Parent/Teacher Conferences

Jimmy and Jacob both had great conferences. Jimmy got his first letter grade report card. Granted, he is on an functional academic curriculum, but he got all A's. I cried. IEPs can be so sterile, but A's. I understand an A. I have worked my tail off for many an A. I know this seems so dorky, but it is such a happy moment for me as a mom. Both of my boys are doing well.

People are asking me how to vote...

...which is just bananas!

I have to admit, I am a little more comfortable with the question do these jeans make me look fat than I am what to do in the voting booth. But because I just can't bring myself to shut up, I answer anyway. The state offices, at least the top two, are relative no brainers. Jody Wagner has reached out to the autism community, really the only candidate to do so. If you are leaning to split your ballot, there's your split. Creigh Deeds, I think there is hope for him in the mandates battle, so I would suggest that autism's interests (mandates, education, etc...) are better served with him. Ditto with Steve Shannon, though the AG has little to do with our interests.

Here's where it get tricky. My heart tells me that Jackson Miller voted against my bill, but my head believes his procedural argument. I am still miffed, but it is more within the personal context of having Jimmy's services screwed with at school and potentially with his waivers and just feeling under siege. It pushed my buttons. At the end of the day, Jackson Miller supported families with autism. He will likely do it again. (And hopefully he will do it a little more to my liking, like getting to the floor and passed.) Educationally, he has the support of the MEA and the VEA, two groups of which I am member as an educator. I may have gotten my panties in a twist, but I do respect the man. This race is always a little weird because I know his opponent too, Jeanette Rishell, and I like her a lot. With the autism thing being discussed this year, it was all very personal to me and Lord knows I don't handle that stuff very well at all. Even keel? Yeah, right...

Bob Marshall. My hero for fighting for families with autism. But I also spoke to his opponent John Bell. He says he will introduce the bill himself to mandate coverage himself if elected. And he'll get it passed. Military guy, very thoughtful and determined and has obviously studied up on autism. I liked him. I am glad I don't live in that district to have to make that choice. It would be an even harder personal choice than Jackson versus Jeanette.

Whoever you vote for, make it out to the polls tomorrow.

What It's Like in Virginia?

A Pit Stop from Vacuuming and Playing Cars with Jimmy to Give an Enthusiastic Thumbs Up for Jody Wagner

Please vote for her on Tuesday. I think I have convince two Republican friends who like to split the ballot to actually cast a vote for her. This press release should garner some support from those on the fence politically but interested in autism and other disability issues.

A Happy Halloween

Jacob went as Wolverine. We found a shirt and a cap for Jimmy and he went as a trucker - he isn't much on costumes. We went to the Trunk or Treat at City Hall, which had a moon bounce. Jimmy moonbounced in the rain as Jacob and I went around and collected candy. I'd say we were up there for about 45 minutes, until Jimmy and dad went to man our door and Jacob and I went to canvass the neighbor. It was a good night.

The State Attorney General Race and Autism

In my attempt to determine the stance of those running for attorney general on the insurance mandate issue, I contacted the campaigns of Ken Cuccinelli and Steve Shannon. Ken Cuccinelli's camp called and said he supported a rider. A discussion of riders in Utah highlights the severe limitations of this type of coverage:

First off, the rider does not help YOU...families who already have a child with a diagnosis. The rider would have to be purchased before a child is born. How many of you would have opted to pay extra for autism coverage before your child was born, just in case they happened to become diagnosed with autism? I can honestly say that I wouldn't have. Young parents are already faced with so many financial strains of having a new baby. The few that might buy into this plan would probably be those that already have autism in their family. So, we know that MANY children still wouldn't receive coverage for their treatment because their parents didn't buy into the rider. Second, the rider that has been proposed by the insurance companies only allows coverage for children from 2-6 years old. It only allows $25,000 a year for coverage, and there is a daily limit of $100. We know that these severe limits would not provide for quality treatment. There is no way that a full early intensive program could be attained with these limitations. Third, There are not riders for preemies, cancer or diabetes. Why is this medical problem not good enough for full health insurance coverage? Lastly, we in the autism community view the rider as a calculated distraction by the insurance lobby, and vote for the rider is a vote against families and children with autism.

This argument makes all the points I could every want to make on the issue of riders. There is no rider for HIV/AIDS, cancer, diabetes... why should there be for autism? Why should I pay premiums that offset the health care of those who smoke or share needles, yet have no access for my son when he has medical diagnosis through no fault of his or even my own? But, hey, its better than Bill Bolling.

Steve Shannon's staff had no idea of his stance on his insurance mandates. They probably don't need to know much, since that really isn't part of the AG's job. But they did tell me that Steve Shannon's brother had Down's Syndrome. He grew up in a home where he witnessed his parents advocacy for his brother and other kids like him on a daily basis and that, as staffers, they heard stories about his parents dedication often. So I guess I am going to do a little more research before Sunday. I think I am leaning Shannon.

All Politics is Local (Again...)

I hate election season. I really do. I internalize debates too completely. And when autism became a hot button topic in the local delegate race, I went off the deep end. It couldn't be helped. That autism bill meant the world to me and I hadn't completely understood on some level the difference between the committee vote and the end run vote that Bob Marshall attempted. I took it all very personally. No kidding... my child has autism. Moreover, our school services are in flux (another post for another time) and right after we got our EDCD waiver, our facilitator told us to start building case for keeping our new found services as the powers that be were looking at cutting the participation of children on this waiver. When you catch one break, three other things just crap the bed on you. It's almost a siege mentality and it has just been awful.

This election to me as the parent of an autistic child is about two things to me - an insurance mandate and education funding, in particular special education funding. Those strong in education are easy to identify as they are usually approved by the local education association. That would be the Democrats for the big three offices and the local delegate Jackson Miller. The insurance mandate is a little tricker. It is why I have not been enthusiastic with my support for Creigh Deeds. When I met him months ago during the primary run, he spouted the lobbyist line that markets will met the need. Health care reform, anyone? Yeah, right. Jody Wagner has been a strong supporter for mandates since the beginning, so she gets my vote. Bill Bolling has been vocal in his lack of support of insurance mandates, which is not pro-family or pro-life, so I couldn't vote for him in a million years.

After my Deeds encounter, I honestly wanted to vote for McDonnell, if he had any sort of positive stand on autism. I think he has probably changed his views on women (his daughters likely beat it out of him), which were too horrible to ever be put on paper, but I find it appalling that these conservatives are given the pro-family, pro-life stamp of approval just because they are against abortion. Being against abortion is a matter of political expediency. If they were for all life, they would ensure that all children brought in to this world, health or sick, developmentally typical or disabled, received proper medical treatment and care. Yes Virgina, that includes insurance mandates. I know many would consider this argument self serving, but what do people think the end game is? Do we want medical research into treating autism or detection inutereo so this children aren't born? Politicians serve so many masters that they can't be 100% intellectually truthful on anything. Then again, maybe I can't be either. I used to be a Democrat. Now I am single minded on one issue and honestly, as far as Richmond goes, no one party is better than the other.

My head is in such a wrong place. Politics, smolotics, I can't wait for Wednesday...

I owe you a post...

And I will get to it... but I will give you a little stat. A 2007 Harvard study estimate the cost of an untreated person with autism as $3.2 million dollar.

Any politician who does not support insurance mandates is just crazy... or has no sense of the economics of autism.

Another letter to the editor on the autism bill debacle...

At least I am not the only one who cares... InsideNova.com had another letter regarding the killing of HB1588 and the role of our local delegate Jackson Miller. I get really worked up about it when this issue comes up, thus my overly harsh comments of the other day in the comments page. I appreciate his support of the bill initially, but I truly hope he has learned a valuable lesson. No, not that he should not sponsor the next autism bill that comes his way. I hope he now knows that his first responsibility isn't to his lobbyists or party leaders, but to his constituents. He is a nice man, he is a bright man, and I am fairly certain that he is going to get the message when all is said and done. Right now, I must say I love the editorial page editor who is running these letters!!! He is giving voice to something that is so important.

In a related matter...

Even with her earlier press release, I still don't know Jeanette Rishell's stance on the issue of autism. Can someone enlighten me?

The Great Flu Vaccine Debate

Well, this week I get my flu shot. I am getting it at work, so I am fairly certain that I am getting the multidose with thimerosal. They have started the local shot clinics at the mall, but Jimmy will get the single dose at his doctor... without thimerosal. Jacob is what I am agonizing over now. I want him to get the vaccine, but I won't let him get his dose until I have mine and see if I have a reaction. Then I will decide where and when to get his. I can't believe I am agonizing over this as much as I am. I don't believe Jimmy's vaccine load caused autism in him. But I can't shake all the information/propaganda I am exposed to as part of this community. My niece in Texas has already had swine flu... she is recovering nicely and returning to school on Monday. But I still fear this particular virus. I am just starting to fear the vaccine too.

Oops... always check what you wrote before you hit send...

So I was commenting on a letter in the newspaper and I hit send before I finished editing it... it was a little heavy handed on the candidate. So I would like to apologize (I tried to tone it down in a second post) to Jackson Miller for being a little heavy in my comments. I think he is a great guy, but I care so passionately about getting kids with autism covered under insurance for their therapeutic treatments. I stand by what I said, but I could have said so more nicely.

Another one bites the dust...

Jimmy lost the second top front tooth today. And by lost, I mean lost. I got a phone call from Extended Care saying he was crying and fussing at his mouth, but wouldn't let anyone look. She asked if he had a loose one and I said yes. That must have been right about the time he lost it. No tooth recovered. Last time he tossed it into the lawn. So if he didn't swallow it, Mr. Bailey might just find it on the gym floor tomorrow.

All Jimmy wants for Christmas is his...

Funny...

The voice reminds me of Britney Spears.

Join me in standing with Dawn

Hi,

For two years, CIGNA has denied Dawn Smith treatment for her brain tumor. She's had enough, so she's heading to Philadelphia to confront CIGNA's CEO in person.

Dawn wants to make sure that CIGNA can't ignore her when she gets there, so she's been collecting hundreds of pill bottles with messages of support along the way.

But MoveOn is taking it up a notch. They're collecting thousands of statements of support online, putting them in pill bottles, and delivering them to Philadelphia in time for Dawn's big arrival. I just sent one in and it's being printed now. Will you join me in standing with Dawn at the link below?

http://pol.moveon.org/dawnmessage/

Thanks!

A Press Release That Came to My Inbox...

New Study Highlights Consequences Of Miller’s Action

Autism study emphasizes the importance of treatments Jackson Miller voted against covering

MANASSAS, VA - A study released today in the journal Pediatrics shows that cases of autism have risen in the United States and about 1 percent of children ages 3 to 17 have autism or a related disorder. Given this increase in statistics, that means that based on 2007 census data for Virginia, thousands of children in Virginia suffer from the disease.

In the 2009 legislative session, Delegate Jackson Miller voted against a bill to support requiring insurance companies to cover treatments for autistic children. After telling the parents of autistic children that he would support the bill, he ended up voting to kill the bill.

“This most recent study highlights the real concerns of parents with young children today. As more and more parents face the tough reality of dealing with autism, Delegate Miller voted against coverage of some of the most basic treatments for their children,” said Jeanette Rishell, candidate for Delegate.

Studies indicate that strong early intervention that would have been funded by insurance in the autism bill helps about 90% of autistic children to improve dramatically and about half reach normal or near-normal functioning. Additionally, the cost increase to insurance companies would have been negligible, approximately $1.50 per policy per month.

“No matter what excuses he gives, Jackson Miller's voting record on the autism bill clearly shows that when it mattered, he voted against supporting the families of children with autism. By killing the autism bill in the 2009 session, Jackson Miller has forced families with autistic children to bear the costs of treatment during an economic recession. A family should never have to chose between feeding their child or providing their child with necessary medical care,"
said Rishell.

“Jackson Miller will tell you that it was a ‘procedural vote’ but the parents of autistic children will tell you it was a stab in the back,” said Ilana Kaplan-Shain, campaign manager for Jeanette Rishell.

Of course, they fail to mention that he co-sponsored the bill in question. I will continue to give him partial credit for that. But he did vote against Bob Marshall's attempt to bring the bill to floor, which was a vote against the bill, my son, and other kids like him. I can't say that I am sure how Jeanette would have handled it if she had been presented with the same choice by Democratic leadership. But Miller's action on the bill, no matter how much I like him or respect him (and he has gotten some great stuff done for law enforcement in Richmond especially), his actions on HB1588 hurt me.

There is a debate on Thursday. I was thinking about ducking out for it. I am hoping that someone would care to join me. Send me an e-mail if you would like to go.

A Great Post...

It is true that the rising numbers have almost been met with a shrug by the American media...

An estimated 1-in-60 13-year-old boys has an ASD, but I don't believe the same is true for 43-year-old men. It is time to stop pretending that the autism crisis is not happening.


Read more at: http://www.huffingtonpost.com/david-kirby/do-you-believe-that-one-i_b_310378.html

Nice to see people held accountable in Richmond...

If I could vote against Tom Rust, I would.

Spitting?

Jimmy's newest behavior... spitting. Solely at school. I have seen him drool and be fascinated by it, but the boy is seriously, defiantly spitting at school. I don't know how this started, but I am hoping it is a temporary behavior. It's not a pleasant or desirable one, especially in this age of concern about bodily fluid. If you think people flip out when you cough or sneeze now...

A Good Breakdown of the Today's Number in Time Magazine...

1 in 100.

(And another good article from Time about autism and fevers... it is a phenomenon that we have notice in Jimmy, that he is a little more verbal and connected when he has a fever.)

The Origins of Autism (at least with my kid...)

A comment on my 1 in 100 post asked me what my theories on the cause of autism. As many of you know, I am not a big vaccine person, meaning that I don't think Jimmy's autism was principally caused by a vaccine injury. When we first saw Dr. Conlon years ago, he said that he thought autism was the perfect storm of speech delay, learning disability, mental illness, and an environmental factor, an X factor that hasn't been determined. His symptoms really began after his first ear infection at 9 months, following antibiotics. He was on antibiotics for repeated ear infections for nine months. Those were the months when everything became undone. There is some discussion of it as having a basis as an autoimmune issues and I think there is something to that and that unknown environmental factor is the trigger.

I have followed the vaccine schedule for both my boys. In hindsight, I might have thought about restructuring it. Never not giving him the needed vaccines, but maybe not all at once. Not because it was a cause, but because he is autistic and he reacts differently to medication. His behavior on antibiotics, for example, is more stimmy and he is more anxious and apt to tantrum. The thimerosol issue, for example, with the H1N1 vaccines. The single doses supposedly does not have the preservative. The multidoses does. I will seek out a single dose for my son as it just seems prudent. What doesn't seem prudent to me for my child is to not get the vaccine. As he doesn't have the same concept of personal space or understanding of hygiene, he is more at risk in someways for the flu and such. And knowing that he reacts as strongly as he does to antibiotics, I try to limit those as well. He still gets a couple of ear infections a year, even with his fifth set of tubes, but try to keep him as healthy as I can otherwise to limit the need for medication.

So those are my theories... As every parent does, I wish I had a cause so I could have more hope for a treatment. There is an extensive nuerodiversity movement online that resents the notion of a cure. I love Jimmy for who he is, but I hope with therapy and treatment, that he can live a more normal life. Right now, I don't see a future for him that includes things we take for granted - marriage, chlidren, a career, independence. That is what I want for him and why I fight.

Back from the Fall Jubilee

Jacob and I spent an hour or so down at the Fall Jubilee, running into friends galore, including Jackson Miller. As frustrated as I was about the comments attributed to him, I got his side, which never gets completely addressed in the paper. I have better understanding of that "bad bill" comment (not that he made it.) I didn't get to quote the latest statistics being discussed, but I am confident in his commitment to families with autism. Now if I can get him to rebel against his Republican leadership a little when things like Marshall's parlimentarian manevuer come up again, he vote for his constituents instead of his leadership. A girl can dream right?

And I just missed Bob McDonnell. Damn it.

It is almost official - 1 in 100 Children has Autism...

From the Huffington Post:

A pair of federally funded studies on autism rates is about to make news -- big news -- and it isn't good: It would appear that somewhere around one percent of all US children currently have an autism spectrum disorder. The rate is even higher among six to 11 year olds and among boys, according to data from at least one of the new studies.

If you are an expectant parent, or planning to have a child soon, you might want to sit down before absorbing these staggering statistics, recently released by the National Survey of Children's Health (NSCH), which is supported by the Health Resources and Services Administration (HRSA) of the US Department of Health and Human Services.

According to data from the 2007 telephone survey of parents of nearly 82,000 US children, the odds of a parent being told that their child has an ASD are one in 63. If it is a boy, the chances climb to a science fiction-like level of one in 38, or 2.6% of all male children in America.

But there was also some surprisingly good news. Enormous numbers of children who were told that they had autism went on to shed the ASD label as they got older, parents reported.


Read more at: http://www.huffingtonpost.com/david-kirby/autism-rate-now-at-one-pe_b_256141.html

The article is very vaccine oriented in causality, but I think the immunological point is a good one. The environmental trigger, on the other hand, could be more or not limited to vaccines. But 1 in 100. Wow. How many more children will it take before the leaders in my state and country take it seriously enough to devoted adequate resources to research into causes and cure or to require complete medical care paid for under insurance?

I think there is good news in that children shed the label of autism, but even that needs to be looked into. I can't imagine that Jimmy will, but of course it would be what I want most in the world.

Our ENT visit...

No infection, but a blocked tube. It's a relief, although the drops treatment course is a little longer in duration and not exactly any more enjoyable than the antibiotics. Jimmy is really cranky today and not transitioning well. A late arrival and early departure from school will do that (we had an afternoon appointment too.) He is starting to calm down, though he is still scripting his classmates and teachers name, in between going over electronic flash cards of animals, another delight he found on YouTube.

Off to the ENT...

Going to get Jimmy's tubes checked tomorrow. I think he actually has an ear infection, but I opted for this rather than the GP. We are overdue for a tubes check and there are fewer truly germy sick people at ENT than a family practice. It's not one moment too soon as he is feeling really puny.

I do need to get his rash on his backside looked at. I think it might be yeast related. Again, I am not sure the benefit of going right now outweighs the risk with the nasty flu season I am seeing around me. Other than some diaper rash treatment (what's going on is very similar), if anyone has some over-the-counter remedy recommendations, let me know.

Found on Facebook: Virginia Autism Survey

I have been looking for something like this all over the internet. It is important to note that both Delegate Miller and his opponent Jeanette Rishell are listed as in favor of autism insurance reform. I am unclear if Delegate Miller completed the survey and I still have concerns about the comments from their debate, but I am extremely pleased as seeing Jackson Miller and Jeanette Rishell both in support of offering coverage to my son and children like him. They have both met Jimmy numerous times and I would like to think that they think of him and the other children with autism they have met in this district.

Probably bigger from this is that while I was certain of voting for Jody Wagner all along, I have been undecided about the governor's race. If Bob McDonnell had said something in support of autism insurance reform, I would have voted for him. Instead, I hear this:

“Virginia has one of the highest numbers of insurance mandates in the country and these mandates adversely impact families’ and small business’ ability to purchase insurance.” McDonnell says he would seek other ways (than mandated insurance) to treat autism if elected, but doesn’t offer any specifics.

I honestly was starting to think that I wouldn't vote for him, but I am casting my vote for Creigh Deeds in hopes that he will take his new found support of autism insurance reform with him to Richmond.

Support Grows in House of Delegates; Deeds & McDonnell Differ

(RICHMOND, Sept. 17) -- Incumbents and challengers responding to a new survey agree that the issue of mandated insurance coverage of autism needs to be resolved in the upcoming General Assembly session. Last session, HB 1588 and SB 1260 both failed to reach floor votes necessary to advance. Heavy lobbying by autism families was countered by opposition by health insurance companies and the Virginia Chamber of Commerce. The VAP survey of all Delegates and challengers also shows that bipartisan support for insurance reform is growing. Democratic minority leader Ward Armstrong and Republican majority leader Morgan Griffith both support mandated insurance coverage for autism. They are joined by 36 other members of the House of Delegates who have indicated support of the mandate. Of 20 challenger replies, 17 support autism insurance, and three said they are undecided.

In the gubernatorial race, there is a stark difference between candidates. Democrat for governor Creigh Deeds says, “This is an urgent situation,” and he supports autism insurance. “Early treatment of autism will help countless families across the Commonwealth.” His running mate for Lt. Governor Jody Wagner also supports the legislation. Republican Bob McDonnell’s survey was incomplete. His reply does not offer a position on the autism insurance issue, providing this statement instead: “Virginia has one of the highest numbers of insurance mandates in the country and these mandates adversely impact families’ and small business’ ability to purchase insurance.” McDonnell says he would seek other ways (than mandated insurance) to treat autism if elected, but doesn’t offer any specifics. Running mate Bill Bolling’s survey indicates he clearly opposes mandated insurance coverage of autism.

In Virginia, 95% of insurance companies surveyed by the state, including market-share leader Anthem, categorically exclude coverage for the treatment of autism. In 2008, JLARC studied the issue and concluded that coverage of autism treatments is consistent with the role of health insurance in the marketplace. In 2009, JLARC reported that early diagnosis and treatment of autism in Virginia is lacking in many areas, and too expensive for families to pay out of pocket. More children will be diagnosed with autism this year than cancer, diabetes and AIDS combined. In a national movement led by Autism Speaks, 15 states have now mandated that insurance companies provide coverage for the treatment of autism, most recently New Jersey.
The same bill will come before the Virginia General Assembly again in 2010.

The VAP survey also polled Delegates and challengers on the need to train teachers and paraprofessionals in educating pupils with autism, which is a complex neurological disorder. The vast majority of aides as well as many special education teachers have no formal training in autism or behavior management. Over 50 survey respondents supported new training standards for teachers, including both McDonnell and Deeds. The VAP will push new legislation this year to require instructional staff to be trained or certified in autism by September 2011.

As a guide, the VAP provides a summary of incumbents and challengers who supported the insurance mandate last session as bill patrons, or indicated support in our recent survey.
Del. Ward Armstrong – Democratic majority leader.
Del. William Barlow
Del. Joseph E. Bouchard
Del. Danny C. Bowling
Del. David Bulova
Del. Charles Caputo
Del. Bill Carrico
Del. Roslyn Dance
Del. David Englin
Del. Morgan Griffith – House majority leader
Del. Timothy Hugo – Mandated Benefits Commission chairman
Del. Robert Hull
Del. Barry Knight
Del. Steven Landes
Del. Scott Lingamfelter
Del. Manoli Loupassi
Del. David Marsden
Del. Robert Marshall – Lead House Patron in 2009 session
Del. Bobby Mathieson
Del. Donald Merricks
Del. Jackson Miller
Del. Paula Miller
Del. Joseph Morrissey
Del. Paul Nichols
Del. David Nutter
Del. John O’Bannon – Only medical doctor in the House
Del. Glenn Oder
Del. Clarence Phillips
Del. Albert Pollard
Del. David Poisson – Lead Democrat patron in 2009 session
Del. Ken Plum
Del. Thomas Rust
Del. Lionell Spruill
Del. David Toscano
Del. Shannon Valentine – Sponsored 2-year autism study by JLARC
Del. Margaret Vanderhye
Del. Onzlee Ware
Del. Vivian Watts

Incumbents in opposition to the autism insurance mandate in their surveys:
Del. Sam Nixon, GOP caucus chairman, and Del. Mark Sickles.
Responding as undecided were Del. Jimmie Massie, Del. Lee Ware, Del. Jennifer L. McLellanand Del. Bob Purkey.

Challengers (17) in support of autism insurance reform:
Peggy Frank—7th
John Bell –13th
John Lesinski – 15th
Thomas Greason –32nd
James Hyland –35th
Gary Werkheiser – 42nd
Tim Nank – 43rd
Jeanette Rishell – 50th
Paul Nichols –51st
Christopher Merola—53rd
Gary Reinhardt—65th
Tom Shields—73rd
Jennifer Lee –80th
Peter W. Schmidt – 82nd
Jason E. Call –90th
Samuel L. Eure – 91st district
Gary West – 94th

Challengers (3) undecided on autism insurance reform:
Jim LeMunyon – 67th
Gwen Mason – 17th
John Amiral –87th

The survey asked for responses to 7 questions between the choices of Strongly Disagree, Disagree, No Opinion, Agree and Strongly Agree and were signed by the participants. This news release in no way serves as an endorsement of any candidate, nor is it intended to influence the election. Its purpose is purely informational for the benefit of Virginians interested in developmental disabilities. Funding for the survey was generously provided by the Autism Society of America – Central Virginia chapter in Richmond. The Virginia Autism Project is a 501(c)(3) non-partisan organization led by advocates from Roanoke to Virginia Beach, Richmond to Fairfax. We are on Facebook, and encourage friends to join us there as fans of the movement. Visit www.vapnova.org. For more information on the national scene, go to www.autismvotes.org.

An owed post... Cox Farm

Cox Farm's Fall Festival was a good time. We took Jimmy's respite provider with us and it was just such a great day. She was really able to accommodate Jimmy's desires and aversions. We did some things together well, like the slides, and others poorly (like the second trip on the hayride), but everyone was able to enjoy themselves. I don't take the help for granted. It was huge to have her assistance. We avoided going a year ago because it was getting unmanageable with Jimmy. We have been given something great in the help we are receiving. We are very fortunate.

I'd have more to say, but I think I am coming down with the nasty bug that is going around work. I want sleep. Badly.

Cox Farm Photos... story to follow

A Reality I Understand...

Today's Washington Post has an article about the health-care debate from the various perspectives of people living on a suburban street. It includes a family with an autistic son, who's story is very similar to everyone else who walks this path.

Time's Up

Just across the courtyard, at 114, Will and Sarah Armstrong and their three children are about to join the ranks of the uninsured. Will, who worked in church leadership, was laid off. In October, barring a last-minute job find, they will have no coverage.

"Our family is now going to be one of those who need public health care, which I never thought we would," Sarah said. "It's scary."

It's not like what they had was perfect, but it was something. After the birth of each child, Sarah found herself arguing, for months, with insurance companies over hundreds of dollars in doctor bills that they said she owed. After hours on hold to haggle with agents and filed and refiled forms, she was always proven right. she says.

When their oldest child, Zachary, had difficulty learning to speak and began to fall apart at the sound of a hair dryer or vacuum cleaner, they persevered through long waiting lists and paid out of pocket to take him to specialists, who diagnosed high-functioning autism. The boy needed speech and occupational therapy, psychiatric care, and a variety of medications, supplements and classes. The couple found themselves burning through their savings to pay for the care that their health plan would not cover.

Zach had such a bad experience in school that Sarah began home-schooling him. Now, going back to work is no longer an option for her. With their savings depleted, the couple, both 36, are considering selling their house and moving in with Will's parents in Virginia.

"What she's doing with Zach is really working for him," said Will. "We're committed to continuing it, even from a cardboard box."

Sarah finds herself watching the health-care debate with more intensity, more impatience now that it hits so close to home. She wants lawmakers to do something, whether or not it helps her family right away. Watching Obama address a joint session of Congress this month was not encouraging. "All the Democrats stood up and cheered at every line, while all the Republicans sat with their arms crossed," she said. "And all I could think of is, have we come to this?"

Not at all sure of what I think of "I Am Autism"

There is a whole lot of truth to it, but it's heavy on its point.

Autism amendment to America Healthy Future's Act

Some good news on the insurance front from Autismvotes.org:

"As you know, Senator Robert Menendez (D-NJ) introduced an amendment to the America Healthy Future's Act earlier this week and the measure was heard before the Senate Finance Committee last night. It passed with an overwhelming majority, receiving additional support by Committee Chairman Max Baucus (D-MT). After the amendment passed, Senator Menendez made extensive comments on what this amendment will mean to families of children with autism across the nation making the intent of the amendment clear and preserved in the Congressional record."

Thank you Senators Baucus and Menendez!!!!

OMG!!!!

How many people does it take to extract three vials of blood from Jimmy?

Seven people and forty five minutes. In the interests of decorum, I am waiting until it's noon to have a drink. It was awful.

Oooh, Vera!!!!

Paprika!!! Love it!!!

John Travolta Acknowledges Late Son's Autism

John Travolta acknowledged his son's autism in his testimony in a Jamaican extortion trial today. I have been really critical of Scientology in the past, especially Tom Cruise's comments on medication and the collective ignorance of developmental disorders. I have been critical of Travolta for not acknowledging what was rumbled about in autism circles for years.

Not that it matters for anything, but I feel badly about my insensitivity. He may be a celebrity, but he was a person first, making the best decisions he could for his child. It's what we all do. I just found it completely frustrating the thought that the existence of this disorder, this disability was even in doubt among Scientologists. Day in, day out, it is very real to those of us raising kids. The neurologists, developmental pediatrician, therapist, medications - it doesn't stop. It is life, 24/7.

I think Mr. Travolta's acknowledgment of his son's diagnosis will likely raise the profile of autism yet again. I hope he will lend his name and energy to helping Jimmy and other children and adults with autism. But most of all, I wish him and his family peace and healing, because losing a child is a pain no one should have to endure.

A Moveon.org mailing that hits home...

The thing that resonates with me is that the situation is very similar to the one that my brother-in-law has found himself in. The tumor, the treatable nature of it (only if his in-network doctor knew what to do), and the suffering of the whole family. It's crazy. When this got forwarded to me, all you have to do is change the name of the patient and the insurance company - the experience is the same.


Dear MoveOn member,
Meet Dawn. She lives in Atlanta.

Four years ago, Dawn was diagnosed with a rare, but treatable brain tumor. Dawn's doctors are ready to help her. But CIGNA, Dawn's insurer, refuses to pay for her care because the only hospitals qualified to treat her are out-of-network.

Dawn has been fighting CIGNA on her own for years, but now she's asking for help. What's happening to Dawn could happen to any one of us. And if we all stand with Dawn to shine a light on Big Insurance's abusive practices, we can get Dawn the care she needs and make sure they don't do this to anyone ever again.

I just signed a statement supporting Dawn. CIGNA may be able to ignore Dawn, but they won't be able to ignore millions of us standing together. Will you join me? Clicking below will add your name:

http://pol.moveon.org/dawnsmith/o.pl?id=17251-10405685-wBIgNfx&t=3

The statement says, "I stand with Dawn Smith. CIGNA must provide the treatment she needs and stop rejecting legitimate care for all the others who are suffering."

Unfortunately, Dawn's story isn't unique—she's one of the millions of Americans who are suffering—but what she's doing about her situation is. Instead of suffering in silence, she's sharing her painful, powerful story so that, as she says, "no one else has to go through what I have."

Since she got sick, Dawn's life has been a struggle. She has terrible pain and sudden seizures that can knock her off her feet. She's had to move back in with her mom so she can have constant care. But through all that, she's kept her spirits up.

The worst part is that her condition is treatable. But CIGNA's refusal to treat her has brought her to "the end of my rope," as she puts it. CIGNA gladly accepts Dawn's premium payments, but when she needed care, they refused to pay for it, coming up with new reasons as they went.

Dawn's story is a symptom of a much bigger problem. But if we all rally behind her, we can help not just her, but everyone else who's suffering under our broken system, too. Together, we have the power to make Dawn's story different, and in the process, to remind Congress and the American people why we so desperately need health care reform.

I'm standing with Dawn. Will you join me? Clicking below will add your name:

http://pol.moveon.org/dawnsmith/o.pl?id=17251-10405685-wBIgNfx&t=4

Thanks for all you do.

No, I am not dead...

I have had a big week, figuring out my place in the new world order. Adapting to the help in the home. My house gets progressively clean (in small increments, but it is happening) with each day. It's sort of amazing. But because of the hours that she is working, she is here closer to bedtime. It has allowed for a more focused situation, where she gets him to bed in his own bed. He has never slept in his room before. We have had an air mattress in the floor, which is where he was moved to each night after he fell asleep in our bed (only to come back at 3 or 4 am.) He is starting and ending in his own bed, in his own room. I want it to be habit. It's how it should be. Our attendant has been critical in getting it started, because bedtime for him is bedtime for Jacob as well. Jacob is horrible at bedtime. I had thrown my hands up about getting people to sleep when and where they needed to. But I sort of feel like I am abdicating Jimmy in this way as a mom. But I can't do both. As you can see, I am conflicted. Ultimately, its getting done and that's a good thing. We've got Nanny 911 going on at our house with a quiet 18 year old leading the charge. But it's working. And a favorite former sitter is moving back to town, she we will likely bring her in the fold as well.

Jimmy has an appointment coming up at Kruge Rehabilitation Children's Center in Charlottesville for an independent educational and medical evaluation. We will get professional recommendations for both and be back under the care of a developmental pediatrician rather than a neurologist. It's a more nuanced approached and I am grateful for it. I am hoping to get recommendations and input about what is truly best and most appropriate for Jimmy at this stage of his life. As always, there is a wait for the appointment, but it isn't too long. I have people wanting to strip services he needs badly, I have people who want to add services, and no one looking at Jimmy in a holistic way. I would think that the powers that be could do as part of this educational process, but they are not. Instead, I get to arrange and pay for it. The joys of autism.

He is having a good year starting at school. The new teacher is doing a great job with feedback on what kind of day he is having, what he is doing. The class is well staffed in quality and quantity of people at this point. I am pleased with the classroom part of it. Jacob is having a great time in Kindergarten as well. I got a note saying that he will have show and tell every Wednesday. I just think it's the cutest thing. I wonder if it would be inappropriate to ask that it be videoed and e-mailed to me. He is so expressive, I would love to see him describing his favorite things. Nothing but good notes on behavior at school. Not as good at Extended Care, but he will get there. Just as soon as he stops putting his friends in headlocks.

Sort of says it all...

A Scary Statistic Leads an Interesting Article...

More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined. One in everyone 150 children in the United States are diagnosed with autism according to AutismSpeaks.org. The disorder affects 1.5 million people in the United States.

Instead of letting the lifelong disease effect him negatively, Christopher Fitzmaurice is using his autism to help reach UNC Charlotte and the surrounding communities. Diagnosed at just three-years old, his case of autism was identified as mild to moderate. Now 20 years later, at the age of 23, he views this as a perfect time in his life to speak about autism.

Schools cope with challenge of educating autistic students

A good article about education, with the focus on a mom with three autistic boys in Colorado. It makes a couple of good points regarding the financial cost to school districts, but also the virtues of intervention:

"Districts that have the reputation of being the best at educating special needs children downplay their successes, afraid they’ll be inundated with applications and encounter even more budget problems. And Lehman says districts also don’t emphasize how much they spend on special needs children because some families of children without disabilities get upset that less money goes for programs for their children.

But for Teresa and Patrick Wright, the money spent to educate autistic and other special-needs children is money well spent. She predicts that Joshua will be able to live independently and attend college because of the instruction he’s received, and each time district experts meet with her to discuss the boys’ Individual Education Programs, she is heartened."

Please consider this...

Our friend Lara just donated bone marrow to her brother who suffers from Leukemia. She is of Armenian descent and she is walking in October to raise money to improve matching technology for her community. Please consider supporting her efforts - she is just a great girl.

"This October, I am participating in the Walk of Life to honor my brother and to help the Armenian Bone Marrow Donor Registry's efforts to save other others' lives. People aren't as lucky as my brother because they are still looking for donors to be matched with. The donations from this event helps those people find matches through better technology and funding for marrow registry drives. Please help me achieve my fundraising goals with your contribution. Just click "Sponsor Me" to make a secure online donation. Thank you!"

The Essence of Autism

An interesting blog post from PsychologyToday.com:

"Because autism can look so different, it sometimes confuses parents and professionals alike. It is not always clear which challenges should be focused on for a particular child: Do you prioritize working on toilet training or eye contact? Speech or attention span? Fine motor skills or academics?

No matter how sophisticated an autistic person may be, there is one fundamental aspect that caries through in all situations: a difficulty deeply interacting with other people on a consistent basis."

Yes, it has been five days...

Things are going well. School starts next week. Jimmy is excited to go back. Jacob is (finally) excited to go. This week was huge. Jimmy's EDCD waivers finally came through. I am thrilled for the help. It has been a long time in coming. I consider us fortunate to get the help, but it was a huge undertaking. It took two months, several appointments, and tons of paperwork to this in place. It almost seems miraculous that it got done at all.

More tomorrow...

Don't tell my sister that the health care system doesn't need fixing...

So my sister got one of those anti-Obama health care e-mail. See the text below.

"-----Original Message-----


Subject: Fw: Politics? Complicated?


Let all Americans get this straight.

Obama's health care plan will be
written by a committee whose head says he doesn't understand it,
passed by a Congress that hasn't read it,
signed by a president who smokes,
funded by a treasury chief who did not pay his taxes,
overseen by a surgeon general who is obese, and
financed by a country that is nearly broke.

What could possibly go wrong?"

My sister wrote the following response to the friend who forwarded it and everyone else who received the e-mail. I have redacted the name of the employer to protect my brother-in-law's privacy. It is a major employer that provides seemingly excellent benefits.

"This is not just Obama's problem, let me explain. My husband has a brain tumor that was found on 6/23/09... to this date undiagnosed... The insurance company so far has said: we can't have a second opinion, we can't have the medication prescribed by the doctor and we can't have the tests that the doctor has ordered to achieve a diagnosis... and we have insurance through (redacted)... one of the largest companies in the US. We have serious problems in this country with our healthcare system... let you be the one to get sick and find out yourself!!!!!!

And if we do find out a diagnosis than he can never leave his job because than he would have a pre-determined condition.... Welcome to our country!!!! Land of the Free????? or Land of Big Business???"

I think she meant pre-existing condition, but you get the idea. I have railed against the insurance industry because of the lack of coverage provided for autism, but her family's situation is actually worse. The neurologist they were working with actually recommended the second opinion because she was out of her depth with what's going on with him, but the insurance company refused. And they said death panels were a fallacy... If you ask my sister, she would say they were being employed by her health insurance carrier.

My 1000th Post

Seriously, did I just make it to 1000? Wow... I have kept this blog going for 1000 posts. Amazing. Yes, I have a small readership of family, friends, and the occasional Amanda Peet foot fetishist. Yes, that and Michael Savage's sponsor lists attracts the most new views of this page. No matter. I started this because my bulk e-mail list asking about how Jimmy was progressing was getting bigger and bigger and I wanted to keep everyone informed. I have had good days, I have had bad days, and written about everything in between. I love my sons and, as hard as it can be, I love my life. I have made mistakes, I have regrets, but I have always tried my best and in the end I think I have done more right than wrong. And I have learned from it all.

So since it is Sunday and I don't have too much to say, I am going to kiss a sleeping Jimmy, tell Jacob it's time for bed, and get ready for post 1001 tomorrow. Thanks for reading.

Quote of the day on my Gmail...

"Wanting to be someone else is a waste of the person you are."

--Kurt Cobain

RIP

The Civil Rights Act of 1964
The Voting Rights Act of 1965
The 1990 Americans with Disabilities Act
The 1993 Family and Medical Leave Act

Regardless of personal history, I can honestly say Senator Edward Kennedy had a profound effect on my life because of the legislation he marshaled through the Senate. Jimmy's life will be better because of his work and, hopefully, the continued work of the next generation of Kennedys. From my heart, I thank him. Rest in peace.

The Ups and Downs of Autism

It looks like I finally have the facilitator for the EDCD waivers nailed down. They are coming out the house next week. I abandoned the local facilitators because they couldn't get things moving quickly enough and went with someone who is further away. Distance doesn't matter so much because they travel to you, but I have heard good things about them and not only do they answer their own phones, they return calls as well.

But, having this aid comes with a down side... I am a supervisor. For all intents and purposes, someone has a job inside my home and it is a new role for me to make sure it goes smoothly. It another thing for me to take on when I have already taken on too much. I guess I always assumed autism would get easier as Jimmy got older, but it has only gotten harder. He is bigger, stronger, but his progress isn't keeping pace. I have a sore shoulder. DH had a broken foot. We have both wondered how long we can continue with Jimmy here. That's what these waivers have been designed to do - to keep in the home instead of a residential placement. And that is my hope. He's my baby. He's 8. I can't imagine him anywhere else. I don't know how I would get out of bed in the morning. I know I am not alone in this struggle - have a child with autism is overwhelming and there are easily a million parents who do it - but I feel alone. I think many other moms must feel that way too.

I wish sleep would come, but I am too stressed for it.

Someone else thinks Quest Diagnostics Sucks

And it is way worse than a billing problem... though if you search that, you will find a lot of complaints as well. Today, I am writing a letter to my doctor, Quest, and my insurance company, cc'ing local consumer reporter Liz Crenshaw to see if I can get this cleared up. Not what I want to do on a Sunday, but do I have a choice?

Still no response...

From Quest Diagnostic, either from the e-mail I sent through the website or to their media people. Blogs are considered new media, right? Actually, I thought about it and realized that this is the second time I have seen this bill. Yes folks, I sent them a letter about the then-double billing issue back in the spring. This is the third time now, and it was not processed for the same reason as the second bill - a duplicate billing. Someone from Atlanta did check this particular post, so perhaps the media people took a peek.

I am going to write another letter over the weekend and cc my doctor's office on it. Perhaps they might want to consider getting a new lab service. Big doesn't always mean best.

Anthropologie

So, my friend Lindsey turned me on to Anthropologie today. I think I am little untrendy for their fashion, but their home stuff transforms the mundane, like measuring cups, to objects d'art.



I'm in trouble...

Okay, you can tell it is my first week back to work...

Because of the lack of posting. My Quest Diagnostics rant notwithstanding, I haven't posted anything since my return to work. And I generally make it a policy of not posting about work - nothing gets you canned faster. At this point, I am in the child care circus as we move towards Labor Day. Jimmy's situation is fairly constant - Extended Care - but Jacob has been more piecemeal. A friend is taking Jacob to camp in the morning this week and his regular sitter is picking him up and entertaining him in the afternoon. Next week, another friend who has recently decided to stay at home is watching him before and after camp. She has a new baby, a fact that will probably crank Jacob's desire for a little sister to a whole new level. No, that's not happening, but it doesn't stop him. He will be in wonderful hands, which is what is most important to me.

That last week before school will be mishmash of the boys' cousin, maybe my mom, and another sitter to get us through the week. The fact that they close down the week after school ends and the week before school begins is really the only negative to the program. Jimmy knows school is coming up... he has been scripting the names of his classmates and even seems to be verbally processing that Miss H has moved on and her bestie Miss K is the new teacher. He just wants to go back to what, for him, is his regular life and routine. Summer is an enormous disruption to him on every level. I think the only thing he enjoys about summer is Signal Hill's pool being open.

I have to go and make sure that everyone has clothes, swimsuits and dry towels for tomorrow. My work here never ends.

Quest Diagnostics - Reputable business or not?

So, today I got another invoice from Quest Diagnostics for lab work I had completed just about a year ago. The amount of the bill is $137. My insurance paid this last September, with me paying my portion responsible of $2.58. Since that payment, they have submitted that same bill, with the same date and procedure codes to my insurance company, two more times. Now they have presented me with a bill for services that were paid last September. Are they shaking down my insurance company or are they shaking me down? I just talked to their billing department, which said they were too busy to discuss my account with me. No lie. Craziness.

Maybe the government could do a better job at this. At least, maybe they might want to consider regulating the billing practices of Quest Diagnostics. Stupidity.

Scenes from my life

I went to Teacher Appreciation Day at Staples yesterday. Took the kids in to say hi to my colleagues after they ate breakfast in the minivan with DH. It was all going well until check out, when Jimmy has a full blown, on the floor tantrum with upkicks and wailing. Why you ask? He wanted another one of these.



Nah, nothing is ever easy.

Check out my friend's new food blog...

Lindsey, a long time friend, has started a food blog called the Modern Day Epicurean. She has done a great job, so please check it out.

Health Care Reform E-mail

My dad sent this around so I thought I would cut and paste. Health care reform resonates with my family for a variety of reasons, but probably the most pressing is my brother-in-law. He is 36 and the father of three. He has four masses in his brain and one inside his spinal cord. Aetna paid for the MRI on the brain, doesn't want to pay for the one on the spine (even though it found a mass), and is refusing to authorize a doctor ordered full body MRI to locate additional masses or tumors, even though he had one removed from the lower part of his body ten years ago (making a stronger possibility.) I know that there are plenty of people against reform, but how does the current system make sense in a situation like my brother-in-law's? Still, I think this is a work in progress and we need to continue in substantive debate.

8 ways reform provides security and stability to those with or without coverage

1. Ends Discrimination for Pre-Existing Conditions: Insurance companies will be prohibited from refusing you coverage because of your medical history.

2. Ends Exorbitant Out-of-Pocket Expenses, Deductibles or Co-Pays: Insurance companies will have to abide by yearly caps on how much they can charge for out-of-pocket expenses.

3. Ends Cost-Sharing for Preventive Care: Insurance companies must fully cover, without charge, regular checkups and tests that help you prevent illness, such as mammograms or eye and foot exams for diabetics.

4. Ends Dropping of Coverage for Seriously Ill: Insurance companies will be prohibited from dropping or watering down insurance coverage for those who become seriously ill.

5. Ends Gender Discrimination: Insurance companies will be prohibited from charging you more because of your gender.

6. Ends Annual or Lifetime Caps on Coverage: Insurance companies will be prevented from placing annual or lifetime caps on the coverage you receive.

7. Extends Coverage for Young Adults: Children would continue to be eligible for family coverage through the age of 26.

8. Guarantees Insurance Renewal: Insurance companies will be required to renew any policy as long as the policyholder pays their premium in full. Insurance companies won't be allowed to refuse renewal because someone became sick.

Learn more and get details: http://www.WhiteHouse.gov/health-insurance-consumer-protections/



8 common myths about health insurance reform

1. Reform will stop "rationing" - not increase it: It’s a myth that reform will mean a "government takeover" of health care or lead to "rationing." To the contrary, reform will forbid many forms of rationing that are currently being used by insurance companies.

2. We can’t afford reform: It's the status quo we can't afford. It’s a myth that reform will bust the budget. To the contrary, the President has identified ways to pay for the vast majority of the up-front costs by cutting waste, fraud, and abuse within existing government health programs; ending big subsidies to insurance companies; and increasing efficiency with such steps as coordinating care and streamlining paperwork. In the long term, reform can help bring down costs that will otherwise lead to a fiscal crisis.

3. Reform would encourage "euthanasia": It does not. It’s a malicious myth that reform would encourage or even require euthanasia for seniors. For seniors who want to consult with their family and physicians about end-of life decisions, reform will help to cover these voluntary, private consultations for those who want help with these personal and difficult family decisions.

4. Vets' health care is safe and sound: It’s a myth that health insurance reform will affect veterans' access to the care they get now. To the contrary, the President's budget significantly expands coverage under the VA, extending care to 500,000 more veterans who were previously excluded. The VA Healthcare system will continue to be available for all eligible veterans.

5. Reform will benefit small business - not burden it: It’s a myth that health insurance reform will hurt small businesses. To the contrary, reform will ease the burdens on small businesses, provide tax credits to help them pay for employee coverage and help level the playing field with big firms who pay much less to cover their employees on average.

6. Your Medicare is safe, and stronger with reform: It’s myth that Health Insurance Reform would be financed by cutting Medicare benefits. To the contrary, reform will improve the long-term financial health of Medicare, ensure better coordination, eliminate waste and unnecessary subsidies to insurance companies, and help to close the Medicare "doughnut" hole to make prescription drugs more affordable for seniors.

7. You can keep your own insurance: It’s myth that reform will force you out of your current insurance plan or force you to change doctors. To the contrary, reform will expand your choices, not eliminate them.

8. No, government will not do anything with your bank account: It is an absurd myth that government will be in charge of your bank accounts. Health insurance reform will simplify administration, making it easier and more convenient for you to pay bills in a method that you choose. Just like paying a phone bill or a utility bill, you can pay by traditional check, or by a direct electronic payment. And forms will be standardized so they will be easier to understand. The choice is up to you – and the same rules of privacy will apply as they do for all other electronic payments that people make.

Learn more and get details:
http://www.WhiteHouse.gov/realitycheck
http://www.WhiteHouse.gov/realitycheck/faq

8 Reasons We Need Health Insurance Reform Now

1. Coverage Denied to Millions: A recent national survey estimated that 12.6 million non-elderly adults – 36 percent of those who tried to purchase health insurance directly from an insurance company in the individual insurance market – were in fact discriminated against because of a pre-existing condition in the previous three years or dropped from coverage when they became seriously ill. Learn more: http://www.healthreform.gov/reports/denied_coverage/index.html

2. Less Care for More Costs: With each passing year, Americans are paying more for health care coverage. Employer-sponsored health insurance premiums have nearly doubled since 2000, a rate three times faster than wages. In 2008, the average premium for a family plan purchased through an employer was $12,680, nearly the annual earnings of a full-time minimum wage job. Americans pay more than ever for health insurance, but get less coverage. Learn more: http://www.healthreform.gov/reports/hiddencosts/index.html

3. Roadblocks to Care for Women: Women’s reproductive health requires more regular contact with health care providers, including yearly pap smears, mammograms, and obstetric care. Women are also more likely to report fair or poor health than men (9.5% versus 9.0%). While rates of chronic conditions such as diabetes and high blood pressure are similar to men, women are twice as likely to suffer from headaches and are more likely to experience joint, back or neck pain. These chronic conditions often require regular and frequent treatment and follow-up care. Learn more: http://www.healthreform.gov/reports/women/index.html

4. Hard Times in the Heartland: Throughout rural America, there are nearly 50 million people who face challenges in accessing health care. The past several decades have consistently shown higher rates of poverty, mortality, uninsurance, and limited access to a primary health care provider in rural areas. With the recent economic downturn, there is potential for an increase in many of the health disparities and access concerns that are already elevated in rural communities. Learn more: http://www.healthreform.gov/reports/hardtimes

5. Small Businesses Struggle to Provide Health Coverage: Nearly one-third of the uninsured – 13 million people – are employees of firms with less than 100 workers. From 2000 to 2007, the proportion of non-elderly Americans covered by employer-based health insurance fell from 66% to 61%. Much of this decline stems from small business. The percentage of small businesses offering coverage dropped from 68% to 59%, while large firms held stable at 99%. About a third of such workers in firms with fewer than 50 employees obtain insurance through a spouse. Learn more: http://www.healthreform.gov/reports/helpbottomline

6. The Tragedies are Personal: Half of all personal bankruptcies are at least partly the result of medical expenses. The typical elderly couple may have to save nearly $300,000 to pay for health costs not covered by Medicare alone. Learn more: http://www.healthreform.gov/reports/inaction

7. Diminishing Access to Care: From 2000 to 2007, the proportion of non-elderly Americans covered by employer-based health insurance fell from 66% to 61%. An estimated 87 million people - one in every three Americans under the age of 65 - were uninsured at some point in 2007 and 2008. More than 80% of the uninsured are in working families. Learn more: http://www.healthreform.gov/reports/inaction/diminishing/index.html

8. The Trends are Troubling: Without reform, health care costs will continue to skyrocket unabated, putting unbearable strain on families, businesses, and state and federal government budgets. Perhaps the most visible sign of the need for health care reform is the 46 million Americans currently without health insurance - projections suggest that this number will rise to about 72 million in 2040 in the absence of reform. Learn more: http://www.WhiteHouse.gov/assets/documents/CEA_Health_Care_Report.pdf



SUPPORT HEALTH CARE & HEALTH INSURANCE REFORM!

NJ Can, Why Not Virginia?

N.J. expands coverage for autism, developmental disability therapies
by Susan K. Livio/Statehouse Bureau
Thursday August 13, 2009, 3:45 PM

NEW BRUNSWICK -- New Jersey became the 15th state today to enact a law requiring insurance companies to cover the screening and therapeutic treatment for children up to age 21 who are diagnosed with autism and other developmental disabilities.

The legislation overcame the opposition of business associations and insurance companies, who've predicted the measure will make health coverage unaffordable. Insurers have denied coverage for speech, occupational, physical and behavioral therapies because they deemed it "educational," not medical in nature, or because the therapy would not restore a child's ability to speak if the child never could speak at all.

Click here to read the rest of the article...

You have to feel badly...

I signed up for one of those Organize for America slots for Health Care Reform. Yes, I have better things to do with my time, so I tried to call the office to speak to someone. Organize for America has my congressman's number wrong.

Organizing for America
Rachel --

Thank you for signing up to drop by Rep. Frank Wolf's local office in Herndon. We've received early reports of thousands of folks stopping by local offices, sharing their personal health care stories, and getting a welcome reception.

Please note that this is not an official scheduled meeting with your representative or your representative's staff. Rather, you will be part of a steady stream of supporters dropping by all day. So please stop in on the day you signed up for, drop off materials, share the reasons you support reform -- and most importantly, thank those representatives who are working hard for reform.

Rep. Frank Wolf
Herndon Office
13873 Park Center Road, Suite 130
Herndon, VA 20171 (Map)

Phone: (703) 790-5800
Please call ahead to let them know you will be visiting the office.

The prefix is turned around - it's 709. So when I called, I wound up speaking to some poor businessman, who by his own estimation, has taken thousands of phone calls for Congressman Wolf's office related to this e-mail. I let both the Herndon and DC offices of the Rep. Wolf know the error, as I have had no luck tracking down a phone number for Organize for America. Some poor man who is trying to get his work done is getting his day interrupted by Organize for America callers.

Oh, and I am for health care reform (my autism experience has proven to me the need for change), though I am trying to make it through this document for HB3200 to see if I can support everything its about. I am through blindly supporting things along party lines (but that is another post for another day.) I wonder if they have an abridged version, without the congressional jargon and legalese.

Mommy Bloggers Get Free Stuff??? Why Don't I???

It's not like I miss the ethical implications cited in this article, but damn, I want some free stuff. How did I miss the boat on this one? Maybe PR and marketing companies aren't necessarily interested in selling to autistic kids.

A Great Toy List for Kids With Special Needs

I love this list. Only two toys were specifically for autism, but Jimmy might get the gear one for Christmas. Worth checking out.

Oh So Sweet Treats

Yesterday, I stopped by the new cupcake store in Old Town, Oh So Sweet Treats. The cupcakes were good. I tend to like really moist cakes (my fave is Linda's Fudge Cake from the Cheesecake Factory, which practially drips), so the cake was a little on the dry side for me, but the frosting is amazing as was the selection of cupcakes on website. According to the article in the paper today, they rotate the selection in store. Hopefully this new business does well.

My Laptop Is Back...

Thanks to the wonderful MacHeaven. I may need a new logic board in the future, but the important thing was that I didn't need it today. They cleaned up the corrosion and returned my MacBook to me for $90. If you are in Northern Virginia, I highly recommend them. Happy, happy, happy!!!

It's been a crazy couple of weeks. My brother-in-law has some manner of tumor in his brain and vertebrate, though we know it isn't cancerous. My dad had a minor stroke, but is out of the hospital and doing extremely well. I was headed to Texas to see them both, but for a variety of reasons I didn't make it down. Not the least of which is Jimmy, who this week tried to go out the window because he could get it open. I am looking for something to keep the windows closed and praying we never have a fire. By the time I am done, every possible exit to this home will have a lock or some barrier against quick exit. I wish he had some sense of fear. Tonight, he tried to slide down the bannister. But back to not going to Texas... the window incident was really unnerving. It definitely played into my decision not to go this weekend.

My weekend is booked with the soccer, the UFC, and the WEC. Am I the only person in the world who loves the UFC, gymnastics, and figure skating? ;)

Jody Wagner Supports Autism Insurance Mandates...

At least according to her campaign, who were very nice in answering my questions. The answer in open more DD waiver slots was a little hesitant given the financial straights in Richmond, but I appreciate the answer. I talked to someone in Bill Bolling's campaign office (very nice guy, like TC or TJ or something) and they are supposed to get back to me with an answer.

Now if I could get a formal response from Creigh Deeds campaign!

Burger King - Wha???

A Burger King in Missouri kicked a six month old baby out for bare feet. Seriously...

When stuff like this happens, I feel like the collective IQ of the nation has fallen by two point. Dumb.

National Night Out

I took the boys to the National Night Out up at the middle school. Ron Winder, the animal control officer, arranged to the arrival of some Star Wars characters... really well done Star Wars characters. Jacob was over the moon. Jimmy had a blast as well.

Bob McDonnell's Response

Bob McDonnell's campaign clocks in with the first response.

Thank you for contacting the McDonnell campaign. We very much appreciate you taking the time to get in touch with us.

Bob McDonnell understands the hardships many families across the Commonwealth face as they deal with the daily struggles of raising a child with Autism Spectrum Disorder.

As Governor, Bob McDonnell will be committed to working with the autistic community to address their concerns and find a solution. The solution must take into consideration affordability for families and small businesses, quality care and flexibility on offering specialized, non-medical services.

Bob McDonnell is interested in looking at ideas such as establishing a tuition assistance grant program for those parents seeking specialized care for their autistic children.

As a legislator, Bob McDonnell voted yes on several pieces of legislation pertaining to autism, including requiring health insurance to provide coverage for biologically based mental illnesses which includes autism.

Thank you again for your email. Please do not hesitate to contact us again with any further questions or concerns.

What do you think? I have a lot of concerns about this response, but I will reserve dissecting it just yet as I have sent a follow up e-mail with more specific questions. When I get that back, I will start to form a more solid opinion.

H1N1 Vaccine Contains What????

I will start by saying that I am not a big Jenny McCarthy devotee, not a big vaccine believer... I think the onset of Jimmy's autism was marked by his ear infections and his frequent prescription of antibiotics, if anything. Though Jimmy wasn't diagnosed when Jacob's immunization schedule began, I knew that more than likely he was autistic and had read pretty extensively on vaccines. Since I knew Thimerosol had been removed from the vaccines for the most part and had other thoughts regarding Jimmy's onset, I opted to vaccinate. Jacob is a healthy five year old child. I have no regrets about making that decision as a parent.

I am appalled, given the potential severity of an outbreak in the schools, that a vaccine was developed for this H1N1 outbreak with Thimerosol. I have sworn up, down, and sideways that I would make sure both boys got their H1N1 vaccinations. They always get their regular flu shots, as do I (a history of respiratory infections puts me in a high risk category.) But I now have a little fear. From the CBS interview, previewed below, I am honestly wondering if Kathleen Sebelius' head in merely in the sand or if it shoved firmly up her... you get the idea:

Couric: Thimerosol, a preservative which was taken out of childhood vaccines a while ago, because there was fear it could be linked to autism, is being used in some batches of the H1N1 vaccine. Are you concerned that will keep some parents from having their children vaccinated?

Sebelius: Well, we want to make it clear that this is a voluntary vaccination program. But study after study, scientist after scientist, has determined that there really is no safety risk with thimerosol. There is concern about parents of why autism rates are rising. And, as you know, we've got some special NIH studies, thanks to the president, focused on just what is going on.

Unless there is a better option, I think you will see a large number of autistic children that are sickened by the flu outbreak out of fear of this vaccine. Was adding Thimerosol really necessary?

The Deeds e-mail...

A little bit longer... I will let you know when I get answers from either candidate or their campaigns.

Mr. Abbey-

I am the mother of an autistic child and a sometimes blogger. I met your candidate several months ago and have yet to fully embrace him (though my husband made a donation to the campaign) completely based on the way he answered my question about autism insurance mandates. I supported and got our local delegate to cosponsor HB1588, which never made it out of the committee. When I asked him about insurance mandates, Mr. Deeds said the "market would adjust," so there was no need for mandates. After reflection, I came to the conclusion that his statement reflected the views of the lobbyists who successfully killed both the house and Senate versions of this year's legislation. I gave my vote to Brian Moran in the primary because I found his stance on the issue to be more thoughtful and had more hope for a governor that would meet the needs of my child and family, families that routinely pay thousands of dollars in uncovered medical expenses for therapeutic treatment for kids.

Today, I e-mailed Phil Cox and asked him the following question. I think Mr. Deeds should answer these questions as well. Though I have long voted Democratic, I cannot in good conscience vote for a candidate that has not given thoughtful consideration to policy for a disorder that affects in 1 in a 150 children in this country. My Twitter exchanges with Mr. Deeds show me that he is engaged and responsive and I appreciate his accessibility, but I think he really needs to look at his answer to my question. He is asking families to wait for insurance companies to do the right thing. That doesn't happen in the real world - they are beholden to their shareholders and the bottom line. They are perfectly content to leave our children untreated medically and therapeutically, limiting their futures, and shifting the burden for their care to the state as adults who require intensive services and institutionalized care.

When will Mr. Deeds share his position on autism in Virginia, particularly how it pertains to needed insurance mandates to help families have medical and therapuetic treatments covered (see HB 1588, sponsored by Bob Marshall), special education funding from Richmond, and the growing need for Medicaid waiver services? 1 in 150 children are diagnosed with autism. With early intervention, education and proper medical treatment, many of these children can grow into tax paying, productive adults. With help to families, it will reduce the 80-85% divorce rate in couples raising autistic children. I have called, blogged, and even Tweeted, but now with November coming, I must have an answer as I have to vote on this very important issue to be a voice for the future of Virginia and the future of my children. I await your response and appreciate your time.

I could be completely wrong about this...

...But all the press I read leads me to believe that military families with autism have an easier time getting things through Congress than the rest of us. I could be wrong, but I even remember seeing that they get ABA through their health insurance. Granted, they get the bonus of portable IEPs and new schools every two years, at least. I am not sure that I would ever want that.

My e-mail to Phil Cox, Bob McDonnell's campaign manager...

Mr. Cox -
When will Mr. McDonnell share his position on autism in Virginia, particularly how it pertains to needed insurance mandates to help families have medical and therapuetic treatments covered (see HB 1588, sponsored by Bob Marshall), special education funding from Richmond, and the growing need for Medicaid waiver services? 1 in 150 children are diagnosed with autism. With early intervention, education and proper medical treatment, many of these children can grow into tax paying, productive adults. With help to families, it will reduce the 80-85% divorce rate in couples raising autistic children. I have called, blogged, and even Tweeted, but now with November coming, I must have an answer as I have to vote on this very important issue to be a voice for the future of Virginia and the future of my children. I await your response and appreciate your time.


...

Now to work on my e-mail to the Deeds camp...

Demand change in the state races... via Twitter...

For a few months now, I have been following the Virginia statewide races. I have always been a civic minded voter, but having Jimmy has really narrowed my focus into demanding answers from these candidates about autism. I am tired of the influence of lobbyists in Richmond whose money is more important that our voices and the needs of these children. Autism is a medical condition. Medical conditions and their treatments, both medicinal and therapeutic, should be covered by insurance. I know Jody Wagner supports insurance mandates (per conversation with her staff in Virginia Beach.) I know Creigh Deeds thinks the market (read: insurance companies) will adjust to meet the needs of these kids, a fallacy likely perpetuated by those lovely Richmond lobbyists. I did talked to staff of Bob McDonnell and while I got a lot of sympathy, I heard nothing that resembled a firm policy statement. I have no idea about Bill Bolling.

I would like to encourage voters in Virginia who care about these unmet needs of families dealing with autism to put this out to the forefront using the latest social media technology... Twitter. Set up an account and following @creighdeeds, @lgbillbolling, @jodywagner, and @bobmcdonnell. Send them notes... you can do a lot in 140 characters. Include (and if you are new, it will make sense after a while) the hashtags #VAGOV and #autism to get this trending. Several of the candidates personally follow the feeds some or all of the time, with staff picking up the slack. I am one person, but if we can get more voices out there, we can see our needs discussed in the campaigns and the debates - insurance, education, services. The needs of our kids have been ignored and marginalized far too long. Let's make change happen.

Feel free to post this to other lists and forward via e-mail. I would love to see this happen for my son Jimmy, his classmates, and all of the other beautiful kids I have met with autism.

Thanks,
Rachel
Realityblah.com

Adding another drug to the cocktail...

So Jimmy has been having a lot of problems with anxiety and OCD issues lately. The Risperdal hasn't addressed them to the degree that we had hoped. The doctor prescribed Zoloft for him. I am a little anxious about it. A third medication seems like a lot. Now's the time to try, before school starts, but I am not feeling... well, great about it. I wish autism was a standardized disorder where you could do x, y, and z and see real benefit. It's just all so hit and miss.

With this new worry, I might need anxiety medication.

Depeche Mode

Well, for the ninth time in 22 years, I went to see Depeche Mode live last night. Phenomenal as always. A good number of acts from the 80s and 90s are a mishmash of old and new members, doing some limited recording, often relying on their old catalog for their acts. Depeche Mode is every bit the active band, with their three core members intact (Vince Clarke left in the early 80s and Alan Wilder in the 1990s.) The were touring in support of their new album, which they did several songs from. The remainder of the two hours was sort of a review of the previous 11. They played Master and Servant, Strangelove, Walking in my Shoes, Enjoy the Silence, Home... so much fabulous music.

Dave Gahan is consummate showman. Martin Gore is mezmorizing. Andrew Fletcher... well, he is more than the guy standing up behind the synthesizer. They are truly amazing live. We had seats right next to the mixing board, theoretically, the apex for sound in a venue. T and her eldest Miss M joined me... it was a great night. Thank you, Depeche Mode.

Brilliant...

Thanks to William Shatner, I totally understand Sarah Palin now... Thanks for that...

Speaker Pelosi is begging parents to stop calling...

An e-mail from Autism Votes...

"Dear Autism Advocate,

Thank you so much for all of your hard work over the last few weeks as you have continued to call, email, and fax Speaker Pelosi’s office.

THIS JUST IN!...House Speaker Nancy Pelosi has heard you loud and clear! We are now in a very constructive dialogue with the Speaker's office about the importance of ending autism insurance discrimination.

Thank you again for your patience, your perseverance and for recruiting your friends and family to make these calls."

"1. IT'S TIME TO STOP CALLING SPEAKER PELOSI. We will be refocusing our efforts shortly so PLEASE STAY TUNED to our emails! For right now we need all calls, faxes, and emails going to the Speaker’s office to stop!

2. SPREAD THE WORD! Tell everyone you asked to call "thank you so much" and that you will keep them posted on next steps!"

Speaker Pelosi, I will miss talking to your voicemail. That she is asking us to stop calling is too funny. I was planning a visit with Jimmy actually - I guess she just spared me a trip.

Our friends in Cebu, at it again...

Seriously, they just get better and better. Beats the heck out of cranking out license plates.