Thursday, November 27, 2008
Wednesday, November 26, 2008
Well imagine my surprise! It's 6:37am. There's no school today so my kids slept in until 5:00am. I'm working on my computer, and I have yesterday's Sesame Street playing in the background. I record it every day. For the girls, that's right. (I adore Sesame Street, I confess. I watch it more than they do.)
Well whose voice do I hear but Miss Jenny McCarthy! She's talking about insects (not parasites....) Check her out HERE! There's a 30 second intro before she comes on screen. She does a fine impression of a butterfly!
Don't forget to buy a copy of Jenny's best selling book Mother Warriors for someone on your holiday list! Give hope for the holidays!
Tuesday, November 25, 2008
I am. Seen her several times. Love her music. Have most of the lyrics memorized. Invited her to my wedding. She's gotten me through thick and thin. Never the kind of shit we're in now - mostly younger stuff. College. Just out. But Stevie always makes me feel better. I used to run 5 miles a night with a clunky old WalkMan. Come home from working at Hill Holliday Advertising in Boston and run all over Newton, Mass, Stevie blaring in my ears. Forgetting. Remembering. Surviving. Conquering. Stevie Nicks. Me? Who knew? Beautiful Child can make me cry in a NY minute. I Can't Wait makes me want to throw on my running shoes and bolt. Enjoy both.
My husband is out of work. COBRA would cost $1500 a month. The Cigna insurance we carry excludes autism coverage. The law passing in CT excludes the company under ERISA laws.
We looked into private insurance as an alternative. Just a catastrophic plan to save our ass should I finally jump off a bridge or something. Golden Rule insurance will not cover the girls because of their autism diagnosis. Aetna will consider them with a 90% surcharge. Neither covers autism though.
WTF? How is a family supposed to survive???
Monday, November 24, 2008
If you're a writer, whether agented or published or not, we ALL need to support the industry so that 2009 will bring more deals for all. Grab this photo and blog "I'm buying books for the holidays" won't you please??
Some favorites: Patricia Wood's Lottery, Kimberly Willis Holt's Piper Reed kids' books (I love that kid!), Chris Grabenstein's adult and YA books, Holly Kennedy's wonderful women's fiction, Heather Brewer's YA "Vlad Tod" vampire books, Jenny Gardiner's "Sleeping With Ward Cleaver" (great gift for your BFF!) and so many others!!!
It's too depressing for words. Beautiful Lenox china. Word is Waterford Wedgewood is close behind. I guess we'll all be poor and just eat Spam off Dixie plates. I'm so sad about this.
Friday, November 21, 2008
WHOO HOO! We're going to the new James Bond movie. Daniel Craig - yummalicious. And I'm sure there will be plenty of eye candy for Stalingo to enjoy too.
Can we really afford a night out right now, with Mark out of work? Well, we'll do the movie. We won't go to dinner. Maybe a Starbucks coffee afterward. My stress levels are through the roof. We need an evening out. It's cheaper than therapy or a divorce.
Thursday, November 20, 2008
Tuesday, November 18, 2008
Meet a lovely little girl named Riley. Riley has a couple of things. One is Asperger's Syndrome. Riley has surmounted tremendous obstacles like a real champ. She's a hardworking, kind hearted child. Two, she has a doll of a brother named Seth. Three, she has parents who are two of the most down to earth, insightful, caring and motivated (you can care all you want, if you don't do jack squat it doesn't much matter, does it?) people I know.
Last year when Mark was out of work (Oh! Deja vu!) Michelle organized a fundraiser to help my kids. She fought with me to make me accept the help. Yes she did. And many of you came to our aid. I'll never forget it. Never ever. Family often has nothing to do with genetics, does it? SO - Michelle is trying to get a helper dog for Riley. A service dog! And she's raising fund to do so. If you can donate a few dollars, I'd consider it a favor to me. And around and around we go - love. That's what Michelle tells me when I feel panicked about our life. One simple word: LOVE. Read her blog HERE.
"I would feel happy if I got a dog to calm me down because I would take it for walks and feed it. It's cuteness would calm me down when I am having a hard time. It would go with me everywhere. It might get along with the other cats. I will take lots of care for it and I will love it very much."
If you would like to donate toward Riley's service dog, click here to contribute on-line.
Or, checks can be sent to:
4 Paws for Ability
253 Dayton Ave.
Xenia, Ohio 45385
Donations are tax deductable. Make sure you put "Riley O'Neil" in the special instructions.
From the bottom of our hearts, thank you.
* for more on autism service dogs click here.
He had the car inspected (no damage at all.) He's ready to turn in the car.
First, we inquired as to the buyout and tried to negotiate a better deal (the residual value today is way too high compared to the market value given the state of the car industry.) We thought Nissan would want to just get rid of the car - and maybe my parents could buy it. Nissan does not negotiate residual value. Fini. They'd rather send the car to an auction. Ok, whatever. We're not paying to buy out an overpriced car.
Monday, November 17, 2008
By Dan Olmsted
A harsh new report is blasting the relationship between a federal agency and the Institute of Medicine -- saying costly reports the IOM produced were worthless and failed to connect a widespread but baffling epidemic with its true causes.No, it's not about autism. This criticism relates to the Veterans Administration and studies it commissioned from the Institute of Medicine to look into Gulf War Illness.
The Congressionally mandated independent review of Gulf War Studies, in a report to be officially released Tuesday, calls the VA-IOM effort a diversion from the search for the truth.It says that Saddam Hussein didn't cause Gulf War Syndrome -- we did. The most likely suspects, it concludes, are a nerve gas antidote used protectively (there was never an attack) and widespread exposure to pesticides. And it says multiple vaccinations given to the troops cannot be ruled out.
Too many vaccines … a potent and inadequately tested medicine used to ward off an attack that never came, one that may have mimicked the effects of actual exposure … environmental toxins causing new and catastrophic mental and physical damage … a conflicted government agency using the IOM for its own purposes.
In other words, it sounds a lot like the autism-vaccines report the IOM produced in 2004 for its client, the CDC -- which found no relationship between the two -- and the belief by many in the autism community that the science was skewed to produce a predetermined result. It also goes to the issue of whether scientific research has become so politicized and corporatized, especially in the past eight years, that a top to bottom review is needed -- something President-Elect Obama has said he will order.Here is the heart of the matter, according to the new report:"In 1998, with few conclusive answers to continuing questions about Gulf War illness and the federal response to this problem, Congress directed VA to contract with the National Academy of Sciences (NAS) to review available research in order to assist the Secretary of Veterans Affairs in making decisions about Gulf War-related disability compensation.
Public Laws … directed that the review identify conditions that affect Gulf War veterans at excess rates and assess the scientific evidence concerning associations between those conditions and a detailed list of Gulf War exposures.In response, VA commissioned the Institute of Medicine (IOM), within the National Academies, to conduct a series of reviews using a methodology previously established to evaluate diseases affecting Vietnam veterans in relation to Agent Orange. (Hyams/Brown). To date, the resulting Gulf War and Health series has included nine reports, including two updated reports, and provided hundreds of conclusions.
The Committee was concerned to find that the IOM reviews were not conducted in accordance with the laws that mandated them. As a result, the Gulf War and Health reports have provided little information that is directly relevant to health conditions that affect Gulf War veterans at excess rates, or their association with Gulf War exposures.
The 1998 legislation specifically directed that VA commission reviews that identify both diagnosed and undiagnosed illnesses that affect Gulf War veterans at excess rates and, based on a comprehensive consideration of available research, determine whether there is evidence that those illnesses are associated with Gulf War exposures or Gulf War service. However, the health conditions considered in the IOM Gulf War and Health reports have primarily included multiple types of cancer and a number of other diagnosed diseases—conditions for which there are no indications that Gulf War veterans have been affected at excess rates. In contrast, the IOM reports have provided almost no information on conditions that do occur at excess rates in Gulf War veterans. That is, the Gulf War and Health reports have not provided findings on possible associations between Gulf War illness or ALS and most Gulf War exposures. Nor do they provide findings on conditions like migraines and seizures, which preliminary information suggests may affect Gulf War veterans at excess rates, in relation to Gulf War exposures.
The legislation also directed that determinations be based on scientific evidence provided by both human and animal studies. Most studies that evaluate biological effects of hazardous exposures are done in animals, for ethical reasons. In recent years, a large number of animal studies have identified biological effects of Gulf War exposures and combinations of exposures that were previously unknown. Although animal research was sometimes described in the IOM reports, findings from animal studies were not considered in drawing conclusions about the evidence that Gulf War exposures were associated with health outcomes.
Unlike IOM's earlier Agent Orange reports, the standards used to determine levels of evidence for the Gulf War and Health reports expressly limited IOM panelists to consideration of results from human studies. The omission of animal studies was especially striking in IOM's updated report on sarin (nerve gas for which the antidote was given to U.S. troops), which had been requested by the Secretary of Veterans Affairs in 2003 specifically because of new research in animals that demonstrated adverse effects of low-level sarin exposure.
… The hundreds of findings provided in the IOM reports are largely inconclusive, indicating that there is insufficient evidence to determine if the diseases considered are associated with the exposures considered, based on the types of studies considered. The specific information included in the Gulf War and Health reports is also problematic, in that it appears to reflect a process of reporting selected results from subgroups of studies, rather than integrating and analyzing results from all available research. This is a pervasive problem.
… In short, IOM's Gulf War and Health series of reports have been skewed and limited by a restrictive approach to the scientific tasks mandated by Congress, an approach directed by VA in commissioning the reports. These limitations are most notably reflected in the selective types of information reviewed and the lack of in-depth analysis of the research literature and scientific questions associated with the health of Gulf War veterans.
There is a fundamental disconnect between the Congressional directive to VA and VA's charge to IOM for reviewing evidence on Gulf War exposures and their association with illnesses affecting Gulf War veterans. The reports have particularly fallen short in advancing understanding of associations between Gulf War exposures and Gulf War illness, the most prominent health issue affecting Gulf War veterans.
"This set-up, of course, will be familiar to Age of Autism readers knowledgeable about the CDC-mandated-and-manipulated IOM study of autism and vaccines, which pulled every kind of punch -- from hurrying up the report to avoid looking at new studies, to ignoring or denigrating studies like the hair-mercury analysis and the violent reaction to thimerosal in mice bred to have autoimmune problems, to overweighting slipshod epidemiological studies that even the IOM acknowledged could fail to identify a susceptible subset of children.
Bottom line: The VA-IOM debacle is an analogous case study to the IOM-CDC cover-up, with similar consequences -- lack of understanding of what really caused Gulf War Syndrome; lack of understanding of what really caused the autism epidemic. At a deeper level, the study suggests a culture in which "science" is just another political tool to silence criticism and prevent the truth from emerging. In Patrick Fitzgerald's memorable phrase in the Scooter Libby trial, the IOM appears to have become a mechanism for "kicking sand in the umpire's face.
"This connection was not lost on Steve Robinson, one of America's leading veterans advocates, who was instrumental in exposing the Bush Administration's shabby treatment of returning Iraq and Afghanistan veterans."
It's the three-card monte game they use to have a pre-determined outcome," Robinson told me. And it's no mere game -- at stake are treatment and compensation for, in this case, hundreds of thousands of Gulf War vets whose lives have been damaged by their decision to serve their country."How do we break the code of how corrupt it is to manipulate science this way, not just for vets but for autism and other issues?" asked Robinson, who has been informally working with the Obama transition team on veterans' issues.
He said Obama "is not going to get the ground truth from these people" in any of the areas where the science has been corrupted. "What does he inherit? A politicized federal government [science program] that is defunct and corrupt." The problem is most acute four or five levels down from the top, where the actual manipulation occurs, he said. Those are the people who need to come clean.
The Gulf War review panel basically called for a mulligan on the shoddy VA/IOM collaboration -- recommending that the VA ask the IOM to redo all its studies and that the VA office involved in the previous studies, the Office of Public Health and Environmental Hazards, be removed from all participation in the new effort.Here's an idea, one that's been circulating in the autism community for some time: Redo the IOM studies on autism and vaccines and remove the CDC, the U.S. Public Health Service and their pharma-flacking cronies from all oversight and responsibility.
Maybe the debacle at the VA will encourage the Obama Administration to take another look at the autism-vaccine "science" produced by the CDC and stamped "approved" by the IOM. A number of autism advocates worked hard for years to get the Bush administration to reconsider the Immunization Safety Review findings on autism. They made modest progress: the IOM sponsored a "Workshop on Autism and the Environment" last year.
Age of Autism Editor-at-Large Mark Blaxill was a member of the Planning Committee for that workshop. "The workshop was a small step in a better direction," says Blaxill, "but even getting that far was a huge struggle. And in no way whatsoever did it undo the damage done by the 2004 report. We need to see some intellectual courage from our scientific leadership. So far, all we've seen is systemic cowardice and a complete perversion of the scientific process. In the meantime, families are suffering and no one is doing anything about it."
A final note -- while the IOM may claim it was just doing its job as mandated by the VA, that's not good enough, not for an institution that is part of the National Academies, which calls itself "Advisers to the Nation on Science, Engineering and Health." IOM could just as easily have read the Congressional mandate and told the VA that its request was not in accordance with the law -- in common parlance, illegal. In fact, why didn't they stand up for good science?
Was the contract too enticing? Yet the IOM says it advises "the nation."
The nation is not the VA -- the nation is veterans. The nation is not the CDC -- it's families and individuals coping with an autism epidemic. And the nation is certainly not the federal government -- the nation is the people who elected that government to protect and defend them; it's you and me. And we, the people, keep getting royally screwed.--
Dan Olmsted is Editor of Age of Autism.
Sunday, November 16, 2008
Busy Parent Workout from GrecoRomanWellness' Ray Salomone!
Hi, friends. I ran this post over at www.ageofautism.com last week. I think we can all benefit from Ray's instruction! Enjoy.
Managing Editor's Note: I think you'll like our new contributor Ray Salomone, personal trainer in NYC and owner of Greco Roman Wellness. He and I met via the Denis Leary debacle. Ray was born with a rare birth defect that affected his chest muscle and struggled throughout childhood. He has a soft spot on his "hard body" for kids with autism, a result of an experience of his own.
I asked Ray if he'd put together a fitness routine for us autism Moms and Dads that's fast and effective. It's below. We need to stay strong and healthy for our kids and to manage our kids. Little boys and girls don't stay little forever. My Mia is as strong as an ox, albeit a beautiful ox. Thank you, Ray. KS
By Ray Salomone
You may have heard about my internet rumble with Denis Leary over the stupid comments he made about autism. "Trust me, I know how the game works. He has a book coming out so he needs to be compelling and provocative. But this is disgusting. FULL DISCLOUSRE: I have a book coming out also. I’ve called and emailed his agent and publicist. I imagine a No comment is forthcoming So I’ll make a comment: Denis Leary is a piece of shit." Click
HERE to read the entire blog entry.
He never showed, but two of his buddies from South Boston said they were on their way to NYC. They never showed either.
I know that so many of you barely have a minute to yourself and that exercise, in many cases, is relegated to the back burner. Here is a short, but very intense program that you can do at home in only ten minutes without any weights or other equipment.
Start by doing two minutes of basic stretching to loosen up the major muscles groups.
Once you feel the blood pumping and the oxygen flowing, follow this routine and do it as many times as your schedule permits to a max of five rotations.
THE POWER WAKE UP ROUTINE
Jumping Jacks: 10
Push Ups: 5, 10 or 15, depending on your strength
Leg Raises: 10 (Lying on floor, hands supporting your back, raise your legs together to 90 degrees.)
Repeat this if time allows. Once you build up the endurance to go around 5 times, this workout should take only 10 minutes. It’s a great way to strengthen and tone the entire body.
Email me with any questions through my website. You and your children are true WARRIORS AND GODDESSES!
The Wellness Crusader
Saturday, November 15, 2008
My writer friends, please comment freely, nastily, verily, come on! Oh WHERE is MISS SNARK??????
From Huffpo: The book, called "Joe the Plumber -- Fighting for the American Dream," is to be released by a group called PearlGate Publishing and other small publishing houses.
"I am not going to a conglomerate that way we actually can get the economy jump started. Like there is five publishing companies in Michigan. There's a couple down in Texas. They are small ones that can handle like 10 or 15,000 copies. I can go to a big one that could handle a million or two. But they don't need the help. They are already rich. So that's spreading the wealth to me," he said.
Thursday, November 13, 2008
An American man who suffered from AIDS appears to have been cured of the disease 20 months after receiving a targeted bone marrow transplant normally used to fight leukemia, his doctors said.
While researchers — and the doctors themselves — caution that the case might be no more than a fluke, others say it may inspire a greater interest in gene therapy to fight the disease that claims 2 million lives each year. The virus has infected 33 million people worldwide.
Wednesday, November 12, 2008
Tuesday, November 11, 2008
Monday, November 10, 2008
Thursday, November 06, 2008
I have no love lost for Sarah Palin. None. Nada. Zip. That said, I don't think the national media or the McCain Campaign should destroy her now that they have tanked. McCain has no one to blame but himself and that tall glass of Kool Aid he drank before choosing her.
I do think she was pulled up from obscurity onto the McCain ticket because she did not abort her special needs son to appease the furthest right hand reaches of the Republican party. Palin was "pretty pretty proof" that McCain was pro-life. I think McCain used her horribly..... And that's not right.
That's said, Jiminy Cricket, look at Fox News (Fox News!) rip her apart. She didn't know what countries make up NAFTA. (Hint, it's N. America. There are only 3 countries.) She didn't know Africa is a continent and not a country. And Fox says, "It was put off the record until after the election." WHAT??? Didn't voters deserve to know how ignorant she was BEFORE voting?
Let's face it - the woman attended 5 colleges in order to get a degree. She never claimed to be Mensa material. Was she even vetted?? Not all of us can hop into a good college and remain there. At least she got a degree.
The party of family values and education chose a woman with at least one child who does not have a high school diploma, and who is marrying (I'm waiting for the announcement in Guns and Ammo's nuptuals page) a boy who also does not have a high school diploma. (Does the son in Iraq have his diploma?) And yes, kids get pregnant. I realize that and I don't have any issue with the underaged pregnant daughter. But really, isn't the hypocrisy stifling?
She is who she is. And Alaska chose her as their Governor. Fine. But McCAIN chose her to be next in line for the Presidency. What does that say about him? Nothing good, I fear. He put pandering to a slim voter bloc over the country's best interest. It's hard to deny that.
McCain also used her to seduce the disability community, including the autism community saying she knew more about autism than anyone he knew. That's bullshit. McCain is actually very up to date on autism and was a strong advocate for our kids. He was the better candidate for the pure autism subject, no doubt. But Palin? Let me tell you this, six months into Mia's diagnosis, I was no expert. And her sister has a 13 year old with autism. Fine. Go call any of my girls' aunts and uncles and ask them how much they know about autism. Go ahead. You can Google Palin's sister's name with the word "autism." Nothing comes up prior to Palin's nomination. She was dragged into the spotlight as the poster Mom for autism. Google my name and autism. I can think of fifty names of Moms in the autism community, on all sides of the debate, who will come up in Google searches as having had a meaningful impact on the community. Even the ones I disagree with on everything. Again, it was a shell game. And that poor woman's sister was used.
Then there's this whole shopping debacle. Sure, she might live a simple lifestyle on her own turf. But what did she do when she got her hands on taxpayers/donors scratch? She raided Neiman Marcus. My God.....
Here's the Fox Clip.
Wednesday, November 05, 2008
Tuesday, November 04, 2008
ABC News has created an online slide show called "Voices and Views" featuring six families/people dealing with autism. In addition to "The Stalingo's, as we're known telemarketers from coast to coast, you'll see the family of Elias Tembenis, the young boy who passed away from his seizure disorder, my friend the writer Susan Senator and the Brown Family of Texas, with their son, Preston who has dropped his autism diagnosis. By coincidence, there's also Jason Ross, a man with Asperger's with whom I spoke at the JCC Manhattan last Fall. You can read his blog Drive Mom Crazy. Isnt' that the best name for a blog?
The photos serves as proof that I do not burst into flames upon entering a Catholic Church. ;)
Click HERE. Each story is about 2 minutes long.
Monday, November 03, 2008
Think about how many men and women have died for the right for you and me to wake up tomorrow, take a shower in clean water, choose food from our own cupboard, get into a car with a tank full of gas, drive to a polling center, saunter in without fear, show an ID, smile at an elderly lady who rifles through the voter rolls with the expertise of a marksman, finds our street address and name faster than a Google search can find Lindsay Lohan, walk into the booth, close the curtain and choose the direction for this country that soothes our heart, calms our stomach and maybe energizes our soul? Then walk back to our car, unmolested by anyone who would demand to know our vote, and off to HERE where you can get a free cup of coffee.
VOTE! McCain/Palin, Obama/Biden, Ron Paul or any other candidate you desire. We're making history! We'll have a woman as VP for the first time or a man who is not just African America, but the very melting pot that makes our nation the envy of the world.
I'm very proud to be an American. I'm voting. Are you?