good vaccine. But let's be honest. Don't over-promise."

Wednesday, March 14, 2007

Poor, poor men!

No, I really mean that. I feel very sorry for men today. Especially those brave young (and not so young) guys on the dating scene. They live in a world of feminine deception, estrogen-laden illusions, bait and switch and ultimately sheer treachery.

We all know about the falsehood of falsies. That's why they're called falsies, right? Bras with built in boobs. Pushing up and out an A cup sized breast under the guise of a C cup delight. I gather most men know that the breasts that see on that gal standing at the Friday's bar are quite possibly counterfeit cuppas. Even if they're real they could be fake. Men get that.

But there's a new traitor in town. It's called the "tummy tuck jean." Even I have to ask WTF is that? How about a pair of jeans that must have some sort of girdle like material that claims to make you a size smaller. OK, so if you're a fourteen and you squeeze yourself into a twelve and feel all svelte and sexy what happens to the poor slob who unleashses your tidal wave of tubbiness at midnight??? Really? Do you really want to start your foreplay with "THAR SHE BLOWS!" I think not.

If you're a size fourteen you can be every bit as attractive and sexy and wonderful as a size two. I admit that if you're very obese you might have a tougher time landing a date, but that's not news to you, right? This obsession with size and numbers and looks is daunting.

I guess when I really think about it, it's the WOMEN I feel most sorry for. Love yourselves, darn it. A man who loves you more as a size 12 than a size 14 isn't worth spit.

Tuesday, March 13, 2007

Super Agent X is.......

Now my agent! I got what is known in the publishing worlds as "The Call" today. Talk about your March Madness! (Go BC!) I was ready for the call, you know. Not that I was particularly confident and ballsy, I worried until the minute he said he'd like to take on my book. You see, he is an opera lover and an opera critic for major publications like Variety and The Times. So I gave him his own ringtone. From Carmen. When that tune trilled at me today I got very nervous!

More good news? I also learned today that I'll be included in an anthology about autism due out in March of 2008, in time for Autism Awareness Month (April.)

Now, I am going outside to look for wallets on the ground. It's a lucky day. And like my father in law used to say, "Sometimes it's better to be lucky than good." I kind of hope I'm both.

Welcome, Patrick Sullivan, Jr. Bloggers. The post he linked is two posts down. Powerful stuff.

KIM, proud Mom to Mia, Gianna and Bella. Three ASD beauties.

Monday, March 12, 2007

Starry Day!

What a lovely day I had today! I got the girls onto their school buses sans mishaps, amen! Then I hopped into my Catholic sports car (black minivan) and zipped 5 miles to the train station where I caught the 9:33am Metro North into Grand Central.

I stepped onto the streets of New York to greet a sunny, pleasant early spring day. Ah! Breathe in the sights and sounds of the New York! I walked a few blocks up to the Waldorf, where, waiting in the lobbym was my sister Michele, her husband Mike and my nifty nephew Colin. They're in NY for spring break, from Houston. The day gets better! Ten minutes later my brother Rich and his partner Ed walked from The W where they spent the weekend. They live in DC. JOY! I rarely get to spend time with my brother and sister.

We walked to the MOMA and enjoyed the art for ninety minutes. Well, we enjoyed most of it - the less modern art, I must admit. I didn't get the "basketball and dirt on paper" exhibit at all. It was white paper with lines of dirt on it dribbled (ha ha) and the basketball tucked behind the canvas. I would have called it "Clean up your mess, LeBron!"

But, we also say Picasso's, Miro's, Mondrians, Renoir's Water Lily Cloud Reflection panels, Seurats, Andrew Wyeth's famous Christina and (drum roll please) Van Gogh's STARRY NIGHT! Right there, in front of us. That gorgeous, motion filled canvas of blues and yellows and tears.

In the MOMA gift shop I found the coolest gift, right out of Pee Wee's Playhouse. "Clocky" It's an alarm clock on wheels. You set it and place it on the floor. When the alarm goes off it rolls away so you have to chase it to turn it off! Cutest little thing. I can imagine it gets crushed a lot by sleepy, angry snooze button lovers.

We strolled down Fifth Avenue to Rockefeller Plaza and had lunch. Food! Hot on a plate served to me by someone not in my gene pool! Dishes cleared! Water glass filled with sparkling water with only a nod. Aaahhhhhh.

Final thrill? We were across the street from Anthrpologie and I had a $150 gift card in my pocket. I spent $10.00 and got a kick ass pair of jeans called "Sexy, Curvy." Not so much, I'm rather slim, but they still look good! I hate mom jeans up to the boobs (or where a woman with more curves would have boobs.) I admit to liking low rise jeans. Not stupid low. Just low.

I kissed my family goodbye and boarded the 3:33 train back to Connecticut. At 5:10 I was kissing my girls hello. At 5:30 I had gluten free alphabetini and gravy on the table for them.

Thank you thank you thank you to my husband Mark for being home to get the girls off the bus so I could go into the city today. I recharged my flagging batteries. Lovely!

Sunday, March 11, 2007



I've been asked to post a guest blog piece. So awaaay we go!

Tami Giles writes:

An Autism Calling

My friend Dave Humphrey has been writing a private blog, chronicling his month-long trip to Thailand, where he is helping to open a Medical Treatment Center for Autism. While many of his posts are private- detailing the outstanding medical evaluations and treatments he is receiving for his own personal health needs while there, he provided an entry that hit me in the gut.

I consider Dave Humphrey a dear friend. Who else would take the time to get his maintenance man to haul a rolling ladder in the lobby of Kirkman Labs, just because my son had an urge to examine the exit sign on the ceiling?

But this isn't just about my friendship with Dave; he is a friend to the entire autism community and an incredible humanitarian. He is a Board member of the Autism Society of America, Autism Research Institute and the Northwest Autism Foundation, co-founder of the Autism Treatment Network, and the owner of Kirkman Labs, just to begin with. Dave and his father shared a life-long friendship, spanning decades, with one of the greatest men in history- Dr. Bernie Rimland.

With his permission, I am circulating Dave Humphrey's heart-felt blog entry. This is an open letter to all of those involved in autism, but especially to all of those researchers and medical professionals who have been, and still are- using precious research dollars on the pretense of looking for answers at our children's expense. It's time to stop the senseless research spending on snipe hunts and begin helping our families. Indeed, it's definitely time to stop the NARAPOIA.

Heartfelt thanks Dave, for this outstanding reality check and call to action.

--Tami Giles

Autism - Global Problem – A Time for Action
David Humphrey
March 7, 2007

Not much in these posts has been about autism.

It is intentional because much of what we are working on this autism treatment center in Asia is embargoed until we are ready to talk about it.

But AUTISM is the reason I am here. It is much of the motivation for getting better and living longer. There is so much to do.

Autism around the world is rarely talked about in the United States. Until recently it really wasn’t talked about at all.

The following is the best information on the number of children facing a life with autism in Asian countries

China 2,500,000
University of Beijing estimate – working with Johns Hopkins to get a better number

India 2,000,000
Reports from parent groups not confirmed by government (number attempted to be verified by AS)

United States 600,000
INCLUDED FOR REFERENCE # - Current estimate of CDC in the US

Indonesia 350,000
Estimated by Health Minister of Indonesia

Japan 300,000
Widely reported to have the highest rate of autism in the world

Philippines 250,000
Estimate by the Autism Society of the Philippines – a reliable source

Vietnam 200,000
Unreliable number

Thailand 180,000
Estimate of the Minister of Mental Health

The numbers don’t mean much until you meet the children and talk to their families. I have done that a lot in the past few years.

What is crushing for families in the US - with pretty good resources - is unbearable in countries were families have very limited resources.

Governments in most of these countries virtually ignore the problems of autism because the just can’t deal with the enormity of the problem. We were in North Korea were their solution is to send children with autism upon the first symptoms to a remote institution where their life expectancy is less than 2 years. Most starve.

Even in 2nd world countries with strong economies - lots of Starbuck’s -- conditions can be horribly bad - I have been in Autism institutions where these children are literally warehoused in shocking conditions.

You are permanently changed from the experience of walking through an institution and seeing 3,000 children with autism - some tethered to their beds lying in fecal matter as a result of chronic diarrhea and untreated medical problems.

It is 1 out of 150 children and growing.

This global problem is not a problem we turn away from.
This global problem is not a problem we turn away from.
This global problem is not a problem we turn away from.

Autism is a global problem that requires global solutions.

Just as AIDS began with treating the wealthy - it became all of our responsibilities to face AIDS as a global epidemic we had to address the poor and neglected.

Today - a person with AIDS in Haiti can get the same treatment with dignity as in downtown San Francisco. The program is run by an American who refused to quit - who had a dream. That was not afraid of his academic reputation - that saw the face of God in the people that were suffering.

(see a very compelling article about what one man did for AIDS in Haiti -

Silent Pain of Autism

My good friend Ells Culver - founder of Mercy Corp (the largest international emergency relief agency) went with me to Asia and investigated the devastating effect of autism. He got very involved with the unbelievable neglect he saw.

He told me with great sorrow -that if he were not working for Mercy Corp he would devote his life to autism. He said that the children were raised in silent terror and ignored by those that should be helping. This cause him more pain he said than disaster victims who do get help. He died last year at 78 with most of his work undone.

Because these children are raised in such sorrow – and in silence - it is their collective voice we need to hear. It is defining problem for me. It is a defining choice for those of us involved with allocating resources. It is a defining choice for you.

To say that maybe we need to concentrate on autism in the US is not asking the right questions. It is a convenient way to look away.

They are our children - they are our responsibility. There are no country boundaries with autism.

We are on the Threshold of a Dream - a way to solve the problems of autism

We have the pieces of the puzzle in front of us. We can see the future solution by putting the pieces together- it is up to us. We can have a dramatic effect on the future if we believe and have the tools. If we work together.

The future is to stop autism in the next generation and treat those with autism with respect and dignity regardless of where they live and their finances.

They NEED our angry advocacy.

The dream includes:


We have evidence that all of this is possible- actually probable. It needs to be part of public policy not just boutique clinics.

Will this happen if we just focus on expensive solutions for the wealthy in the US? - you know the answer.

There are individual silos of knowledge that can make this happen. It can happen in our lifetimes.


I really miss Bernie Rimland. He looked out and always was able to see the future as well as the urgent need for Treatment NOW! His selected guy Steve Edelson also gets it and I am proud to call him my good friend.

Bernie understood global because he understood autism. He never separated the two. He had a cot in the back of his office to take catnaps so he could answer phone calls from around the world. From parents. These were not strangers - he just didn’t know them before they called.

Bernie was not polite in tolerating the clueless - those that he said had “contempt before investigation”. Those that had to ask if this was the right time to begin treatment. “Nonsense! – he would say”… nonsense

Because you see - these same people also do not want to hear about the parents highly significant EVALUATION of their child’s conditions OR the diagnosis of specific medical problems that their child is facing. Treatment is the result of the other two coming first. It is also the other two – evaluation and diagnosis that they do not want to talk about either. These are not options for out children – they are rights.

He repeated said he suffered from NARAPOIA - not paranoia but narapoia, Narapoia he would say is the “false belief someone is trying to help you”

So many are receiving money for autism based on their academic curiosity… with little or no interest in treatment. They actually use their influence to discredit treatment and the courageous parents that are self treating their children because of professional neglect.

Being here in Thailand feels right. It will be part of the solution.

Divine Hand

Ells Culver told me that don’t be concerned with the difficulty or the discouragement in working on the autism problem. He said that a divine hand will guide us toward success.

More later

David Humphrey

Wednesday, March 07, 2007

Au Revoir, Pee Wee! I'm Off to Paris!!

Just like Simone from Pee Wee's Big Adventure! A dream come true! I'm finally going to Paris, France! You see, I got a promise for this trip from my wonderful husband to ease the pain of a certain significant birthday. Significant as in, "I'm HOW old??" He gave me a beautiful print of Paris, a card with the Eiffel Tower on it and a sweet note inside about our future trip. And now, a few years later (I'm now, how old plus three) I'm going to get to the City of Lights. Paris!

Gosh, I'd love to blog more about it but I've got to get busy! I leave today! Let's see. Where's my checklist. Tube? Oui. Tyvek envelope? Oui. Requistion filled out? Oui!

Oh, I'm sorry, did you misunderstand me? I AM going to Paris today. Well, at least my oui oui is.... I'm sending a urine sample to a lab in Paris for testing related to autism.

C'est la wee!

Tuesday, March 06, 2007

Busy! Eager! Hopeful!

I hope to write more later -I'm very busy scribbling away. Can't stay to chat. More later!

Saturday, March 03, 2007

Me and Carrie Bradshaw (Yes, I am aware of the grammatical error. I'm channeling Janis Joplin, OK?)

If you were ever a fan of Sex and the City - as it aired on HBO, not the ridiculous edited version on TBS - you've probably compared yourself to the four women on the show. Are you a Carrie? A Miranda? A Samantha? Or are you a Charlotte?

I'm a cross between Carrie and Charlotte with a soupcon of Miranda. But that leaves Samantha. She was the sex-crazed woman who took charge of her own life, made her own fun and was the most independent. Until seasons five and six where she finally met a great guy and settled into a relationship.

These days I have a lot more Samantha in me than I used to. HUH? Married 15+ years, three kids and acting like Samantha Jones? Impossible. Not really. I am a lot more in your face, vocal and willing to forego the approval of others to meet my own goals than I was as a younger woman. I credit my girls for that. Ain't no one going to fight for them like I am. And if I can fight for them, I can fight for myself.

Plus, Mark and I have survived some major league upheaval. Try two years of unemployment on top of three autistic children combined with selling your house, moving in with your folks (his in laws) before finally settling into a normal routine again. Then I again, DON'T try it. It's not all that fun. But since this bumpy ride hasn't made us want to stab each other with the steak knives (not getting a lot of use, we eat more hamburger than steak these days) I can say without a doubt it has made us stronger.

Publishing is a tough business. Agents get 20,000 - 30,000 queries a year from people like me, who've written a novel and dream of walking into Border's and seeing our book on the shelf. The front shelf. My kids and our family journey have given me a healthy dose of Samantha - I am not a quitter. I am a fighter. Unlike, Samantha, I've never had sex on a swing though. Does a slide in a park count? ;) I'm not quite as sweet as Charlotte after all.

Favorite Episodes:

Season four, second episode. Carrie falls on the runway during Fashion Week, picks herself up and struts back down the runway. Heidi Klum gives her a high five. Rejection and failure turn to triumph and pride.

Final season, second to last episode. Samantha is speaking at a cancer fundraiser and is nervous, staid and boring. Then she puts her heart into the speech, whips off her wig and says "Who are we kidding? Cancer is hard." The rest of her speech is inspiring as other women pull off their wigs, revealing their bald heads.

And of course, Season Six final episode and Big flies to Paris and tells Carrie "She's the ONE!"

Friday, March 02, 2007

I'm finally getting my IMPLANT!!!

WHAT? Getting implants? Noooo. Read that header again. Sing-You-Lahr. Implant. Now don't get all nervous. I don't have the C word (the disease version, not the naughty word and not the autism version.) I think you have to have something resembling actual breasts to get that kind of C. I have many fine physical attributes. And two notable shortcomings. Enough said.

So what's up with the implant. Am I a tranny - suffering from impotence and needed a penile implant? (Quick check down jeans.) Nope. Nothing wangling around down there and I am quite certain I've given birth once, twice, thrice. I was the "Birthinator" and didn't use any drugs. Trust me, I recall the process.

Implant.... I'll tell you my sad tale. I bought a bag of Italian hard candies at Valentine's Day. Yummy Perugina fruit candies with chewy centers. I was going to send them to my Mom along with her Valentine's Day card. Then I thought they might mess with her molars - so I tossed the bag of candy into the center console of my Catholic Sports car. (Grand Caravan. But it's black with pinstripes so it's not completely pathetic.) I was waiting to pick up Miss Peanut at school two weeks ago and Jonesing for some sugar. "Ooooh! I have candy in the car!" Grabbed the bag. Ripped it open. Chose a candy and chomped on down.

Ceeerrrrrruuuunnncccchhhhhhsssstttiiiicccccck. The candy molested MY molar! I guess Perugina means "rich dentist" in Italian. At first I tried to ignore the tooth. Not happening. So I went to the dentist to discover I had cracked my #14 tooth (upper left first molar) right in half.

Dr. Axelrod tells me I have choices. 1) Pull the tooth and leave a hole. My driver's license says CONNECTICUT not "BACK WOODS OF KENTUCKY" so having a gap in my mouth is not acceptable. I am a vain, if flat chested woman. 2) Make a removable molar like a retainer. I am no longer 14. Kimmy don't do retainers anymore. 3) Get a bridge using the two happy, healthy unfettered neighboring teeth as stanchions (is that a word) for a fakey. Then face damage to those teeth when I'm old and dotty. And 4) GET AN IMPLANT.

So, I'm off to the oral surgeon next week. It takes almost a year for an implant. It's too gross to discuss on this blog.

On a happier note - my MS is off for a final look see and then goes to Super Agent X by Tuesday.

Happy weekend all!