Thursday, April 09, 2009
Playing with Twitter...
I signed up with Twitter and I am now playing with it for the blog... You can keep track of me and my mundane existence on the sidebar.
Go to Ask.com to raise money for Autism Speaks...
Go to Ask.com and add an autism skin to your Ask.com page view. For each skin in use, Ask.com will give money to Autism Speaks. Additionally, you have the opportunity to answer 16 questions about autism and accumulate points. For every point you earn, Ask.com will contribute 1 cent to Autism Speak's work for autism awareness and research for a cure. Please check back often and keep earning points. Autism Speaks - It's time to listen!
Wednesday, April 08, 2009
Washington Post OpEd :Still Overlooking Autistic Adults
Still Overlooking Autistic Adults
By Linda H. Davis
Saturday, April 4, 2009; A15
Question: What coming social expenditure will cost more than a third of this year's budget for the Department of Health and Human Services and be larger than the entire current budget of the Energy Department?
Answer: The bill for the tide of autistic children entering adulthood over the next 15 years, an estimated $27 billion annually in current, non-inflation-adjusted dollars by the end of that period. The number of autistic children expected to need extensive adult services by 2023 -- more than 380,000 people -- is roughly equal to the population of Minneapolis. If a town were created to house this group of people and their caregivers -- for you can't separate the two -- it would exceed the population of all but six U.S. cities. If they formed a state, it would have four electoral votes.
But most of these cognitively impaired citizens don't vote. Most of them can't live alone or work in public places. Many can't even take public transportation by themselves.
Yet as World Autism Awareness Day passed this week, with the wrecking ball swinging at all levels of social services in this devastated economy, the challenges of adult autism continue to be overlooked. Many news reports focus on whether vaccines cause autism, the need for a cure or the education of autistic children. Autistic adults are relegated to the sidelines. Even the Obama administration, which has pledged better care for disabled Americans, including those with autism, has not been specific enough about its plans for those who will probably never be able to live independently or be part of the traditional workforce. "Improving life-long services for people with ASD," as autism spectrum disorder is known, is a worryingly broad, detail-free promise in the White House agenda published online.
I understand that no one wants to look at a child and imagine the clunky, in-your-face adult he or she will become or think about the stares he or she will induce. When I look at my pudgy 22-year-old son, Randy, still sweet-faced but so obviously disabled, I cannot locate the blond cherub he used to be, gripping his stuffed brown bear. While writing this, I listened to Randy getting into the refrigerator (he's home again from his supervised job -- two mornings a week -- because of another problem with the overwhelmed human services provider funded by the Commonwealth of Massachusetts), and wonder who will love or at least protect him when he ends up in a group home run by an underpaid, overworked staff.
Randy's father and I are keeping him at home as long as possible, even as I'm battling an incurable cancer. The inadequate state services and perilously thin funding have seriously hampered our ability to work while caring for our son. I feel as though we're playing Russian roulette with Randy's future, yet I cling to my gentle son, unwilling to entrust him to a system that grows more fragile than I do.
Randy is just one of hundreds of thousands of autistic adults to whom society pays frighteningly little attention. The price of their care will affect all Americans, not only those who have autistic children. Along with housing, day programs, transportation to those programs or jobs, and higher-than-average medical costs, adults with autism require steady supervision and support. Consider: A well-behaved, relatively high-functioning person such as my son could manage in an environment that has a ratio of three clients per staff member. But many autistic people require a one-to-one ratio. This is a serious hurdle, not least because of the high turnover rate among those who provide direct care, which stems in part from their low wages. Not everyone is temperamentally suited to this work. People with autism present myriad challenges: They can sometimes be violent, sometimes are self-abusive, suffer psychological meltdowns, or behave in many socially unacceptable ways, to say the least. Women, traditionally cast in the caregiver role, are at risk of greater physical harm when caring for autistic adults than for children. At expected rates, we will need to find an additional million caregivers, people who must have the right personal qualities to work with autistic individuals but who are willing and able to work for low wages. This is no small challenge. We not only must train people but also show that we value this work by paying them better.
In 15 years, the cost of care just for the autistic children entering adulthood over that time will be about equal to the current state budget of Tennessee. Meanwhile, services are dangerously strained, and the influx of autistic adults is underway. This country urgently needs to focus on adult autism, new models of care and new sources of funding. Before the looming tidal wave delivers another crushing blow to our economy, we should have a national discussion. It should begin today.
Linda H. Davis is the author, most recently, of "Charles Addams: A Cartoonist's Life" and is president of the nonprofit SAGE Crossing Foundation, formed to create a farmstead for autistic adults. Her husband, Chuck Yanikoski, who is treasurer of SAGE, contributed to this piece.
By Linda H. Davis
Saturday, April 4, 2009; A15
Question: What coming social expenditure will cost more than a third of this year's budget for the Department of Health and Human Services and be larger than the entire current budget of the Energy Department?
Answer: The bill for the tide of autistic children entering adulthood over the next 15 years, an estimated $27 billion annually in current, non-inflation-adjusted dollars by the end of that period. The number of autistic children expected to need extensive adult services by 2023 -- more than 380,000 people -- is roughly equal to the population of Minneapolis. If a town were created to house this group of people and their caregivers -- for you can't separate the two -- it would exceed the population of all but six U.S. cities. If they formed a state, it would have four electoral votes.
But most of these cognitively impaired citizens don't vote. Most of them can't live alone or work in public places. Many can't even take public transportation by themselves.
Yet as World Autism Awareness Day passed this week, with the wrecking ball swinging at all levels of social services in this devastated economy, the challenges of adult autism continue to be overlooked. Many news reports focus on whether vaccines cause autism, the need for a cure or the education of autistic children. Autistic adults are relegated to the sidelines. Even the Obama administration, which has pledged better care for disabled Americans, including those with autism, has not been specific enough about its plans for those who will probably never be able to live independently or be part of the traditional workforce. "Improving life-long services for people with ASD," as autism spectrum disorder is known, is a worryingly broad, detail-free promise in the White House agenda published online.
I understand that no one wants to look at a child and imagine the clunky, in-your-face adult he or she will become or think about the stares he or she will induce. When I look at my pudgy 22-year-old son, Randy, still sweet-faced but so obviously disabled, I cannot locate the blond cherub he used to be, gripping his stuffed brown bear. While writing this, I listened to Randy getting into the refrigerator (he's home again from his supervised job -- two mornings a week -- because of another problem with the overwhelmed human services provider funded by the Commonwealth of Massachusetts), and wonder who will love or at least protect him when he ends up in a group home run by an underpaid, overworked staff.
Randy's father and I are keeping him at home as long as possible, even as I'm battling an incurable cancer. The inadequate state services and perilously thin funding have seriously hampered our ability to work while caring for our son. I feel as though we're playing Russian roulette with Randy's future, yet I cling to my gentle son, unwilling to entrust him to a system that grows more fragile than I do.
Randy is just one of hundreds of thousands of autistic adults to whom society pays frighteningly little attention. The price of their care will affect all Americans, not only those who have autistic children. Along with housing, day programs, transportation to those programs or jobs, and higher-than-average medical costs, adults with autism require steady supervision and support. Consider: A well-behaved, relatively high-functioning person such as my son could manage in an environment that has a ratio of three clients per staff member. But many autistic people require a one-to-one ratio. This is a serious hurdle, not least because of the high turnover rate among those who provide direct care, which stems in part from their low wages. Not everyone is temperamentally suited to this work. People with autism present myriad challenges: They can sometimes be violent, sometimes are self-abusive, suffer psychological meltdowns, or behave in many socially unacceptable ways, to say the least. Women, traditionally cast in the caregiver role, are at risk of greater physical harm when caring for autistic adults than for children. At expected rates, we will need to find an additional million caregivers, people who must have the right personal qualities to work with autistic individuals but who are willing and able to work for low wages. This is no small challenge. We not only must train people but also show that we value this work by paying them better.
In 15 years, the cost of care just for the autistic children entering adulthood over that time will be about equal to the current state budget of Tennessee. Meanwhile, services are dangerously strained, and the influx of autistic adults is underway. This country urgently needs to focus on adult autism, new models of care and new sources of funding. Before the looming tidal wave delivers another crushing blow to our economy, we should have a national discussion. It should begin today.
Linda H. Davis is the author, most recently, of "Charles Addams: A Cartoonist's Life" and is president of the nonprofit SAGE Crossing Foundation, formed to create a farmstead for autistic adults. Her husband, Chuck Yanikoski, who is treasurer of SAGE, contributed to this piece.
Sunday, April 05, 2009
More articles related to MHC and autism...
My dad's response to his little homework assignment... His isn't a doctor, but an extremely well read PhD, who was pre-med for his first few years of college. I wouldn't let him operate on me, but I think he understand the terminology and the theory behind medical scholarship.
"I read through the article. It suggests possibilities that are quite interesting. However, it is extremely technical. You might try the following.
I conducted a search of Google as follows:
Search terms: autism "HLA-B27"
This yields the following results:
HLA and Autism
www.springerlink.com/index/735K31284L316446.pdf
Autism and Lyme
www.canlyme.com/autismlyme.html
etc.
I suggest you read some of the articles. Perhaps you have hit on something important. While there is no cure at this time for diseases associated with HLA-B27, it may be possible to effect some improvement, even reversal, through development of stem cells that modify the histocompatibility antigen."
"I read through the article. It suggests possibilities that are quite interesting. However, it is extremely technical. You might try the following.
I conducted a search of Google as follows:
Search terms: autism "HLA-B27"
This yields the following results:
HLA and Autism
www.springerlink.com/index/735K31284L316446.pdf
Autism and Lyme
www.canlyme.com/autismlyme.html
etc.
I suggest you read some of the articles. Perhaps you have hit on something important. While there is no cure at this time for diseases associated with HLA-B27, it may be possible to effect some improvement, even reversal, through development of stem cells that modify the histocompatibility antigen."
An article about the American vintner in Japan
(06-17) 04:00 PDT Ashikaga , Japan -- Bruce Gutlove was working as a wine consultant in St. Helena in 1989 when he got the call that changed his life forever, even though at the time he said, "No, thanks," and hung up.
Gutlove's friends, Matt and Fred Cline from Cline Cellars in Sonoma, had sold some grapes to a school for mentally disabled people in Japan, and had visited there to see how they planned to make wine. The Clines made some recommendations to the school's founder, who asked if they knew someone who could help make the necessary changes.
"My name came up. I'm not sure why," says Gutlove, 42. "Maybe it's because my friends thought I should spend time in a mental institution in rural Japan."
After Gutlove said no on the phone a couple of times, the school sent someone to meet him in San Francisco. He was moved enough by the interest in him to agree to help with one harvest at the school, which is located about an hour north of Tokyo by train.
"I liked what I was doing in Napa," says Gutlove, who had worked at Cakebread Cellars, Robert Mondavi Winery, Trefethen Vineyards and Merryvale Vineyards before going into consulting. "I said I would stay for six months."
He's been there ever since.
Gutlove was impressed by the mission of Noboru Kawada, who founded Cocoromi Gakuen near the city of Ashikaga in 1969. Kawada wanted to give mentally disabled Japanese a future beyond the way society then usually treated them -- by "giving them a lot of drugs and putting them in a room somewhere," says Kawada's daughter, Chieko Ikegami.
Kawada and Ikegami put their "students" -- most are adults, but Cocoromi is officially a school -- to work on clearing the hill behind the facility to grow grapes, as well as on various other agricultural projects.
"It's a good life lesson," Ikegami says. "You work hard all summer and you can taste the fruits in the fall."
A classroom in the fields
The school teaches students to be more self-reliant and agriculture is a big part of that. One goal is to move students into off-campus apartments. The school now has 90 students on campus and another 40 in Ashikaga in group homes.
In 1984, Coco Farm and Winery -- the name is short for "Cocoromi" -- was formed as a separate company for legal reasons, because a school cannot sell wine. Coco Farm has a vineyard right behind the facility where it grows grapes with student labor and it also buys grapes. Coco Farm, which neighbors the school, also grows and sells shiitake mushrooms.
Coco Farm has 20 full-time employees, most of whom are not mentally disabled. The students do all the remaining tasks and are paid for their work.
"Sometimes we'll have 40 students in the vineyard during harvest," Gutlove says. Before he arrived, there was no true winemaker.
Gutlove moved into a dormitory with the students in 1989 and quickly learned their idiosyncrasies had both advantages and disadvantages.
"Harvest is a bit chaotic," Gutlove says. "You're carrying 8 kilos (about 17 1/2 pounds) down the hill. Someone will fall and roll down the hill and knock over the next person, and they'll fall. Grapes go everywhere."
However, he and Ikegami say there are no better workers for some of winemaking's more monotonous jobs.
"If you give a student a task, once they understand it, they never get bored," Ikegami says. "One boy stands on the hill all day long waiting for crows. When a crow comes, he rings a bell."
In bottling, at first Gutlove was frustrated by workers who would label every bottle upside-down, or make a small tear in the same corner of every label. But then he learned to find the right person for the right task.
"They have a lot of endurance," Gutlove says. "They'll pull the bottom two leaves off every cluster. It's very boring, very repetitive. They do it with enthusiasm."
Gutlove says the students are also superb at quality control, watching 2, 200 bottles go by per hour and catching any one that contains minute amounts of cork dust.
"Two students go through 150 to 200 tons of grapes a year, taking out even the smallest amount of rot," he says. "They're very good at it."
Ikegami says it's difficult to get the students to take a day off because they love to work. And she says with their money, they often buy Coco Farm wines, which are available in local stores as well as some stores in Tokyo, and by mail order. Today they hold their own against other Japanese wines, which are generally a sorry lot.
But community spirit was the reason most people bought Coco Farm wines when Gutlove arrived. He says he and Kawada made an early agreement that "we would not use the fact that mentally disabled people were making it as an excuse for poor wine. (Kawada) was happy about that."
Japan's weather has long frustrated attempts at growing world-class wine grapes. Beyond cold winters, humid summers that don't cool off at night, high winds and year-to-year unpredictability, there's a month-long rainy season in the middle of summer that both drenches the vines during flowering season and fosters a cornucopia of mold.
"If you look at the data on humidity and temperature, this is not like anywhere else," Gutlove says. "The most immediate thing I can come up with is the East Coast of the United States, from Virginia to Missouri."
Moreover, Japanese consumers are willing to pay high prices for table grapes, making wine grapes an uninviting proposition for most farmers.
Quality of grapes was poor
"When I first got here, I couldn't believe the poor quality of grapes," Gutlove says of fruit Coco Farm bought from outsiders. "Not ripe, ripeness was uneven, rot. After the first harvest I went down and talked to the growers. It was not a pleasant time. Finally I came to understand they were growing only table grapes. The ones that weren't good enough to be table grapes, they were selling to us as wine grapes."
Gutlove says he told a group of farmers to reduce their yields, change varieties from Cabernet Sauvignon and Merlot to something better suited to the weather and spend more time in their vineyards pruning and fighting rot.
"They took my translator aside and said, 'Take him out of here,' " he says, laughing.
Though he has a bachelor's in plant physiology from State University of New York-Stonybrook and studied in the master's program in enology at UC Davis, Gutlove says his focus in California was always winemaking, not grapegrowing. However, after he met his wife-to-be, Ryoko, at a party in Tokyo in 1991 and realized he would be spending more time in Japan than he thought, Gutlove began seeking grapes that would adapt well to Japan's weather. He also moved out of the school dormitory.
He currently makes sparkling wine with a blend of Riesling Lion, a hybrid grape developed by the Suntory Group beverage company, and Koshu, a grape unique to Japan that is well-adapted to the conditions yet neutral in flavor. Though expensive at 6,000 yen per bottle ($55), the 1998 Novo demi-sec sparkling wine is Coco Farm's best product, crisp and yeasty, with high acidity balancing the 3 percent residual sugar. An earlier vintage of this wine was served at a G-8 Kyushu-Okinawa Summit in Nago Cityin 2000, the first time a Japanese wine was served at such an occasion, Gutlove says.
Coco Farm's best still wine is made from Kerner, a hybrid grape grown in Germany and Austria that Gutlove says was created in the 1950s. The 2002 Cocoromi Series Kerner ($18) smells and tastes fresh and grassy, with a hint of tart apple -- like a Sauvignon Blanc without the mineral notes.
Winemaker can experiment
Among the winery's 15,000 cases of wine produced per year, Gutlove also makes wine from oddities like Muscat Bailey A, a hybrid of red Muscat with the American table grape Bailey. He's experimenting in the hillside vineyard beside the school with the Missouri red-wine favorite Norton, as well as Tannat, which seems the most promising. The wines are hit-or-miss. But though he says he misses Napa Valley, not least for the quality of grapes, Gutlove says he has no plans to move on soon.
"I've been asked time and again why I'm still here," he says. "It's the students and the teachers. Just to see the way that they work. The energy and enthusiasm they put into it. Winemaking has consumed my entire life. Everything about it I love, on so many levels. In my darker times I think it might be self-indulgent. I was raised in a Christian family. To be able to be involved with something like this is perfect. To be able to do what I love and help people overcome obstacles."
After all, Cocoromi means "challenge."
Though Gutlove would like to find U.S. distribution, Coco Farm wines are not currently available here, but the winery is open to visitors in Japan. For information, go to cocowine.com.
Gutlove's friends, Matt and Fred Cline from Cline Cellars in Sonoma, had sold some grapes to a school for mentally disabled people in Japan, and had visited there to see how they planned to make wine. The Clines made some recommendations to the school's founder, who asked if they knew someone who could help make the necessary changes.
"My name came up. I'm not sure why," says Gutlove, 42. "Maybe it's because my friends thought I should spend time in a mental institution in rural Japan."
After Gutlove said no on the phone a couple of times, the school sent someone to meet him in San Francisco. He was moved enough by the interest in him to agree to help with one harvest at the school, which is located about an hour north of Tokyo by train.
"I liked what I was doing in Napa," says Gutlove, who had worked at Cakebread Cellars, Robert Mondavi Winery, Trefethen Vineyards and Merryvale Vineyards before going into consulting. "I said I would stay for six months."
He's been there ever since.
Gutlove was impressed by the mission of Noboru Kawada, who founded Cocoromi Gakuen near the city of Ashikaga in 1969. Kawada wanted to give mentally disabled Japanese a future beyond the way society then usually treated them -- by "giving them a lot of drugs and putting them in a room somewhere," says Kawada's daughter, Chieko Ikegami.
Kawada and Ikegami put their "students" -- most are adults, but Cocoromi is officially a school -- to work on clearing the hill behind the facility to grow grapes, as well as on various other agricultural projects.
"It's a good life lesson," Ikegami says. "You work hard all summer and you can taste the fruits in the fall."
A classroom in the fields
The school teaches students to be more self-reliant and agriculture is a big part of that. One goal is to move students into off-campus apartments. The school now has 90 students on campus and another 40 in Ashikaga in group homes.
In 1984, Coco Farm and Winery -- the name is short for "Cocoromi" -- was formed as a separate company for legal reasons, because a school cannot sell wine. Coco Farm has a vineyard right behind the facility where it grows grapes with student labor and it also buys grapes. Coco Farm, which neighbors the school, also grows and sells shiitake mushrooms.
Coco Farm has 20 full-time employees, most of whom are not mentally disabled. The students do all the remaining tasks and are paid for their work.
"Sometimes we'll have 40 students in the vineyard during harvest," Gutlove says. Before he arrived, there was no true winemaker.
Gutlove moved into a dormitory with the students in 1989 and quickly learned their idiosyncrasies had both advantages and disadvantages.
"Harvest is a bit chaotic," Gutlove says. "You're carrying 8 kilos (about 17 1/2 pounds) down the hill. Someone will fall and roll down the hill and knock over the next person, and they'll fall. Grapes go everywhere."
However, he and Ikegami say there are no better workers for some of winemaking's more monotonous jobs.
"If you give a student a task, once they understand it, they never get bored," Ikegami says. "One boy stands on the hill all day long waiting for crows. When a crow comes, he rings a bell."
In bottling, at first Gutlove was frustrated by workers who would label every bottle upside-down, or make a small tear in the same corner of every label. But then he learned to find the right person for the right task.
"They have a lot of endurance," Gutlove says. "They'll pull the bottom two leaves off every cluster. It's very boring, very repetitive. They do it with enthusiasm."
Gutlove says the students are also superb at quality control, watching 2, 200 bottles go by per hour and catching any one that contains minute amounts of cork dust.
"Two students go through 150 to 200 tons of grapes a year, taking out even the smallest amount of rot," he says. "They're very good at it."
Ikegami says it's difficult to get the students to take a day off because they love to work. And she says with their money, they often buy Coco Farm wines, which are available in local stores as well as some stores in Tokyo, and by mail order. Today they hold their own against other Japanese wines, which are generally a sorry lot.
But community spirit was the reason most people bought Coco Farm wines when Gutlove arrived. He says he and Kawada made an early agreement that "we would not use the fact that mentally disabled people were making it as an excuse for poor wine. (Kawada) was happy about that."
Japan's weather has long frustrated attempts at growing world-class wine grapes. Beyond cold winters, humid summers that don't cool off at night, high winds and year-to-year unpredictability, there's a month-long rainy season in the middle of summer that both drenches the vines during flowering season and fosters a cornucopia of mold.
"If you look at the data on humidity and temperature, this is not like anywhere else," Gutlove says. "The most immediate thing I can come up with is the East Coast of the United States, from Virginia to Missouri."
Moreover, Japanese consumers are willing to pay high prices for table grapes, making wine grapes an uninviting proposition for most farmers.
Quality of grapes was poor
"When I first got here, I couldn't believe the poor quality of grapes," Gutlove says of fruit Coco Farm bought from outsiders. "Not ripe, ripeness was uneven, rot. After the first harvest I went down and talked to the growers. It was not a pleasant time. Finally I came to understand they were growing only table grapes. The ones that weren't good enough to be table grapes, they were selling to us as wine grapes."
Gutlove says he told a group of farmers to reduce their yields, change varieties from Cabernet Sauvignon and Merlot to something better suited to the weather and spend more time in their vineyards pruning and fighting rot.
"They took my translator aside and said, 'Take him out of here,' " he says, laughing.
Though he has a bachelor's in plant physiology from State University of New York-Stonybrook and studied in the master's program in enology at UC Davis, Gutlove says his focus in California was always winemaking, not grapegrowing. However, after he met his wife-to-be, Ryoko, at a party in Tokyo in 1991 and realized he would be spending more time in Japan than he thought, Gutlove began seeking grapes that would adapt well to Japan's weather. He also moved out of the school dormitory.
He currently makes sparkling wine with a blend of Riesling Lion, a hybrid grape developed by the Suntory Group beverage company, and Koshu, a grape unique to Japan that is well-adapted to the conditions yet neutral in flavor. Though expensive at 6,000 yen per bottle ($55), the 1998 Novo demi-sec sparkling wine is Coco Farm's best product, crisp and yeasty, with high acidity balancing the 3 percent residual sugar. An earlier vintage of this wine was served at a G-8 Kyushu-Okinawa Summit in Nago Cityin 2000, the first time a Japanese wine was served at such an occasion, Gutlove says.
Coco Farm's best still wine is made from Kerner, a hybrid grape grown in Germany and Austria that Gutlove says was created in the 1950s. The 2002 Cocoromi Series Kerner ($18) smells and tastes fresh and grassy, with a hint of tart apple -- like a Sauvignon Blanc without the mineral notes.
Winemaker can experiment
Among the winery's 15,000 cases of wine produced per year, Gutlove also makes wine from oddities like Muscat Bailey A, a hybrid of red Muscat with the American table grape Bailey. He's experimenting in the hillside vineyard beside the school with the Missouri red-wine favorite Norton, as well as Tannat, which seems the most promising. The wines are hit-or-miss. But though he says he misses Napa Valley, not least for the quality of grapes, Gutlove says he has no plans to move on soon.
"I've been asked time and again why I'm still here," he says. "It's the students and the teachers. Just to see the way that they work. The energy and enthusiasm they put into it. Winemaking has consumed my entire life. Everything about it I love, on so many levels. In my darker times I think it might be self-indulgent. I was raised in a Christian family. To be able to be involved with something like this is perfect. To be able to do what I love and help people overcome obstacles."
After all, Cocoromi means "challenge."
Though Gutlove would like to find U.S. distribution, Coco Farm wines are not currently available here, but the winery is open to visitors in Japan. For information, go to cocowine.com.
I have to find some of this wine...
A winery in Japan staffed entirely by autistic and developmentally disabled adults.
Saturday, April 04, 2009
For Becky and Dad...
Read and comment...this is an article on MHC (an autoimmune code on DNA, if I understand correctly) and autism. Most of my family carry a set of abnormalities in this area. DH and I went to dinner and we rehashed Larry King and all of the potential causes. After three glasses of wine, I guess this is my idea of fun.
Friday, April 03, 2009
So I am watching Larry King with Jenny McCarthy and Jim Carrey...
I think I am finding the whole panel on both sides annoying. I appreciate the work that Jenny McCarthy has done in raising awareness, but I think the singular focus on vaccines reduce the funding available to other causes and environmental triggers to the genetic component. When every discussion on autism devolves into a debate about vaccines, it depresses me, like there is no hope for better treatments or cures for Jimmy. I think there is a genetic component and an environmental trigger - saying there is an autism shot is an oversimplification.
(Oh, and Dr. Bernadine Healy comes off as entirely too smug on TV. She needs some media coaching, because she smiles too much and comes off as condescending. It's offensive.)
(Oh, and Dr. Bernadine Healy comes off as entirely too smug on TV. She needs some media coaching, because she smiles too much and comes off as condescending. It's offensive.)
Thursday, April 02, 2009
Progress is Slow in the War on Autism
A great overview of how things stand now...
"Aside from doing the morally right thing, Jane Searing said, funding more programs for adults with autism makes economic sense.
"If you get them employed, you won't have to pay for them forever," Searing said, adding it's much better to "turn these people into taxpayers instead of tax takers.""
This is an interesting note, especially in light of the cuts that Prince William County is trying to make in vocational rehab programs like Spinaweb in the current budget crisis. Yes, it saves the county money, but it only passes along the cost to the state and federal tax coffers to support adults with developmental disabilities. Not to mention the sense of purpose these adults get from working...
"Aside from doing the morally right thing, Jane Searing said, funding more programs for adults with autism makes economic sense.
"If you get them employed, you won't have to pay for them forever," Searing said, adding it's much better to "turn these people into taxpayers instead of tax takers.""
This is an interesting note, especially in light of the cuts that Prince William County is trying to make in vocational rehab programs like Spinaweb in the current budget crisis. Yes, it saves the county money, but it only passes along the cost to the state and federal tax coffers to support adults with developmental disabilities. Not to mention the sense of purpose these adults get from working...
Autism parents' plea: Understand kids' meltdowns
I can't tell you how much a part of the experience this is for parents, the constant stares and judgment that come along with taking your kid out in public. It is truly hell on earth. You feel like a freakshow. As Jimmy has gotten older, I can honestly say that we go out less. Once he got too big for high chairs and Jacob got willful and mobile, it just became too much. With all the therapy that we have done, he does better in restaurants and such, but it is still a trial.
By Madison Park
CNN
(CNN) -- Heather Moores and her 4-year-old son, Julian, sat in a waiting room at a pediatrician's office.
Julian, who has autism, was goose-stepping and counting every coat hook on the wall aloud. He started roaring like a lion. Moores smiled at her son, then noticed the horrified looks on other people's faces.
"People do not understand," she said. "To them, as bizarre as his actions might look, for us, they're a blessing. For us, it means he's enjoying himself and happy. No one understands that. They just see an out-of-control child. They don't understand this is a good day, when there isn't screams upon screams."
On the second World Autism Awareness Day, the search for a cure continues, and major court decisions have helped sort out the theories connected to the mysterious developmental disorders. Public knowledge and acceptance of autism and the difficulties the families face may be growing, as some iReporters told CNN.
But that's little comfort to a parent whose child's behavior can range from quirky to violent.
Children with autism have unexplainable breakdowns -- their outbursts are often loud, aggressive and disturbing. Julian slams himself against the ground or wall while he screams, flailing his limbs. Julian's younger brother, Marcus, 3, squirms away from his parents and runs into the street to oncoming cars because he is fascinated by them. He also screams with such ferocity that his face turns purple and mucus bubbles from his nostrils. Their youngest brother, Aric, also has autism and just turned 1 year old.
Heather Moores remembers that the stares in the waiting room were full of contempt. Onlookers shook their head in disgust and glared, making her feel like the "world's worst mother." This happens every time they go out to the doctor's office, the barber shop or anywhere in public.
"You'll hear people talking, 'If it was my kid, he wouldn't behave like that. These parents don't know how to discipline their children. Why don't you shut that kid up?' said Alexandre Moores, Heather's husband. "It makes going out unpleasant. I don't know if you ever get used to it."
Autism spectrum disorders affect the ability to communicate and interact. Many with autism have repetitive movements like rocking or hand-flapping and become set in their daily routines. Anything unexpected -- even a sound -- can result in major meltdowns.
"The reason why toddlers have tantrums is they don't have verbal or cognitive skills yet," said Dr. Lisa Shulman, an associate clinical professor of pediatrics at the Albert Einstein College of Medicine in Bronx, New York. "They have no control to navigate difficult situations using their social and communication skills. That inability to communicate can set off such behaviors in toddlers."
Their odd behavior draws unwanted attention. Marcus walks on his tiptoes and amuses himself by dumping liquid from sippy cups and containers. Julian counts everything aloud, over and over again.
"People are always staring and because the children don't show any type of physical abnormality, like someone with Down syndrome would show; people kind of assume that you're a bad parent," said Alexandre Moores
When the staring and critical comments become too overwhelming, Julian's mother tells the onlookers that the children have autism.
"You're in a situation you have to explain your kids, because you can't take the looks," she said. "It gets really, really hard. No one seems to understand where you're coming from." Read Moores' iReport submission.
To prepare for outings, parents should bring a favorite toy or plan ahead to reduce waiting time. But don't avoid going out, Shulman said.
Parents should have a pat answer to say to a nasty face maker, she said. "It should be something they feel comfortable with, about this invisible disorder. 'This is what autism looks like. My child has disability.' They're not obliged to engage in conversation. Make a statement that's heard and move on."
Moores said the most helpful thing the public can do is withhold the judgmental looks and reassure the parent with a smile when they encounter a child having a public meltdown. Critical comments are "very, very painful and very depressing," she said.
"Please try to understand parents of special children are going through living hell 24 hours a day," she said. "Even if you are confused and you don't know what to do, give that parent a reassuring smile. That's the absolute best thing you could do."
It's a familiar experience for Laura Shumaker who remembered the scorn of strangers whenever her son had a public meltdown. Autism was not well-known when her son, Matthew, now 22, was growing up.
"When I look back, there are people who judged me," she said. "There were just as many that were compassionate, who could see I was trying my best."
Four years ago, she and her son were flying home to Northern California from Philadelphia, Pennsylvania. At the airport, Matthew learned they would be flying on US Airways instead of their usual United Airlines.
This greatly distressed Matthew, who started hyperventilating.
Shumaker walked to the U.S. Airway ticket counter as Matthew rocked behind her nervously, mumbling, "United is friendly. US Air is not."
Under her breath, Shumaker whispered to the ticketing agent that Matthew had autism. Then in a louder voice, she said, "We'd just like to trade these in for United tickets," and winked.
The agent paused for a moment, glanced at Matthew and said: "Oh! Well, don't worry, because US Air and United are the same now...really. We merged. We're the same airline now."
Strangers in line chimed in. "That's right," said a man standing behind them in line. "And the skies are still friendly."
Hearing those reassurances, Matthew stopped hyperventilating and began breathing normally. Before leaving for the US Airways gate, Shumaker hugged the ticketing agent in gratitude. Read Shumaker's iReport submission.
"So many children are diagnosed, there is an awareness now," she said.
But it's still difficult to explain to others, Shumaker said, when Matthew comments at the supermarket that a person standing in front of them at the check-out line is too fat to buy ice cream.
By Madison Park
CNN
(CNN) -- Heather Moores and her 4-year-old son, Julian, sat in a waiting room at a pediatrician's office.
Julian, who has autism, was goose-stepping and counting every coat hook on the wall aloud. He started roaring like a lion. Moores smiled at her son, then noticed the horrified looks on other people's faces.
"People do not understand," she said. "To them, as bizarre as his actions might look, for us, they're a blessing. For us, it means he's enjoying himself and happy. No one understands that. They just see an out-of-control child. They don't understand this is a good day, when there isn't screams upon screams."
On the second World Autism Awareness Day, the search for a cure continues, and major court decisions have helped sort out the theories connected to the mysterious developmental disorders. Public knowledge and acceptance of autism and the difficulties the families face may be growing, as some iReporters told CNN.
But that's little comfort to a parent whose child's behavior can range from quirky to violent.
Children with autism have unexplainable breakdowns -- their outbursts are often loud, aggressive and disturbing. Julian slams himself against the ground or wall while he screams, flailing his limbs. Julian's younger brother, Marcus, 3, squirms away from his parents and runs into the street to oncoming cars because he is fascinated by them. He also screams with such ferocity that his face turns purple and mucus bubbles from his nostrils. Their youngest brother, Aric, also has autism and just turned 1 year old.
Heather Moores remembers that the stares in the waiting room were full of contempt. Onlookers shook their head in disgust and glared, making her feel like the "world's worst mother." This happens every time they go out to the doctor's office, the barber shop or anywhere in public.
"You'll hear people talking, 'If it was my kid, he wouldn't behave like that. These parents don't know how to discipline their children. Why don't you shut that kid up?' said Alexandre Moores, Heather's husband. "It makes going out unpleasant. I don't know if you ever get used to it."
Autism spectrum disorders affect the ability to communicate and interact. Many with autism have repetitive movements like rocking or hand-flapping and become set in their daily routines. Anything unexpected -- even a sound -- can result in major meltdowns.
"The reason why toddlers have tantrums is they don't have verbal or cognitive skills yet," said Dr. Lisa Shulman, an associate clinical professor of pediatrics at the Albert Einstein College of Medicine in Bronx, New York. "They have no control to navigate difficult situations using their social and communication skills. That inability to communicate can set off such behaviors in toddlers."
Their odd behavior draws unwanted attention. Marcus walks on his tiptoes and amuses himself by dumping liquid from sippy cups and containers. Julian counts everything aloud, over and over again.
"People are always staring and because the children don't show any type of physical abnormality, like someone with Down syndrome would show; people kind of assume that you're a bad parent," said Alexandre Moores
When the staring and critical comments become too overwhelming, Julian's mother tells the onlookers that the children have autism.
"You're in a situation you have to explain your kids, because you can't take the looks," she said. "It gets really, really hard. No one seems to understand where you're coming from." Read Moores' iReport submission.
To prepare for outings, parents should bring a favorite toy or plan ahead to reduce waiting time. But don't avoid going out, Shulman said.
Parents should have a pat answer to say to a nasty face maker, she said. "It should be something they feel comfortable with, about this invisible disorder. 'This is what autism looks like. My child has disability.' They're not obliged to engage in conversation. Make a statement that's heard and move on."
Moores said the most helpful thing the public can do is withhold the judgmental looks and reassure the parent with a smile when they encounter a child having a public meltdown. Critical comments are "very, very painful and very depressing," she said.
"Please try to understand parents of special children are going through living hell 24 hours a day," she said. "Even if you are confused and you don't know what to do, give that parent a reassuring smile. That's the absolute best thing you could do."
It's a familiar experience for Laura Shumaker who remembered the scorn of strangers whenever her son had a public meltdown. Autism was not well-known when her son, Matthew, now 22, was growing up.
"When I look back, there are people who judged me," she said. "There were just as many that were compassionate, who could see I was trying my best."
Four years ago, she and her son were flying home to Northern California from Philadelphia, Pennsylvania. At the airport, Matthew learned they would be flying on US Airways instead of their usual United Airlines.
This greatly distressed Matthew, who started hyperventilating.
Shumaker walked to the U.S. Airway ticket counter as Matthew rocked behind her nervously, mumbling, "United is friendly. US Air is not."
Under her breath, Shumaker whispered to the ticketing agent that Matthew had autism. Then in a louder voice, she said, "We'd just like to trade these in for United tickets," and winked.
The agent paused for a moment, glanced at Matthew and said: "Oh! Well, don't worry, because US Air and United are the same now...really. We merged. We're the same airline now."
Strangers in line chimed in. "That's right," said a man standing behind them in line. "And the skies are still friendly."
Hearing those reassurances, Matthew stopped hyperventilating and began breathing normally. Before leaving for the US Airways gate, Shumaker hugged the ticketing agent in gratitude. Read Shumaker's iReport submission.
"So many children are diagnosed, there is an awareness now," she said.
But it's still difficult to explain to others, Shumaker said, when Matthew comments at the supermarket that a person standing in front of them at the check-out line is too fat to buy ice cream.
We're not dead...
I know it has been a long time between posts. I don't think I have ever had a break that long. March was a completely overwhelming month. The school board stuff kicked my butt mentally, I had strep, an ear infection, and a sinus infection - all at the same time. Jimmy got a urinary tract infection and head lice. DH continues to have back problems from the car accident. Jacob is the only one to weather the storm. I apologize for my absence.
We had Jimmy's IEP meeting yesterday - I can't believe it was scheduled on April Fool's Day. I was able to maintain all of his services next year. Sadly, we are going forward without his teacher, who is moving back home to Pittsburgh. I would have been lost without Ms. Harris (who am I kidding - she's Allison to me) the past two years. As sad as I am to lose her, I am intrigued by what she is doing next - vocab rehab sounds like where she is going. Instead of working with kids now, she is going to help create a future for them as this Autism Generation ages into adulthood. Without vocational opportunities, when these kids age out of education at the age of 22 (under IDEA I believe), so many take up residence on the couch. Allison is going forward to create opportunity for children with special needs in adulthood. For that reason and so many others, she goes with my blessing, love, and respect. She has truly been amazing.
Today is World Autism Awareness Day. Of course, I will post a few stories, but I think it gets a month in the US. I am doing my best to honor it here in Manassas by having a fundraiser to support Matthew's Center for Visual Learning at Noodles & Co. on Liberia Ave. on April 28th from 5-9 p.m.. Noodles gives a sizable donation based on sales, so I would love to see everyone there.
I promise to get back on track with this. Now that the summer is becoming a light at the end of the tunnel that is the school year, I really hope to do some work on video with Jimmy and other fun blog stuff. Hey, I get Spring Break next week. I should be good for at least that much.
We had Jimmy's IEP meeting yesterday - I can't believe it was scheduled on April Fool's Day. I was able to maintain all of his services next year. Sadly, we are going forward without his teacher, who is moving back home to Pittsburgh. I would have been lost without Ms. Harris (who am I kidding - she's Allison to me) the past two years. As sad as I am to lose her, I am intrigued by what she is doing next - vocab rehab sounds like where she is going. Instead of working with kids now, she is going to help create a future for them as this Autism Generation ages into adulthood. Without vocational opportunities, when these kids age out of education at the age of 22 (under IDEA I believe), so many take up residence on the couch. Allison is going forward to create opportunity for children with special needs in adulthood. For that reason and so many others, she goes with my blessing, love, and respect. She has truly been amazing.
Today is World Autism Awareness Day. Of course, I will post a few stories, but I think it gets a month in the US. I am doing my best to honor it here in Manassas by having a fundraiser to support Matthew's Center for Visual Learning at Noodles & Co. on Liberia Ave. on April 28th from 5-9 p.m.. Noodles gives a sizable donation based on sales, so I would love to see everyone there.
I promise to get back on track with this. Now that the summer is becoming a light at the end of the tunnel that is the school year, I really hope to do some work on video with Jimmy and other fun blog stuff. Hey, I get Spring Break next week. I should be good for at least that much.
Thursday, March 05, 2009
Support ABLE Accounts
The only problem I have is the income level for claiming this as a deduction. The deduction for joint filers phases out at $60,000. Two working parents in an urban area easily make that limit as an AGI, though it does not mean they are moneyed by any stretch of the imagination. Lifting the AGI cap higher would help more families to be able to save that $2000 year with a tax benefit, which would be so helpful as we all struggle with bills. Still, the bill is worth supporting.
AUTISM SPEAKS APPLAUDS THE INTRODUCTION OF THE ABLE ACCOUNTS ACT - S. 493
NEW YORK, NY (February 27, 2009) -- Autism Speaks, the nation’s largest autism science and advocacy organization, today applauded Senators Robert Casey (D-PA), Orrin Hatch (R-UT), and Christopher Dodd (D-CT) for introducing S. 493, the ABLE Accounts Act of 2009, which would encourage individuals with autism and other disabilities and their families to save, tax-free, for disability-related expenses. Senators Richard Burr (R-NC), Edward Kennedy (D-MA), and Sam Brownback (R-KS) are the bill’s original co-sponsors.
The ABLE Accounts Act of 2009 – or Achieving a Better Life Experience Act – would amend the IRS code to provide for the establishment of savings accounts “for the purpose of supporting individuals with disabilities to maintain health, independence, and quality of life.” Similar in many respects to existing 529 college savings plans, these accounts will be exempt from federal taxation, provided certain rules are met. The legislation’s intent is to supplement rather than to replace benefits provided by other sources, including Medicaid and private insurance.
Accounts will have a contribution limit of $500,000 but will grow tax free and will not have any effect on the disabled individual’s ability to collect from other means tested federal programs, such as Medicaid, food stamps, and federal housing assistance. Allowable expenses include: preschool education; postsecondary education; tutoring; special education services; training; employment supports; personal assistance supports; community-based supports; respite care; clothing; assistive technology; home modifications; out-of-pocket medical, vision, or dental expenses; transportation vehicle purchases or modifications; insurance premiums; habilitation and rehabilitation services; funeral and burial expenses; and other services or products allowed by regulation.
“We commend Senators Casey, Dodd, Hatch, Brownback, Burr and Kennedy for spearheading the legislative process to create these vitally important savings accounts, which will reduce an unreasonable financial burden for millions of families and end discrimination against individuals with disabilities in the federal tax code,” said Bob Wright, co-founder of Autism Speaks. “If parents are entitled to save, tax-free, to send their child to Yale, they should be able to save in the same way to help every child meet his or her full potential.”
AUTISM SPEAKS APPLAUDS THE INTRODUCTION OF THE ABLE ACCOUNTS ACT - S. 493
NEW YORK, NY (February 27, 2009) -- Autism Speaks, the nation’s largest autism science and advocacy organization, today applauded Senators Robert Casey (D-PA), Orrin Hatch (R-UT), and Christopher Dodd (D-CT) for introducing S. 493, the ABLE Accounts Act of 2009, which would encourage individuals with autism and other disabilities and their families to save, tax-free, for disability-related expenses. Senators Richard Burr (R-NC), Edward Kennedy (D-MA), and Sam Brownback (R-KS) are the bill’s original co-sponsors.
The ABLE Accounts Act of 2009 – or Achieving a Better Life Experience Act – would amend the IRS code to provide for the establishment of savings accounts “for the purpose of supporting individuals with disabilities to maintain health, independence, and quality of life.” Similar in many respects to existing 529 college savings plans, these accounts will be exempt from federal taxation, provided certain rules are met. The legislation’s intent is to supplement rather than to replace benefits provided by other sources, including Medicaid and private insurance.
Accounts will have a contribution limit of $500,000 but will grow tax free and will not have any effect on the disabled individual’s ability to collect from other means tested federal programs, such as Medicaid, food stamps, and federal housing assistance. Allowable expenses include: preschool education; postsecondary education; tutoring; special education services; training; employment supports; personal assistance supports; community-based supports; respite care; clothing; assistive technology; home modifications; out-of-pocket medical, vision, or dental expenses; transportation vehicle purchases or modifications; insurance premiums; habilitation and rehabilitation services; funeral and burial expenses; and other services or products allowed by regulation.
“We commend Senators Casey, Dodd, Hatch, Brownback, Burr and Kennedy for spearheading the legislative process to create these vitally important savings accounts, which will reduce an unreasonable financial burden for millions of families and end discrimination against individuals with disabilities in the federal tax code,” said Bob Wright, co-founder of Autism Speaks. “If parents are entitled to save, tax-free, to send their child to Yale, they should be able to save in the same way to help every child meet his or her full potential.”
My family: We're coming to DC, but we aren't coming to see you...
I am so bummed. My sister and her kids are coming over spring break. Fabulous, no. Clearly issues are there, given the title of this point. They are coming over their break, March 16 through 19, days in which I will still be at work. They are staying at my mom's house. And they are going to do the tourist thing in a serious way, only setting foot in Virginia for the last day to go to Mt. Vernon and Reagan National Airport. I have two personal days left, with one allocated for travel to Christine's graduation and another half set aside for the annual IEP meeting for Jimmy. Yes, mine take hours. Moreover, I had two meetings that week - regular school board on Monday and joint session on Tuesday. Wednesday is Jimmy's therapy session, so I don't even have an evening to sneak over across the bridge for dinner.
Arrghhh...
Arrghhh...
Wednesday, March 04, 2009
And the hitmakers keep coming...
Berlin is playing this year's Regeneration Tour. In DC, it will be at the always lovely venue of Wolftrap. I will be very happy to see Terri play, though it is always bittersweet as I was friendly with some of the guys in the band. Ric Olsen and John Crawford are two of the nicest guys you can ever hope to meet. Bands Reunited happened when I was too pregnant to travel, so I missed my once in a lifetime reunion. This girl still dreams that lightning would somehow strike twice, though she is old enough to know better. But I will be there to welcome Terri back to DC.
Monday, March 02, 2009
Oops...
We just realized that we didn't move the snow shovels from the townhouse. Big oops when the snow is six inches deep in your driveway.
Saturday, February 28, 2009
Snow day?
In March? It's been a while since that has happened. The daffodils are going to be confused...
I was supposed to shop with my mom and she has already called to cancel. I haven't seen her in six weeks. Damn snow-pocalypse. I wanted to see my mommy. :( And when Jimmy has a therapy cancellation for weather, it doesn't get made up.
Poop.
By Kari Pugh
Published: February 28, 2009
It might’ve been in the 60s on Friday, but weather forecasters are predicting a snowstorm this weekend.
The National Weather Service has issued a winter storm watch for the Washington region, including Prince William County, Manassas and Manassas Park, from Sunday night through Monday morning.
Forecasters say a low pressure center moving up the Atlantic Coast could bring more than five inches of snow starting late Sunday.
I was supposed to shop with my mom and she has already called to cancel. I haven't seen her in six weeks. Damn snow-pocalypse. I wanted to see my mommy. :( And when Jimmy has a therapy cancellation for weather, it doesn't get made up.
Poop.
Thursday, February 26, 2009
The Illness That Never Ends...
Jimmy got sent home from daycare... after spending most of the day apparently crashed out on a beanbag in the classroom. I think the lingering nature of the virus going around the schools and his Risperdal had the collective effect of transforming him into Captain Narcolepsy. He was barely improved, thus his early pick up from extended care. I am sending him back in the morning to school. I don't feel great about it and I will leave early if I need to.
I have been working hard on a bunch of things, so I have been falling behind on my posting. But I got a letter in the mail next week that I am completely overdue in posting about. So that will likely come tomorrow.
I have been working hard on a bunch of things, so I have been falling behind on my posting. But I got a letter in the mail next week that I am completely overdue in posting about. So that will likely come tomorrow.
Monday, February 23, 2009
Sunday, February 22, 2009
For T and Becky...
T, get a sitter. The hubby can spare you for one evening. Becky, come up or I will come down... The DC show means you will be here for Mom's birthday!!! And Jimmy's if you make it a long weekend.
I have been looking forward to seeing DM again... since the last time. Music gives me such joy. It is the best mood elevator ever. I am really stoked.
Depeche Mode - 2009 Tour Dates (cities only)
Friday, July 24th Toronto
Saturday, July 25th Montreal
Tuesday, July 28th Washington, DC
Friday, July 31st Boston
Saturday, August 1st Atlantic City
Monday, August 3rd New York
Monday, August 10th Seattle
Wednesday, August 12th San Francisco
Friday, August 14th San Diego
Sunday, August 16th Los Angeles
Monday, August 17th Los Angeles
Thursday, August 20th Santa Barbara
Saturday, August 22nd Las Vegas
Sunday, August 23rd Phoenix
Tuesday, August 25th Salt Lake City
Thursday, August 27th Denver
Saturday, August 29th Dallas
Sunday, August 30th Houston
Tuesday, Sept 1st Atlanta
Friday, Sept 4th Tampa
Saturday, Sept 5th Ft. Lauderdale
I have been looking forward to seeing DM again... since the last time. Music gives me such joy. It is the best mood elevator ever. I am really stoked.
Depeche Mode - 2009 Tour Dates (cities only)
Friday, July 24th Toronto
Saturday, July 25th Montreal
Tuesday, July 28th Washington, DC
Friday, July 31st Boston
Saturday, August 1st Atlantic City
Monday, August 3rd New York
Monday, August 10th Seattle
Wednesday, August 12th San Francisco
Friday, August 14th San Diego
Sunday, August 16th Los Angeles
Monday, August 17th Los Angeles
Thursday, August 20th Santa Barbara
Saturday, August 22nd Las Vegas
Sunday, August 23rd Phoenix
Tuesday, August 25th Salt Lake City
Thursday, August 27th Denver
Saturday, August 29th Dallas
Sunday, August 30th Houston
Tuesday, Sept 1st Atlanta
Friday, Sept 4th Tampa
Saturday, Sept 5th Ft. Lauderdale
Saturday, February 21, 2009
For T...
It's been a long time, I shouldn't have left you, without a dope beat to step to...
The Pet Shop Boys performing at the BRIT Awards with Lady GaGa and the most beloved Brandon Flowers!!!!
Friday, February 20, 2009
Parents Sue Kaiser
And I applaud them for it. I have a special disdain for Kaiser. They drug their feet on Jimmy's diagnosis, took too long to give a referral on the whole ear thing, and inserted his ear tubes incorrectly on two occasions. More relevant in this case is Kaiser and all other insurers in California are mandated to provide care. They are passing it back to the schools, saying it isn't their responsibility. Ridiculous.
I will always err on the side of Kaiser being inept at meeting the needs of its members, but I will say that this case and so many like them is the whole reason for research. I think the vaccine issue and the fear of litigation on the part of the medical industry has really diminished their interest in support research into autism. This is a medical condition - the denial of this on the part of the insurance industry is the only thing that has spared them from having to meet the medical treatment needs of children with autism. The only thing I think the insurance industry would support is the development of prenatal diagnostic testing so that children with autism would be "selected" out of the gene pool. I would put money on seeing that long before we see better treatments for children with autism.
I will always err on the side of Kaiser being inept at meeting the needs of its members, but I will say that this case and so many like them is the whole reason for research. I think the vaccine issue and the fear of litigation on the part of the medical industry has really diminished their interest in support research into autism. This is a medical condition - the denial of this on the part of the insurance industry is the only thing that has spared them from having to meet the medical treatment needs of children with autism. The only thing I think the insurance industry would support is the development of prenatal diagnostic testing so that children with autism would be "selected" out of the gene pool. I would put money on seeing that long before we see better treatments for children with autism.
Thursday, February 19, 2009
The Cougar Annual Art Show
Hopefully DH will send me some pictures to post, but this time, both Jimmy and Jacob had stuff in the honors' gallery. The art teacher told me that Jimmy put every tactile thing he could on his sculpture. His seascape was impressive. Jacob did a feather painting and what looked like a sponge painting. I will try to get pics up tomorrow. The art show is always huge for us, as it is one of the few things that Jimmy sort of gets equally represented in. And it isn't forced. When he did his kindergarten graduation concert, it was the teachers holding him on the risers while he... well, declined to sing with the rest of the children. In this, it wasn't just task completion. You can look at his work and see some part of him come out. It is very cool.
Monday, February 16, 2009
Sunday, February 15, 2009
Autism Coverage Bill Fails
Here is the article that touches the low points of the legislative experience of the two autism bills in Virginia. Saslaw's attempt at a joke isn't shocking. From the VPAP site, his contributors include:
$12,500 Anthem Richmond
$11,000 Va Hospital & Healthcare Assn Richmond
$1,500 Aetna Life & Casualty Hartford, CT
My connection timeout before I could get through his eight pages of contributions, mostly from companies. I guess in Virginia, businesses have a better shot getting legislation stopped when they lay out this kind of cash on lawmakers.
Autism Coverage Bill Fails
Senate's Move, House Panel's Inaction Anger Advocates
By Fredrick Kunkle
Washington Post Staff Writer
Thursday, February 12, 2009; B07
RICHMOND, Feb. 11 -- The Senate has effectively killed a bill that would have required insurers to cover autistic children, pleasing business lobbies that argued against new mandates but enraging parents who vowed revenge at the polls.
The fight over mandating autism coverage has gathered intensity nationwide and resonated especially strongly in Loudoun County and other fast-growing areas of Northern Virginia with high numbers of children.
Anger about the bill's defeat late Tuesday was magnified by what appeared to be a flip remark by a Northern Virginia lawmaker who had offered qualified backing for the cause. Moments after the vote on the bill concluded a late session, Majority Leader Richard L. Saslaw (D-Fairfax) took the floor.
"I'd inquire of the clerk: Who won?" Saslaw said with a grin. "We had a pool going."
The Senate clerk replied with a smile: "That's not appropriate, senator."
Advocates of the bill thought Saslaw's question referred to a wager on the bill's fate.
"Our parents just felt like their kids were made some sort of a joke, an office wager," said Judith Ursitti, regional director for Autism Speaks, a nonprofit organization.
But Saslaw, who had attempted to broker a compromise on the autism bill, said yesterday that his joke was a victim of bad timing. The office pool he referred to, Saslaw said, concerned the hour at which the Senate's session would end. Saslaw said it was tradition to wager on the timing of "crossover," the final session when each chamber concludes work on legislation that must be referred to its counterpart. Saslaw said he regretted the bill's failure.
"I did everything I could to get this thing out of here," he said.
More than 100 people, including educators, lawmakers, and families with autistic children, assembled in July at a community center in Lansdowne on the Potomac to organize their campaign. They enlisted not only other parents of autistic children but also their friends in what became known as the Loudoun Project. They traveled by the busload to the capital and trooped to lawmakers' offices wearing huge buttons saying, "Autism Votes in Virginia," often with their autistic children in tow.
"We promised a daily presence," said Pasquale "Pat" DiBari, a Leesburg resident and early organizer. "We really went above and beyond to tell legislators our personal stories."
Allying themselves with Autism Speaks, parents entered about 20,000 supporters into their database, and they flooded lawmakers' inboxes with more than 7,000 e-mails, winning bipartisan backing from Dels. Robert G. Marshall (R-Prince William) and David E. Poisson (D-Loudoun). Sen. Jill Holtzman Vogel (R-Winchester) carried a bill in the Senate.
But the legislation met resistance from the business community, which argued that a recession was the worst time to impose a costly mandate.
"I'm very sympathetic to the parents and children caught up in this terrible condition," said Hugh Keogh, president of the Virginia Chamber of Commerce. "[But] our numbers show a decreasing amount of employers who are able to offer health-care insurance every year, and mandates are a part of that."
Reginald N. Jones, a lobbyist for the Virginia Association of Health Plans, said one estimate suggested that the costs of autism coverage could be as much as $40 million a year in Virginia, despite a provision that would cap expenses at $36,000 per child per year.
"It would probably become the second most expensive mandate in Virginia, and maybe the first," Jones said.
The bill quickly met resistance. The House Commerce and Labor Committee took no action on it, infuriating advocates who noted the unpleasant irony that the bill suffered the same fate as some of their children. "To receive the silent treatment was really stunning," DiBari, 40, said.
Jodi Folta, 39, an accountant who lives in Ashburn, said advocates were mystified by the actions of Del. Thomas Davis Rust (R-Fairfax), a member of the Commerce and Labor Committee. Rust appeared to be a friend of the cause, turning up at a rally on the capitol grounds, but he showed no effort to advance it, Folta said.
"He's on our unhappy list," Folta said.
Rust did not respond to a message at his office seeking comment.
In the Senate, Vogel sought compromise by limiting the mandated coverage to children younger than 12. Saslaw cut the age further, to 6 years old. But efforts at compromise failed.
"I've struggled with this bill, and I think everybody here has struggled with this bill," said Sen. Kenneth W. Stolle (R-Virginia Beach) before asking that the bill go back to the Finance Committee, where it would effectively die this year. "The legislative process is an ugly process, and this has been particularly ugly."
Staff writer Tim Craig contributed to this report.
$12,500 Anthem Richmond
$11,000 Va Hospital & Healthcare Assn Richmond
$1,500 Aetna Life & Casualty Hartford, CT
My connection timeout before I could get through his eight pages of contributions, mostly from companies. I guess in Virginia, businesses have a better shot getting legislation stopped when they lay out this kind of cash on lawmakers.
Autism Coverage Bill Fails
Senate's Move, House Panel's Inaction Anger Advocates
By Fredrick Kunkle
Washington Post Staff Writer
Thursday, February 12, 2009; B07
RICHMOND, Feb. 11 -- The Senate has effectively killed a bill that would have required insurers to cover autistic children, pleasing business lobbies that argued against new mandates but enraging parents who vowed revenge at the polls.
The fight over mandating autism coverage has gathered intensity nationwide and resonated especially strongly in Loudoun County and other fast-growing areas of Northern Virginia with high numbers of children.
Anger about the bill's defeat late Tuesday was magnified by what appeared to be a flip remark by a Northern Virginia lawmaker who had offered qualified backing for the cause. Moments after the vote on the bill concluded a late session, Majority Leader Richard L. Saslaw (D-Fairfax) took the floor.
"I'd inquire of the clerk: Who won?" Saslaw said with a grin. "We had a pool going."
The Senate clerk replied with a smile: "That's not appropriate, senator."
Advocates of the bill thought Saslaw's question referred to a wager on the bill's fate.
"Our parents just felt like their kids were made some sort of a joke, an office wager," said Judith Ursitti, regional director for Autism Speaks, a nonprofit organization.
But Saslaw, who had attempted to broker a compromise on the autism bill, said yesterday that his joke was a victim of bad timing. The office pool he referred to, Saslaw said, concerned the hour at which the Senate's session would end. Saslaw said it was tradition to wager on the timing of "crossover," the final session when each chamber concludes work on legislation that must be referred to its counterpart. Saslaw said he regretted the bill's failure.
"I did everything I could to get this thing out of here," he said.
More than 100 people, including educators, lawmakers, and families with autistic children, assembled in July at a community center in Lansdowne on the Potomac to organize their campaign. They enlisted not only other parents of autistic children but also their friends in what became known as the Loudoun Project. They traveled by the busload to the capital and trooped to lawmakers' offices wearing huge buttons saying, "Autism Votes in Virginia," often with their autistic children in tow.
"We promised a daily presence," said Pasquale "Pat" DiBari, a Leesburg resident and early organizer. "We really went above and beyond to tell legislators our personal stories."
Allying themselves with Autism Speaks, parents entered about 20,000 supporters into their database, and they flooded lawmakers' inboxes with more than 7,000 e-mails, winning bipartisan backing from Dels. Robert G. Marshall (R-Prince William) and David E. Poisson (D-Loudoun). Sen. Jill Holtzman Vogel (R-Winchester) carried a bill in the Senate.
But the legislation met resistance from the business community, which argued that a recession was the worst time to impose a costly mandate.
"I'm very sympathetic to the parents and children caught up in this terrible condition," said Hugh Keogh, president of the Virginia Chamber of Commerce. "[But] our numbers show a decreasing amount of employers who are able to offer health-care insurance every year, and mandates are a part of that."
Reginald N. Jones, a lobbyist for the Virginia Association of Health Plans, said one estimate suggested that the costs of autism coverage could be as much as $40 million a year in Virginia, despite a provision that would cap expenses at $36,000 per child per year.
"It would probably become the second most expensive mandate in Virginia, and maybe the first," Jones said.
The bill quickly met resistance. The House Commerce and Labor Committee took no action on it, infuriating advocates who noted the unpleasant irony that the bill suffered the same fate as some of their children. "To receive the silent treatment was really stunning," DiBari, 40, said.
Jodi Folta, 39, an accountant who lives in Ashburn, said advocates were mystified by the actions of Del. Thomas Davis Rust (R-Fairfax), a member of the Commerce and Labor Committee. Rust appeared to be a friend of the cause, turning up at a rally on the capitol grounds, but he showed no effort to advance it, Folta said.
"He's on our unhappy list," Folta said.
Rust did not respond to a message at his office seeking comment.
In the Senate, Vogel sought compromise by limiting the mandated coverage to children younger than 12. Saslaw cut the age further, to 6 years old. But efforts at compromise failed.
"I've struggled with this bill, and I think everybody here has struggled with this bill," said Sen. Kenneth W. Stolle (R-Virginia Beach) before asking that the bill go back to the Finance Committee, where it would effectively die this year. "The legislative process is an ugly process, and this has been particularly ugly."
Staff writer Tim Craig contributed to this report.
Thursday, February 12, 2009
My World Has Been Rocked...
So my friend, the one that I found recently, is five years out from having Hodgkin's Disease and thriving. We have exchanged long e-mails and spoken on the phone. She was and is an amazing person for just being who she is. But knowing that she went through chemo, nearly died at one point, and is here for me to find five years later. It is something that keeps rattling around in my brain over and over as just an amazing blessing on so many levels. My world feels differently to me than it did two weeks ago. I don't think I can offer any other explanation than that.
Happy, happy, happy
If I could justify a $22 pair of flip flops, I would simply would have to buy these...
I would just have to get a bag to match...
I would just have to get a bag to match...
Sad, sad, sad
Well, the State Senate version of the autism bill is stuck in committee, where coverage was cut from 21 until the age of 6. Apparently, if they haven't gotten "better" by the age of six, we are just supposed to give up. Such crap. Expect this come back year after year - parents love their children. We don't give up.
The really sad thing is I am a Democrat. Senator Chuck Colgan was the head of the committee on this bill. I haven't been able to ascertain his stance on the legislation, but I am disappointed that this wasn't able to get out of his committee this year and all that the coverage wasn't broader. I don't blame him personally, but I would very much like to know what went on. In contrast, Republican Delegate Jackson Miller's stock shot up with me tremendously. He was committed to this bill for months. I will always appreciate his efforts.
The really sad thing is I am a Democrat. Senator Chuck Colgan was the head of the committee on this bill. I haven't been able to ascertain his stance on the legislation, but I am disappointed that this wasn't able to get out of his committee this year and all that the coverage wasn't broader. I don't blame him personally, but I would very much like to know what went on. In contrast, Republican Delegate Jackson Miller's stock shot up with me tremendously. He was committed to this bill for months. I will always appreciate his efforts.
Friday, February 06, 2009
CNN Autism 911
I was talking to someone tonight and I realized that I hadn't posted the CNN Autism 911 article and follow up story links.
So here you go...
So here you go...
Wednesday, February 04, 2009
Autism Bill Stalls in the House
Autism Bill Stalls In House
By Erika Jacobson
(Created: Wednesday, February 4, 2009 3:39 PM EST)
Loudoun parents who have spent months working to get legislation passed in Richmond that would provide health insurance coverage for families with children suffering from autism were dealt a blow this week, when the House of Delegates subcommittee on Commerce and Labor was silent on the issue.
After what Lansdowne resident Pat DiBari called 45 minutes of "testimony and great questions and dialogue back and forth" there was "absolute silence" from the eight present subcommittee members, he said.
"Nothing. No action. Zero," DiBari said Tuesday evening. "They chose not to vote. Families are stunned, outraged, disappointed, you name the emotion."
Going into Tuesday night's subcommittee meeting DiBari and other parents who have been advocating for passage of HB1588 were optimistic. Since last year, parents from Northern Virginia have begun to reach out to parents of autistic children around the state to support legislation introduced by Del. Bob Marshall (R-13) that would mandate medical coverage of habilitative services for children. The bill describes habilitative services as "health and social services directed toward increasing and maintaining the physical, intellectual, emotional, and social functioning of developmentally delayed individuals, including occupational, physical, and speech therapy; assistance, training, supervision, and monitoring in the areas of self-care, sensory and motor development, interpersonal skills, communication, and socialization; and reduction or elimination of maladaptive behavior."
In a statement released Wednesday afternoon, Marshall said the lack of action on the part of the subcommittee was a "display of complete indifference" and said he had told the members of the subcommittee who were present that "silence is not a morally acceptable response to this situation."
"Three members who favored HB 1588 were not present. I pointed out to the subcommittee that they had the ability to recommend reporting the bill to the full Labor and Commerce Committee without any recommendation. That was also met with silence," Marshall wrote. "I noted to Del. Terry Kilgore, who chairs the full Labor and Commerce Committee, that he has the authority to bring up HB 1588 regardless of the actions of the subcommittee. He said he would not do that. Again, silence is not an acceptable response. Legislators are sent to Richmond to confront issues not duck them."
Last spring the bill also was left in committee, but was regenerated this year and there were hopes that it would gain support in both chambers of the General Assembly.
"I think it's been an uphill battle, but we've got a lot of people on both sides supporting it," Jodi Folta, who founded the Loudoun County Autism Network with DiBari, said before the subcommittee meeting.
Members of the Loudoun County Autism Network have said Marshall's legislation would take a large burden off of parents of autistic children, many of whom are facing medical bills ranging from $10,000 to $50,000 per year and are having to take out home equity loans and second mortgages to cover the cost.
According to the national organization Autism Speaks, one in 150 people will be diagnosed with autism, making it more common than pediatric cancer, diabetes, and AIDS combined.
The Loudoun Board of Supervisors, the Leesburg Town Council and the Loudoun School Board have all expressed support for the bill, but one of the big events that led parents to be hopeful was the debate that occurred in the Mandated Benefits Commission in November, a day DiBari called "a roller coaster ride."
"We thought it was just a vote, but it ended up being a debate," he said. "We were scrambling on our Blackberrys to get them the answers they needed."
Ultimately, the commission voted to support the bill and by January supporters of the bill believed they had at least half of the House of Delegates in support of the bill, which places a $36,000 cap on the annual maximum benefit coverage for families. In January, almost 300 people, including several delegates and senators, gathered at the state capitol building for a rally in support of the bill and since then there have been parents and supporters at the capitol building every day talking to legislators.
"They've been meeting with delegates and telling their stories," DiBari said.
Indeed, Del. David Poisson (D-32), who has become a co-patron of the bill, said it is the families who have made a difference.
"The parents have been very transparent," he said. "They have revealed more about their lives that we would certainly expect from anyone else who comes before the General Assembly."
Most of the opposition to the bill has come from the business sector, including the Virginia Chamber of Commerce. Concerns have been raised that requiring businesses to cover autism treatment in their insurance would put too much of a burden on business owners. But that's a claim that DiBari, Folta and other reject.
"We have to look what this is going to do to families in Virginia. Not just one or two, but a large number of them," Poisson said. "Over the longer term, what toll is that likely to take, not only on the families, but on Virginia as a whole? The less these parents are able to take care of these burdens on their own, the more they are going to be reliant on services."
Monday, a study prepared by a consulting firm on the costs associated with HB1588 was released and the data showed that premiums would rise only $1.90 per month per covered person. Autism Speaks at one time estimated the monthly cost to be $3 or $4.
"We're really excited about this because it's based on this actual bill," Folta said. "It's based on the cap in this bill. It's based on the number of kids in this state."
Folta and DiBari had hoped the new numbers would silence some of the critics that said the bill would be too expensive for businesses, but Tuesday's lack of a vote left them questioning.
"There's a health care crisis, but we can't hold these young children hostage because there's a larger problem with the system in this country," DiBari said. "We think this is a reasonable bill that could immediately impact 10,000 families."
The bill does not cover all families with children suffering from autism. It leaves out state government employees and those companies that self-insure, but those omissions were not done easily, Folta said.
"It doesn't cover state employees, but that is because of the budget," she said. "In this climate it wouldn't even work."
Other bills that are designed to try an address the issue of autism treatment, specifically those that make it a school system issue, have also failed at the General Assembly and parents are hoping legislators are beginning to realize that HB1588 is really the only way to help autistic children.
"A lot of addressing their needs is addressing their everyday needs," DiBari said. "Those are things that need to be addressed before school age. They're missing the prime target of ages."
Since the failure to get a motion from the subcommittee, parents are regrouping, hoping that there is still a chance for the house bill. Parents are hoping to reach out to Del. Terry Kilgore (R-1), chairman of the Commerce and Labor Committee, who was not present at the subcommittee meeting, and Del. William J. Howell (R-28), who is Speaker of the House, to demand a vote on the bill.
Parents are also planning to shift a majority of their focus to members of the Senate Commerce and Labor Committee, which is reviewing an identical bill filed by Sen. Jill Holtzman Vogel (R-27). Vogel's SB1260 is scheduled to come before the committee for consideration next week.
All members of the Loudoun delegation, DiBari says, have expressed their support for both bills, but only Del. Tom Rust (R-86) sits on the House of Delegates Commerce and Labor Committee. Sen. Mark Herring (D-33) sits on the Senate committee.
While parents are still hoping for a result that will bring them the relief they desperately need, DiBari and Folta both say they are happy that Loudoun's elected officials have taken up the reins of the autism coverage issue.
By Erika Jacobson
(Created: Wednesday, February 4, 2009 3:39 PM EST)
Loudoun parents who have spent months working to get legislation passed in Richmond that would provide health insurance coverage for families with children suffering from autism were dealt a blow this week, when the House of Delegates subcommittee on Commerce and Labor was silent on the issue.
After what Lansdowne resident Pat DiBari called 45 minutes of "testimony and great questions and dialogue back and forth" there was "absolute silence" from the eight present subcommittee members, he said.
"Nothing. No action. Zero," DiBari said Tuesday evening. "They chose not to vote. Families are stunned, outraged, disappointed, you name the emotion."
Going into Tuesday night's subcommittee meeting DiBari and other parents who have been advocating for passage of HB1588 were optimistic. Since last year, parents from Northern Virginia have begun to reach out to parents of autistic children around the state to support legislation introduced by Del. Bob Marshall (R-13) that would mandate medical coverage of habilitative services for children. The bill describes habilitative services as "health and social services directed toward increasing and maintaining the physical, intellectual, emotional, and social functioning of developmentally delayed individuals, including occupational, physical, and speech therapy; assistance, training, supervision, and monitoring in the areas of self-care, sensory and motor development, interpersonal skills, communication, and socialization; and reduction or elimination of maladaptive behavior."
In a statement released Wednesday afternoon, Marshall said the lack of action on the part of the subcommittee was a "display of complete indifference" and said he had told the members of the subcommittee who were present that "silence is not a morally acceptable response to this situation."
"Three members who favored HB 1588 were not present. I pointed out to the subcommittee that they had the ability to recommend reporting the bill to the full Labor and Commerce Committee without any recommendation. That was also met with silence," Marshall wrote. "I noted to Del. Terry Kilgore, who chairs the full Labor and Commerce Committee, that he has the authority to bring up HB 1588 regardless of the actions of the subcommittee. He said he would not do that. Again, silence is not an acceptable response. Legislators are sent to Richmond to confront issues not duck them."
Last spring the bill also was left in committee, but was regenerated this year and there were hopes that it would gain support in both chambers of the General Assembly.
"I think it's been an uphill battle, but we've got a lot of people on both sides supporting it," Jodi Folta, who founded the Loudoun County Autism Network with DiBari, said before the subcommittee meeting.
Members of the Loudoun County Autism Network have said Marshall's legislation would take a large burden off of parents of autistic children, many of whom are facing medical bills ranging from $10,000 to $50,000 per year and are having to take out home equity loans and second mortgages to cover the cost.
According to the national organization Autism Speaks, one in 150 people will be diagnosed with autism, making it more common than pediatric cancer, diabetes, and AIDS combined.
The Loudoun Board of Supervisors, the Leesburg Town Council and the Loudoun School Board have all expressed support for the bill, but one of the big events that led parents to be hopeful was the debate that occurred in the Mandated Benefits Commission in November, a day DiBari called "a roller coaster ride."
"We thought it was just a vote, but it ended up being a debate," he said. "We were scrambling on our Blackberrys to get them the answers they needed."
Ultimately, the commission voted to support the bill and by January supporters of the bill believed they had at least half of the House of Delegates in support of the bill, which places a $36,000 cap on the annual maximum benefit coverage for families. In January, almost 300 people, including several delegates and senators, gathered at the state capitol building for a rally in support of the bill and since then there have been parents and supporters at the capitol building every day talking to legislators.
"They've been meeting with delegates and telling their stories," DiBari said.
Indeed, Del. David Poisson (D-32), who has become a co-patron of the bill, said it is the families who have made a difference.
"The parents have been very transparent," he said. "They have revealed more about their lives that we would certainly expect from anyone else who comes before the General Assembly."
Most of the opposition to the bill has come from the business sector, including the Virginia Chamber of Commerce. Concerns have been raised that requiring businesses to cover autism treatment in their insurance would put too much of a burden on business owners. But that's a claim that DiBari, Folta and other reject.
"We have to look what this is going to do to families in Virginia. Not just one or two, but a large number of them," Poisson said. "Over the longer term, what toll is that likely to take, not only on the families, but on Virginia as a whole? The less these parents are able to take care of these burdens on their own, the more they are going to be reliant on services."
Monday, a study prepared by a consulting firm on the costs associated with HB1588 was released and the data showed that premiums would rise only $1.90 per month per covered person. Autism Speaks at one time estimated the monthly cost to be $3 or $4.
"We're really excited about this because it's based on this actual bill," Folta said. "It's based on the cap in this bill. It's based on the number of kids in this state."
Folta and DiBari had hoped the new numbers would silence some of the critics that said the bill would be too expensive for businesses, but Tuesday's lack of a vote left them questioning.
"There's a health care crisis, but we can't hold these young children hostage because there's a larger problem with the system in this country," DiBari said. "We think this is a reasonable bill that could immediately impact 10,000 families."
The bill does not cover all families with children suffering from autism. It leaves out state government employees and those companies that self-insure, but those omissions were not done easily, Folta said.
"It doesn't cover state employees, but that is because of the budget," she said. "In this climate it wouldn't even work."
Other bills that are designed to try an address the issue of autism treatment, specifically those that make it a school system issue, have also failed at the General Assembly and parents are hoping legislators are beginning to realize that HB1588 is really the only way to help autistic children.
"A lot of addressing their needs is addressing their everyday needs," DiBari said. "Those are things that need to be addressed before school age. They're missing the prime target of ages."
Since the failure to get a motion from the subcommittee, parents are regrouping, hoping that there is still a chance for the house bill. Parents are hoping to reach out to Del. Terry Kilgore (R-1), chairman of the Commerce and Labor Committee, who was not present at the subcommittee meeting, and Del. William J. Howell (R-28), who is Speaker of the House, to demand a vote on the bill.
Parents are also planning to shift a majority of their focus to members of the Senate Commerce and Labor Committee, which is reviewing an identical bill filed by Sen. Jill Holtzman Vogel (R-27). Vogel's SB1260 is scheduled to come before the committee for consideration next week.
All members of the Loudoun delegation, DiBari says, have expressed their support for both bills, but only Del. Tom Rust (R-86) sits on the House of Delegates Commerce and Labor Committee. Sen. Mark Herring (D-33) sits on the Senate committee.
While parents are still hoping for a result that will bring them the relief they desperately need, DiBari and Folta both say they are happy that Loudoun's elected officials have taken up the reins of the autism coverage issue.
Tuesday, February 03, 2009
HB1588 Dies in Committee
I just got a call from Richmond. The small business lobbyists killed HB1588 in committee today. I know that my co-sponsor Jackson Miller did what he could and I am grateful for that. But I am depressed. It's a tragedy for families like mine.
Monday, February 02, 2009
The Washington Post gets it right... and wrong...
I was quoted in a Washington Post article about the bill being consider in Richmond at the committee level. I was happy to talk to the reporter, but he got one basic fact wrong.
"Like other parents of autistic children, Rachel Kirkland saw her little boy suddenly start sliding backward in time. Kirkland, a school librarian who lives in Manassas Park, said her son Jacob, now 5, was saying a few words by the end of his first year. Then his progress came to a halt."
No, Jacob isn't autistic too. Heavens no. I sent an e-mail to them and hope they will run a correction.
I am praying this bill makes it out of committee tomorrow. I know the small business people hate the notion of another mandate, but I had year's where I have spent what I made from my job in therapy bills. No one can afford that. Therapy is medical treatment. Insurance should cover treatment.
"Like other parents of autistic children, Rachel Kirkland saw her little boy suddenly start sliding backward in time. Kirkland, a school librarian who lives in Manassas Park, said her son Jacob, now 5, was saying a few words by the end of his first year. Then his progress came to a halt."
No, Jacob isn't autistic too. Heavens no. I sent an e-mail to them and hope they will run a correction.
I am praying this bill makes it out of committee tomorrow. I know the small business people hate the notion of another mandate, but I had year's where I have spent what I made from my job in therapy bills. No one can afford that. Therapy is medical treatment. Insurance should cover treatment.
Sunday, February 01, 2009
Friendship Never Ends...
Thanks to the Internet.
Last week, I was Googling, avoiding my required classwork and filling my time. For a long time, I have struggled with the transient nature of my life. I moved around a lot when I was younger, making friends and then losing track as we pulled up stakes and headed elsewhere. Not quite as bad as a military upbringing, but still... As a young adult, I didn't have that traditional college experience that left you with roommate stories and social connections galore. Working at GMU left me with lasting friendships, but people are starting to move on. And, although I know a great many people now, it's hard to find the time to invest in friendships with young children, especially mine. Heck, T lives only an hour away and I think it's been about a year since we have gotten together. (That's me.... I suck.)
When I was in the 9th and 10th grade, I made a great friend in a neighbor, a girl named Shannon. A wonderful girl in every way. She sang in a beautiful soprano. Her life, in my eyes, was as stable as mine was crazy. She was a devout Christian with an unshakable faith just when I was at the beginning of trying to find my own. She moved (out this way actually) - I came to visit once in 1987, but by the time I moved her, she had moved on to the midwest. We lost touched. I have long regretted it, as she was one of the most genuine people I have ever known.
I came across a listing for her on Classmates.com that included her married name. With that tidbit, I started searching and found a pastor's wife out west with the same name. I just knew - being a pastor's wife and living her faith was where I had envisioned her being in her life for so long. After a few days, I got a response.
Finding a lost friend is a great blessing and a true joy!
Last week, I was Googling, avoiding my required classwork and filling my time. For a long time, I have struggled with the transient nature of my life. I moved around a lot when I was younger, making friends and then losing track as we pulled up stakes and headed elsewhere. Not quite as bad as a military upbringing, but still... As a young adult, I didn't have that traditional college experience that left you with roommate stories and social connections galore. Working at GMU left me with lasting friendships, but people are starting to move on. And, although I know a great many people now, it's hard to find the time to invest in friendships with young children, especially mine. Heck, T lives only an hour away and I think it's been about a year since we have gotten together. (That's me.... I suck.)
When I was in the 9th and 10th grade, I made a great friend in a neighbor, a girl named Shannon. A wonderful girl in every way. She sang in a beautiful soprano. Her life, in my eyes, was as stable as mine was crazy. She was a devout Christian with an unshakable faith just when I was at the beginning of trying to find my own. She moved (out this way actually) - I came to visit once in 1987, but by the time I moved her, she had moved on to the midwest. We lost touched. I have long regretted it, as she was one of the most genuine people I have ever known.
I came across a listing for her on Classmates.com that included her married name. With that tidbit, I started searching and found a pastor's wife out west with the same name. I just knew - being a pastor's wife and living her faith was where I had envisioned her being in her life for so long. After a few days, I got a response.
Finding a lost friend is a great blessing and a true joy!
A friend sent this to me... worth a read...
GUEST EDITORIAL: WHY VIRGINIA SHOULD HELP CHILDREN WITH AUTISM
By Del. Robert G. Marshall (R-13) and Del. David E. Poisson (D-32)
Ashburn Connection
Wednesday, January 28, 2009
Why should insurers cover the cost of treating children with autism?
First, there is real hope. The U.S. Surgeon General has reported that early treatment can spare an autistic child from lifelong dependency as wards of the state.
Second, a recent study in Pediatrics, published by the American Academy of Pediatrics, found that children with autism are significantly more likely to have problems accessing health care. These children are more likely to live in families that report financial problems, need additional income for the child's medical care and pay more out-of-pocket for the child's care. Parents of more than half of children with autism reduce or stop work altogether to care for their child.
Roughly one of every 150 Virginia children has autism. Studies suggest that boys are more likely than girls to develop autism and receive the diagnosis three to five times more frequently. Current estimates are that one out of 94 boys is diagnosed with autism.
As the surgeon general notes, with early intervention, a sizable minority of children diagnosed with autism are able to achieve normal social and intellectual functioning. These children can be mainstreamed into regular classrooms and may be indistinguishable from peers. Even children who make less dramatic progress benefit from early intervention, showing gains in language, fewer inappropriate behaviors and less overall costs to taxpayers.
Under Virginia law, public schools must provide a free appropriate education to children with disabling conditions. However, that mandate is complicated by the absence of private health insurance to treat the core symptoms of autism. The school system, charged principally with the education of children with and without disabilities, cannot bear the full burden of attending to the health needs of children with autism. Unless private insurers do their fair share, the needs of these children will not be met and the stresses on their families will not diminish.
To help children and families and the communities in which they live, we have introduced H.B. 1588 to require insurance coverage for the treatment of autism. The bill covers proven, evidence-based, medically necessary care prescribed, provided or ordered by a physician or psychologist for a child under the age of 21. Coverage is subject to an inflation-adjusted annual maximum benefit of $36,000 and will complement rather than supplant school services.
H.B. 1588 is similar to laws enacted in Louisiana and Pennsylvania, two of the eight states that have enacted legislation ensuring coverage of children with autism. The Louisiana Legislative Fiscal Office estimated the total premium cost of autism coverage in that state as ranging from $1.12 to $3.87 per policy per month, while an independent panel report in Pennsylvania found a marginal premium increase cost of approximately $1 per insurance plan member per month attributable to the autism benefit. H.B. 1588 will likewise have a similarly modest impact on premiums. The General Assembly's Joint Legislative Audit and Review Commission concluded that the financial impact of covering autism treatment is within the range of existing Virginia health insurance mandates.
While the cost of autism treatment may be calculated with reasonable accuracy, no calculus fully measures the toll autism takes on children and families. Balancing medical, social and financial considerations, the Joint Legislative Audit and Review Commission concluded that health insurance coverage of autism treatment is necessary. Even in these difficult economic times, the pertinent question to ask is not whether we can afford to provide appropriate interventions to Virginia children with autism, but is instead whether we can afford not to.
The lives and futures of affected Virginia families depend upon passage of H.B. 1588.
Delegate Marshall was first elected to the Virginia House in 1992. He serves on the House Finance, Science and Technology, and Counties, Cities and Towns Committees. Delegate Poisson was first elected to the Virginia House in 2005. He serves on the House Counties, Cities and Towns and Militia, Police and Public Safety Committees. Their bill, H.B. 1588, is scheduled to be heard in a House Commerce and Labor Subcommittee Feb. 3.
By Del. Robert G. Marshall (R-13) and Del. David E. Poisson (D-32)
Ashburn Connection
Wednesday, January 28, 2009
Why should insurers cover the cost of treating children with autism?
First, there is real hope. The U.S. Surgeon General has reported that early treatment can spare an autistic child from lifelong dependency as wards of the state.
Second, a recent study in Pediatrics, published by the American Academy of Pediatrics, found that children with autism are significantly more likely to have problems accessing health care. These children are more likely to live in families that report financial problems, need additional income for the child's medical care and pay more out-of-pocket for the child's care. Parents of more than half of children with autism reduce or stop work altogether to care for their child.
Roughly one of every 150 Virginia children has autism. Studies suggest that boys are more likely than girls to develop autism and receive the diagnosis three to five times more frequently. Current estimates are that one out of 94 boys is diagnosed with autism.
As the surgeon general notes, with early intervention, a sizable minority of children diagnosed with autism are able to achieve normal social and intellectual functioning. These children can be mainstreamed into regular classrooms and may be indistinguishable from peers. Even children who make less dramatic progress benefit from early intervention, showing gains in language, fewer inappropriate behaviors and less overall costs to taxpayers.
Under Virginia law, public schools must provide a free appropriate education to children with disabling conditions. However, that mandate is complicated by the absence of private health insurance to treat the core symptoms of autism. The school system, charged principally with the education of children with and without disabilities, cannot bear the full burden of attending to the health needs of children with autism. Unless private insurers do their fair share, the needs of these children will not be met and the stresses on their families will not diminish.
To help children and families and the communities in which they live, we have introduced H.B. 1588 to require insurance coverage for the treatment of autism. The bill covers proven, evidence-based, medically necessary care prescribed, provided or ordered by a physician or psychologist for a child under the age of 21. Coverage is subject to an inflation-adjusted annual maximum benefit of $36,000 and will complement rather than supplant school services.
H.B. 1588 is similar to laws enacted in Louisiana and Pennsylvania, two of the eight states that have enacted legislation ensuring coverage of children with autism. The Louisiana Legislative Fiscal Office estimated the total premium cost of autism coverage in that state as ranging from $1.12 to $3.87 per policy per month, while an independent panel report in Pennsylvania found a marginal premium increase cost of approximately $1 per insurance plan member per month attributable to the autism benefit. H.B. 1588 will likewise have a similarly modest impact on premiums. The General Assembly's Joint Legislative Audit and Review Commission concluded that the financial impact of covering autism treatment is within the range of existing Virginia health insurance mandates.
While the cost of autism treatment may be calculated with reasonable accuracy, no calculus fully measures the toll autism takes on children and families. Balancing medical, social and financial considerations, the Joint Legislative Audit and Review Commission concluded that health insurance coverage of autism treatment is necessary. Even in these difficult economic times, the pertinent question to ask is not whether we can afford to provide appropriate interventions to Virginia children with autism, but is instead whether we can afford not to.
The lives and futures of affected Virginia families depend upon passage of H.B. 1588.
Delegate Marshall was first elected to the Virginia House in 1992. He serves on the House Finance, Science and Technology, and Counties, Cities and Towns Committees. Delegate Poisson was first elected to the Virginia House in 2005. He serves on the House Counties, Cities and Towns and Militia, Police and Public Safety Committees. Their bill, H.B. 1588, is scheduled to be heard in a House Commerce and Labor Subcommittee Feb. 3.
Saturday, January 31, 2009
A Well Written Argument for Insurance
Utah is considering similar coverage that is under consideration in HB1588. I had to post this because this mom just puts the arguments for insurance coverage so well.
Insurance coverage for autism an investment in the future
The Salt Lake Tribune
By Kim Kowanko
Why do you have insurance? I have it for peace of mind. If some medical problem emerges and the cost of treatment is too great, then my insurance will "insure" that my family and I can still get the needed treatment.
What if a new childhood disease develops? Would we assume that it would be covered by our heath insurance? Or do we expect to have to fight for coverage for every new disease? A new cancer would not be covered automatically; we would have to fight to have the cost of the treatments covered while fighting the disease ourselves or for our children.
Tragically, this is the situation faced by families with children who have autism. They are told that early intervention is key and that there are proven therapies that will drastically improve their child's outcome and thus their future. Once they start trying to initiate these proven treatments, they discover that their insurance doesn't pay for it. They are faced with the realization that they either have to liquidate their assets (if they are lucky enough to have assets) or not give their child a chance to have a full life.
Ten years ago, autism was a rare disease. It affected 1 in 10,000. Now, it's 1 in 150 nationwide. In Utah it's 1 in 133. We have the third highest rate of autism in the nation. It's an epidemic of disastrous proportions and it's getting worse, not better.
If this doesn't scare you, it should. What will society look like if 1 out of 133 people (1 out of 79 men) can't take care of themselves or interact appropriately with the community? What will we do with them? How much money will it cost? A Harvard study in 2007 estimated the cost to care for an individual with autism over a lifetime at $3 million!
At the rate autism is growing, odds are that you will eventually have a very personal reason for supporting early intervention and treatment. It might be your child, grandchild, niece or nephew or neighbor. We can't stick our heads in the sand and hope it will go away. It won't. We have to make good decisions that make sense economically and, most important, morally and ethically.
Senate Bill 43, Clay's Law, would require insurance companies to cover proven and medically necessary therapies for children with autism. If treated early, many children will enter mainstream kindergarten without the need for any kind of aid or special services.
Last time I checked, insurance companies were doing very well. They are not struggling financially to stay afloat like our schools are. So why do we allow insurance companies to discriminate against autistic kids and pass the buck to our schools?
A research and advocacy association of insurance carriers looked at 10 states that have passed similar laws. They found that the incremental cost of the benefits was less than 1 percent. Compare that to $3 million over a lifetime and even if you're the most cold-hearted bean counter on the planet you would have to agree that Clay's Law makes sense. And you would be right.
Let's hope that Utah's lawmakers are taking the time to learn about this devastating epidemic and analyzing the studies that show the cost effectiveness of early treatment and intervention. But most important, let's hope that they have a heart and care about all of Utah's children. After all, how much is a child's life worth?
Kim Kowanko is a full-time mom in Heber City. Her middle son has asperger's disorder.
Insurance coverage for autism an investment in the future
The Salt Lake Tribune
By Kim Kowanko
Why do you have insurance? I have it for peace of mind. If some medical problem emerges and the cost of treatment is too great, then my insurance will "insure" that my family and I can still get the needed treatment.
What if a new childhood disease develops? Would we assume that it would be covered by our heath insurance? Or do we expect to have to fight for coverage for every new disease? A new cancer would not be covered automatically; we would have to fight to have the cost of the treatments covered while fighting the disease ourselves or for our children.
Tragically, this is the situation faced by families with children who have autism. They are told that early intervention is key and that there are proven therapies that will drastically improve their child's outcome and thus their future. Once they start trying to initiate these proven treatments, they discover that their insurance doesn't pay for it. They are faced with the realization that they either have to liquidate their assets (if they are lucky enough to have assets) or not give their child a chance to have a full life.
Ten years ago, autism was a rare disease. It affected 1 in 10,000. Now, it's 1 in 150 nationwide. In Utah it's 1 in 133. We have the third highest rate of autism in the nation. It's an epidemic of disastrous proportions and it's getting worse, not better.
If this doesn't scare you, it should. What will society look like if 1 out of 133 people (1 out of 79 men) can't take care of themselves or interact appropriately with the community? What will we do with them? How much money will it cost? A Harvard study in 2007 estimated the cost to care for an individual with autism over a lifetime at $3 million!
At the rate autism is growing, odds are that you will eventually have a very personal reason for supporting early intervention and treatment. It might be your child, grandchild, niece or nephew or neighbor. We can't stick our heads in the sand and hope it will go away. It won't. We have to make good decisions that make sense economically and, most important, morally and ethically.
Senate Bill 43, Clay's Law, would require insurance companies to cover proven and medically necessary therapies for children with autism. If treated early, many children will enter mainstream kindergarten without the need for any kind of aid or special services.
Last time I checked, insurance companies were doing very well. They are not struggling financially to stay afloat like our schools are. So why do we allow insurance companies to discriminate against autistic kids and pass the buck to our schools?
A research and advocacy association of insurance carriers looked at 10 states that have passed similar laws. They found that the incremental cost of the benefits was less than 1 percent. Compare that to $3 million over a lifetime and even if you're the most cold-hearted bean counter on the planet you would have to agree that Clay's Law makes sense. And you would be right.
Let's hope that Utah's lawmakers are taking the time to learn about this devastating epidemic and analyzing the studies that show the cost effectiveness of early treatment and intervention. But most important, let's hope that they have a heart and care about all of Utah's children. After all, how much is a child's life worth?
Kim Kowanko is a full-time mom in Heber City. Her middle son has asperger's disorder.
Thursday, January 29, 2009
HB 1588 Goes to Subcommittee on Tuesday
This coming Tuesday, February 3, 2009 at 2pm a subcommittee of the Virginia House Commerce and Labor Committee will be meeting to vote on House Bill 1588, the autism insurance reform bill. This meeting will decide the fate of HB 1588 and whether or not the bill will move forward.
HB 1588 will give thousands of families across the Commonwealth access to the autism therapies their children need by requiring private insurance companies to provide coverage for these services. The members of the House Committee need to be made aware of how much this legislation is needed by families in Virginia!
How Can You Help?
CALL the members of the Virginia House Commerce and Labor Committee:
Del. Terry Kilgore (Chair) (804) 698-1001
Del. Jennifer L. McClellan (804) 698-1071
Del. Frank D. Hargrove (Vice Chair) (804) 698-1055
Del. Kenneth R. Melvin (804) 698-1080
Del. Kenneth C. Alexander (804) 698-1089
Del. Harvy B. Morgan (804) 698-1098
Del. Kathy J. Byron (804) 698-1022
Del. Samuel A. Nixon Jr. (804) 698-1027
Del. Benjamin L. Cline (804) 698-1024
Del. Kenneth R. Plum (804) 698-1036
Del. Tim Hugo (804) 698-1040
Del Harry R. Purkey (804) 698-1082
Del. William R. Janis (804) 698-1056
Del. Thomas Rust (804) 698-1086
Del Johnny S. Joannou (804) 698-1079
Del. Christopher B. Saxman (804) 698-1020
Del. Joseph P. Johnson Jr. (804) 698-1004
Del. Mark D. Sickles (804) 698-1043
Del Lynwood W. Lewis Jr. (804) 698-1000
Del. Jeion A. Ward (804) 698-1092
Del. Daniel W. Marshall III (804) 698-1014
Del. R. Lee Ware Jr. (804) 698-1065
I am going to try to go through as many of the numbers as I can between now and Tuesday. I would love it if you would join me. With the limited treatment that Jimmy has received, he has improved by leaps and bounds. We don't know what causes autism and we can't cure it, but with treatment, the quality of life can be improved for those with autism. Autism is a treatable medical diagnosis. Medical insurance should cover treatment. Please support kids like Jimmy by supporting HB1588.
HB 1588 will give thousands of families across the Commonwealth access to the autism therapies their children need by requiring private insurance companies to provide coverage for these services. The members of the House Committee need to be made aware of how much this legislation is needed by families in Virginia!
How Can You Help?
CALL the members of the Virginia House Commerce and Labor Committee:
Del. Terry Kilgore (Chair) (804) 698-1001
Del. Jennifer L. McClellan (804) 698-1071
Del. Frank D. Hargrove (Vice Chair) (804) 698-1055
Del. Kenneth R. Melvin (804) 698-1080
Del. Kenneth C. Alexander (804) 698-1089
Del. Harvy B. Morgan (804) 698-1098
Del. Kathy J. Byron (804) 698-1022
Del. Samuel A. Nixon Jr. (804) 698-1027
Del. Benjamin L. Cline (804) 698-1024
Del. Kenneth R. Plum (804) 698-1036
Del. Tim Hugo (804) 698-1040
Del Harry R. Purkey (804) 698-1082
Del. William R. Janis (804) 698-1056
Del. Thomas Rust (804) 698-1086
Del Johnny S. Joannou (804) 698-1079
Del. Christopher B. Saxman (804) 698-1020
Del. Joseph P. Johnson Jr. (804) 698-1004
Del. Mark D. Sickles (804) 698-1043
Del Lynwood W. Lewis Jr. (804) 698-1000
Del. Jeion A. Ward (804) 698-1092
Del. Daniel W. Marshall III (804) 698-1014
Del. R. Lee Ware Jr. (804) 698-1065
I am going to try to go through as many of the numbers as I can between now and Tuesday. I would love it if you would join me. With the limited treatment that Jimmy has received, he has improved by leaps and bounds. We don't know what causes autism and we can't cure it, but with treatment, the quality of life can be improved for those with autism. Autism is a treatable medical diagnosis. Medical insurance should cover treatment. Please support kids like Jimmy by supporting HB1588.
Thursday, January 22, 2009
Oh. My.
First, let me apologize for the lack of posting lately. Last weekend, I had tonsillitis, no heat, and my 39th birthday. Now I have my final class for my license starting. I am getting my feet back under me, though, worry not. I think my posting for the next week or two will be fairly limited.
A few weeks ago, I went to a campaign event for Terry McAuliffe. During the event, I asked a question about autism. The whole thing was a little weird. To make it even odder, it was documented by the New Republic. The article is quite humorous. When they checked the quote with me, I was sort of in disbelief. The end result, however, was more than I could imagine. I am going to have to Google the author, Eve Fairbanks. I really enjoyed her article.
Yes, having Terry McAuliffe babysit my kid would be a patently bad idea. Truly. I just think that people have a perception of what autism is based on Rainman on one end and the things Denis Leary put in his book on the other. Sometime, a little illustration in the form of an hour with him fosters a lot of understanding.
From Eve's article:
"There will be some reluctant nonbelievers along the way, of course. From Leesburg, McAuliffe drives on to another brewpub in Manassas, where his performance rates nearly as high as it had in Leesburg. The hiccup comes during the question-and-answer session, a potentially perilous period for McAuliffe, given his zealous devotion to chicken waste and highway lightbulb repair. As he wraps up one answer, a trembling mother thrusts a picture of her autistic son, Jimmy, into his face and asks when Virginia will cover autism on its state employee health plan. But soon, somehow, McAuliffe's answer circles around to the extra lanes he wants to build on U.S. Highway 58, which runs from Virginia Beach to the Cumberland Gap. "We've got to four-lane 58 the whole way!" he exclaims, rocking back and forth like Rain Man. The crowd is quiet at their tables, and the realization descends on McAuliffe that something is not quite right. He pauses and peers hard at the mother, Rachel Kirkland. "Your child should be covered," he says. "I apologize for that."
"The divorce rate for autism parents is 85 percent," says Kirkland, her voice breaking.
"Right," says McAuliffe and falls, briefly, silent.
But there's nothing in this world that can't be fixed, and when Kirkland darts out before the meet-and-greet is over, a young aide trots into the drenching rain to follow up. To help McAuliffe gain sensitivity on the autism question, Kirkland suggests he drop by her son's classroom, or even come to her house and babysit little Jimmy. The idea of Terry McAuliffe babysitting an autistic child seems a patently bad one. But, in keeping with his boss's limitless spirit, the aide replies that this is "not outside the realm of possibility.""
A few weeks ago, I went to a campaign event for Terry McAuliffe. During the event, I asked a question about autism. The whole thing was a little weird. To make it even odder, it was documented by the New Republic. The article is quite humorous. When they checked the quote with me, I was sort of in disbelief. The end result, however, was more than I could imagine. I am going to have to Google the author, Eve Fairbanks. I really enjoyed her article.
Yes, having Terry McAuliffe babysit my kid would be a patently bad idea. Truly. I just think that people have a perception of what autism is based on Rainman on one end and the things Denis Leary put in his book on the other. Sometime, a little illustration in the form of an hour with him fosters a lot of understanding.
From Eve's article:
"There will be some reluctant nonbelievers along the way, of course. From Leesburg, McAuliffe drives on to another brewpub in Manassas, where his performance rates nearly as high as it had in Leesburg. The hiccup comes during the question-and-answer session, a potentially perilous period for McAuliffe, given his zealous devotion to chicken waste and highway lightbulb repair. As he wraps up one answer, a trembling mother thrusts a picture of her autistic son, Jimmy, into his face and asks when Virginia will cover autism on its state employee health plan. But soon, somehow, McAuliffe's answer circles around to the extra lanes he wants to build on U.S. Highway 58, which runs from Virginia Beach to the Cumberland Gap. "We've got to four-lane 58 the whole way!" he exclaims, rocking back and forth like Rain Man. The crowd is quiet at their tables, and the realization descends on McAuliffe that something is not quite right. He pauses and peers hard at the mother, Rachel Kirkland. "Your child should be covered," he says. "I apologize for that."
"The divorce rate for autism parents is 85 percent," says Kirkland, her voice breaking.
"Right," says McAuliffe and falls, briefly, silent.
But there's nothing in this world that can't be fixed, and when Kirkland darts out before the meet-and-greet is over, a young aide trots into the drenching rain to follow up. To help McAuliffe gain sensitivity on the autism question, Kirkland suggests he drop by her son's classroom, or even come to her house and babysit little Jimmy. The idea of Terry McAuliffe babysitting an autistic child seems a patently bad one. But, in keeping with his boss's limitless spirit, the aide replies that this is "not outside the realm of possibility.""
Tuesday, January 20, 2009
On the new White House website...
I hope this signals things to come...
"President Obama and Vice President Biden are committed to supporting Americans with Autism Spectrum Disorders (“ASD”), their families, and their communities. There are a few key elements to their support, which are as follows:
First, President Obama and Vice President Biden support increased funding for autism research, treatment, screenings, public awareness, and support services. There must be research of the treatments for, and the causes of, ASD.
Second, President Obama and Vice President Biden support improving life-long services for people with ASD for treatments, interventions and services for both children and adults with ASD.
Third, President Obama and Vice President Biden support funding the Combating Autism Act and working with Congress, parents and ASD experts to determine how to further improve federal and state programs for ASD.
Fourth, President Obama and Vice President Biden support universal screening of all infants and re-screening for all two-year-olds, the age at which some conditions, including ASD, begin to appear. These screenings will be safe and secure, and available for every American that wants them. Screening is essential so that disabilities can be identified early enough for those children and families to get the supports and services they need."
"President Obama and Vice President Biden are committed to supporting Americans with Autism Spectrum Disorders (“ASD”), their families, and their communities. There are a few key elements to their support, which are as follows:
First, President Obama and Vice President Biden support increased funding for autism research, treatment, screenings, public awareness, and support services. There must be research of the treatments for, and the causes of, ASD.
Second, President Obama and Vice President Biden support improving life-long services for people with ASD for treatments, interventions and services for both children and adults with ASD.
Third, President Obama and Vice President Biden support funding the Combating Autism Act and working with Congress, parents and ASD experts to determine how to further improve federal and state programs for ASD.
Fourth, President Obama and Vice President Biden support universal screening of all infants and re-screening for all two-year-olds, the age at which some conditions, including ASD, begin to appear. These screenings will be safe and secure, and available for every American that wants them. Screening is essential so that disabilities can be identified early enough for those children and families to get the supports and services they need."
Monday, January 12, 2009
Sunday, January 11, 2009
Heath Ledger wins a Golden Globe
That man died entirely too early for all that he had to offer his craft... His performance in Dark Knight was brilliant - though I thought he should have won the Oscar for Brokeback Mountain, his Joker made Nicholson's fade a bit in my memory, no small feat. He would deserve to win this time around, regardless of the circumstances.
Saturday, January 10, 2009
So I met Terry McAuliffe today...
We went over to Foster's today to hear Terry McAuliffe speak today. He is one of three men running to be the Governor of Virginia. Nice, very articulate and personable. He was so on-topic with his message about bringing jobs into Virginia to improve the economy that he didn't really answer the question I posed on autism. (I don't think I posed it well - I get so nervous talking in front of big groups and having all eyes on me. Heck, being on camera at school board meetings, I have a recurring nightmare about saying something stupid or picking my nose on TV!) Yes, it is a big question when you are asking about health care and education in the same sentence, but I kind of felt blown off a bit. I think you need a broader focus. Given where he is coming from, working for Hillary Clinton and Barack Obama, knowing their progressive platforms on autism during the 2008 presidential campaign, my expectations were clearly higher. He said at the beginning that he would answer questions and you might not like his answers. When I left, that's kind of what I thought... I just didn't like his answer. But as I have worked around the house today and cooked and pondered, I think I just didn't get one.
It's not that I don't get that things are bad - I probably get it better than most people. But I look at my son and his classmates, the kids I have met at the Matthew's Centers, my friends who have had kids diagnosed... Some kids with autism will go on to live fairly normal lives. I think the majority, unless their therapeutic needs are addressed by the medical community, if there isn't study into better treatments, if educational initiatives aren't fully funded - the majority have no or an extremely limited future. Do the math. In 2006, there were 4,265,996 children born in this country. Of those births, 28,459 will be diagnosed with autism. I know that there are differences in birthrates from year to year, but let's assume that number merely stays constant for ten years. That is 284,590 children who will grow up and only a small group of them will be able to hold jobs, live independently, marry, start families. Most will live with their families or institutions because there is no place for them in this world. It's a situation that is just unacceptable.
Anyway, didn't win my vote. Didn't lose it either. I am still out there. I am looking forward to meeting Brian Moran and Creigh Deeds during the campaign season to see what they are like and making my primary decision.
It's not that I don't get that things are bad - I probably get it better than most people. But I look at my son and his classmates, the kids I have met at the Matthew's Centers, my friends who have had kids diagnosed... Some kids with autism will go on to live fairly normal lives. I think the majority, unless their therapeutic needs are addressed by the medical community, if there isn't study into better treatments, if educational initiatives aren't fully funded - the majority have no or an extremely limited future. Do the math. In 2006, there were 4,265,996 children born in this country. Of those births, 28,459 will be diagnosed with autism. I know that there are differences in birthrates from year to year, but let's assume that number merely stays constant for ten years. That is 284,590 children who will grow up and only a small group of them will be able to hold jobs, live independently, marry, start families. Most will live with their families or institutions because there is no place for them in this world. It's a situation that is just unacceptable.
Anyway, didn't win my vote. Didn't lose it either. I am still out there. I am looking forward to meeting Brian Moran and Creigh Deeds during the campaign season to see what they are like and making my primary decision.
Friday, January 09, 2009
Sad news...
Lexie Glover was found around lunchtime today in a shallow creek in Woodbridge today. Chief Deane says she was likely murdered.
Today is a tragic day for her family. May God be with them during this horrible time.
Today is a tragic day for her family. May God be with them during this horrible time.
Thursday, January 08, 2009
Missing Autistic Girl in Manassas
INFORMATION WANTED MISSING PERSON
Alexis (Lexie) GLOVER
DOB: 02/26/1995
Missing 01/07/2009
Age Now: 13
Sex: Female
Race: Black
Hair: Black
Eyes: Black
Height: 5 ft 3 in
Weight 87 lbs
Missing From: Manassas, Virginia United States
Last seen, in the vicinity of Mathis Avenue, Manassas, Virginia. Subject was walking away from a vehicle at the time of the loss.
Subject was wearing a green/beige sweater and blue jeans with rhinestones on the front pockets. The subject was wearing white socks and sneakers. The subject wears pull-up style underwear. The subject has a pronounced limp and suffers from mild autism and bi-polar disorder.
ANYONE HAVING INFORMATION SHOULD CONTACT THE PRINCE WILLIAM COUNTY POLICE AT -
(703) 792-6500
Has it really been this long?
Okay, I am going to get back to it and post something really good. Let me get to work...
Monday, December 29, 2008
Holiday Wind Down
I put my nieces back on the plane this afternoon. A mix of sadness and huge relief. I am glad I have until the 5th before I have to go back to work. I need the time to unwind. But I will miss them. The boys were entertained - I got to go through my bathroom cabinets yesterday. It was nice. I guess I will spend the rest of the week on my bed and getting boxes in from the garage.
I went to the doctor again today - one more test, this one non-invasive. It does require barium, but no fasting, no prep. As long as I can get the lemonade stuff instead of that thick, chalky nasty stuff. That stuff is infinitely worse coming back up as it is going down. And since I can't keep it down... Anyway, unless something radically different comes up in this test, I have irritable bowel syndrome. He gave me a prescription to see if it improves my... um, situation.
Jimmy's asleep, perfect as always. We have stumbled across Dewey Cox on cable. Spend $100 a month on DirecTV and all they have on is crap.
I went to the doctor again today - one more test, this one non-invasive. It does require barium, but no fasting, no prep. As long as I can get the lemonade stuff instead of that thick, chalky nasty stuff. That stuff is infinitely worse coming back up as it is going down. And since I can't keep it down... Anyway, unless something radically different comes up in this test, I have irritable bowel syndrome. He gave me a prescription to see if it improves my... um, situation.
Jimmy's asleep, perfect as always. We have stumbled across Dewey Cox on cable. Spend $100 a month on DirecTV and all they have on is crap.
Friday, December 26, 2008
Thursday, December 25, 2008
Merry Christmas
Hope everyone has a wonderful day. Here is the last few days in photos...
The kids decorating cookies...
Jimmy, pre-surgery...
The new swingset, courtesy of their Nana and grandpa...
Jacob at the mall...
I don't believe in dragging Christmas out. It brings out the very best and worst in all of us. So, the tree comes down tomorrow. Onward to the New Year!
The kids decorating cookies...
Jimmy, pre-surgery...
The new swingset, courtesy of their Nana and grandpa...
Jacob at the mall...
I don't believe in dragging Christmas out. It brings out the very best and worst in all of us. So, the tree comes down tomorrow. Onward to the New Year!
Wednesday, December 24, 2008
Santa has arrived...
Presents are ready and we have an extra gift this year - Chloe has gone into heat. She has been acting weird all day and will not shut up. It just dawned on us what is up with her. Oh joy. As soon as she gives it a rest, we are getting her fixed.
Waiting for Santa...
More like waiting for sleeping children. Once I get the presents out the basement, I am going to go to bed myself.
Katie and Sarah are up from Texas and I had the kids decorating cookies. More than we need for Santa or even ourselves, that's for certain. I will likely drop them by friends tomorrow. Weight Watchers will need to begin again, sooner rather than later. DH is currently trying to explain Santa's visit with the help of a Magna Doodle. Jimmy is doing very well post surgery. I think the whole process is more draining on the parents rather than the child. I get so emotional - Jimmy is just such a fragile gift to me.
Hope Santa arrives at everyone's house safely.
Katie and Sarah are up from Texas and I had the kids decorating cookies. More than we need for Santa or even ourselves, that's for certain. I will likely drop them by friends tomorrow. Weight Watchers will need to begin again, sooner rather than later. DH is currently trying to explain Santa's visit with the help of a Magna Doodle. Jimmy is doing very well post surgery. I think the whole process is more draining on the parents rather than the child. I get so emotional - Jimmy is just such a fragile gift to me.
Hope Santa arrives at everyone's house safely.
Saturday, December 20, 2008
No Inauguration for Jimmy
I had toyed with trying to figure out a way to take the boys since we get the day off. Rope a couple of extra sets of hands and go down. He has an adaptive stroller we use for major outings. Somehow I don't think security will understand the distinction of a stroller needed because of disability. If it doesn't look like a wheelchair, it isn't.
I am quite disappointed, actually. I appreciate the need for security, but the Obama Inaugural Committee has just discriminated against a whole bunch of people - families with small children, kids with disabilities, and elderly people who need chairs. That's unfortunate.
I am quite disappointed, actually. I appreciate the need for security, but the Obama Inaugural Committee has just discriminated against a whole bunch of people - families with small children, kids with disabilities, and elderly people who need chairs. That's unfortunate.
Friday, December 19, 2008
A Much Needed Break...
Last day of school before two glorious weeks off. It's packed full of stuff - I will be far from bored. But.. at least I can wear jeans everyday!
I got a voicemail from my doctor's office about my CT Scan. Enlarged lymph nodes, but nothing else. I guess irritable bowel syndrome it is, though I am not a fan of the diagnosis of exclusion. Should I give up coffee? Red meat? I haven't had a glass of wine in so long, but it wasn't doing me any favors. And I love my cabernets.
At least I can shift my focus back to Jimmy in preparation for ear tube surgery number five on Tuesday.
I got a voicemail from my doctor's office about my CT Scan. Enlarged lymph nodes, but nothing else. I guess irritable bowel syndrome it is, though I am not a fan of the diagnosis of exclusion. Should I give up coffee? Red meat? I haven't had a glass of wine in so long, but it wasn't doing me any favors. And I love my cabernets.
At least I can shift my focus back to Jimmy in preparation for ear tube surgery number five on Tuesday.
Tuesday, December 16, 2008
Returning to my regularly scheduled blog...
I am back... my classes are over until mid-January. I had my CT Scan this morning (no, I still don't know why I have abdominal pain...) I have three days to get through until our holiday break - a break in name only as I will have not only my kids but two my sister's as well. I am looking forward to having time to clean out my minivan and the opportunity to wear jeans everyday.
More of an update tomorrow.
More of an update tomorrow.
Sunday, December 07, 2008
Another form letter...
As your constituent, I am writing to urge you to sign on as a cosponsor of the Disability Savings Act of 2008 (S. 2741). This bill was introduced by Senator Chris Dodd in March 2008.
The Act is designed to encourage individuals with autism (and other disabilities) and their families to save for disability-related expenses. It is meant to supplement rather than to replace benefits provided by other sources (including Medicaid and private insurance). In fact, S. 2741 authorizes specific “Disability Savings Accounts,” which are similar in many respects to existing 529 college savings plans. Provided certain rules are met, Disability Savings Accounts will be exempt from federal taxation.
Currently 1 in 150 children are diagnosed with autism and the financial costs are daunting to most families. This is why these savings accounts are so vitally important. They will help to reduce an unreasonable financial burden for millions of families and make the Internal Revenue Code more fair. Right now, parents can save, tax-free, to send a child to college. S. 2741 will allow parents to save, tax free to meet the life needs of a child with autism.
I urge you to become a cosponsor of the Disability Savings Act of 2008, S. 2741, and help children with autism live full and productive lives for all their years.
I need to pay more attention. I didn't know about the Disability Savings Act of 2008, but legislation like this is desperately needed. We would love the opportunity to save responsibly to help meet Jimmy's potential needs as an adult with a disability. Each boy has a college account that we fund, but funding Jimmy's is bittersweet as we will likely
Maybe we should move to Pennsylvania
NEW YORK, NY (July 9, 2008) -- Autism Speaks today commended Pennsylvania Governor Ed Rendell for signing into law the most comprehensive autism insurance bill in the nation. The new law provides $36,000 a year for Applied Behavior Analysis (ABA) and other necessary treatments, and goes beyond many state insurance reform measures by mandating coverage up to age 21 with no lifetime cap. It also creates, for the first time under Pennsylvania law, an expedited appeals procedure for denied claims as a safeguard to ensure compliance by insurance providers. Private insurers will be required to provide coverage beginning in July 2009.
No lifetime cap... wow! Nice.
Saturday, December 06, 2008
Biddy Ball for Dummies...
While Jimmy had a rare Friday session with his therapist in home, I took Jacob to his first Biddy Ball practice. He made a basket... while I was in the bathroom. It was his first attempt at organized sports and his lack of experience showed. Several of the kids had been on the team as four year olds the before. Jacob is barely five. I think we are going to set him up with a basketball to practice dribbling. He didn't get that at all. It will get better. Heck, he improved in the hour we were there.
This is my first competitive sports experience. I don't like this soccer mom thing, or in this case, basketball mom team. I want my baby to be instantly successful, I felt bad when I shooed him back to the group when he kept running over to me in the bleachers, and eying the other team with suspicion. Maybe I am not cut out for this kind of normal. Maybe martial arts would be better...
Uhhhhhhhhhh......
This is my first competitive sports experience. I don't like this soccer mom thing, or in this case, basketball mom team. I want my baby to be instantly successful, I felt bad when I shooed him back to the group when he kept running over to me in the bleachers, and eying the other team with suspicion. Maybe I am not cut out for this kind of normal. Maybe martial arts would be better...
Uhhhhhhhhhh......
Wednesday, December 03, 2008
Can I go to bed yet?
With the Ultimate Fighter, Wednesday nights can be long. I am particularly ADD tonight, so I am not paying as much attention to the fights as normal. Jacob is being a major chatterbox and making his father really crazy. And I am really crampy and want to go to bed. It looks like my Christmas gift this year will be a CT scan. I pick up the referral tomorrow. It's the last test before I get labelled as having garden variety Irritable Bowel Syndrome. It's kind of hard to imagine it being IBS given the level of abdominal pain that I have, but with the exception of that polyp, they have not come up with anything else concrete.
I have twelve more days of school before I get a break. I am really looking forward to it. I am exhausted. I need a nap, actually several. And my break doesn't really look that relaxing in my planner right now.
All reports are fabulous regarding the new IA. The teacher is doing a great job of keeping me in the loop. It is so hard to turn your kids over to other people, especially when he can't speak for himself. Maybe he is forever my baby, at least until he has his own voice. I wish I knew what he thought of his day, what he thought of the people who work with him. He never seems adverse to much of anyone, so I can't judge his feelings about others solely based on his behavior. I have to go on faith in those around him and those who are closest to me know that has let me down before - terribly, horribly, even tragically.
Enough... I am useless in this state. I am off to bed.
I have twelve more days of school before I get a break. I am really looking forward to it. I am exhausted. I need a nap, actually several. And my break doesn't really look that relaxing in my planner right now.
All reports are fabulous regarding the new IA. The teacher is doing a great job of keeping me in the loop. It is so hard to turn your kids over to other people, especially when he can't speak for himself. Maybe he is forever my baby, at least until he has his own voice. I wish I knew what he thought of his day, what he thought of the people who work with him. He never seems adverse to much of anyone, so I can't judge his feelings about others solely based on his behavior. I have to go on faith in those around him and those who are closest to me know that has let me down before - terribly, horribly, even tragically.
Enough... I am useless in this state. I am off to bed.
Forbes article on autism.. Health Needs of Autistic Children Often Unmet
Worth a read...
"Bono -- who currently serves on the board of "Safe Minds," a nonprofit advocacy group in Durham, N.C., focused on childhood neuro-developmental disorders -- explained how thoroughly the needs of an autistic child can alter a family's routine.
"Even if an autistic child is well enough to go to school, schools are often only half a day or so, so many parents choose to stay home so someone is there," she noted. "And many insurance plans won't cover all the things an autistic child needs, because they view the situation as a developmental disorder, not a disease. So, you have to pay huge expenses out of pocket. Otherwise, you just can't get occupational therapy. You can't get speech therapy. You sometimes can't even get basic blood work at your pediatrician. It's a real struggle.""
"Bono -- who currently serves on the board of "Safe Minds," a nonprofit advocacy group in Durham, N.C., focused on childhood neuro-developmental disorders -- explained how thoroughly the needs of an autistic child can alter a family's routine.
"Even if an autistic child is well enough to go to school, schools are often only half a day or so, so many parents choose to stay home so someone is there," she noted. "And many insurance plans won't cover all the things an autistic child needs, because they view the situation as a developmental disorder, not a disease. So, you have to pay huge expenses out of pocket. Otherwise, you just can't get occupational therapy. You can't get speech therapy. You sometimes can't even get basic blood work at your pediatrician. It's a real struggle.""
Monday, December 01, 2008
Sunday, November 30, 2008
Yes, I am still here...
It has been a crazy few weeks. Right now I am just grateful that I have only three weeks of school until the two week winter break.
Not that it is not going to be chocked full of appointments. I am managing to schedule all manner of doctor's visit in before the first of the year. Jimmy will be getting set five of ear tubes two days before Christmas. I feel pretty horrible putting him through surgery right before Santa, but he had two ear infections in five weeks in October/early November. I think having him on antibiotics so frequently is not good for him. So we go forward with round five...
I thought I was going to wind up under the knife as well. I went to a GYN because they found endometrial cells in my last pap (in the continuing quest to figure out where my abdominal pain is coming from) and I am back on birth control pills. He thinks endometriosis is unlikely, but I went mid-cycle and he was shocked at how I described my cycles. So even though my tubes are tied, I am on the pill again to regulate my cycles. He also has me thinking about a uterine ablation, which means that I would never get the monthly again (or if I did, it would be a shadow of its former self.) It is something to think about and I am doing just that... I will likely decide over the next few days. Even though I have no intention of having children again (thus the tubes being tied), the ablation further cements that decision. For a woman, it's pretty major. But I every 21 days, I am completely debilitated for a day or two by this function of nature. Maybe I shouldn't tinker with nature, but in terms of quality of life, getting those days back, even that whole week back where I don't go to the gym or the pool and I avoid really physical things... maybe it is worth it for me, worth it for my kids. But turning your back forever on the whole childbearing thing... It's hard... T, your thoughts would be appreciated!!!
All is going well in autism world, at least in mine. The Virginia bill that would mandate coverage made it out of the commission mid-month and will go a subcommittee and the hopefully the floor of the General Assembly. Just making it out of the commission is HUGE! Also, on November 5th, Barack Obama and Sen. Durbin introduced the Autism Treatment Acceleration Act of 2008, which addresses health insurance (though I am unclear if it just federal policies or what) and other issues related to the research and treatment of autism. The change that was most important for me and my son began the day after Obama's election. That is just huge. Talk about keeping your campaign promises!!!! I know there is some legislative assistant sitting on the Hill who worked his butt of drafting this - to him and his colleagues, I say thank you!!!! Hopefully, this can be passed and fully funded and implemented. You know the minute insurance companies have to pay for treating autism, there will be more money and time invested to finding treatments and cures for kids like Jimmy. Insurance companies would rather find a cure than throw money at kids like my son forever. I truly believe with action, it can happen.
Jimmy also had his first IQ test, to rule out mental retardation. It is sort of a requirement before we get him on the developmental delay waivers list to get additional help for him. They did. The report states that he is at least of average intelligence. IQ tests generally have sections that rely on verbal responses and others that are task driven. Jimmy can't do much with a verbal response, so to get an average score, it means he had to blow away that which required demonstration. I am thrilled with the results. Again, if there is a treatment or a cure that make him less stimmy, more verbal, more normal, have at least an average IQ gives him a place to begin in learning skills and being able to be a contributing member of society.
That's all I have for now. I owe you all some pictures and will try to get them up in the next day or so. Hope everyone had a wonderful Thanksgiving and enjoys the next few weeks as we roll on into the end of the year.
Not that it is not going to be chocked full of appointments. I am managing to schedule all manner of doctor's visit in before the first of the year. Jimmy will be getting set five of ear tubes two days before Christmas. I feel pretty horrible putting him through surgery right before Santa, but he had two ear infections in five weeks in October/early November. I think having him on antibiotics so frequently is not good for him. So we go forward with round five...
I thought I was going to wind up under the knife as well. I went to a GYN because they found endometrial cells in my last pap (in the continuing quest to figure out where my abdominal pain is coming from) and I am back on birth control pills. He thinks endometriosis is unlikely, but I went mid-cycle and he was shocked at how I described my cycles. So even though my tubes are tied, I am on the pill again to regulate my cycles. He also has me thinking about a uterine ablation, which means that I would never get the monthly again (or if I did, it would be a shadow of its former self.) It is something to think about and I am doing just that... I will likely decide over the next few days. Even though I have no intention of having children again (thus the tubes being tied), the ablation further cements that decision. For a woman, it's pretty major. But I every 21 days, I am completely debilitated for a day or two by this function of nature. Maybe I shouldn't tinker with nature, but in terms of quality of life, getting those days back, even that whole week back where I don't go to the gym or the pool and I avoid really physical things... maybe it is worth it for me, worth it for my kids. But turning your back forever on the whole childbearing thing... It's hard... T, your thoughts would be appreciated!!!
All is going well in autism world, at least in mine. The Virginia bill that would mandate coverage made it out of the commission mid-month and will go a subcommittee and the hopefully the floor of the General Assembly. Just making it out of the commission is HUGE! Also, on November 5th, Barack Obama and Sen. Durbin introduced the Autism Treatment Acceleration Act of 2008, which addresses health insurance (though I am unclear if it just federal policies or what) and other issues related to the research and treatment of autism. The change that was most important for me and my son began the day after Obama's election. That is just huge. Talk about keeping your campaign promises!!!! I know there is some legislative assistant sitting on the Hill who worked his butt of drafting this - to him and his colleagues, I say thank you!!!! Hopefully, this can be passed and fully funded and implemented. You know the minute insurance companies have to pay for treating autism, there will be more money and time invested to finding treatments and cures for kids like Jimmy. Insurance companies would rather find a cure than throw money at kids like my son forever. I truly believe with action, it can happen.
Jimmy also had his first IQ test, to rule out mental retardation. It is sort of a requirement before we get him on the developmental delay waivers list to get additional help for him. They did. The report states that he is at least of average intelligence. IQ tests generally have sections that rely on verbal responses and others that are task driven. Jimmy can't do much with a verbal response, so to get an average score, it means he had to blow away that which required demonstration. I am thrilled with the results. Again, if there is a treatment or a cure that make him less stimmy, more verbal, more normal, have at least an average IQ gives him a place to begin in learning skills and being able to be a contributing member of society.
That's all I have for now. I owe you all some pictures and will try to get them up in the next day or so. Hope everyone had a wonderful Thanksgiving and enjoys the next few weeks as we roll on into the end of the year.
Thursday, November 27, 2008
Saturday, November 15, 2008
The Vomit Comet
I apologize for my lack of posting. I am enrolled in an online class and it is kicking my butt.
There is nothing like starting your morning at the ungodly hour of 1:30 with the realization that your child has joined you. Oh, and the fact you have become privy to that little tidbit because he threw up in the bed next to you. I was up changing the bed, washing Jacob and the sheets. A few minutes later, the drill started again as he anointed the foam Batman couch - I will be replacing that, because there comes a time when you can't wash things anymore and expect them to be okay. It's obviously a stomach bug - he keeps "tooting" and running to the toilet. As long as he doesn't throw up again, I am happy.
There is nothing like starting your morning at the ungodly hour of 1:30 with the realization that your child has joined you. Oh, and the fact you have become privy to that little tidbit because he threw up in the bed next to you. I was up changing the bed, washing Jacob and the sheets. A few minutes later, the drill started again as he anointed the foam Batman couch - I will be replacing that, because there comes a time when you can't wash things anymore and expect them to be okay. It's obviously a stomach bug - he keeps "tooting" and running to the toilet. As long as he doesn't throw up again, I am happy.
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