Tuesday, September 19, 2006

Who Cares About Autism?

I don't really know. I spent quite a bit of time looking for comparison charts and the most updated numbers. Nothing was apples to apples, so here is what I've discovered so far. We all know that other childhood diseases and disorders get far more funding than Autism. Again, I'm not saying that ASD is a disease. It's a disorder where children need services to maximize their potential and remedy the disabling aspects. It's a disorder that's getting minimal funding and attention compared to others. Not a good thing. I'm pissed!

Here is how we look compared to Cancer.

For example:
According to GAO and SEER of the National Cancer Institute, 1998:
12,400 children 20 and under have a childhood cancer.
2,500 died that year.
A newborn male has a 1 in 300 chance of developing a childhood cancer by age 20.
1 in 333 chance for a newborn female.
8,600 children were diagnosed with cancer and about 1,500 children died from the disease in 2001.

According to the CDC, 500 thousand children aged 0-21 have an ASD, but only 100 thousand are served under the IDEA. This doesn't included children without a diagnosis, or children that don't have services from their district.

Now here is how the funding looks compared to cancer:

According to the shiny new Combating Autism website, there will be 900 million for autism funding, whatever that means. Then we have AGRE from CAN, and of course NAAR, Generation Rescue, ASA, and a myriad of other organizations raising money out there. Private and government together, I wonder what that figure is. Anyone know?

I was unable to find a handy number for childhood cancer or pediatric aids. I'd appreciate any info/links. If I find something later, I'll post it.

Thursday, September 14, 2006

Non-PC play and Celebrating Each Day With Autism

It's ironic how inappropriate play becomes another kind of inappropriate play. I heard from a fellow recovered parent recently how he celebrated inappropriate activities, and how often it often looked like favoritism to his NT daughter.

He writes 'My daughter, now 17, gets it. She also lets me know that I let J. get away with lots of things that she could never have gotten away with. One day, J. wrote all over his bedroom wall with a marker. How can you yell at a kid for drawing after spending 2 years and many thousands of dollars trying to teach him how to hold a pencil? How much can you yell at him for playing hockey in the house when you spent years not knowing if he could ever play any sports?'What a fabulous example.

I could totally relate, and shared my examples:

I cheered Leo on when he made a gun out of Legos, or played swords with his friends, much to the disapproval of certain parents. He was finally interested in appropriate things and knew how to play and be social with his friends! Leo would run around pretending to be a power ranger and blow stuff up. Love it! I celebrate each time I see this. And I still get the chills when I compare Leo's art on the hallways of his elementary school - all from a child that needed the help of a rubber band to hold a marker.

I'm all about inappropriate play! Also, we have skateboards, a pull-up bar, soccer balls, and footballs in the house. Both my kids learned to ride bikes in the house (trust me it's not big, but long).

Thursday, September 07, 2006

Rice. Our Only Loyal Food Friend.

September 7, 2006

Flap Over Modified Rice Weighs on Food Importers

Claims by Groups of an Illegal Strain Spark EU Warning
September 7, 2006

BRUSSELS -- When commercial rice stored in Missouri and Arkansas turned up traces of an illegal biotech strain last month, Britain's largest food importer said it was looking for a new supplier.

Now, Associated British Foods PLC -- a food empire with sales of £5.6 billion ($10.6 billion) last year -- may have to change suppliers again, this time to replace some of the foods it buys from China.

Environmental groups Greenpeace and Friends of the Earth this week said they found an illegal genetically engineered strain in rice-based products sold in Asian supermarkets in the U.K., France and Germany. European Union officials responded with strong language, telling food importers they could be sued if they failed to keep unauthorized foods out of Europe. The EU has yet to confirm the findings of Greenpeace and Friends of the Earth.

The rice scare underlines problems facing food companies and biotech firms world-wide. Many genetically modified strains are banned in Europe. But techniques for stopping biotech crops crossing into the food chain by accident are imperfect. Companies are struggling to find reliable suppliers and to avoid legal suits by testing their product lines.

"We'll comply with European food law as best we can," Associated British Foods spokesman Geoff Lancaster said. Hours after the environmental groups announced their findings, Mr. Lancaster's company started isolating and testing several goods it suspected of containing Chinese rice ingredients that might include the illegal strain.

Farmers, importers and biotech firms are beginning to feel the sting. The U.S. Agriculture Department said on Aug. 18 that Arkansas and Missouri commercial-rice stocks had turned up traces of Liberty Link rice, an experimental and unauthorized modified strain. After the announcement, September rice-futures prices on the Chicago Board of Trade sank 14% to $8.47 a hundredweight. Japan banned U.S. long-grain rice. American farmers say Europe's strict screening rules on all long-grain-rice imports from the U.S. are pinching profits.

Looking for compensation, U.S. farmers have filed at least three legal actions against German chemicals company Bayer AG, which owns the patent to Liberty Link rice. Such court cases can be costly: Swiss agrochemicals company Syngenta AG last year put aside about $50 million to fund tests of U.S. corn-gluten exports to the EU following the discovery that Syngenta accidentally had sold an unauthorized corn strain to farmers exporting to Europe.

At the same time, food importers may face costly legal challenges in Europe. The European Commission has written to governments reminding them to take a hard line against companies that allow biotech crops to be sold on their territory. While no suits yet have been filed, the commission believes companies "are not doing enough" to comply, according to EU spokesman Philip Tod.

But testing is expensive and difficult. Swiss food empire Nestlé AG says it spends a "significant part" of its $1.2 billion research-and-development budget on in-house safety testing.

The amount of the illegal Liberty Link strain found in Arkansas and Missouri was equivalent to six rice grains out of 10,000. Companies without in-house labs are competing for the services of a handful of European labs capable of testing such small quantities.

Large companies say they can follow their ingredients back to their source. But the Confederation of the Food and Drink Industries this week said importers were unsure which rice-based products, such as vermicelli, sauce mixes or rice starch, came from China. Several Chinese regions were found to be using an illegal biotech strain in 2004, and importers say the problem hasn't been rooted out.

"You have to look at the various forms that the rice takes. It takes time for our members to know exactly what rice starch or flour they are using," said Nathalie Lecoq, from the confederation's commercial department.

Environmentalists want to ban all Chinese rice goods or at least require countries farming with genetically engineered grains to label exports according to their biotech content. European experts meet again Monday to assess the biotech situation and may well discuss the question of Chinese rice goods.

Write to Juliane von Reppert-Bismarck at juliane.vonreppert@dowjones.com1

Burger King Joins McDonalds In Hell

I also read today that in NYC, 50% of children suffer from hunger and obesity.
I have no words. Just every emotion.

Burger King Sued Over
Broiled-Burger Health Risk

August 31, 2006 7:19 p.m.

WASHINGTON -- Burger King Holdings Inc. was sued in California Superior Court for allegedly failing to warn consumers its Triple Whopper and other flame-broiled burgers could contain a cancer-causing agent, the company said Thursday.
The July 24 lawsuit centers around polycyclic aromatic hydrocarbons, chemicals formed by incomplete burning of organic substances such as charbroiled burgers, Burger King Holdings said in its annual report to the Securities and Exchange Commission.
Under California law, these chemicals are listed as possible carcinogens or reproductive toxicants in humans, the filing said.
In the filing, Miami-based Burger King Holdings said if found liable it might have to pay penalties and injunctive relief. "It is not possible to ascertain with any degree of any confidence the amount of our financial exposure, if any," the company said.
The filing didn't provide the amount of damages sought. The suit is titled "Leeman v. Burger King Corp., et al."
Similar lawsuits were filed against Burger King Holdings, McDonald's and other companies in 2002 and 2005 for allegedly failing to warn consumers their french fries contained acrylamide, another toxic chemical.
Polycyclic aromatic hydrocarbons, or PAHs, have been linked to reproductive and other health problems in animals, according to the U.S. Department of Health and Human Services Agency for Toxic Substances and Disease Registry.
Some people who breathed or touched mixtures of PAHs and other chemicals for extended periods have developed cancer, the ATSDR Web site said.
Burger King also said in its annual report that it has prepaid an additional $50 million of term debt. This reduces the total outstanding debt balance to $948 million, the company said.
There are more than 11,100 Burger King restaurants in the U.S. and around the world. Company shares closed at $14.54 each on Thursday, up 23 cents.

Monday, September 04, 2006

Abe Lincoln, Discrimination, and a Dose of Perspective Taking

Over the long weekend, we took the kids to D.C. For me, it was my first time right along with Leo (turns 8 in Oct.)and Sydney (5). As a 41 year old, I was quite taken with it. The cleanliness and magnificance of The Air and Space Museum, the Capital, the National Zoo, and the areas around the White House. The shear number of priceless artifacts in the Air and Space. A piece of the moon? THe first space crafts? Incredible. How grand that Washington Monument is. I had a good time people watching and wondering what they were thinking. It certainly makes a good impression that all is good and all is equal. We can pretty much go anywhere and for free. I got caught up in observation. I felt proud. I felt sad. I felt nervous. So many emotions. I relished the experience and that I could share it with Leo, since he was just old enough to "get" the relevence and importance of our capital.

Really no thoughts about ASD had entered my mind until we hit the Lincoln Memorial. I had a wave of emotion come over me as I stepped into the building and began reading the wall that contains the The Gettysburg Address. He "got me at hello", the first paragraph that ends "and dedicated to the proposition that all men are created equal."

I saw African Americans taking pictures of themselves. I saw Arabs. I saw Indians. I saw everyone it seems. I wondered how their take on "freedom" differed from mine. I wondered what they thought of me and all the other Americans walking around that day. I began to cry silently and I couldn't stop for about a half hour. I thought about how far we've come to treating each other equally, and it was a nice reminder. But, then I wonder how far we'll be able to go. How much of discrimination is human nature? How much can we evolve?

I look over to see the elevator in a side room. I wonder if people in wheelchairs had to fight to get that thing installed. A right to see the memorial that discusses equality without someone having to carry them. The irony. My thoughts then went to Autism. I'm sure Abe wasn't thinking about our children, but his life, this speech made after battle, did have a positive impact on our quality of life. Then I thought how sad it was that special needs children still face discrimination, that no one still really gets ASD outside of ASD families and providers. And finally, my thoughts come to the cold fact that we have no real Autism Community - that discrimination, that factions, alive in 1863 are alive and kicking today. I am still dedicated, and I hope anyone reading this is too.

And on other topics - here are my favorite quotes from the kids:

1) "Mom, I know we're going to meet George Bush no matter what you say. And I promise I won't tell him you didn't vote for him. That would make him feel bad."
2) After approaching a long line for the Archives, Sydney says "Mom, do you REALLY want to wait in such a long line?" Of course, she said this because SHE didn't want to wait in the line. She said it really loud and clear, and a large number of people turned around when she said it. Leo looked at me, sighed, and said "Now I'm really embarrassed."
3) After riding 3 subway trains, we were walking toward the giant stairs. Sydney says loudly "Hey! We get to see the world again!"

4) On the long car ride home, I mentioned that I may drive them to school the next morning to give them some extra time. Sydney got very excited, she could do more "big girl" things like walk from the car inside. I explained that if the buses were still there, I'd have to drop her off at the lower parking lot, and they'd have to walk. She loved that idea, even MORE of a "big girl" activity. Leo said, "Trust me, you're not going to like it Syd, you have to walk up those long stairs, it's crowded, people get in your way. It's not fun."

5) Leo vehemently wanted a Ground Hog habitat (the zoo)for our rabbits. He fell head over heals in love with them.

6) Naturally, the "best" "most AWE-some" part of the trip was the Planetarium. He really got those basic concepts of the universe forming, etc. He was quite impressed, and he enjoyed the "relaxing" music.