We always set the table early. Do you?
Wednesday, December 19, 2012
Here at Age of Autism, we have been sharing with our readers the realities of the increasing numbers of children being diagnosed with an Autism Spectrum Disorder. With that comes many topics, including vaccine injury and regression, school issues, adult housing and also various treatments. I have a daughter diagnosed with severe Autism and recently, an autoimmune disorder. Megan regressed in health and skills after vaccinations. With the continuing surreal killings in public settings over the years - schools, college campuses, malls and even a movie theater, the media has had a history of attempting to link some of these cases to Autism or Aspergers. You can read our recent statement Age of Autism Responds to Newtown Tragedy as this point is important: " Age of Autism mourns the deaths of all innocent victims of this awful crime and offers its deepest condolences to their families. Additionally, we are deeply disturbed by the association of the perpetrator of this awful crime by various media outlets to a vulnerable community - the autism community - with rumors that he was on the autism spectrum. Regardless of whether or not the shooter truly is on the autism spectrum, we wish to make it clear that autism spectrum disorders (ASDs) are in no way associated with criminal violence."
It is important then to look at reality and root causes because without them, it can be hard to find a solution. I would like to share some important data about these tragedies since we are all in the midst of a recent, gut-wrenching inciden,t but to do so, we have to go back in time, to look at patterns, something we think is important here on AoA.
Thursday, November 29, 2012
By Dan Olmsted
After attending Wednesday’s congressional briefing on the latest autism statistics, I found myself with three questions, despite having asked several at the briefing. They are variations on the same theme, and not exactly new, but seem more pressing after more than an hour of listening: Why is the Centers for Disease Control and Prevention still in charge of monitoring and explaining the rise in autism? Why are the CDC and Autism Speaks cozying up to each other in such a public way at this particular moment? And why was the Congressional host heaping praise on the agency when it covered up the first signs of the epidemic -- and in his home district in New Jersey, of all places?
The event was co-sponsored by U.S. Reps. Chris Smith (R-NJ) and Mike Doyle (D-PA) and billed as “a Congressional Briefing on the Centers for Disease Control's recent announcement that autism now affects 1 in 88 American children.”
Rep. Smith began the proceedings, which drew probably 30 people to a room in the Rayburn House Office Building. Congressmen often try to make news at these kind of events, and before he started speaking an aide passed out a statement by Smith headlined, “Global Autism: ‘A Developmental Disability Pandemic’ – 67 Million People Affected According to Autism Speaks.” Then I realized the statement was from May 31, 2011. Nothing new to say, I guess.
Smith began by describing the CDC’s Brick Township study, which started after a parent reached out to the congressman in 1997 (he’s been around for 16 terms, as he pointed out). The parent was concerned about “an apparent prevalence spike” in autism. The CDC investigated, Smith said, and “did an expert study that was extraordinary … and all of a sudden it became clear that it wasn’t just Brick. It seemed as if there was some game changer somewhere in the population causing this huge new increase in autism.”
Well, not exactly. In fact, not at all. The CDC did find a rate of 1 in 150 children in Brick Township – the highest ever reported anywhere in the world to that point – but said no conclusions could be drawn from the data about whether there was an actual increase. (That refrain has become familiar, repeated time and again by the CDC at Wednesday’s briefing. Some things never change.)
In our book, The Age of Autism – Mercury, Medicine, and a Man-made Epidemic, Mark Blaxill and I took a look at the actual data the CDC used in its Brick Township study, which the group SafeMinds had obtained from the CDC. In fact, the autism rate in Brick Township was actually zero in 1989, the start of the study period. Not one kid had autism.
As we wrote, “Once you have the real trend data, you can figure out how hard the CDC had to work in order to report a result that said there was no trend. … If this wasn’t a cover-up, it’s hard to think of a polite synonym.”
Saturday, November 24, 2012
By Dan Olmsted
I try not to comment on the choices and difficulties faced by families dealing with autism -- mainly, because mine is not one. But after nearly a decade (yes, I first edited an investigation of the CDC and vaccine conflicts in 2003), I will venture to say this: The holidays are not always "the most wonderful time of the year" promised in song, advertisements and cultural come-on of all kinds.
There are multiple reasons for this, I think, including the simple inability to gather the way many would wish, due to logistics and occasionally resistance, implied or fully expressed, from other family members. And it can be a bit hard to identify exactly what it is one ought -- ought, never a good word -- to be thankful for. But there's more to it than that, as witnessed in this e-mail exchange I was part of earlier this week, about a child who "ages out" this year right between Thanksgiving and Christmas:
"I'm rather a wreck over it -- haven't brought her paperwork from probate court to town hall. I just haven't had the heart or courage. It has cast a pall over the entire holiday season. -- so I'm just looking to January to start the year and do the same stuff all over again -- I'm pretty tired right now, and you know how that goes."
Well, I don't know how that goes, personally. Cheap, teary empathy is already too much in vogue. To the extent that I have any insight at all, it mostly comes from talking to, visiting, staying with many families over the years and reading their accounts right here, on AOA. But the other person on this e-mail had plenty of experience.
"We are at a bumpy road and really have been for a while," said this mom, whose daughter is about the same age. "It is so hard, all of it, and I wonder how we do it."
Thursday, November 22, 2012
Turkey about to come out if the oven. How is my cook top this clean? Where are the side dishes? No I did not buy them premade. Vowels in name remember? The pans are all cleaned and put away. What is my secret? Stay tuned." Here's the answer:
We might think we have it "easy" in 2012 - so many conveniences. But 1969 is where it's at Chez Stag today, Thanksgiving. (Happy TG, BTW.) I made all of my side dishes early this afternoon. And then I took them and placed them on my Salton HotTray from the mid 1960s - a purchase I gleefully made this summer in the Cerebral Palsy Thrift shop where my kids go to speech therapy. For about $25 I think. $125 on ebay - suckers!
In other news, my children might not be my own. They will NOT drink champagne! I cracked open a bottle of bubbly for dinner and Bella pushed a taste away after half a sip, Gianna ran away and Mia turned away. Our Sound of Music Moment ends in a flop. More for Mom - who was drinking the hard stuff in 6th grade - but you know that if you've read my book.
So - Happy Thanksgiving everyone. Here's to hot food and lots of it. Off to feed my Rat Pack.
Thursday, November 01, 2012
Friday, October 19, 2012
Three sentences in and I too am on my way home. It's not Halloween without Bradbury. This story is my favorite. Little did I know as an enthralled high school student that I would have three of my own Timothy's. Like Cecy lying in bed but traveling to another time, Bradbury is my own time machine. As quiet and safe as Uncle Einar's resting box.
Wednesday, October 17, 2012
Friday, October 05, 2012
Earlier this week I ran a post on HuffPo called Autism Sucks and Then We Die. It was a general audience version of a post I'd run here at AofA - trying to call attention to the ever advancing manmade autism epidemic and the real fears families face as we, the parents, grow older. And ultimately die. I try to engage commenters at HuffPo by responding to their comments, both those that are favorable about the post and me and those that take me to task. I can learn from everyone, and in particular, I have appreciated learning from people who themselves are on the spectrum. That might come as a surprise to some - it shouldn't. My writing style is pretty much my personality - open to conversation, sociable and ready to have a heart to heart or a head to head talk.
In particular, some commenters who said they were on the spectrum took my headline "Autism Sucks and Then We Die" to mean that I thought they themselves sucked. One went so far as to define himself not as autistic, but as autism itself. "I AM AUTISM." I promptly and politely disagreed. Autism is a medical diagnosis, not a option on the US Census. I was quick to say that I did not say that people with autism suck. And I told them of the old song by a Boston Band called "The Fools" from which I took the headline, having grown up in Beantown and heard the song many times:
Today in my Google alert there was a story that gave me a familiar pit in my stomach. Autistic Boy, 11, Dies After Hit By SUV. Another child whose life was cut short by his autism. Sure, some folks will say, "kids are struck and killed by cars every day, Kim." Yes. And kids drown every day too. But take a look at the headlines and tally up how many have the word autism in them. It's gotten to a point where when I hear "drowned" my very first thought is "Did the poor child have autism?" From the Houston article:
The boy has special needs and was in the care of his father when he wandered away as the father was doing laundry, said Estella Olguin, spokeswoman for state Child Protective Services.
Houston police officers said that Desmond Thomas, 11, who had autism, was with his parents at a nearby home, and he left the house by himself as his dad folded laundry about 7:30 p.m.
Another story quotes his Mom, "He was very impulsive and would jet as soon as he got a thought in his head," said Tina Thomas, Desmond's mother. "We never knew what he was thinking."
"He was being watched," Olguin said, "but he just wandered away. It's tragic." I'd write a bit more, but I think that last sentence sums up what I was trying to say on HuffPo. It's tragic. And I have to go update a blog called Lives Lost to Autism - something I do all too often.
RIP Desmond, and our hearts go out to his family.
Thursday, September 20, 2012
Yesterday, I had the honor of speaking at the MetroCare Services Meal for the Minds Luncheon in Dallas, Texas. MetroCare services 60K consumers, children with disabilities whose families are lower income, throughout Dallas County. God's work, I call it. The luncheon was at the magnificent Belo Mansion and featured an Edible Auction of the most beautiful desserts. How I longed to bring a cake and a fork onto my flight home! Before the event I was on Good Morning Texas on WFAA ABC. Here's the interview.
Saturday, July 14, 2012
Miss G is now "Sweet 16!" We celebrate on her big day earlier this week, but Dad was traveling at the Gift Show in Atlanta (where he spent her 1st, 2nd, 3rd..... bdays!) so we saved the cake for tonight.
(Weird, I flipped the photo in my save file but it shows here sideways. We are not sideways. Sorry for the head tilt.)
Saturday, June 16, 2012
Boys, Men, Howard Stern and Father's DayHi, friends - happy summer! I wrote this for HuffPo - please pop over there to comment?
On Thursday night I attended a party at Magnolia Bakery on the Upper West Side in Manhattan. The hostess was a radio personality named Lisa G. who is also the newswoman on The Howard Stern Show on Sirius Satellite radio. If you've read my book All I Can Handle I'm No Mother Teresa you know I am a huge Howard Stern fan and have been for almost 20 years. Sure, it's incongruous for a buttoned down, Lilly Pulitzer wearing, Fairfield County CT autism Mom to throw out a "Bababooey" as easily as "Honey, where's the plunger and the snake!?" But I love to laugh, am a fan of the irreverent and Howard Stern has gotten me through some rough days and nights during this autism journey. When someone yells, "Does anyone remember laughter?" I say "YES! It's on Howard 100!"
While at the party, which featured not only the delicious cupcakes for which Magnolia is famous, but an assortment of home baked treats by both Lisa G. and Stern Show SuperFan extraordinaire Mariann From Brooklyn, a beautiful woman (that's she in the photo with me) who is also Howard Stern's biggest fan bar none, I struck up a conversation with a 31-year-old woman I'll call Ayesha. The topic of my children came up, and we talked about a friend of hers who has a child on the spectrum and whose husband pooped the bed in terms of caring for him. Or her.
And then she asked me a question that made me put down my cream cheese chocolate chip cookie bar (and that ain't easy for me to do) and think hard. It went something like this: "What traits should I look for in a man I can consider as husband and father of my children to make sure that doesn't happen to me?"
Well color me Cookie Puss and call me Debbie the Pet Lady. I didn't have an immediate answer. It wasn't the sugar haze I was reveling in either that made me think hard. But I thought of my own husband of 20 years Mark, and how he has stood by me and our three beautiful daughters, Mia (17), Gianna (15) and Bella (11) through thick, thin and thin enough for an electron microscope. I shared this thought with her.
Beside the basic kindness and generosity that you'd look for in a husband and the more superficial attraction, it's impossible to know who will rise and who will sink like a stone when adversity moves in for a long stay. There are no guarantees, which is why traditional wedding vows cover all the bases, good and bad, though there isn't bride alive who pays attention to worse, poorer or sicker on her wedding day. I sure didn't.
This weekend is Father's Day. I'd like to thank my husband for acting as our family anchor even while he keeps us afloat during tough times. It's not easy to watch your children suffer and struggle. Not a father watching his son -- or a man whose every instinct is to protect his daughters.
Thank you to all the Dads who stand by their families. I wish I had better advice for Ayesha. I got lucky. I hope she does too. Did you?
Sunday, May 06, 2012
Thursday, April 19, 2012
April is not OK
Today is the 17th anniversary of the bombing in Oklahoma City, OK. Swing by Fox News if you're so inclined. Nothing on the home page. Pop over to MSNBC. Nothing on the home page.
How is it that the nation has simply "gotten over" the horrific day when a deranged man who looked a lot like many of us white Americans murdered 168 men, women and children? From the Memorial website: On the morning of April 19, 1995, Timothy McVeigh parked a rental truck with explosives in front of the Alfred P. Murrah Federal Building and at 9:02am, a massive explosion occurred which sheared the entire north side of the building, killing 168 people.
April is also "Autism Awareness Month," although our kids are also forgotten in so many ways. Our government has sat by and calculated how to hide the unfolding catastrophe that is swallowing families as greedily as the brick and mortar crushed so many in Oklahoma on that terrible day. Autism rates have skyrocketed from 1 in 250 just a few years ago to at least 1 in 88 today. 1 in 54 boys. If you are a woman of childbearing years you should be quaking in your boots. Autism takes the entire family like a bomb. Nothing is ever the same even where there is joy and happiness. NOTHING is ever the same.
There are Tim McVeighs behind this epidemic. They hide in high places. We've elected them. They work in the media. They create laws and medical edicts you must follow. They set policy. They know. They loaded the truck and haven't taken their foot off the gas pedal yet.
I visited the Oklahoma City memorial several years ago courtesy of autism. We went to a Chiropractic clinic there, after mainstream medicine had told me to take my kids home, love them, watch them seize and suffer and then prepare for a group home.
It is a simple, moving memorial of elegant chairs. I'd like to sit down and rest. Not this month. Not ever.
Monday, April 02, 2012
Kim Stagliano is Managing Editor of Age of Autism. Her new novel, House of Cards; A Kat Cavicchio romantic suspense is on SALE for $.99 as an ebook and is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book.
Light it Up TRUE.
By Kim Stagliano
Today is April 2nd. Some are celebrating Autism Awareness Day. I am not. To me, today is like Good Friday and Yom Kippur - somber days of reflection.
Above is a photo of my daughter's leg. She has autism. A week ago, I put her into the bathtub, and while undressing her - was visually assaulted by these two angry red scratches - parallel, as you can see.
I touched them. She winced. She did not say to me, "Mama, I hurt myself doing such and such." I held back tears and examined her wounds. Did she scrape against something sharp under the kitchen table? I've been feeling under surfaces ever since, trying to find the nails or screws that bit into her tender flesh.
I have no idea how my child was so badly hurt. She was at home all day. She can not speak to tell me. My daughter has autism.
Take a look at her leg. The scratches. The black.
Saturday, January 21, 2012
My colleague at Age of Autism Dan Olmsted is an investigative journalist. He was with USA Today when they launched and wrote the "Age of Autism" series for UPI. He and his writing partner Mark Benjamin broke the story of Lariam, a malaria drug given to US soldiers, causing neurological damage that lead to murder suicides. Here he takes on the poor girls of Leroy, New York, who have suffered tics and Tourette's like syndrome - and have been told by neurologists that they are "hysterical" - and have a Conversion Disorder. Which is doc talk for "it's all in your head."
Health experts say they’ve eliminated every possible environmental and infectious cause for the “tics” afflicting 12 girls at LeRoy Junior/Senior High School in New York state. They’ve scoured the building for mold and carbon monoxide (nothing, they say), considered illnesses that might cause the symptom (none), even checked on vaccinations (not all girls had the same shot).
However thorough that workup may have been, it seems to have stopped at the schoolhouse Exit sign. Except for checking a log of pesticide spraying, there is no evidence they considered toxins in the schoolyard or on playing fields. Yet the symptoms occurred during mild weather when students would have been outside, and the school grounds are surrounded by intensively farmed land from which chemicals could conceivably have seeped or drifted.
The school is required to keep annual pesticide logs that were reviewed by a consulting firm looking into environmental factors, and therefore pesticides were ruled out. As best I can determine, that’s as far as it went.
That may not be far enough, given that parents and some of the students involved don’t accept the psychogenic diagnosis they have been given, and that a number of Web commentators familiar with the school have raised concerns about the grounds and how the relatively new building is sited.
Public health officials remain adamant that the case is closed.
"The LeRoy school is safe,” Jeffrey Hammond, a spokesman for the state Department of Health, replied Friday after I raised the issue in a telephone call. “The environment or an infection is not the cause of the students’ tics. There are many causes of tics-like symptoms. Stress can often worsen tic-like symptoms.
“All of the affected students have been evaluated and some have shown signs of improvement. Vaccines (Gardasil) have been ruled out."
While the department has been careful for privacy reasons to avoid naming the illness, a doctor treating the girls has now gone public, with their permission, by calling it “conversion disorder.” Known less gingerly as mass hysteria, the diagnosis is rooted in 19th century Freudian psychology: Stress or trauma is subconsciously transformed into physical symptoms that can occur in several people at the same time.
In part because the LeRoy diagnosis took months to emerge, and in part because many people – including parents and affected children – find conversion disorder a suspect explanation, multiple theories continue to arise. Those include concerns about the school building and grounds, expressed in online comments:
-- An environmental study “would be the first logical step, knowing that the school was built in a swamp and that a number of classrooms were underwater the first year as well as the gym you would think it would be the first thing the school would address- even if only to disprove it.”
-- “Girls started feeling sick in September, sounds like pesticide spraying At the end of summer before the fall to protect late crops.” (The girls’ symptoms began as early as September 10, according to published accounts.)
-- “Have the doctors considered that the condition may be related to the school's having been built on swampy land? Water in the building continues to be a problem. A second story that should be pursued by the press and others is why this new school was built and why it was built on this particular piece of land.”
A quick look look at Google Earth (click the plus sign to see the school and grounds in detail) shows the setting. The high school’s Web site has an aerial photo that appears to show a large pool of standing water close to the school, with a rivulet coming even closer; it appears to be dry in the Google photo.
Farming, despite its idyllic image in American lore, is a highly chemical-intensive practice, and Western New York is no exception. For that and other reasons, it can be dangerous. In October, a few miles west of LeRoy in Genesee County, two people became ill when a pesticide being applied to a potato field wafted in their direction. The substance was a toxic fumigant being injected into the soil in preparation for planting this year’s crop. Officials said humidity might have helped spread it.
Obviously, that incident had nothing to do with the LeRoy illnesses, but it does give a sense of time and place missing in accounts of the area, as well as suggesting weather is an unpredictable vector.
But in such a scenario, why would only girls be affected? That's unclear, but there are a number of possibilities that environmental triggers could help explain. For instance, in some cases of mass illness in high schools, the victims were male football players and the problems were traced to toxins where they played. Being male was not a susceptibility factor, but it pointed to the exposure nonetheless. (In another case, marching band members suffered the same problem for the same reason.)
It is possible that more has been done to consider toxins outside the school building, but if so nothing has been done to communicate it to the national media.
In fact, opportunities continue to be missed. The two consultant reports and the school district’s official statement make no mention of looking for anything amiss outside the building itself ,except to note the water supply comes from neighboring Monroe County's public system. "No history of building water damage or site contamination was found," it states.
Neither the district nor the consulting firm it hired would talk to me Friday when I told them I was seeking information on whether risks outside the school building had been investigated.
Dan Olmsted is Editor of Age of Autism and co-author, with Mark Blaxill, of “The Age of Autism – Mercury, Medicine, and a Man-made Epidemic,” published by Thomas Dunne Books.
Sunday, January 15, 2012
Saturday, January 14, 2012
My gift to you - FREE download of my funny, fast paced romantic suspense House of Cards. Don't forget the Kindle app is available for every device except your toasters and Nooks! Scroll down my blog for a free chapter too!
Bounty Hunter Stephanie Plum would think her life is easy compared to Kat Cavicchio's. When a car crash with a New England Patriot lands her sister in the hospital, Kat has to move in with her brother-in-law to take care of her young niece and nephew – with autism.
The windfall accident settlement should turn around her financial woes and help the kids too, until the football player kicks his last field goal in a gruesome murder that lands Kat's entire family in the cross hairs of a drug dealer who thinks she is hiding something from the football player that he wants. Can a sexy State Trooper throw a Hail Mary pass and save her life before the clock runs out on her life?
Q&A with author of House of Cards, Kim Stagliano
Question: Which books or movies influenced you in writing House of Cards?
KS: My life as a Mom of three girls with autism is pretty stressful (understatement of the year there) and so I read and watch movies for entertainment and laughter. I'm a big fan of the Farrelly Brothers comedies and love offbeat, irreverent humor. I created Kat Cavicchio in the hopes that readers will want to meet her again and again, like Janet Evanovich's Stephanie Plum, Rita Mae Brown's Harry Haristeen and Meg Cabot's Heather Wells.
Q: You wrote a Memoir called All I Can Handle I'm No Mother Teresa and you blog and write for magazines. Why did you decide to write fiction?
KS: So I can kill people! OK, maybe not. Fiction gave me the freedom to have a character say things that would sound dreadful coming from me, a real Mom. It's fun to create a world where you control the events - good and bad - and write the ending you want. If only life were so easy.
Q: Is House of Cards an "autism book?"
No more than Jodi Picoult's House Rules would be called an "Asperger's book." House of Cards is about the growth of Kat Cavicchio and the arc of her Italian American family's life. Sophie and Dom are characters whose autism shapes them - they help Kat learn who she is and how to grow up.
Q: Is House of Cards "your" story?
No. It's definitely fiction. Kat is flakier than I am (though my husband might disagree). She is terrified of responsibility and hasn't found herself even at 30-something. I'm much more uptight and buttoned down than Kat. And I prefer dark haired men like my husband to her blond State Trooper. I drew from my experiences with my girls, Mia (17), Gianna (15) and Bella (11), but Kat's story is hers alone.
Q: You were in advertising and marketing, then had the girls and stopped working to care for them after you learned they had autism. What made you decide to start writing?
KS: My husband Mark was out of work, writing gave me a chance to vent my frustrations on paper and was more socially acceptable than tippling sherry at 9am. I learned I have a "voice" that welcomes readers, makes them laugh, and entertains.
Q: Where do you find inspiration?
KS: Friends, family, the news and favorite authors who've paved the road far ahead of me. As an author and Managing Editor of www.AgeofAutism.com, I've had the privilege of meeting parents all over the world, in person and through cyberspace. We share stories of the vagaries of raising kids on the spectrum; the joy, the love, the frustration, our hopes and dreams and even our fears. I incorporated those emotions into House of Cards.
Q: Anything you'd like readers to know about you?
KS: I drink far too much coffee, love kickboxing and am a prolific baker. I'm addicted to FaceBook and Twitter. I'm scared to death of what the future holds for my daughters - but keep moving forward. I'd love to have readers join me. And if you have a child on the spectrum, I'm always available to offer support at KimStagliano@gmail.com.
About the Author:
Kim Stagliano is author of All I Can Handle I'm No Mother Teresa. She blogs for Huffington Post, TodayMoms, writes for Autism File Magazine and other national publications. She lives in CT with her family.
Thursday, January 12, 2012
I've been working on my health since January of '11. I started kickboxing. First I went two times a week. Then three. Then, as I got to know the participants and Shihan who owns the dojo, four times week. So now I go up to six times a week - every class offered. I was eyeing the Karate classes.... But I was too chicken to sign up. In September Shihan placed a uniform in my hand "You try." (Italian accent.) I tried. I now take 3 Karate classes a week. So the exercise part of health is well covered.
Food: I'm a terrible eater. I don't love to eat to begin with - and after making so much food for the kids, I kind of don't care what I eat. At my yearly (millennial?) check up my blood work was excellent - except for low Vitamin D. I try remember to take my Trader Joe's D every day. I also started Coromega - to get fish oil. Damn if it doesn't taste good enough to remember every day. So far so good. I'm also taking a Dr. Mercola protein shake I make with berries and coconut water every day. Love it.
Looks like I'll be going back to Las Vegas in April with Mark. April in Paris! (The hotel.) Swimsuit weather will arrive early for me.
What are you doing for your health?