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...