Michael Savage's bosses at Talk Radio Network

Talk Radio Network
	541-664-8827 Don't expect much.  They have their phones turned off apparently.  :)

Helping HANDS for Autism Act

Our congressman Frank Wolf co-sponsored this bill.  I need to send another thank you note off to him...

Helping HANDS for Autism Act Introduced in the House
Thursday, June 19, 2008 
By: Carin Yavorcik

Bill provides for lifespan autism services and awareness

Members of the U.S. House of Representatives introduced a companion to the Helping HANDS for Autism Act this week.

The Helping HANDS for Autism Act (HR 6282) is a three-part legislative package designed to support families dealing with autism spectrum disorders, increase awareness among first responders and public safety officials and provide housing options and services for adults with autism. It was introduced by Reps. Kay Granger (R-TX), Jim McGovern (D-MA), Chris Smith (R-NJ), Mike Doyle (D-PA), Dan Burton (R-IN) and Ruben Hinojosa (D-TX). The bill is a companion to S 2950, introduced in the Senate last April.

An estimated 30 million people in the world have an autism spectrum disorder, 1.5 million in America alone. Every day in America, 60 families learn their child has autism. These families face challenges of care, support, education, financial hardship and medical and health care issues that make autism a national public health issue. Though there is no cure, autism is treatable and individuals with autism have tremendous potential.

“The Helping HANDS Act is an important step toward getting families the support they need today,” said Autism Society of America President and CEO Lee Grossman. “It provides for services from just after diagnosis through adulthood, is the most critical need today.”

What the Bill Does:

1. Creates a grant program to provide “autism navigator” services to help families navigate the web of services and care they need. Navigators will help guide families to current health, education, housing and social services that are often available to individuals on the autism spectrum. Too often, families feel overwhelmed after diagnosis and often lost as to where to turn for help. The program will help connect families to important treatment options soon after diagnosis, help families identify education options, and help coordinate individuals’ care and community support.


2. Provides for the development, demonstration and dissemination of a standard curriculum for the training of first responders (police, fire departments, emergency medical technicians and other volunteers) in assisting individuals with autism and other cognitive behavioral disabilities. It provides grants to states and local governments to support training of first responders. People with developmental disabilities, including autism, have up to seven times more contact with law enforcement officers than others, according to an article in the F.B.I. Law Enforcement Bulletin in April 2001. That is why training is so important. Something as simple as first responders turning off flashing lights and sirens on a police car could make the difference between a peaceful or chaotic encounter.


3. Creates a HUD task force comprised of appropriate national and state autism advocacy groups, community-based organizations and parents who are charged with developing a housing demonstration grant program for adults with autism. The goal of the grant program is to provide individualized housing and services to adults with autism spectrum disorders.

Sunday Session

Our therapist came today to continue to work on his outing behavior.  It took about eight minutes to get Jimmy into IHOP for breakfast.  A man even stopped to offer to help us - after the Red Lobster fiasco, I wanted to run and hug him just for asking.  As usual, Jimmy wanted to go to McDonalds.  When we got to our booth, he took his notebook and made pictures with the Golden Arches, a circle with a slash through it, and writing the word "No" underneath, to highlight the fact that we weren't at his preferred dining establishment.  We got him settled down and he ate pretty well.  

Next stop was Petsmart, a break he usually loves.  He walked through the store with his hands over his ears.  Not standard behavior with him - he has some degree of noise sensitivity, but it usually manifests itself in more extreme ways.  He was as engaged with the birds this this time, didn't want to see the fish, and looked only briefly at the cats in the adoption center.  

Target went fairly well.  No meltdowns.  He helped with the carts, even getting things out for checkout.  He spared us the drama of "Mom, you didn't buy my DVD of choice" separation anxiety.  Maybe he knew "Terminator 2" wasn't that great a film.  

Our Sunday community outing didn't go perfectly, but given how they have been lately, I will take today as pretty successful.

Amanda Peet's Feet

I like to look at the traffic that my site gets and where it's from.  I can also sometimes see how they searched to find me.  I came up for someone in Scandinavia looking for "amanda peet feet." 

Let's now process what someone would want with those.

Ick.

Michael Savage's Sponsors

Always deeply appreciate when people do the dirty work for me.  From this list, I am going to be contacting Prudential, with which we do business.  I can pull my accounts from there if I like.  And since FIOS isn't available at our new house and I don't want to go back to Comcast, that left Dish Network and DirecTV.  I guess Dish won't be getting my business.

Not that my little protest will accomplish anything, but at least I can feel like I did something.  

"Partial Client List of Advertisers on TRN Shows

Advertisers choose TRN Shows because our shows deliver return on 
investment while remaining economical. Our shows hosts support their 
sponsors and have loyal listeners that support the sponsors on their 
shows. Simply put, radio advertising on our shows works! Here's a 
partial list of our happy clients: 
ABC 
Acura 
American Express 
Ancestry.com 
Boca Java 
Bochringer 
Bosch 
Campbells 
Citrix 
Consolidated Resources 
Direct Buy 
Dish Network 
Ebay Motors 
Efax 
General Motors 
Gallo Wines 
Hoover 
Legal Zoom 
Marshalls 
Nautilus 
Nivea 
Outback Steakhouse 
Prudential 
Purina One 
Simon & Schuster 
Staples 
Subway 
Texaco Chevron 
United First Financial 
Volkswagon" 

Even worse...

Michael Savage's son owns Rockstar Energy Drink.  

Why on earth is this upsetting to me?

My husband is the owner/admin of a mixed martial arts forum on the Internet.  We are huge fans of the sport and its various promotions, the UFC, EliteXC, Dream, Affliction and so on.  Not only does Rockstar sponsor all of these promotions but it sponsors several individual fighters as well. Everytime I see the Rockstar logo, I will think of Michael Savage's hateful comments toward my son, myself, and other families like ours.  It is tempting to use some of my connections in the sport to try to make a point.  If I don't, it is only because I am extremely busy with moving, becoming a landlord, being on the school board, going back to work for a new school year - all on top of being first and foremost a mom to my kids.  That's what important, more than insensitive twits like Savage.

Then again, when has being busy been an excuse for me?

Michael Savage - Clueless jerk or just needs the opportunity to have my son for an afternoon?

You decide.  I have got to find out who this guy's sponsors are.

Amanda Peet: Open Mouth, Insert Foot

She called parents who don't vaccinate their kids parasites.  Whoops.  Not that I am of the vaccine school of thought, but it was still an ugly comment for Amanda Peet to make.  Of course, she apologized for it - in her apology, she made a lot of sense.  Noting the 14 studies conducted on autism and vaccines, all failing to find a link between the two.

"How many more studies do we need to conduct on vaccines, before we start re-channeling our efforts and money towards research on autism?"

Since I believe that over prescription of antibiotics is a more likely culprit in our case than vaccines would be, I would rather the time and energy be focused on finding a treatment or cure to improve his life, rather than participating in class actions suits and finger pointing.  I guess that is ugly of me to say, but I have found that sitting the non-vaccine pews of church can be very lonely and isolating.  I am tired of hearing about vaccines.  I want to know more about the recent synaptic study, the potential of gene therapy to remap the brain, things that may give me a child that won't run out into traffic because he doesn't want to go to Red Lobster, or can hold a conversation with me or his brother.  That's what I want.  Maybe after this little incident, Amanda Peet will want it to and give time and energy to help Jimmy and other children with autism.

We're Back...

We went ahead with our planned trip.  Jimmy was really moody the whole time.  Our one nice meal (when the in-laws joined us for the day), I didn't even get join them because Jimmy refused to leave the time share.  He would melt down when we would leave, he would melt down when we got back.  There was no winning with him.  It was depressing.  Maybe I have only myself to blame for that, as I didn't get there in the best of moods.  Nothing worked as I would have hoped this trip.

Oh well.  Home to pack.  

My nightmare

We went to Red Lobster tonight as a family.  Taking young children to a restaurant is a challenge for any parent.  We used to go out as a couple at least once a week, but since our sitter problem in the spring, we have either not gone to do things, split up and someone takes Jacob, or attempted to do them as a family.  

When we arrived at Red Lobster, Jim ran in and got a table and came back for us.  Jimmy wasn't being compliant, so I sent him ahead as I attempted to wait him out.  After 15 minutes, I gave up and hauled him out of the car.  He sat on the benches for a few more minutes, but when I tried to get him to go in, he got away from me and took off.  I dropped my purse and ran after him, screaming for help.  I stumbled in my flip flops and he got even more distance between us, as he headed for Sudley Road with eight lanes of traffic.  He nearly went in the street, but some man I heard my pleas and grabbed him on the curb.  He went on, but I sat on Jimmy for another ten minutes on the lawn outside, waiting for another man to find dh and bring him out to help.

We got him in, but it was the worst night ever.  I was crying, my hands were shaking, and Jimmy still wasn't keen to be there.  I never ate - I was too upset to even order food for myself.  My whole body just shook as I realized that I honestly came very close to watching my son get himself killed.  I haven't calmed down from that yet.  We are supposed to go on vacation tomorrow, but I don't want to go.  I want to stay in my house.  It may be a mess because we are packing to move.  He may write on the walls.  But there are deadbolts.  He doesn't cry or put up a fight when I am trying to get him through the door.  In our home, we are relatively safe.  In this moment, when my hands are still shaking, it is the only place I want to be.  

Tina Fey's Black

I love this...

Recent photos from July 4th

Experts argue over push to test autism treatment

I am thrilled that this will be formally studied.  I have never pursued chelation for Jimmy, principally because I don't believe that his autism was caused by mercury.  I am hopefully any time formal study is done, because it provides another possibility treatment and maybe will lead to discovering what causes it or what will cure it.  

CHICAGO, Illinois (AP) -- Pressured by desperate parents, government researchers are pushing to test an unproven treatment on autistic children, a move some scientists see as an unethical experiment in voodoo medicine.

The treatment removes heavy metals from the body and is based on the fringe theory that mercury in vaccines triggers autism -- a theory never proved and rejected by mainstream science.

Mercury hasn't been in childhood vaccines since 2001, except for certain flu shots.

But many parents of autistic children are believers, and the head of the National Institute of Mental Health supports testing it on children provided the tests are safe.

"So many moms have said, 'It's saved my kids,' " institute director Dr. Thomas Insel said.

For now, the proposed study, not widely known outside the community of autism research and advocacy groups, has been put on hold because of safety concerns, Insel told The Associated Press.

The process, called chelation, is used to treat lead poisoning. Studies of adults have shown it to be ineffective unless there are high levels of metals in the blood. Any study in children would have to exclude those with high levels of lead or mercury, which would require treatment and preclude using a placebo.

One of the drugs used for chelation, DMSA, can cause side effects including rashes and low white blood cell count. And there is evidence chelation may redistribute metals in the body, perhaps even into the central nervous system."I don't really know why we have to do this in helpless children," said Ellen Silbergeld of Johns Hopkins University's Bloomberg School of Public Health, who was invited to comment on the study to a review board of the national institute.

Despite lawsuits and at least one child's death, several thousand autistic children are already believed to be using chelation (pronounced kee-LAY'-shun), their parents not content to wait for a study.

Among those parents is Christina Blakey of suburban Chicago, who uses chelation and a variety of other alternative therapies, including sessions in a hyperbaric chamber, on her 8-year-old son, Charlie.

Before he started chelation at age 5, Charlie suffered tantrums. When she took him to school, she had to peel him off her body and walk away. But three weeks after he began chelation, his behavior changed, she said.

"He lined up with his friends at school. He looked at me and waved and gave me a thumbs-up sign and walked into school," Blakey said. "All the moms who had been watching burst into tears. All of us did."

There is no way to prove whether chelation made a difference or whether Charlie simply adjusted to the school routine.

Autism is a spectrum of disorders that hamper a person's ability to communicate and interact with others. Most doctors believe there is no cure.

Conventional treatments are limited to behavioral therapy and a few medications, such as the schizophrenia drug Risperdal, approved to treat irritability.

Frustrated parents use more than 300 alternative treatments, most with little or no scientific evidence backing them up, according to the Interactive Autism Network at the Kennedy Krieger Institute in Baltimore, Maryland.

"With a lot of mothers, if they hear about a treatment, they feel like they need to try it," said project director Dr. Paul Law. "Anything that has a chance of benefiting their child, they're willing to give it a shot."

More than 2 percent of the children tracked by the project use chelation. If that figure holds for the general population, it would mean more than 3,000 autistic children are on the treatment at any time in the United States.

Chelation drugs can be taken in pill form, by rectal suppository and intravenously.

Dr. Susan Swedo, who heads the federal institute's in-house autism research and wants to study chelation, gained notoriety by theorizing that strep throat had caused some cases of obsessive compulsive disorder. The theory has not been proved.

She proposed recruiting 120 autistic children ages 4 to 10 and giving half DMSA and the other half a dummy pill. The 12-week test would measure before-and-after blood mercury levels and autism symptoms.

The study outline says that failing to find a difference between the two groups would counteract "anecdotal reports and widespread belief" that chelation works.

But the study was put on hold for safety concerns after an animal study, published last year, linked DMSA to lasting brain problems in rats. It remains under review, Insel told the AP.

Insel said he has come to believe after listening to parents that traditional scientific research, building incrementally on animal studies and published papers, wasn't answering questions fast enough.

"This is an urgent set of questions," Insel said. "Let's make innovation the centerpiece of this effort as we study autism, its causes and treatments, and think of what we may be missing."

Last year, the National Institutes of Health spent less than 5 percent of its $127 million autism research budget on alternative therapies, Insel said. He said he is hopeful the chelation study will be approved.

Others say it would be unethical, even if it proves chelation doesn't work.

Federal research agencies must "bring reason to science" without "catering to a public misperception," said Dr. Paul Offit, chief of infectious diseases at the Children's Hospital of Philadelphia and author of an upcoming book on autism research. "Science has been trumped by politics in some ways."

Offit is concerned vaccination rates may fall to dangerous levels because some parents believe they cause autism.

Dr. Martin Myers, former director of the federal National Vaccine Program Office, said he believes giving chelation to autistic children is unethical -- but says the government can justify the study because so many parents are using chelation without scientific evidence.

"It's incumbent on the scientific community to evaluate it," he said.

Actress Jenny McCarthy, whose bestseller "Louder Than Words" details her search for treatments for her autistic son, Evan, told thousands of parents at a recent autism conference outside Chicago that she plans to try chelation on him this summer.

"A lot of people are scared to chelate ... but it has triggered many recoveries," she said.

But those claims are only anecdotal, and there are serious risks.

Of the several drugs used in chelation, the only one recommended for intravenous use in children is edetate calcium disodium. Mixups with another drug with a similar name, edetate disodium, have led to three deaths, including one autistic child.

A 5-year-old autistic boy went into cardiac arrest and died after he was given IV chelation therapy in 2005. A Pennsylvania doctor is being sued by the boy's parents for allegedly giving the wrong drug and using a risky technique.

No deaths have been associated with DMSA, which can cause rashes, low white blood cell count and vomiting. It is also sold as a dietary supplement, which is how some parents of autistic children get it.

A Food and Drug Administration spokeswoman said the agency is "is looking into how these products are marketed."

What I love about Jimmy...

The way he sings himself to sleep at night while nesting in the covers.  Tonight, he is next to me while dh and Jacob are downstairs.  Chloe is nestled next to him.  As complicated, as stressful, as painful as life can be, some moments are so sweet...

Family Booted From Flight Gets a Refund

Good.  I hope it is because Southwest took notice of what's going on in the blogosphere (I noticed at least one Southwest IP address in my stats yesterday.)  Note to Southwest - I am glad you refunded the money, but you shouldn't have booted them in the first place. I have seen drunks on planes regularly, but you toss off kids with special needs.  It is still shameful and I would want a whole lot more than just my tickets refunded if you did it to me.

Jimmy's Summer

I haven't posted much about him lately.  I have some photos to add later, but he seems to like his summer program.  Most days, he is doing two outings a day into the community - pools, parks, restaurants, bowling, and so on.  He does some quasi-academic stuff with him, not necessarily because it is an academic program, but merely because it is what he likes to do.  He is, after all, Mr. "W is for Worksheet!"  He never puts up a fuss when I drop him off, so that in and of itself is a good indication that he is enjoying himself.  I am pleased about that.  

I think we are going on a little vacation next week - it's the time share week.  I always have mixed emotions about it.  It is a nice timeshare and a relatively cheap vacation.  (And I should be able to go and see T and take her baby gifts!!!)  But, take Jimmy out of his normal environment and it adds exponentially to the challenge of managing his behavior and meltdowns.  A week is so much to deal with.  We usually don't make it more than a few days.  I honestly don't want to go at all, not because I am a killjoy, but because of all that goes with vacations (especially unstructured ones like the timeshare) causes me more stress than it is worth.

Another autistic kid thrown off a plane...

Along with the rest of the family...  Stay classy, Southwest Airlines.  

Actually, Southwest is one of the few airlines I just won't fly.  I have always found their gate agents and flight attendants to be among the least helpful and straight up mean people I have encountered in travel.  Seriously.  I held this opinion of them before I had kids and wouldn't subject myself to the stress of flying with them under any circumstance.  

Don't Call It a Comeback

I am a dork for this kind of stuff - swimmer Dara Torres has made her 5th Olympic team, at the age of 41.

Amazing...

The Fourth of July

We took the boys over to Signal Hill for swimming, moonbouncing, and fireworks.  We nearly bailed on the fireworks, fearing Jimmy's response.  Though he is still not a fan of the noise, this year it was tempered by his love of the light show.  Even in the rain, the fireworks were pretty fantastic.  I guess the difference in his response to this from year to year is a reminder how much he has grown.

A Worthy Cause...

Austin Haynes, a Manassas area real estate agent and local public servant, is doing a swim-a-thon to raise money for a zero depth water playground accessible to all, even those with physical disabilities, so everyone can enjoy a day in the pool.  It's how he is choosing to spend his birthday, so some support - financial or even cheering him on at Stonewall Pool - would likely be appreciated.  

What a great guy!  It never ceases to amaze me what people will do help support children in their community.