Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 ---- edit 04/08/04 06:51:10 !SAReport SAReport Mercury/Malpractice Lawsuit Curb Fails Again In Senate SCHAFER AUTISM REPORT "Healing Autism: No Finer a Cause on the Planet" ______________ Thursday, April 08, 2004 Vol. 8 No. 61 >> PROMOTE YOUR MEETING, WORKSHOP OR CONFERENCE [DEADLINE April 25] List your event in The Autism Calendar free: http://www.sarnet.org/frm/cal-frm.htm Mercury/Malpractice Lawsuit Curb Fails Again In Senate COMMENTARY * Frist Should Recuse Himself From Debate RESEARCH * Lack of Specific Brain Protein Causes Marked Deficits In Learning, Memory PUBLIC HEALTH * EPA's Mercury Lingo Altered CARE * Parents Without Hope Are Giving Up Custody ADVOCACY * Earning A “Citizen's Ph.D. in How The [state] Legislature Works” * Task Force On Special Needs Bill Sets Goals ASPERGER AWARENESS * Asperger’s Film Triggers Touching Replies Malpractice Lawsuit Curb Fails Again In Senate Legislation intended to curb medical malpractice lawsuits falls short in the Senate, giving Republicans a third defeat on the issue. [by Jesse J. Holland for the Associated Press.] http://www.miami.com/mld/miamiherald/news/nation/8380859.htm?1c Senate Republicans lost a third attempt to curb medical malpractice lawsuits Wednesday but said they would keep forcing votes on an issue they blame for rising healthcare costs. On a 49-48 vote, Republican leaders fell 11 votes short of the 60 needed to force the Senate to consider their bill to limit pain-and-suffering damages that juries can award in malpractice suits against obstetricians and emergency-room doctors. Majority Leader Bill Frist, R-Tenn., said the GOP won't give up on getting medical malpractice legislation through the Senate in this election year. Physicians and insurance companies want it. “We are going to keep bringing this issue back because the crisis is getting worse,” Frist said. Florida Sens. Bob Graham and Bill Nelson, both Democrats, oppose the bill. `Urgent need' Republicans say their measure could help reduce unnecessary lawsuits and higher malpractice premiums that make it harder for doctors to practice. They failed last year and earlier this year to force votes on similar measures. “The crisis faced by obstetricians, gynecologists and emergency and trauma-care professionals illustrates the urgent need for national medical liability reforms,” the White House said in a statement. Democrats accuse Republicans of playing up to their donors in the medical and insurance lobbies and say that limiting damages would be unfair to injured patients and their families. “I've never seen such special-interest legislation,” said Sen. Patrick Leahy, D-Vt. 'Instead of going about doing the people's business, we seem to be going about the political action committees' business, and that's why, of course, nothing is getting done.” Interest Groups The American Medical Association and the American Insurers Association, longtime Republican allies, say frivolous lawsuits drive up insurance premiums for doctors. In several states, obstetricians have blamed higher insurance bills for forcing them to stop delivering babies. The Association of Trial Lawyers of America, allied to many Democrats, says insurers' poor returns on investments are more responsible for premium increases. The group also says state-imposed caps on damages do not lead to drops in premiums. * * * COMMENTARY Frist Should Recuse Himself From Debate [Editorial by the Jackson Sun, in Tennessee. The opinions expressed are those of the writer and not necessarily those of the Schafer Autism Report.] http://miva.jacksonsun.com/miva/cgi-bin/miva?OPINION/opinion_story.mv+link=2 00404086028722 U.S. Senate Majority Leader Bill Frist should recuse himself from the current debate over medical malpractice reform. It's not that we're questioning the motivations of the Senate's only physician. But as the most powerful person in the Senate, he has an ethical obligation to remove even the appearance of impropriety. The case being presented by the Foundation for Taxpayer and Consumer Rights is compelling. Frist's father and brother founded HCA Inc., the nation's largest for-profit hospital chain. HCA's malpractice insurance subsidiary would benefit financially by a bill being sponsored by the majority leader which would limit liability to $250,000 for trauma centers, gynecologists and obstetricians. And HCA isn't the only one that stands to benefit from this legislation. Frist and his family own $30.3 million in HCA stock. This is not to say that Frist should never weigh in on health care issues. The two-term senator from Tennessee has built his career on taking the lead in the fight for health care reform. As the Senate's only licensed physician, he brings a unique, insider's knowledge of the issue. But this is one time when that insider knowledge works against him. We don't doubt that Frist has only honorable intentions in sponsoring this legislation. But clearly, there is more than a passing appearance of a conflict here. How can Frist argue legitimately that his own family's extensive holdings in the health care field won't somehow color his judgment? Realistically, he can't. This isn't, as Frist spokesman Nick Smith argues, a matter of the Democrats playing politics. This is a matter of Frist doing the right thing, the ethical thing. It's a matter of him placing himself above the partisan fray, of removing any trace of a possibility that he could be accused of using his position for his own, or his family's, personal gain. Frist has other ways he can continue to lead the fight for health care reform, and he should. But this is one round that he should sit out. -- > DO SOMETHING ABOUT AUTISM NOW < -- SUBSCRIBE. . . ! . . .Read, then Forward the Schafer Autism Report. To Subscribe http://www.SARnet.org/ Or subs No Cost! _____ * * * RESEARCH Lack of Specific Brain Protein Causes Marked Deficits In Learning, Memory University of Texas Southwestern Medical Center at Dallas http://www.eurekalert.org/pub_releases/2004-04/uots-los040504.php A protein involved in the release of neurotransmitters in the brain is essential to learning and memory in mice, researchers at UT Southwestern Medical Center at Dallas have found. A study published today in Neuron offers the first evidence that lack of this protein – known as RIM1 alpha – causes profound deficits in the learning process. The discovery is a major step in understanding the molecular events that underlie learning and memory – complex processes that can be impaired in human neuropsychiatric disorders such as Alzheimer's disease, mental retardation and schizophrenia. “We found that when you delete this molecule, the mice essentially become incredibly stupid,” said Dr. Thomas Südhof, director of both the Center for Basic Neuroscience and the C. Vincent Prothro Center for Research in Basic Neuroscience at UT Southwestern and co-author of the paper. Researchers hope that further study of the protein's role in learning and memory will lead to potential treatments for some neuropsychiatric disorders. “This is the first indication that these proteins could be good targets for treatment of specific brain disorders,” said Dr. Craig Powell, assistant professor of psychiatry and neurology at UT Southwestern and the study's lead author. The researchers compared behaviors of normal mice to those of three sets of genetically altered mice – each of which was missing a specific protein involved in releasing neurotransmitters. The mice lacking the RIM1 alpha protein, unlike the others, lacked the ability to learn the location of an escape platform in a pool of water despite repeated attempts over several days. Dr. Eric Nestler, chairman of psychiatry at UT Southwestern and senior author of the study, said another notable finding was that, while the other two sets of genetically altered mice displayed some of the same cellular abnormalities as the RIM1 alpha mice, these other mice exhibited no behavioral deficits. “The brain was able to compensate for the loss of these other two proteins, but it was not able to compensate for the lack of RIM1 alpha,” Dr. Nestler said. “That tells us that RIM1 alpha is involved in so many important functions that, when it is missing, gross changes in behavior occur.” Proteins involved in the release of neurotransmitters are known as presynaptic proteins. In the past, postsynaptic proteins, as opposed to presynaptic proteins, were shown to play an active role in learning and memory. Postsynaptic proteins receive the neurotransmitters released by presynaptic proteins. Dr. Nestler said that some of the abnormalities in learning in the mice lacking RIM1 alpha are reminiscent of symptoms commonly seen in people with schizophrenia. “This could give us new insight into what's going wrong in the brains of people with schizophrenia – a disorder that is still not at all well understood,” Dr. Nestler said. These studies were funded via grants from the National Institute of Mental Health, The National Alliance for Research on Schizophrenia and Depression, and the Howard Hughes Medical Institute. To automatically receive news releases from UT Southwestern via e-mail, at http://www.utsouthwestern.edu/utsw/cda/dept3732637813.html * * * PUBLIC HEALTH EPA's Mercury Lingo Altered http://www.cbsnews.com/stories/2003/11/06/tech/main582309.shtml CBS/AP - White House staff made subtle changes to the language of proposed rules on mercury pollution that largely downplayed the chemical's health risks, a newspaper reports. The New York Times, quoting e-mail messages and other documents, says White House staff deviated from descriptions of mercury found in a National Academy of Sciences report. Scientists from the academy told the newspaper that none of the language was false — some of it made the wording clearer, and the rest pertained to scientific points that are debatable. But the White House usually came down on the side of wording that downplayed the risks of mercury, which the academy concluded can affect children's and festuses' brains, the newspaper said. According to The Times, one section first read: “Recent published studies have shown an association between methylmercury exposure and an increased risk of heart attacks and coronary disease in adult men.” It ended up reading: “it has been hypothesized that there is an association between methylmercury exposure and an increased risk of coronary disease; however this warrants further study as the new studies currently available present conflicting results.” A White House spokeswoman tells the paper the changes were part of the normal process of drafting rules. One scientist said the original National Academy report overstated some of the evidence against mercury. The proposed rules on mercury mirror the wishes of the energy industry, and according to The Times, some sections of the rules are nearly identical to what was proposed by lobbying firms with ties to current EPA officials. Attorneys general from 10 states and 45 senators want the rules thrown out, and the EPA administrator, Michael Leavitt, is reviewing them. Under the proposed rules, the Bush administration is proposing to give power plants up to 15 years to install technology to reduce mercury pollution. The EPA proposal would ease limits envisioned by the Clinton administration, while requiring immediate action in some cases. In 2001, EPA estimated that mercury could be cut by as much as 90 percent, to 5.5 tons, by 2008 if the best available technology were used as the Clinton EPA had hoped, according to EPA documents obtained by advocacy group National Environmental Trust. But the White House and EPA want to let utilities meet mercury pollution limits the first six years using the benefits of controls installed for other pollutants that cause smog and acid rain. The Clinton administration listed mercury as a “hazardous air pollutant.” The Bush administration would undo that by placing mercury into a less strict category of the Clean Air Act, which will allow companies to buy and sell pollution rights with other plants under a “cap-and-trade” system. This approach, EPA says, would eliminate about 14 tons a year of mercury emissions from the currently unregulated 48 tons a year generated by coal-fired power plants. Such plants account for about 40 percent of the nation's mercury pollution. After that, the pollution-trading proposal would cut an additional 19 tons a year of mercury emissions, EPA says. The result would be a 70 percent reduction — from 48 tons to 15 tons — by 2018, the agency says. Cap-and-trade programs set a national limit on emissions and then allow companies to choose whether to reduce emissions or buy credits from plants that do. This rewards firms that innovate first and imposes costs on those that do not. Supporters say the system allows the market to pick the most cost-effective way to reduce pollution. Proponents frequently point to the acid rain trading program begun in 1990 as the model for using market forces to reward companies that surpass their pollution reduction targets. But it would mean the toughest mercury requirements would not take force until 2018. Last fall, scientists told the Food and Drug Administration that it should issue stronger warnings to pregnant women and young children about mercury levels in fish, particularly tuna. White, or albacore, tuna has nearly three times as much mercury as cheaper “light” tuna. Mercury pollution can taint fish once it enters water and turns into a more dangerous form, methyl mercury. Also last year, the Bush administration revised the Clean Air rules to allow power plants to avoid mandatory pollution controls when they make limited capital improvements to their facilities. The White House said the move would encourage power plants to install newer, cleaner technology. Twelve states and several Northeast cities sued the EPA this fall to block the new Clean Air rules, which they argue will weaken protections for the environment and public health. ©MMIV, CBS Broadcasting Inc. . This material may not be published, broadcast, rewritten, or redistributed. The Associated Press contributed to this report * * * CARE Parents Without Hope Are Giving Up Custody Some say mental health system is broken [by Debra Jasper And Spencer Hunt for Gannett News Service.] http://www.newarkadvocate.com/news/stories/20040404/localnews/170656.html Christy Mathews struggled for years to pay for treatment for her mentally ill daughter, a 15-year-old who burns and cuts herself and last year threatened to stab her mom with a steak knife. Desperate and afraid, Mathews tried to get Hamilton County officials to pay for Lauren to live in a psychiatric facility. A social worker finally told her she could get help -- if Mathews gave up custody of her daughter to the county. “I shouldn't be forced to give my daughter up to get her the help she needs, but that's how the system works,” she says. “What you have to go through is unreal.” Mathews refused to turn over Lauren, but thousands of parents in Ohio and elsewhere have been forced to give in. In the past three years, Ohio parents who've run out of insurance or money have given up custody of as many as 1,800 children so the government will pay to treat their mental illness, a Cincinnati Enquirer investigation has found. Even then, kids don't always get the help they need. Ohio counties place more than 7,000 children a year in centers where some are abused, molested, improperly drugged and left in wretched conditions, an examination of inspection records, court documents and interviews reveals. At least 38 of Ohio's 88 counties acknowledge taking children from parents, who give up their rights to say where their kids are sent for treatment, how long they stay or even what kind of medicine they are given. County officials say that obtaining custody is the only way they can tap federal money to cover treatment costs that run as high as $1,000 a day. But not even Michael Hogan, director of Ohio's Department of Mental Health, defends the practice. “We must stop trading custody for care. It's terrible,” he says. “A civilized society should not do this.” Trading custody for care is a “travesty,” adds Gayle Channing Tenenbaum, a lobbyist for the Ohio Public Children Services Association. “As a state,” she says, “we've totally given up on these kids.” A 'terrible problem' More than 86,000 children in Ohio are mentally ill, and many parents find that insurance money for treatment runs out long before their kids get better. Unlike coverage for physical diseases and ailments, policies typically limit benefits for mental illness to 20 to 30 days a year. That's usually far too little. So parents frequently spend years bouncing from one agency to another -- only to be told by each that no money or treatment options are available. “When it comes to mental health, the system is lacking, lacking, lacking,” says John Saros, director of Franklin County Children Services. “And when the system isn't working, very decent parents go to extreme measures for their child. It's very, very frustrating, because I see us doing bad things to kids in the name of trying to help them.” Parents find themselves staggered not only by the costs, but by a complex bureaucracy that puts as many as five different agencies in a single county in charge of different aspects of one child's care. Ohio's 88 counties operate 55 public children's services agencies, 33 public children's services boards, 43 mental health and drug addiction boards and another seven mental health boards. The Ohio Department of Job and Family Services and the state Department of Mental Health, the two state agencies that are supposed to watch over all the county agencies, don't even share information on children. Barbara Riley, assistant director in Job and Family Services, first said federal law prohibited the agencies from talking to each other about children in the system. After checking with her legal staff, she said they could share data -- but don't. “I have learned that I have more latitude than I thought,” she says. “The conversation now has to start about what we know, who knows it and where information is housed.” While officials try to sort it all out, parents who navigate the different agencies might get lucky and find treatment for their children. But thousands never do, or they live in poor counties where there is no treatment to be had. “There are long waiting lists, a lack of well-trained people, and a lot of times people don't get referred for help unless they are suicidal,” says Tenenbaum, the children's lobbyist. As a last resort, some parents turn to county child welfare agencies that can tap into federal funds originally set aside to help care for abused or neglected children. But such agencies can't get the federal money unless children are in government custody -- so parents desperate for help sign away their kids. “It's really sad. Families do everything from giving up custody to selling their houses to pay for care,” says Dr. Mike Sorter, director of the division of child psychiatry for Cincinnati Children's Hospital Medical Center. “What other illness is there that forces you to give up custody of your child in order to get them help?” Staggering costs Ohio's system is so disorganized that no one can say exactly how many parents have been forced to give up their mentally ill children, although the Enquirer found the practice occurs in at least 38 counties, including Hamilton, Butler, Warren and Clermont. Counties that don't trade custody for care include those that pool resources from different agencies, and rural counties with fewer children. The state Mental Health Department estimates that 300 families give up custody of children each year, but advocates who work in the field maintain that 600 is a more accurate number. Giving up custody is no formality, either. Parents often have to go to court to get their kids back. Yet a federal study found that families in 13 states, including Kentucky, gave up custody of 12,700 kids in 2001. Roger Shooter, director of the Knox County Job and Family Services agency, says counties are in a no-win situation. They don't want to take custody from parents, but officials say they can't afford the costs of treating a mentally ill child without federal help. “We've got kids who are purely mentally ill that are costing $350 a day,” Shooter says. Such rates are commonplace, records and interviews show. Last year a treatment center charged one county mental health board $151,000 -- $414 a day -- for treatment alone for one child. Centers charge child welfare agencies additional money -- as much as $340 a day per child -- for room and board. Add the cost of medication, and costs can grow to more than $1,000 a day for children who are mentally ill, especially if they also are drug addicted, sex offenders, fire setters, violent or schizophrenic. Some question how long Ohio taxpayers can continue to pay such astronomical bills -- even with money from the federal government. “There is no way parents can afford the treatment centers, but there is serious concern as to whether or not the child welfare system can afford them, either,” says Saros, the Franklin County director. Some children are sent out of state when beds aren't available locally. County officials say that social workers have traveled as far away as Missouri or Texas to check on children. In December, counties had 398 kids in out-of-state homes, including treatment centers, group homes and foster homes. “Finding beds is a huge issue. If a kid comes in at 5 p.m. on a Friday afternoon you can't leave him in the waiting room all weekend. You have to find a place for him and move him through,” Saros explains. “These aren't easy kids to help. Some have learned a lot of horrible behaviors, and everybody is trying to figure out what to do with them.” -- > WHAT SUBSCRIBERS CAN DO ABOUT AUTISM NOW < -- TELL A FRIEND ABOUT THIS NEWSLETTER http://home.sprynet.com/~schafer/ref.htm _____ * * * ADVOCACY Earning A “Citizen's Ph.D. in How The [state] Legislature Works” Debating the Carson Smith Special Needs Scholarship [in less than two weeks, Unlocking Autism will be hosting a conference in Washington D.C. on skills for individual political advocacy of autism. Here is one parent’s experience with the process in Utah. By Cheryl Smith.] http://www.sltrib.com/2004/Apr/04042004/commenta/153643.asp Over the past several months, I have earned a citizen's Ph.D. in how the Legislature works. For countless hours I have worked with other parents of special-needs children in talking to legislators and trying (unsuccessfully) to talk with Gov. Olene Walker. After all this hard work, the lesson I walk away with is that too many legislators are too willing to listen to too few special interests. Last fall I called my representative, Morgan Philpot, and asked him whether the state could help me educate my 5-year-old son, Carson. I shared our story with him and gave him a tour of the Carmen B. Pingree School for Children with Autism. After seeing how that school blesses so many families, and hearing about all the families on its waiting list, Morgan called -- he was still at the school -- and asked legislative staff how the state could help me. When the legislative session opened, Morgan and his co-sponsor, Rep. Merlynn Newbold, were sponsoring the Carson Smith Special Needs Scholarship. I was leading a ragtag band of moms and dads in lobbying the entire House of Representatives. We sent our little green notes in, and waited outside the House chambers, hoping that our legislators would come out and, if they did, that we would recognize them. Of course, we weren't the only people waiting. To my surprise, the people who claimed to be representing me, the ones who should care about the kids the most -- the PTA, the Legislative Coalition for People with Disabilities and the Utah Education Association -- were our biggest opponents. They never asked for my opinion, or that of any parent I was working with. In fact, when the LCPD decided to oppose the bill, fewer than 10 of the 1,800 members voted. Outside the House, they told me I would lose my rights, but I thought, “A fat lot of good those rights have done me so far!” They told me the bill would only help some of the children, that we needed to find something that would help all of the children. I had read the bill and couldn't figure out what they meant. Any child in special education was eligible for the scholarship. When the House Education Committee considered the bill, dozens of parents dragged their children into the committee room. After 1 1/2 hours of speechifying by the committee members, they decided to let the public speak. It was so late in the evening, though, that they could only hear from five people for the bill, and five people against it. That meant everybody against the bill got to speak, and just a tenth of its supporters could speak. I don't know all the technical procedures it went through to get onto the House floor, but it made it. As I sat in the House gallery, I could barely contain myself. Morgan and Merlynn were sparring with Reps. Kory Holdaway and Dave Hogue. When Holdaway made a motion to kill the bill, I held my breath, hoping for the best, but fearing the worst. After 2 1/2 hours of debate, the House finally voted 43-29 in favor of the bill. By this time, there were just a few days left in the session. I met Sen. Curt Bramble, the bill's Senate sponsor, who kept telling me not to worry. But the bill wasn't even on their list of bills to consider. Then as if by magic, on the day before the session was over, Sen. Bramble was debating the bill on the Senate floor. When they finally voted 17-8 in favor of the bill, the tears burst through. All those hours outside the House, outside the Senate, in the committee hearing were going to pay off. The state was going to help me, and hundreds, maybe even thousands of other families, get the education their children need. I knew we still needed the governor to sign the bill, but I couldn't imagine why she wouldn't. She had always been pro-education, and I had no idea why she would change. I didn't hear about the meeting she had with Morgan and Merlynn until five minutes before it started. I would have liked to attend that meeting, but I don't think it would have mattered -- Gov. Walker had decided to veto the bill. Hoping to give it one more try, we brought our children to her office the following day, but she just sent out a deputy who couldn't answer any of our questions. Now I hear the Legislature is considering a veto override in addition to an alternative plan that may not be legal. I don't know how that happens. I'm just a mom trying to get the best for my son, who can't fight for himself. * For more information on Unlocking Autism’s Political Autism Conference: http://www.unlockingautism.org * For a follow-up account of this story, see next clipping below. * * * Task Force On Special Needs Bill Sets Goals [by Tiffany Erickson for the Deseret Morning News.] http://deseretnews.com/dn/view/0,1249,595054516,00.html The task force charged with figuring out how to spend $1.4 million under the governor's veto-compromise plan for the Carson Smith Special Needs Scholarships Bill made their first moves Wednesday to establish a program to help meet the needs of the severely disabled in private schools. The group voted to target only the students with severe disabilities defined by the state Office of Education. That translates into focusing on students requiring at least three hours of specialized instruction a day with autism or other disabilities. Autism seemed at the forefront but so far the group believes the scholarships should be available to other disabilities mentioned in the Carson Smith Special Needs Bill such as hearing impairment, visual impairment, traumatic brain injury and mental retardation. “I am most concerned about those falling through the cracks, and we would be remiss not to look at other disabilities,” said Cheryl Smith, a parent of an autistic child. Additionally, the group voted to have funds weighted to early intervention — first priority given to ages 3-9 years old and second to ages 10-21. The ratio will be determined later. The task force comes as part of Gov. Olene Walker's plan for HB115. The bill would have given up to about $5,400 in private school vouchers for parents of students with disabilities. Walker vetoed the bill, which she said raised constitutional concerns over having the state Board of Education oversee a private school program. But she left in a budget bill the $1.4 million HB115 gave to the program. She hopes to give that money to the board to give grants or contracts to private schools teaching students with disabilities. Walker's plan still must be approved by the Legislature, likely in a special session, but several legislators are calling for a veto override. The senate reports that they have enough votes to override the veto but there is no word yet on the House votes. The task force is comprised of parents and advocates of children with autism and other disabilities, state education officials, a lawmaker and a professor from the University of Utah. Interim State Superintendent Patrick Ogden, chair of the task force, said by the end of the month the group hopes to: Determine a target population Develop a model identifying types of service and providers Develop and recommend an accountability system to assure the funds are being used effectively. “I think we're right on track. I believe that the task is manageable and should be coming up with a recommendation in a reasonable amount of time,” said Ogden. * * * ASPERGER AWARENESS Asperger’s Film Triggers Touching Replies [by Dennis McCarthy for the LA Daily News.] http://www.dailynews.com/Stories/0,1413,200~20954~2069201,00.html The e-mails and letters come in from as far away as Mexico City and Canada, from parents with autistic children wanting to know how they can get a copy of the 10-minute film Taylor Cross has made on what it's like to be autistic. They ask -- plead, really -- for a chance to buy the film, hoping it may hold the keys to a breakthrough with their own autistic kids. As I wrote last week, Taylor, a 15-year-old freshman at Newbury Park High School, who doctors said would probably never walk or talk, interviewed a few dozen other autistic kids, 9 to 19, to have them verbalize what it is they see and feel when they look out at the world. The film is called “Normal People Scare Me,” and it's touched a nerve. From 6 p.m. to 9 p.m. April 24, it will be one of 25 local student films being shown for the first time at a student film festival at Chaminade High School in West Hills. But it's a long way to West Hills for a movie when you live in Mexico City, Alberta, Canada, or the dozens of states across this country from which I've received e-mails and letters since the column ran last Thursday. “The response has been overwhelming, and we're looking into the duplication costs to see how to make it available to everyone who wants to see it,” said Keri Bowers, Taylor's mother. I'll get to the distribution in a minute. First, the e-mails and letters. Some of them tear your heart out. “I felt like crying when I read the article,” wrote Carolina Eberstadt from Mexico City. “My biggest dream is being able to talk with my autistic son, Jose Ignacio, who is almost 9 years old. “My son uses basically three words -- 'yes,' 'no' and 'juice.' He goes to special school, and we hope we can make it to a regular school someday. Is there any way we could buy the video? Please.” From Charles Whiting in Wheeling, W.Va.: “I am the parent of an autistic boy, a beautiful redhead who was also written off when he was diagnosed. But his mother and I were far too dense to listen. “After five years of hard work and unmitigated dedication, he has gone from nonverbal, low 30s IQ, to a child who can communicate many of his needs verbally. He has left the realm of 'mentally retarded' by testing at a high 70s IQ. “It would be wonderful if parents, families, teachers and others could be given the opportunity to see Taylor's film and be introduced to 'their' world.” Theresa Rugel from Corona said she would gladly drive up to West Hills to see the film with her 8-year-old son -- who has HFA, or high functioning autism -- “if he was having a good day.” She couldn't be sure because he has a hard time being in public with people close to him, she said. “There are so many times that I wish I knew exactly what my son was thinking or feeling so I could help him, instead of feeling helpless as he becomes so frustrated and anxious. “I think this film may help us open the door, and help my son release some of his feelings that are bottled up.” From Melinda Renouf of Austin, Texas, mother of a 5-year-old autistic son: “Every day, I wish I could get into his world and understand how he thinks and feels. “We try to bring him back into our world, and although we have seen progress it is not at a level where I feel comfortable sending him to a regular school. I know you can't shelter your child 24 hours a day, but I don't want to send him into a hornet's nest, either. “I would love to somehow see this film so parents, teachers and other children can better understand how an autistic child thinks and feels.” These are just a few of the e-mails and letters I've received, as has Taylor's mom, Keri, who started an organization called Pause4kids, which provides programs and services for special-needs children and their families. “If somebody had handed me a tape like this when Taylor was a baby, and told me this is what the future for your child could look like, it would have meant so much,” she said. Distribution and the cost of a tape of Taylor's 10-minute film, along with a longer 45-minute version being put together with the help of Joey Travolta, are still being worked out. The older brother of actor John Travolta owns Entertainment Experience in Woodland Hills, which offers filmmaking and acting classes for special-needs children. To reserve copies of Taylor's film when it's available, call Pause4kids at (805) 497-9596, or Travolta's Entertainment Experience company at (818) 591-3345. The 10-minute version of Taylor's film also will be shown by the Ventura County Autism Society at 7 p.m. May 14 at the society's Camarillo office, 639 E. Los Posas Road, Building E, Suite 121. For reservations, call (818) 207-0135. Also, April is National Autism Awareness Month. Locally, the Cure Autism Now Foundation is hosting its second annual Walk Now Los Angeles event at Dodger Stadium on April 17 in Lot 10. There will be a 5K walk, resource fair, and family fun festival from 8 a.m. to 2 p.m., including an 11:30 a.m. performance by singer Chaka Khan. There is no fee to participate. For more information, call (888) 828-8476 (8-AUTISM). [Editor’s note: the LA Daily News column this feature appeared in is not syndicated, nor has it been “picked-up” and distributed nationally or internationally by the wire services. However, The Schafer Autism Report, which reproduced the column, is distributed to families from Mexico to Canada and beyond and is probably the source for this widespread interest in the film. While Asperger Syndrome is on the autism spectrum, it is questionable how much the higher functioning Asperger experience reflects the reality of those with more typical autism. Let’s hope these interested parents aren’t too disappointed as a result of the confusion created from the blurring of Asperger’s with the rest of autism.. We’ll know more when the film copies becomes more available. - LS.] _____ LOOKING FOR SOMETHING - ANYTHING - ABOUT AUTISM? Search The Most Complete Autism News & Info Database The Schafer Autism Report -- Updated Fresh Daily -AuTeach/messages . . .OR ASK A NEIGHBOR: Free Readers' Posts http://home.sprynet.com/~schafer/frm/postsc.htm ______ COPYRIGHT NOTICE: The above items are copyright protected. They are for our readers' personal education or research purposes only and provided at their request. Articles may not be further reprinted or used commercially without consent from the copyright holders. To find the copyright holders, follow the referenced website link provided at the beginning of each item. _______________ Lenny Schafer, Editor edit Edward Decelie Debbie Hosseini Richard Miles Ron Sleith Kay Stammers _____________ SAReport mailing list SAReport You can at: You can change your options at: http://lists.envirolink.org/mailman/listinfo/sareport delivered to: dadelp Quote Link to comment Share on other sites More sharing options...
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