Mailings
June 28th 2007-July 13th, 2007
IMPORTANT ANNOUNCEMENT
attention: Parents who have home-based ABA program
Are you looking to hire students to be part of your clinical team? ABACUS has a number of students listed as “Do” providers. Visit ABACUS and click on “Search for Providers”.
www.abacuslist.ca
And
Summer Camp Relief for Parents
Toronto, July 10, 2007 — At least 647 Ontario children with autism will now be able to attend summer camp.
This morning, Honourable Mary Anne Chambers, Minister of Children and Youth Services announced a total investment of $535,000 to subsidize camp programs and to assist families in paying for one-to-one workers who support their children with Autism Spectrum Disorder (ASD) to participate in summer camp programs in communities across Ontario .
Autism Ontario Chapters Will Receive Subsidies To Support Their Established Camp Programs
This summer has been particularly difficult for parents in the Dufferin, Hamilton , Niagara Region, Sarnia , and York Region chapters. While each chapter and its many volunteers work the entire year to raise the necessary funds to operate their summer camps, shortfalls in donations from federal contributions and corporate donations were leading to cutbacks in the number of children that could be served.
For example, Autism Ontario-York Region Chapter’s Camp AOK was planning to greatly reduce the number of children with autism that it could serve.
Paul Kalmykow, Camp AOK Committee Coordinator, said “The shortfalls were leaving us with very few options. For the first time in the program’s 20 years, we were considering cancelling services altogether.”
Upon hearing the news of the subsidy for their Niagara Region Camp Program, Mike Gowan, parent and Niagara Region Chapter President, said, “Last summer we offered placements for 30 children in our summer camps, this year the demand is for 72. This was stretching our budget beyond its limit. With this extra money, we will be able to continue to offer very specialized programs to Niagara ’s children with ASD that desperately need summer learning services.”
Subsidies for an Additional 500 Children
In addition to the funding for the six Autism Ontario camp programs, at least 500 Ontario families with a child attending a community summer camp program may apply for reimbursement of up to $585 per child. Reimbursements will be given specifically to pay for one-to-one support workers hired to accompany their child with ASD to a community summer program.
“I have had so many families tell me that while they can often afford the camp fees, paying for a one-to-one support worker for their child is simply prohibitive,” said Deborah Kitchen, parent and Autism Ontario President.
“Without a worker, it is impossible for most children with autism to attend an integrated camp setting and to have a safe and positive learning experience. More often than not, many of our kids end up missing out on social learning from camp experiences because of these extra costs,” Kitchen added.
PARENT INFORMATION
Parents interested in learning more about the 2007 Summer Camp for Children with Autism should visit www.autismontario.com/summercamp program and application details.
Minister of Children & Youth Services, Mary Anne Chambers Leaving Politics
Autism Ontario would like to thank Minister Chambers for her efforts on behalf of children and youth with Autism Spectrum Disorders.
The Toronto Star article about her decision not to run in the upcoming election is here: http://www.thestar.com/article/234628
From a listmate:
Reversal of autism gene first step towards cure; MIT breakthrough with mice counteracts the Fragile X syndrome that weakens the brain's electrical signals
The Edmonton Journal
Jun 28, 2007
Page: A19
Section: Body & Health
Edition: Final
Dateline: WASHINGTON, D.C.
WASHINGTON, D.C. - Researchers say they have partially reversed in mice a common cause of autism and mental retardation, and that it might be possible to design a drug that would do the same thing for people.
They found that by blocking a normal enzyme, they could reverse some of the brain abnormalities associated with the inherited condition, called Fragile X syndrome, and correct some of the symptoms in the mice.
"This is the first case where the reversal of Fragile X syndrome (has been) demonstrated in the animal model, not only at the level of behaviour but also in the underlying cellular mechanisms," said Susumu Tonegawa, the Massachusetts Institute of Technology head researcher.
Fragile X syndrome is the most common hereditary cause of mental retardation and autism. The one in 4,000 boys and one in 6,000 girls who are affected often have developmental delays and hyperactivity, and engage in aimless, repetitive behaviours.
It is caused by a mutated gene on the X chromosome that affects dendritic spines -- the long, thin structures that allow brain cells to communicate with each other. They become too numerous, as well as too long and thin, weakening these electrical signals.
"This has been thought to be the major underlying reason why these patients show behavioural abnormalities," said Tonegawa, who worked with researchers in India and South Korea.
The researchers noticed that when they blocked the action of another nerve cell-shaping enzyme called P21-activated kinase, or PAK, in the brains of otherwise normal mice, they could produce the opposite effect: the dendritic spines in these mice were short and thick, and fewer were formed.
The mice also had abnormally low levels of electrical signalling, according to the report, published in this week's issue of the Proceedings of the National Academy of Sciences.
So the scientists bred mice with both the Fragile X gene mutation and a version of PAK that was programmed to fail.
This inactive form of PAK only kicked in a month after the mice were born. And once it did, the researchers found that symptoms of Fragile X, which include excessive movement and difficulty completing memory tasks, were greatly reduced in the mice.
When they looked at their brains, the dendritic spines looked fairly normal.
While such genetic manipulation would be difficult to recreate in human children, a chemical compound that can directly inhibit the protein may make an effective drug, Tonegawa said.
___________________________
Scientists Reverse Symptoms of Autism in Mice
Inhibiting brain enzyme might ease behavioral problems as well
URL of this page: http://www.nlm.nih.gov/medlineplus/news/fullstory_51364.html (*this news item will not be available after 09/23/2007)
HealthDay
Krisha McCoy
Monday, June 25, 2007
MONDAY, June 25 (HealthDay News) -- Scientists may have uncovered a way to reverse symptoms of mental retardation and autism in mice.
Researchers from the Picower Institute for Learning and Memory at Massachusetts Institute of Technology (MIT) genetically manipulated the mice to model Fragile X Syndrome (FXS), which is the leading inherited cause of mental retardation and the most common genetic cause of autism.
FXS is tied to a mutated X chromosome gene called the fragile X mental retardation 1 (FMR1) gene. When this gene is mutated, it can cause mild learning disabilities to severe autism.
"Our study suggests that inhibiting a certain enzyme in the brain could be an effective therapy for countering the debilitating symptoms of FXS in children, and possibly in autistic kids as well," study co-author Mansuo L. Hayashi, a former Picower Institute postdoctoral fellow currently at Merck Research Laboratories in Boston , said in a prepared statement.
The enzyme that was inhibited in this study is called p21-activated kinase, or PAK, and it affects the number, size and shape of connections between neurons and the brain.
When PAK's activity was halted, the brain abnormalities in the FXS mice were reversed.
"Strikingly, PAK inhibition also restored electrical communication between neurons in the brains of the FXS mice, correcting their behavioral abnormalities in the process," co-author Susumu Tonegawa, 1987 Nobel laureate and Picower Professor of Biology and Neuroscience, said in a prepared statement.
Tonegawa said that there are known chemical compounds that can inhibit the activity of PAK, which is something that may be useful in developing drugs to treat FXS.
The FXS mice showed abnormalities similar to those in FXS patients, including hyperactivity, purposelessness, repetitive movements, attention deficits, and difficulty with learning and memory.
When the activity of PAK was inhibited, these abnormalities were partially or fully ameliorated.
"Notably, due to an elegant genetic manipulation of method employed by the Picower Institute researchers, PAK inhibition in the FXS mice did not take place until a few weeks after appearance of disease symptoms. This implies that future treatment may still be effective even after symptoms are already pronounced," Tonegawa said.
The findings were reported in the June 25-29 online early edition of the Proceedings of the National Academy of Sciences.
Rights panel rejects disabled support questionnaire; Three-member panel agrees with parents that system favours physically challenged over mentally challenged
The Guardian(Charlottetown)
Jun 28, 2007
Page: A3
Section: Provincial
Byline: Ron Ryder
The system set up to award aid to disabled Islanders favours the physically challenged over the mentally challenged, a human rights panel has ruled.
In a decision made public Wednesday, a three-member panel of the Human Rights Commission agreed with parents that the functional independence measurement (FIM) questionnaire used by the Disability Support Program had the effect of making more aid available to claimants whose disabilities are physical.
Four families of disabled persons filed rights complaints alleging discrimination by the program set up to provide families with financial assistance in dealing with disabilities.
The panel held up a second ground of appeal, saying that it was unfair to test the means of families of disabled minors before determining how much assistance to give them.
The panel discarded a third avenue appeal, saying that the DSP's monthly funding ceilings and lifetime limits on certain services were not a form of discrimination because they were evenly applied. The panel's rejection of the FIM questionnaire goes to the heart of the Island's disability supports.
DSP workers use the 18-question questionnaire to assess the level of assistance someone can claim, award a numerical score from one to seven for each question and use that to set a limit on how much support one person can receive. Depending on the score, a person can get $300, $700, $1,500 or $3,000 in support per month.
But panelists found that since 13 questions focused on physical disabilities and just five focused on cognitive challenges, it favoured one group over the other, especially in cases where someone was severely disabled in one sphere but not the other.
"The 38 per cent level of functioning would entitle the most highly physically disabled person to a maximum monthly support of $1,500," they wrote in their decision.
"The 76 per cent level of functioning would entitle the most highly mentally disabled person to a maximum monthly support of $300."
Carolyn Bateman, whose 25-year-old son Adam has both mental and physical challenges resulting from autism, said she was happy to see the DSP sent back for re-examination.
"My understanding is that once a program has been found to be discriminatory government has to stop," she said.
"Five years ago - as soon as they announced this program we could see the problems with it. It began when they were announcing the implementation plans but we've had deaf ears ever since then."
Bateman said the autism advocacy group Stars for Life is hopeful of meeting with Premier Robert Ghiz and Health Minister Doug Currie to discuss ways of improving services to the autistic and to families of disabled people generally.
"We made some progress today, it's a shame we couldn't have achieved the same thing by sitting around a conference table," she said. "Of course government could always appeal this and then we'd have to really consider what to do.
"Parents of disabled children work with them 24 hours a day. I think when someone is able to take on this fight, there are a lot of parents who say, 'Thank God because we just don't have the time or money'."
rryder@the guardian.pe.ca
______________________________________
P.E.I. tribunal rules disability funding program is discriminatory (PEI-Disabled-Ruling)
Canadian Press
Jun 27, 2007
CHARLOTTETOWN (CP) _ The system set up to award aid to disabled Islanders favours the physically challenged over the mentally challenged, a human rights panel has ruled.
In a decision made public Wednesday, a three-member panel of the Human Rights Commission agreed with parents that the functional independence measurement questionnaire used by the Disability Support Program had the effect of making more aid available to claimants whose disabilities are physical.
Four families of disabled persons filled rights complaints, alleging discrimination by the program set up to provide families with financial assistance in dealing with disabilities.
The panel also said it was unfair to test the means of families of disabled minors before determining how much assistance to give them.
The panel's rejection of the questionnaire goes to the heart of the Island's disability supports.
Program workers use the 18-question questionnaire to assess the level of assistance someone can claim, award a numerical score from one to seven for each question, and use that to set a limit on how much support one person can receive.
Depending on the score, a person can get $300, $700, $1,500 or $3,000 in support per month.
But panelists found that since 13 questions focused on physical disabilities and just five focused on cognitive challenges, it favoured one group over the other, especially in cases where someone was severely disabled in one sphere but not the other.
Carolyn Bateman, whose 25-year-old son Adam has both mental and physical challenges resulting from autism, said she was happy to see the program sent back for reexamination.
"My understanding is that once a program has been found to be discriminatory, government has to stop," she said.
"Five years ago _ as soon as they announced this program _ we could see the problems with it. It began when they were announcing the implementation plans but we've had deaf ears ever since then."
Bateman said the autism advocacy group Stars for Life is hopeful of meeting with Premier Robert Ghiz and Health Minister Doug Currie to discuss ways of improving services to the autistic and to families of disabled people generally.
"We made some progress today. It's a shame we couldn't have achieved the same thing by sitting around a conference table. Of course government could always appeal this and then we'd have to really consider what to do," she said.
(Charlottetown Guardian)
____________________________________
Wrestler Benoit and wife argued over son's care in days before killings: lawyer (Dead-Wrestler-Cda)
Jun 27, 2007
By Greg Bluestein
ATLANTA (AP) _ In the days before pro wrestler Chris Benoit killed his wife and child and hanged himself, the couple argued over whether he should stay home more to take care of their mentally handicapped seven-year-old son, a lawyer for the wrestling league said Wednesday.
``I think it's fair to say that the subject of caring for that child was part of what made their relationship complicated and difficult, and it's something they were both constantly struggling with,'' said Jerry McDevitt, a lawyer for World Wrestling Entertainment. ``We do know it was a source of stress and consternation.''
McDevitt said the wrestling organization learned from the couple's friends and relatives that the Benoits were struggling with where to send the boy to school since he had recently finished kindergarten.
He also said Benoit's wife didn't want him to quit wrestling, but she ``wanted him to be at home more to care for the kid. She'd say she can't take care of him by herself when he was on the road.''
The child suffered from a rare medical condition called Fragile X Syndrome, an inherited form of mental retardation often accompanied by autism, McDevitt said.
Over the past weekend, authorities said, Benoit strangled his wife, suffocated his son and placed a Bible next to their bodies before hanging himself with a weight-machine cable in the couple's suburban home. No motive was offered for the killings, which were discovered Monday.
Anabolic steroids were found in Benoit's home, leading officials to wonder whether the drugs played a role in the slayings. Some experts believe steroids cause paranoia, depression and violent outbursts known as ``roid rage.''
The WWE, based in Stamford, Conn., issued a news release Tuesday saying steroids ``were not and could not be related to the cause of death'' and that the findings indicate ``deliberation, not rage.'' It also added that Benoit tested negative April 10, the last time he was tested for drugs.
Also Wednesday, Benoit's personal physician said the wrestler did not give any indication he was troubled when he met with the doctor hours before the start of the weekend.
Benoit had been under the care of Dr. Phil Astin, a longtime friend, for treatment of low testosterone levels. Astin said the condition likely originated from previous steroid use.
Astin prescribed testosterone for Benoit in the past but would not say what, if any, medications he prescribed the day of their meeting.
``He was in my office on Friday to stop by just to see my staff,'' Astin said. ``He certainly didn't show any signs of any distress or rage or anything.''
``I'm still very surprised and shocked, especially with his child Daniel involved,'' Astin said. ``He worshipped his child.''
District Attorney Scott Ballard said the autopsy indicated that there were no bruise marks on the child's neck, so authorities are now assuming he could have been killed using a choke hold. ``It's a process of elimination,'' he said.
The Benoits' argument over their son was not the only friction in their marriage. Nancy Benoit had filed for a divorce in 2003, saying the couple's three-year marriage was irrevocably broken and alleging ``cruel treatment.'' She later dropped the complaint.
Meanwhile, authorities in Georgia were investigating a link between Benoit and a Florida business that may have supplied him with steroids.
Prosecutors in upstate New York who have been investigating the company's drug sales said Benoit received deliveries from Signature Pharmacy and MedXLife.com, which sold steroids, human growth hormone and testosterone on the Internet.
Six people, including two of the pharmacy's owners, have pleaded guilty in the investigation, and 20 more have been arrested, including doctors and pharmacists.
``That's something that sounds like we ought to be investigating,'' Ballard told the AP on Wednesday.
A lawyer for MedXLife co-owner Dr. Gary Brandwein scoffed at allegations that his client's company sold steroids to Benoit.
``I've only read that in the paper. I have no direct information about that whatsoever,'' Terence Kindlon said Wednesday, adding that prosecutors in Albany County, N.Y., were trying to ``distract everyone's attention from the fact that their case is disintegrating.''
Brandwein, 44, an osteopath from Boca Raton, Fla., has pleaded not guilty to six counts in New York state court related to the criminal sale of a controlled substance. He was accused of signing and sending prescriptions without ever seeing patients.
Telephone messages left for lawyers for Brian Schafler and Greg Trotta _ two other co-owners of MedXLife _ were not immediately returned Wednesday. The two men have pleaded guilty to felony third-degree diversion of prescription medications and prescriptions, admitting they helped get drugs in 2006 for customers in upstate New York who had no medical need for them.
McDevitt said the drugs found in Benoit's house were legitimately prescribed. ``There's no question, none of these drugs are out there, none of these drugs came from Internet pharmacies,'' he said.
In addition to causing paranoia and explosive outbursts, steroids can also contribute to deep depression, according to experts.
``Just as you have the extreme high of when you're on steroids, you can get the opposite,'' said Dr. Todd Schlifstein, a clinical assistant professor at the New York University School of Medicine. ``You can have a dramatic difference in mood swings. You can feel there's no hope, there's no future.''
____________________________
From a listmate
Autistic kids deserve better There was nothing preventing McGuinty from honouring his promise to autistic kids
The Ottawa Sun
Jun 27, 2007
Section: Editorial/Opinion
Page: 15
By: ALLAN CUTLER
Autism affects all of us. Any family can have an autistic child.
Intensive Behaviour Intervention (IBI) treatment offers hope for recovery to about half of autistic children. The earlier the treatment, the better the odds. If treatment continues for years, there is every hope the child can be integrated into mainstream society. You would be unable to tell if the child was autistic.
This should be a simple decision. Pay now and have children recover; or pay later, supporting them throughout their life. With IBI, half of autistic children have the chance to become taxpayers, instead of becoming dependent on them. The decision should be obvious.
But nothing is obvious when politics are involved. Politicians rarely think or realistically plan beyond getting re-elected.
The Harris Conservative government started the Ontario Autism Program in 1999, allowing for treatment only to age six. Parents protested and launched a lawsuit. The decision did not change. When autistic children turned six, the system effectively abandoned them.
OPENINGS TOO LATE
This program had many problems. It took a long time to get a diagnosis. There was a long waiting list to get into the program. For many children, openings came too late.
Andrew Kavchak's autistic son, Steven, waited more than a year for a diagnosis and another 15 months before receiving assistance to pay for treatment in the private sector.
Unlike many parents, Kavchak and his wife, Sylvie Del Bianco, were able to afford treatment. Del Bianco, a medical doctor, had to choose between taking care of her son or pursuing a career. The result was one less doctor to look after patients in an overworked health care system.
Prior to the 2003 election, Dalton McGuinty wrote Nancy Morrison -- a mother of an autistic child -- saying he believed the practice of cutting off children at age six was discrimination.
McGuinty promised (sound familiar?) that if he was elected, he would stop this practice. The letter was widely circulated and the promise secured many Liberal votes.
The lawsuit was based on the principle that the cutoff was age-based discrimination. In 2003, the parents won. By this time, McGuinty was premier.
There are two issues -- legal and ethical.
Legal issues are important and the Liberal government had every right to continue to clarify the legal status. Clarity could become important in the future.
The legal case went through many levels, ending with an Ontario Court of Appeal ruling that regardless of any discrimination, all decisions about spending money were up to the Legislature. The Supreme Court denied leave to appeal.
In 2003, there was nothing preventing McGuinty from honouring his promise to Morrison. Policy decisions do not have to wait for legal clarifications. They can proceed separately.
In 2004, more money was allocated, but it was only in 2005 that some children could stay in the treatment program.
In this election year, we need to vote in a government truly committed to helping autistic children. We need a government that will keep its promises.
_______________________________
Autism and early intervention: Michael's success story
By Mid-Coast Children's Services
ROCKLAND (June 28): Wanda Frost knew something was wrong. Her infant son wouldn't look at her the way her other children had when they were babies. He had few facial expressions and never said "dada" or "mama." When Michael was 13 months old, she brought him to Child Development Services.
Michael was diagnosed with autism, a complex developmental disability impacting development in the areas of social interaction and communication skills. Autism results from a neurological disorder that affects the normal functioning of the brain. Typically appearing during the first three years of life, autism often presents in infants with early symptoms that are considered red flags:
Does the baby respond to his or her name when called by the caregiver?
Does the young child engage in "joint attention"?
Near the end of the first year of life, most infants begin to join with their caregivers in looking at the same object or event. To aid in this process of "joint attention", typical infants begin to shift their gaze from toys to people, follow other's points, monitor the gaze of others, point to objects or events to share interest, and show toys to others.
Does the child imitate others?
Does the child respond emotionally to others?
(source: Exceptional Parent Magazine)
Michael was fortunate that his mother sought help early. Experts agree that early diagnosis and intervention is crucial: the sooner a child is diagnosed, the sooner he or she can begin to benefit from a specialized intervention program.
The Frosts were referred to Annie Kiermaier, a Licensed Clinical Social Worker with Mid-Coast Children's Services. Michael began an intensive program including a special play therapy known as "Theraplay," which helps parents and children build a strong attachment relationship.
"When I first met Mikey," says Kiermaier, "his mother and I both agreed that he seemed to feel 'miserable.' At just over a year old, he wandered around aimlessly at home, often with a bottle that he sucked for comfort. He rarely sought his mother out for comfort and did not seem to enjoy interacting with his family. He seemed to be 'in his own world.' But Mikey was lucky; he had a tough and determined mother who was willing to do whatever was needed to help him enjoy interacting with people. Eventually, he was ready to begin to learn how to play with others." Next, Mikey began one-on-one developmental therapy provided by Discovering Kids Consulting Services. Allen Tomasello supervised Mikey's intensive program that identified specific learning goals important to autistic children.
Placement in an appropriate preschool environment that focuses on developing communication, social, and cognitive skills can be crucial to an autistic child's development. According to Autism Speaks, "early intervention in an appropriate educational setting for at least two years during the preschool years can result in significant improvements for many young children with Autism Spectrum Disorders."
Following his older sister, Michael was enrolled in Early School, Mid-Coast Children's Services' inclusive preschool in Rockland. Early School provides a comprehensive program for children 2 ½ to five years old. It offers classrooms and a curriculum designed to meet the individual developmental and educational goals of young children, with an emphasis on serving children with special learning and developmental needs in an inclusive environment with "typically developing" children.
Frost credits what she calls "Our Team" with seamlessly delivering services in the context of Michael's school day. In addition to his teacher, Lynda Rackliff, Michael works with a speech therapist, an occupational therapist and, on a daily basis, his Discovering Kids worker, Amber Guinn.
"I just think it's incredible that all these people work as a team," she says, "and that the school accommodates that. They believe that Michael is good for the other kids and vice-versa. They don't single him out. He's involved as completely as the other children."
Becky Stoddard, Site Director at Mid-Coast Children's Services, says "We are often a child's first experience in an environment other than their own home. The teachers go out of their way to support the child and the child's family to make that transition as smooth as possible. For the very young toddlers, it might mean a parent stays with the child for a while each day until he/she is comfortable in the classroom."
Over the course of a year, the nurturing, inclusive environment has done wonders for Michael, now three. "He's become a social bug in the classroom," says his mother. "Before he would never initiate play with other children and now he does. He had some tantrum behavior but after a lot of work that's gone. Before he never had facial expressions and now he does. He also had a texture issue; he would break down when he got stuff on his hands. But now he loves the sand table and the water table in Lynda's class. On top of that, he's starting to read! I credit so much of Michael's progress to the school. I've never worked with such incredible people in my life."
For a disorder as increasingly common as autism, science has yet to pinpoint a cause. Studies indicate a genetic basis, but since genetics alone cannot account for all cases, much recent research has been devoted to possible environmental origins and other trigger mechanisms. Though the cause of Michael's autism might never be known, thanks to intensive early intervention the evidence of his progress is indisputable.
Says Kiermaier: "Little by little, Mikey began to smile. He began to run to greet his mother. He began to enjoy playing with his sister. He looked you in the eye. In his mother's words, Mikey was becoming 'human.'"
For a more thorough discussion of symptoms, see the National Autism Association's website at www.nationalautismassociation.org. Mid-Coast Children's Services is a site of Waldo County Preschool & Family Services, which has been nurturing children and supporting families since 1983.
'A group for you': Free workshop for Parents of Young Children with Special Needs
Mid-Coast Children's Services is continuing to offer a monthly meeting for parents of young children with special needs. The next meeting of "A Group for You" will be Thursday, July 5 from 6 to 7:30 p.m. at 272 Park St. in Rockland. Parents will discuss "Family Members' Stages of Acceptance of our Child's Diagnosis."
Everyone who loves and lives with a young child with special needs goes through emotional stages similar to the grieving process, starting with denial and hopefully reaching acceptance. For parents, the reaction of family members, most especially their own parents, is a vital part of their ability to cope and care for their child. The July 5th discussion will focus on family members as well as ways parents and children can have fun together this summer.
"Special needs" include a broad range of developmental, health, and behavioral challenges such as speech delays, vision or hearing problems, autism, and ADHD.
Parents of young children with special needs face a variety of challenges above and beyond those of most parents. Participants in "A Group for You" meet to share their experiences of what they have learned about how to care for their children and for themselves.
Meetings are facilitated by Annie Kiermaier, LCSW. Free child care is available. Interested parents may register with MCCS at 594-8474. Mid-Coast Children's Services is a program of Waldo County Preschool and Family Services.
http://knox.villagesoup.com/Community/story.cfm?storyID=95460
Making waves for autism
Provided by: Sun Media
Written by: SHARON LEM
Jun. 28, 2007
Ed Mahony wants to make a splash for autistic children when he crosses Lake Ontario this weekend.
Mahony, a special education teacher and college instructor in Hamilton, is planning to paddle a kayak across Lake Ontario this Saturday to raise money for a summer camp for autistic kids.
"I'm always taken by the strength and bravery of the parents of autistic children, who have little support and struggle day in and day out," said Mahony, 48. "They deserve extra support and this summer camp is just three weeks of respite, but every little bit counts."
From A Northern friend!
In Yuma, Arizona, the first court case alleging a link between childhood vaccines and autism is being heard in the U.S. Court of Federal Claims.
Eight other such cases are soon to follow, and the decisions made will guide the handling of the other pending claims.
The cases are therefore being closely watched by 5,000 families with autistic children who have lodged claims for compensation.
Most of the families claim that a preservative called thimerosal, which contains mercury, is the culprit responsible for autism. If the courts agree, the families will be eligible for compensation from a federal vaccine injury fund. No autism claim has yet been paid from the fund.
In the Arizona case, Theresa Cedillo says that her daughter Michelle suffered five days of fever after receiving a measles, mumps and rubella vaccination when she was 15 months old. Af terwards, according to Michelle's mother, her personality and health changed for the worse.
In addition to autism, Michelle suffers from inflammatory bowel disease, glaucoma and epilepsy. Her bones are also prone to breaks because of malnutrition, since she must eat most food through a feeding tube.
Dr. Mercola's Comment:
The link between autism and vaccines, and particularly the mercury-rich preservative thimerosal, is a highly controversial topic that often brings strong responses from both sides, but it's hard to argue with facts.
Take, for instance, a study from the Centers for Disease Control and Prevention's Vaccine Data Link that concluded that children who receive thimerosal-containing vaccinations are 27 times more likely to develop autism than children who do not.
Or, consider that Amish children -- who typically don't receive vaccinations and rarely have autism.
Let's face it, mercury is a potent neurotoxin. Injecting it into a child with a rapidly developing nervous system can have terrible consequences. It is true that in many childhood vaccines, the mercury has now been removed -- but only to be replaced with equally damaging toxins such as aluminum and formaldehyde.
Here is a partial list of some of the other fillers that vaccines can contain:
• aluminum hydroxide
• animal tissues: pig blood, horse blood, rabbit brain, dog kidney, monkey kidney, chick embryo, human diploid cells (originating from human aborted fetal tissue)
• monosodium glutamate (MSG)
• phenoxyethanol (antifreeze)
• sorbitol
• sucrose
If you are a parent on the fence about vaccines, please take the time to carefully evalute this issue before making a decision that could alter the life and health of your child forever. Doing so could mean the difference between life and death.
Media Rlease from Howard Hampton
From A Listmate:
McGUINTY BROKEN PROMISE HURTS CHILDREN WITH AUTISM, FAMILIES
Queen's Park
June 27, 2007 - 4:00pm
NDP Leader Howard Hampton said Dalton McGuinty is failing children with autism and their families with his wrong-headed autism policies.
“Dalton McGuinty has failed a lot of people by promising change then failing to deliver – people like children with autism and their families,” Hampton said.
“Their stories are heart-breaking: Parents draining their savings and going into debt to get their kids the care they need – care Dalton McGuinty promised but isn’t delivering. It’s just not right. And it shouldn’t be happening here in Ontario,” he said.
Hampton made the comments at a meeting with local parents and children with autism. The NDP Leader said Dalton McGuinty’s wrong-headed autism policies show he is “out of touch.”
“Instead of Dalton McGuinty just keeping his promise to children with autism, he’s dragging their families through the courts so he can break his promise. Mr. McGuinty promised to provide IBI treatment for all these kids. As of March 31, 2007, 985 children were languishing on waiting lists. That's an increase of 1,100 per cent from when Dalton McGuinty was elected. It’s another broken promise,” Hampton said.
Hampton said Ontario children with autism are being denied the support they need. Without IBI treatment being provided in schools, the kids can’t attend school regularly. When they do attend they don’t learn like they should. And families who are paying out of their pockets for the treatment are going broke.
“Children with autism and their families need action, not buck passing. They need someone to stand up for them and their kids. I am calling on Dalton McGuinty to do the right thing and extend IBI treatment to every child who needs it without delay. It’s only fair,” said Hampton.
From a Listmate:
FRAXA Research Foundation Works to Provide Hope to Families Struggling
to Raise a Child, or Children, with Fragile X Syndrome; Those Of Us At
FRAXA Express Our Most Sincere Sympathy Over The Heartbreaking Tragedy
Of Chris Benoit, His Wife, And Their Son
Jun 28, 2007
NEWBURYPORT, Mass., June 28 /PRNewswire/ -- FRAXA Research Foundation
is
a parent run organization that funds research to find effective
treatments and, ultimately, a cure for Fragile X. Fragile X is the
leading inherited cause of mental retardation and the most common
genetic cause of autism.
Fragile X is caused when a gene fails to produce a single protein
necessary for normal brain function. There is a 50% chance of
inheriting
the Fragile X gene when one parent is a carrier. As parents of children
with Fragile X, we understand first-hand the stress Chris Benoit and
his
wife might have been coping with. At birth many children with Fragile X
seem normal and are often not diagnosed until two or three years of age
when the child fails to meet typical developmental milestones. The
initial shock of learning that your child is mentally impaired,
followed
by the continued emotional and financial strain of finding appropriate
schools, child care and therapies can be an overwhelming emotional and
financial burden for many families. Some of the symptoms Fragile X can
cause are -- severe anxiety, impaired learning, debilitating sensory
integration problems, very limited (or possibly no) speech, obsessive
compulsive behaviors, and even seizures -- making day-to-day life
extremely challenging. Most children with Fragile X have a normal life
expectancy creating an added burden on parents to plan for their
child's
future.
FRAXA funds biomedical research, in the US and internationally, aimed
at
treating and curing Fragile X. Currently FRAXA has numerous treatments
for Fragile X in development in collaboration with pharmaceutical
companies worldwide. FRAXA's basic research, like the recently
announced
therapeutic potential of PAK inhibition, points the way toward
innovative drug therapies for Fragile X and related disorders like
autism.
According to the Centers for Disease Control, FXS affects 1 in 4,000
males and 1 in 6,000 females of all races and ethnic groups. The
prevalence of autism ranges from 1 in 500 to 1 in 166 children.
Currently there is no effective treatment for FXS and other types of
autism.
FRAXA's President and Co-founder, Katie Clapp, is expected to appear on
tonight's "Inside Edition." For more information, please contact Katie
Clapp at 978/462-1866 or Dr. Michael Tranfaglia at fraxa@comcast.net,
or
visit the FRAXA website http://www.fraxa.org .
SOURCE FRAXA Research Foundation
___________________________________________
CTV NewsNet - Thursday, June 28 2007 - 10:30 (Local) - Segment #3
RESEARCHERS IN CALGARY ARE TRYING TO UNDERSTAND WHAT HAPPENS IN THE
BRAIN OF SOMEONE WITH AUTISM. WHY THEY SEEM TO BE IN THEIR OWN WORLD,
OBLIVIOUS TO WHAT PEOPLE ARE DOING AROUND THEM. AS CTV'S KAREN OWEN
EXPLAINS, THE STUDY MAY ANSWER PART OF THAT QUESTION.
Reporter: AT THIS UNIVERSITY OF CALGARY LAB TWO PEOPLE TAKE TURNS
HITTING FLASHING LIGHTS. THEY HIT THE BUTTON A LITTLE SLOWER IF THE
OTHER HAS JUST TOUCHED IT.
THERE IS A SERIES OF STRUCTURES IN THE BRAIN AND SPECIFICALLY A SERIES
OF NETWORK CALLED THE MIRROR NEURON NETWORK THAT REPRESENTS OTHER
PEOPLE'S ACTIONS WITHIN YOUR OWN BRAIN SO THAT IT CREATES A MIRROR
IMAGE
WHAT YOU ARE DOING IN MY BRAIN.
THOSE HELP US EMPATHIZE. THE PERSON WHOSE VISION IS PARTIALLY OBSCURED
STILL SENSES THE OTHER PERSON HAS JUST HIT THE BUTTON. THIS BEHAVIOUR
IS
KNOWN AS THE INHIBITION OF RETURN. FOR INSTANCE, THERE IS TWO OF YOU IN
A BUILDING AND YOU LOSE SOMETHING. SO YOU CHECK ONE HALLWAY. YOUR
FRIEND
LOOKS DOWN THE OTHER HALLWAY. INTUITIVELY YOU WOULDN'T RECHECK THE SAME
HALLWAY. THAT DOESN'T MAKE SENSE. THAT IS INHIBITION OF RETURN. NOW
HERE'S HOW THIS RESEARCH CONNECTS TO AUTISM. THE THEORY IS PEOPLE WITH
AUTISM DON'T HAVE FULLY FUNCTIONING MIRROR NEURONS. THAT'S WHY THEY
OFTEN MISS SOCIAL QUEUES. THAT'S WHY THEY WOULD CHECK THE HALLWAY EVEN
THOUGH YOU JUST LOOKED THERE. THEY MAY NOT PROCESS WHAT THE OTHER
PERSON
IS DOING.
PARTS OF THE BRAIN THAT ARE INVOLVED IN THE MIRRORING OF ACTION AREN'T
QUITE AS ACTIVE IN PEOPLE WITH AUTISM AS IT IS WITH THE TYPICAL POP
LAYING.
Reporter: SO THIS IS JUST MORE THAN FLASHING LIGHTS AND FUNNY GOBBLES,
BUT BETTER UNDERSTANDING THE COMPLEXITIES OF AUTISM, RESEARCHERS CAN
LOOK AT BETTER WAYS OF TREATMENT. KAREN OWEN, CTV NEWS, CALGARY.
__________________________________
She's got the funk; Chaka Khan has done it all, from R&B to jazz, and
has few regrets - unless you ask her about singing at the 2000
Republican convention
The Montreal Gazette
Jun 29, 2007
Page: D5
Section: Arts & Life: Preview
Edition: Final
Byline: JAMES B. KELLEHER
Pop diva Chaka Khan doesn't have a lot of regrets - and little wonder,
with eight Grammys on her mantel.
The 54-year-old singer - who has a wide-ranging catalogue of recordings
to her credit, including her smash hit I'm Every Woman - is releasing a
new album this fall with the tentative title I-Khan Funk.
But when the Chicago native spoke to Reuters recently, she acknowledged
she does regret her appearance at the 2000 Republican convention, where
she sang what was described as "a rousing finale" after George W. Bush
captured the party's presidential nomination.
Q: Your catalogue is fairly broad - funk, R&B, jazz, soft soul - but
your new album is tentatively called I-Khan Funk. Does that say it all?
A: It says it all. It's a funky album. But it's also eclectic. I
covered, for instance, a Joni Mitchell (song). I funked up Ladies' Man.
... We did an equal amount of covers and an equal amount of original
material. And I did some obscure songs like Foolish Fool, which was
done
by Dee Dee Warwick in 1960-something. That was a song I sort of had to
get out of my system. But it's a great song.
Q: Your last Grammy was in 2003, when you won with the Funk Brothers
for
What's Going On? I don't want to jinx you or anything, but what's the
feeling around I-Khan Funk?
A: You can't jinx me. A Grammy doesn't define me. It's nice to get a
Grammy. It's beautiful to be appreciated by anybody. I'm honoured. But
that's not why I do what I do. For a Grammy.
Q: But has it got the potential?
A: It's got amazing Grammy potential and American Music Award
potential.
It's got amazing potential. If done properly. It's got to get out
there.
People have got to hear it.
Q: Technology has transformed the business of selling records. You must
have seen these changes?
A: Yes, I have. (Over) 30 years. And I'm telling you, it's the end of
the big label - the end of the big pimp. You know, I'm so happy to see
that.
Q: You feel empowered?
A: Oh yeah. They had us tied up like cattle. It wasn't pretty. Look at
Elvis Presley, even: He had a lifetime contract. That's unheard of in
the business world outside of music. It just wouldn't fly.
Q: Let's get political briefly. In 2000, you sang at the Republican
National Convention.
A: I'm trying to forget that.
Q: That was my question. In the intervening years, a lot of people have
become disillusioned with the president.
A: I did it for my foundation for autism education. I did it to bring some attention to that.
Q: Did it at least do that?
A: Possibly. It might have done more damage than good - for me, anyway.
For my spirit.
Chaka Khan performs Monday at 8:30 p.m. at Metropolis, 59 Ste.
Catherine
St. E. Tickets cost $42.50. Call 514-908-9090; order at
www.ticketpro.ca.
Colour Photo: MARIO ANZUONI, REUTERS / Khan is glad to see
"the end of the big pimp" in the music industry.
__________________________
Thank you to all of you who voted for Lianne Graymar in the Sunlight Laundry Outdoor Makeover, here’s some good news: SHE WON!
You can see some details by going to http://www.sunlightlaundry.ca/story/ and clicking on the “Contests” link at the bottom of the page, and then the “Outdoor Makeover” button when that page loads. Sorry, there’s no direct link, it’s a flash website.
So now, on heels of that success, I’m posting to ask for your help for another friend who is in another contest. This particular one only allows you to vote once for each e-mail address you have.
Sharon Gabison is the parent of a boy with autism (and he’s a wonderful kid, by the way). She runs a business called ABA Resources, she’s a physiotherapist and a teacher at Seneca College. Here’s Sharon’s message:
As many of you may know, I have worked hard over the past few years to develop affordable educational aids to assist children with autism. These resources are now being used with great success by thousands of parents and in hundreds of schools across Canada, the United States, the UK and throughout the world. I am very proud of my accomplishments, but would love to be able to do more to help parents and teachers help their children (If you haven't seen my website, you can check it out at www.abaresources.com )
Canadian Parents magazine is offering an $18,000 value business development prize package for one worthy mom entrepreneur. ("Mompreneur of the Year Award"). This prize package would be an amazing opportunity for me to both expand the resources that I am offering and to increase my ability to reach parents and educators who could benefit from the resource materials I have developed.
But to win the package I need votes. LOTS OF VOTES. The person with the most votes wins. Please please please consider voting for me. Voting is simple and can be done online with the click of one button.
Please consider passing this on to anyone and everyone who you think would be willing to help.
Take care and thanks so much!!!!!
Sharon
Here’s a link to learn more about Sharon and her business:
http://www.mompreneuraward.com/Nominees.aspx?page=AB
Here’s a link directly to the voting form
http://www.mompreneuraward.com/vote.aspx?momID=234
From up North
Hi Everyone;
Autism Ontario has a monthly magazine called "Autism Matters". They want to know if parents are interested in submitting a few sentences and perhaps a picture of their child or children that have touched their lives, for this summers issue called "Summer Survival Stories and Tips for Families of children and adults with autism".
You could fill in blanks for things like this :
The best decision we ever made about our son/daughter for the summer was.................
or
We were at a local pool one summer ago and this crazy series of events happened............................................
or
The one thing that helps us survive the summer with our child with autism is............................................
If you want to write a little something and add a summer picture of your child, (with or without siblings) please email it to me and I will forward it to the main office ASAP.
I will need your consent though, to use the picture you send, so make sure you add your permission at the end.
They want to have the submissions by June 30th. So hurry!
Thanks!
This may be a copy:
Ont. government must reveal cost of autism treatment lawsuit, says NDP's Martel
Published: Monday, June 18, 2007 | 2:09 PM ET
Canadian Press
TORONTO (CP) - The Ontario government's willingness to go to court rather than reveal how much it spent on fighting an autism treatment lawsuit shows it cares less about children and more about covering its tracks, opposition critic Shelley Martel said Monday.
The Ontario Superior Court of Justice heard arguments Monday about a request under the province's Freedom of Information and Protection of Privacy Act to reveal how much the government spent defending a lawsuit filed by parents of autistic children.
The government doesn't want to reveal how much it spent on legal fees, when that money - perhaps as much as $1.5 million-could have helped so many kids instead, Martel, a New Democrat, said outside the court.
"The public has a right to know how much money the McGuinty Liberals have spent fighting children with autism and their parents in court," Martel said.
Ontario's information and privacy commissioner ordered that the total cost be released earlier this year, but the government launched a court challenge of that decision.
On Monday, Crown lawyers argued those fees fall under solicitor-client privilege and shouldn't be disclosed. They told the court that disclosing the fee would set a precedent that would apply to all lawyers and their clients across the province.
http://www.cbc.ca/cp/health/070618/x061811A.html
From AO Sudbury Chapter:
From: "Karyn Dumble"
>To: "Karyn Dumble"
>Subject: FOR DISTRIBUTION: Weekly News
>Date: Thu, 28 Jun 2007 17:29:31 -0400
>
>This message has been sent to all Chapter Presidents and Staff.
>
>Please distribute to your members.
>
>
>
>
>
>
>
>Summer Edition of Autism Matters hits your mailboxes soon!
>
>Within a couple of weeks, the next edition of Autism Matters will
arrive in
>our office - hot off the press. With the assistance of a diligent team
of
>volunteers, we'll get the magazine and other newsy items stuffed into
>envelopes and out into the mail for you to enjoy. Consider a
subscription
>to Autism Matters next time you need to give that extra special thank
you
>to a co-worker, support worker, teacher or medical professional.
>Subscriptions to Autism Matters are $25/year.
>
>
>
>Online Donations to Autism Ontario
>
>Check out the newest item on our website, online donations! The link
is
>conveniently located on the top menu bar, right next to Contact Us.
>
>Donations can be made online via CanadaHelps.Org, an organization that
>assists many charities across Canada. Even monthly contributions can
be
>arranged!
>
>
>
>Correction to Eleanor Ritchie Scholarship Information
>
>OOPS - Our apologies to Keegan Richard whose name was inverted in the
list
>of recipients for the Eleanor Ritchie Scholarship.
>
>
>
>From Ombudsman Ontario:
>
>June 27, 2007 - Government "puffery" undermines public trust,
Ombudsman
>warns in Annual Report
>
>
>
>In releasing his second annual report today, Ontario Ombudsman André
Marin
>lamented the litany of government organizations whose grandiose
promises
>were exposed as "puffery" under his Office's scrutiny. He also noted
that
>some of the most crucial and costly services funded by the province,
such
>as hospitals and children's aid societies, remain immune to Ombudsman
>oversight, unlike in most other provinces.
>
>
>
>Annual Report 2006-2007: Link:
>http://www.ombudsman.on.ca/UploadFiles/File/AR%20English.pdf
>
>Press Release - Link:
>http://www.ombudsman.on.ca/UploadFiles/File/AR%20Press%20release-Eng(1).pdf
>
>Backgrounder - Annual Report facts and highlights - Link:
>http://www.ombudsman.on.ca/UploadFiles/File/AR%20backgrounder-Eng.pdf
>
>Ombudsman's opening remarks - Link:
>http://www.ombudsman.on.ca/UploadFiles/File/AR%20Opening%20Remarks-Eng.pdf
>
>
>
>Request a hard copy of the report by email: info@ombudsman.on.ca
>
>
>
>Please forward this email to others who may be interested. If you
would
>like to subscribe to receive future emails contact Dean Morra at:
>dmorra@ombudsman.on.ca
>
>If you don't wish to receive future Ombudsman Ontario updates, please
go to
>http:/www.ombudsman.on.ca/unsubscribe
>
>
>
>Raun Kaufman Speaking Event on July 11, 2007
>
>Attached are two PDF documents with details on an upcoming speaking
>engagement in Toronto by Raun Kaufman. This event is being organized
by two parents from the Dufferin area.
>
>For more information, please contact Michael and Kelli Pallett at:
>parentslisten@gmail.com.
>
>
>
>
>
>
>
>Disclaimer: It is important to do your own research and make your own
>informed decisions. Please note Autism Ontario does not endorse any
>specific therapy, product, treatment, strategy, opinions, service, or
>individual. We do, however, endorse your right to information.
>
>
>
>
>
From Ellen Notblom’s email list: Newsletter for July 2007
• Meet Chris Fossel, Merrill Lynch Disability Awareness Professional Network
• We’ve got the Midas touch: autism publications win Gold
• Congratulations, Bryce – times two!
• On my soapbox: Do the Math! Stick – carrot = bad policy
• Coming in September: The Autism Trail Guide
• “Search Inside” Ellen’s books on Amazon
• Book excerpts and podcasts
“People are different. And it is the best way.”
From July Newsletter
Meet Chris Fossel, Merrill Lynch Disability Awareness Professional Network
This past May I had the opportunity to speak to a group unlike any other I have experienced. At Merrill Lynch headquarters in Manhattan, 175 people gathered for a “Lunch and Learn” session sponsored by ML’s Disability Awareness Professional Network. Our session was distributed live to all ML offices across the country and afterward, pressed to DVD for those who could not attend or view live.
This impressive effort is the result of the tireless work of Chris Fossel, national leader of the MLDAP Network. From very humble origins – Chris working with ML human resources to help a group of employees with hearing impairments advance in the company – the Network has grown since 1988 to over 500 members around the world.
The DAPN conducts many Lunch and Learn sessions every year, educating both employees affected by specific disabilities and others who have no knowledge but want to know more. Fossel says it is not uncommon that someone in the audience breaks down in tears when they find that resources are available to relieve the burden they have been shouldering alone for so long. DAPN’s activities include recruiting, training and mentoring people with disabilities, community outreach and awareness. Merrill Lynch has been recognized twice by Diversity Inc Magazine as a top place to work for people with a disability, this year placing #2 .
Fossell leads the DPAN above and beyond his “day job” as a Merrill Lynch VP. “It’s my passion” is his modest response. I can only hope this remarkable model catches on with other employers. Bringing information into the workplace makes it accessible to a whole segment we don’t normally see at typical conferences and meetings, including the largest contingent of dads I have ever spoken to in one place. I talk a lot about our efforts making a difference one child at a time. MLDAPN is making a difference one hour at a time, and what a difference it is.
________________________________________
We’ve got the Midas touch: autism publications win Gold
It’s been an exciting month in the publishing world for those of us who care about autism. Two publications close to my heart have won Gold awards in two different competitions.
The Official Autism 101 Manual has won a Gold Medal in the 2007 Independent Publisher Book Awards. It was judged top entry in the Health/Medicine/Nutrition category and was the only book on autism to win any award.
My congratulations go to publisher Karen Simmons, as well as my thanks for bringing me in as one of the many contributors to The Official Autism 101 Manual , including Temple Grandin, Tony Attwood and the late Bernard Rimland.
Learn more at
http://www.autism101manual.com
Autism Asperger’s Digest has won the Gold award in the 2007 National Parenting Publications Awards (NAPPA) Parenting Resources competition. Digest will now get front-and-center coverage on Parenthood.com, one of the nation’s largest parenting Web sites, and an audience of 4.2 million parents through more than 40 regional parenting publications. Digest managing editor Veronica Zysk is “delighted with the NAPPA Gold Award and the nod of recognition it gives to the many talented parent and professional writers who contribute to the Autism Asperger's Digest. The knowledge they share is invaluable to our community."
Learn more at
http://www.autismdigest.com
________________________________________
Congratulations, Bryce – times two!
It was yet another one of those moments I will never get over. Bryce graduated Jackson Middle School on June 15, one of a handful of kids called up for a special academic award – maintaining a 4.0 throughout his 8th grade year. He went up on stage to the applause of an audience of 1,000 or so, cool as a cucumber, and me with quivering lower lip wondering why they didn’t give me some advance warning. While Bryce’s teachers modestly give him all the credit, I must deflect some of the glory back on them. This year’s core teachers took Bryce’s IEP very, very seriously. They adapted materials, assessments and assignments to his learning style, and they were just as enthusiastic about learning from him as they were about teaching him. We can never be grateful enough for teachers like Roberta Rossi, Dave Molloy and Rachel Lee. Salute!
And now we embark on an even greater adventure – high school. Although Bryce has been successful throughout our excellent elementary and middle schools, the time has come for us to leave the public school system for an environment better able to guide Bryce through the home stretch to adulthood. He earned admission to Thomas A. Edison High School, a unique private school specializing in students with learning differences. Edison’s small class size, customized approach to learning, emphasis on responsible social interaction, reciprocal relationship with a large high school next door and extensive transition-to-adulthood program were powerful draws for us as parents and for Bryce himself
We will follow Bryce through Thomas Edison High School in my Autism Asperger’s Digest column, Postcards from the Road Less Traveled, beginning with an introduction to Edison, The Little High School That Does, in the September-October 2007 issue. An excerpt will post on my website at that time. Learn more about Thomas A. Edison High School at http://www.taedisonhs.org/.
P.S. We are twice-grateful to Edison. The photo of Bryce above was taken on the island of Oahu after we won a trip to Hawai’i in the Edison annual auction’s raffle!
Those of you who have read my Ancestry magazine article, Too Soon, will understand that the most meaningful piece of the Hawai’i trip for me was our visit to Punchbowl National Cemetery of the Pacific, where my uncle Ensign Robert Berenson’s name is inscribed in the Court of the Missing. This incredibly perfect place, steeped in both history and timelessness, merits a story of its own in a future newsletter.
(The 30-foot-tall Lady Columbia, symbol of all grieving mothers, watches over the Court of the Missing, accompanied by Abraham Lincoln’s words: “The solemn pride that must be yours, to have laid so costly a sacrifice upon the altar of freedom.”)
Read Too Soon at http://www.ellennotbohm.com/ancestry_enotbohm.pdf.
On my soapbox: Do the Math! Stick – carrot = bad policy
To me, one of the most interesting parts of traveling is reading the local newspapers. I’m intrigued by both the eye-opening differences and similarities in the way people live and meet the challenges of life. This recent headline the Honolulu Advertiser grabbed my attention: “Hawai’i one of 9 states up to par on special ed.” The statistic refers to the 2004 reauthorization of the Individuals with Disabilities Act. Along with Hawai’i, Alaska, Connecticut, Michigan, Oregon, Pennsylvania, Tennessee, Virginia and Wyoming were deemed as meeting requirements while 51 other states and territories were deemed as needing “assistance” or “intervention.” The article went on to say: “The U.S. Education Department said that the states that are not now fulfilling there responsibilities...could face sanctions such as the loss of federal aide if they don’t improve...”
Could some porch bulb brighter than me kindly explain how withdrawing funds that are already inadequate is going to help our kids? If a program – any program -- achieves only 18% compliance, the first question to be answered before all others is WHY? Threatening a punitive response is acceptable if, and only if, it has been determined that the non-compliance is completely willful -- that all states in fact possess all tools and resources necessary to meet all requirements.
A punitive response without examining addressing underlying causes indicates that those administering funds have lost sight of who the IDEA is serving – special needs children. The questions I would ask of a program that is not succeeding are largely the same questions I would ask if my child were not succeeding.
Are the requirements couched in clear, relevant terms and has it been determined that all 51 non-compliant states and territories actually understand what is required ? How many are mired in cultural or government double-speak and/or miscommunication?
Do states have adequate resources and tools to fulfill the requirements: teachers and teacher training, administrators, therapeutic professionals, physical space, supplies, equipment, books, software?
Are the requirements realistic? In one memorable interview on National Public Radio last year, an elementary school principal in Appalachia challenged the federal government to send him “highly qualified” teacher applicants who were willing to work under the challenging conditions – low pay, few resources – his community was able to offer. If, he said, he is allowed to hire only teachers “highly qualified” as defined by the law, the reality would be -- no teachers.
A number of times during the course of my own and my children’s education, it would happen that a sizable majority of the class would flunk a particular test. The good teachers allowed that if nearly everyone flunked, there were only two reasonable likelihoods: the material wasn’t understood (in which case we go back and teach it again, perhaps in a different way – i.e., give the students better resources) or the test (standard of measurement) itself was flawed. The less admirable teachers would say, too bad, you take the hit to your grade and we slog on through the curriculum.
Before the DOE imposes “sanctions” on children who are already at a disadvantage, they should make very sure that their own tools and methods are not part of the problem. As citizens and parents, we are the boots on the ground, and it’s our job to always question and call attention to practices that are at best ineffective and at worst harmful, be they in our schools or our government.
Coming in September: The Autism Trail Guide
An anthology of insights based on my column Postcards from the Road Less Traveled. From the Preface:
“I think of the essays in this book as trips to the tool shed wherein we store all the virtual hardware needed for this creative construction project that is our child with autism. As autism is a shifty foe, so shift our needs, seemingly with the wind, from day to day and even from hour to hour. Sometimes we need a machete to hack through the education bureaucracy. Sometimes we need insect repellant to deal with the inevitable unkindness of strangers. Sometimes we need a cultivator to sow and encourage the growth we know will come if we are patient and steadfast in our work. And sometimes we need a soldering iron to weld our broken hearts back together. All of this you will find in these pages as we tackle a spectrum of challenges from nuts-and-bolts everyday issues like math homework, video games and tricky behavior to the larger life issues that have no simple answers. When to take risks and when to play it safe. When to step up and when to back off. How to hang on and when to let go.”
Read the first chapter here, You Know More Than You Think You Know
“Search Inside” Ellen’s books on Amazon.com
All of my books now carry the “Search Inside” feature on Amazon.com. This is a wonderful opportunity to test-drive the book before you buy, something in which I am a big believer. We all have finite financial resources and even more finite reading time. “Search Inside” will give you a better sense of whether a book is right for you or someone you know.
Website reads
Book excerpts:
Ten Things Every Child with Autism Wishes You Knew
Ten Things Your Student with Autism Wishes You Knew
1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders
The Autism Trail Guide: Postcards from the Road Less Traveled
Article Anthology:
http://www.ellennotbohm.com/articles.html
Podcast interviews with Ellen
Click here to listen to the podcast at AutismPodcast.org
Click here to listen to the podcast at Senior Dad
Please forward this newsletter to anyone you feel might share an interest in our kids with autism. New subscribers can sign up at my Website.
If you’ve read my books and feel inclined to share your thoughts with others, please consider posting a review on my book pages at Amazon.com. It's easy to do and you don't have to post your real name.
If your spam-blocking software is particularly aggressive , you may want to add our email address
We take your privacy very seriously, and do not share our mailing list addresses or information with any other entity or business.
©2007 Ellen Notbohm | Third Variation Strategies, LLC
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Special Education Resource Document
Effective Educational Practices for Students with Autism Spectrum Disorders
This guide is available as an Adobe Acrobat file. (PDF, 2.85 MB)
YES I – Trish K from AFA is pleased to say I am labeling my child with a tattoo from Tattoos with a purpose…
They are affordable and wonderful for daycamps!!!
Click here:
http://tattooswithapurpose.com/orderherenow.html
From a friend:
From: Julie Coulter [mailto:coultervideo@att.net]
> Sent: June 26, 2007 2:26 PM
> To: coultervideo@att.net
> Subject: NEW Sibling Autism and Asperger Syndrome DVDs
> Hi,
>
> We're letting our customers know about a new DVD Coulter Video is
> releasing
> today titled, "Understanding Brothers and Sisters on the Autism
> Spectrum."
>
> This video is designed for siblings who have brothers and sisters
> diagnosed
> with autism. The video deals with a range of autistic conditions,
with
> the
> exception of Asperger Syndrome. We'll be releasing a similar video
for
> siblings of brothers and sisters diagnosed with Asperger Syndrome
within
> the
> next few months.
>
> Each DVD (the autism version and the Asperger Syndrome version)
contains
> four programs; three for siblings of different ages and developmental
> levels, and one for their parents. The sibling programs are for
> children
> ages 4-7, ages 7-12 and ages 12 to adult. While the two DVDs have a
> similar
> format, each is unique. For example, we interviewed families dealing
> with
> an autism diagnosis for the autism DVD and families dealing with an
> Asperger
> Syndrome diagnosis for the Asperger Syndrome DVD.
>
> These videos show siblings that other kids are facing the same
> challenges
> they face, and explores a range of ways the kids interviewed have
> learned to
> get along with and enjoy their brothers and sisters. The videos also
> can
> help parents understand the special needs of their neurotypical
> children.
> The segments for siblings ages 4-7 feature puppets and the segments
for
> older siblings feature interviews with brother and sisters. We
> interviewed
> mothers and fathers for the parent segments.
>
> Overall, we interviewed members of 24 families with children on the
> autism
> spectrum to create these two videos. After viewing these programs,
> siblings
> should have a better understanding that their brothers and sisters
> aren't
> trying to be difficult, and should be more willing to treat them with
> tolerance, caring and respect.
>
> Again, "Understanding Brothers and Sisters on the Autism Spectrum" is
> available now. "Understanding Brothers and Sisters with Asperger
> Syndrome"
> is scheduled for release in August, 2007. Here's the Internet address
to
> view more information about the video on our website:
>
> http://home.att.net/~coultervideo/understandautas.htm
>
> We hope these videos can be a helpful resource for families.
>
> Sincerely,
>
> Julie and Dan Coulter
>
> COULTER VIDEO
> 1428 Pinecroft Drive
> Winston-Salem, NC 27104
> tele. & fax: 336 794 0298
> www.coultervideo.com
>
>
>
>
Man kayaks solo across Lake Ontario
http://www.thestar.com/News/article/232213
16-hour trip raises $4,000 for Hamilton autistic kids camp
Jul 04, 2007 04:30
Iain Marlow
STAFF REPORTER
As the speck of Ed Mahony grew larger on the smooth surface of Lake Ontario yesterday, his wife Rita Chimienti gazed out at him from the beach – and then dialled his number.
The kayaker, about 100 metres out, slowed down, laid his paddle across his lap and answered.
"You'll be here in a sec? I'm going to take pictures from the bridge," Chimienti said, adding that she and Mahony's mother had forced him to take the phone with him.
She ran up onto the white bridge at the mouth of the Humber River, snapped some shots and ran back down to see him slide his canoe into the sand shortly after 11 a.m.
She had been waiting since 5 a.m.
"Well, it's done," Mahony said, stepping into the water. "Last night was so nice on the lake."
The 48-year-old had paddled overnight from Niagara-on-the-Lake. He pushed off at 7 p.m. on July 2 and arrived yesterday – a 16-hour journey.
"I like to choose rivers. You like to do this," Chimienti chided him, gesturing towards open water.
The 60-kilometre trip raised $4,000 for a summer camp Mahony founded and runs for autistic youth in Hamilton, where he is a special-education teacher.
Mahony started the Winner's Circle camp in 2001 as a place where children with severe autism receive one-on-one attention from staff.
If parents can't afford the $50 registration fee, then it's free, Mahony said.
Yesterday marked the end of his third attempt at crossing. Three days ago, when he hit open water on Lake Ontario, trees on shore were creaking and bending in the wind and so he turned back.
A small Canadian flag was affixed to his kayak's stern to mark the holiday.
He said he plans on paddling the rest of Canada's Great Lakes and added that he likes to paddle out five or 10 kilometres, where the water is all his, to sit and drink coffee.
From A listmate
Ask Lindsay Moir:
Addressing school concerns during the summer
Wednesday, July 04, 2007
Question:
This is a "created question" which comes from a disturbing number of emergency phone calls (12) and emails (10) that were frustrated calls for help from parents of special needs children this past week.
Some Examples:
"I received a note saying that "Chris' placement for next year would be changed due staffing issues" — in his backpack on the last day of school. When I phoned the school everyone had left for the summer."
"I was promised an answer regarding support by the last day of school — it has come and gone and I still have no answer — what now?"
"I am just sick with worry and I will be sick all summer . . . we have some very serious safety issues at school — and they have gone for the summer without meeting with us. How can I plan to send my son into an unsafe environment? They have known for four months that this is a very important issue to us and yet left it unresolved. . ."
"This morning I received a very formal letter that reversed our plan for Matthew — everything was agreed upon at his team meeting and we were all set for next year . . . we thought! Of course, when we phoned the school we got a recorded message that it is closed until Aug 27th!"
I have concerns that this strategy of "last minute surprises" is growing, as a way of managing difficult parents — I have never had so many frustrated families contact me on this issue. It is a province-wide phenomenon — not board-specific! What do I recommend?
Answer:
Let's be fair! This is only a very small percentage of the thousands of schools and families involved — however it is also likely only the "tip of the iceberg" of reported occurences.
It is a failure in leadership if educators prefer to avoid delivering"bad news" face-to-face. I have had many parents this year complain that principals and senior administrators repeatedly fail to return phone calls. Educators who respect parents by promptly returning calls gain valuable "currency" in the school-home interaction.
I believe that most parents can accept that not everything has an easy solution and that resources are limited. Solutions are often found when the two parties "brainstorm" together. Avoiding this dialogue, rules out collaborative solutions!
We are in a time of transition, where educational leadership is changing.
In the "old days" automatic deference meant that an educator never had to consult with parents — their word was supreme and no-one dared to question a principal's decision. This is no longer true — as we move into a collaborative era, successful educational administrators must communicate with parents and community professions in order to make the system work for an increasingly complex student population.
Secondly, we have many inexperienced administrators who have not yet found their comfort level. Some of them feel threatened by knowledgeable parents. Some live in fear of making a career-killing mistake. They avoid confrontation — or potential confrontation. Avoidance does not solve problems. They seek safety in "following the rules" rather than finding solutions.
Parents repeatedly tell me what a key player the principal is — good principals creat happy parents and successful kids . . . bad ones sap the energy and resolve of families . . . but ones trying to play safe are just as big a problem. If the system rewards those who blindly comply and "keep their head down" — then we reward mediocrity. We need "risk-takers" as we deal with the complexity of special education in the years to come.
What would I do about "last minute" strategizers?
I would write a letter of concern outlining the issues and the broken promises (just the facts — no editorial comments please!) I would send this to the Area Superintendent AND the Special Education Superintendent AND the Chair of SEAC AND my trustee. I would ask them to respond in writing with a solution to the concerns within a two week time frame. I would demand summertime resolution.
Realize that most board offices are open in the summer time and I would e-mail and voicemail the appropriate people regarding a solution every Monday. I would not accept the "put-off" that the school is closed so let's deal with it in September. Most principals receive a number of calls over the summer. Many are called to a few meetings since they technically are "on call" for July and August. When a Superintendent is away someone will be covering for them. Do not let the absence of one person hold up the resolution of your issues.
Once you establish that you will not be "put-off" and you will make such treatment a "public" issue (let others know about it) — people who are trying to "keep their heads down" will not use this strategy again!
Hopefully, this year was the anomaly — and this practice will fade out by next June. As parents we need to have things settled by the end of school and to have plans in place for September —in order to get some enjoyment out of our summer "break" too.
Lindsay Moir retired from the Ministry of Education in 1997 and has been assisting agencies, associations and parents in obtaining appropriate special education services for exceptional pupils.
Family Net welcomes your questions about special education in Ontario.
E-mail Lindsay at ask.questions@yahoo.ca He will answer as many questions as possible.
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A movie that's so nice, it stinks
By Robert Horton, Herald Movie Critic
There are few things quite as excruciating as a well-meaning, earnest movie that hits its single note like the same out-of-tune key on a piano. The Canadian indie "Snow Cake" is one of those movies.
We are in the icy Ontario town of Wawa, where a mysterious Englishman named Alex (Alan Rickman) is passing through when tragedy strikes. When he goes to the house of Linda (Sigourney Weaver), he expects to find a bereaved woman.
Instead, he discovers that Linda's autism makes her something other than conventional, in every way. Linda has just lost a child, and Alex stays in her house while awaiting the funeral.
This contrivance allows Alex to learn some life lessons about himself and Linda. Carrie-Anne Moss plays the woman next door, a free spirit who finds the dour, fussy Alex irresistibly attractive. Vancouver native Moss is in another Canadian film this week, the zombie comedy "Fido," and you might find yourself hoping a stray zombie would wander into this production.
The days drag on, and so does the movie. It's not that screenwriter Angela Pell (who drew upon her experiences as the mother of an autistic son) and director Marc Evans lack a sense of humor. It's that everything in the film is so exactly on the nose. Linda's sense of childlike fear and wonder, Alex's slow thaw in her company, the community's gradual acceptance of the situation - these can all be seen in the first 20 minutes of the picture.
Because it's an actors' film, there ought to be some pleasure on that level. But the pairing of Rickman and Weaver (perhaps trailing memories of their shared work in "Galaxy Quest") doesn't set off any bells.
Rickman, late of "Love Actually" and the "Harry Potter" movies, is unparalleled when it comes to dialing down his energy and letting his sonorous voice do the work. But he's defeated by his pointlessly enigmatic character.
Weaver has given some terrific performances, but this is not one of them. With a limited emotional range to work with, she tries hard to indicate Linda's level of awareness and functionality. She tries entirely too hard.
A nice musical score by the Canadian group Broken Social Scene is also in vain. "Snow Cake" is winsome and sensitive and intent on having everything work out fine. The results are lethal.
Alan Rickman and Sigourney Weaver star in "Snow Cake."
http://www.heraldnet.com/article/20070706/ENT/707060323
Amazon books:
Ten Things Your Student with Autism Wishes You Knew
Thinking in Pictures, Expanded Edition: My Life with Autism
The Complete Guide to Asperger's Syndrome
From a listmate:
HEALTH: RISING INCIDENCE THE SEARCH FOR CLUES
Researcher sees link between vitamin D and autism
Experts call the hypothesis - that deficiency in pregnant women and young children is a factor - speculative
MARTIN MITTELSTAEDT
ENVIRONMENT REPORTER
July 6, 2007
The growing prevalence of autism is one of the biggest scientific whodunits in the medical world, with few clues for its rising incidence.
But a U.S. researcher is advancing a controversial hypothesis: that autism is related to vitamin D deficiency during fetal development and early childhood.
Dr. John Cannell, a psychiatrist and prominent vitamin D advocate, says flagging levels of the vitamin in pregnant women and young children could be the elusive factor explaining the rising rate of autism.
The evidence for such a link is circumstantial, and autism experts describe the hypothesis as speculative. But Dr. Cannell, founder of the Vitamin D Council, a non-profit advocacy group, says autism rates have skyrocketed in lockstep with medical advice given to the public since the late 1980s to avoid all exposure to bright sunshine.
Print Edition - Section Front
"If it's true, I can't think of another situation where medical advice was so damaging to such a large number of people," says Dr. Cannell, who practises at Atascadero State Hospital in California.
The vitamin D link "is an interesting speculation," says Dr. Wendy Roberts, a professor of pediatrics at the University of Toronto and one of Canada's leading autism experts.
Because the cause of autism is such an enigma, Dr. Roberts says researchers should investigate vitamin D, but the public should treat the idea more cautiously.
"You like to be able to have something that is firm and clear before you get parents all excited and doing something and then, once again, being disappointed," she said.
Although Dr. Cannell is something of a maverick in research circles, he has credentials. Last year, he published an important peer-reviewed paper linking low vitamin D levels to an increased susceptibility to influenza, based on research at his hospital.
But for his autism hypothesis, he is now jeopardizing his chances of publication in a scientific journal by e-mailing the Vitamin D Council newsletter outlining the idea to thousands of U.S. autism activists - a possible violation of the rules of publication.
Dr. Cannell said he decided to disseminate his hypothesis now to encourage the public to increase its sun exposure during the warmer part of the year.
"If only 10 pregnant women go outside and sunbathe a little bit, they may be saved a lifetime of misery," he said.
The idea that vitamin D deficiency may have a link to autism isn't as farfetched as it once might have seemed because the deficiency is also emerging as a possible cause of many diverse illnesses, ranging from multiple sclerosis to cancer.
Last month, the Canadian Cancer Society recommended adults start taking the sunshine vitamin to reduce their risk of cancer.
Autism refers to a spectrum of conditions that involve repetitive behaviours and difficulty communicating and interacting socially. Autism manifests itself in the first few years of life and is thought to be some kind of neurological disorder affecting brain function.
One discredited theory is that the mercury-containing preservative thimerosal once used in childhood vaccines causes autism. Studies have failed to find any link.
The cause of autism is further clouded because some scientists speculate that part of the apparent increase in incidence - in the United States it is being diagnosed about 10 times more frequently now than in the early 1990s - may reflect improved reporting by doctors more aware of the condition.
The current Canadian estimate is that about 60 children out of every 10,000, or about 1 in 165, have autism and related conditions. Up until the 1990s, the prevalence was thought to be far lower, at only 4 or 5 children in 10,000.
If there is a vitamin D link, incidence rates around the world would probably vary by latitude. Rates would be lower in equatorial areas, where sun exposure is higher, than in northern latitudes, but studies investigating geographical differences in diagnosis haven't been done.
Dr. Cannell says some of the strongest evidence vitamin D may have a hand in the disorder is that the vitamin is converted in the body to a steroid hormone, which in animal experimentation has been found to influence brain development. If vitamin levels are low, whatever brain development it is linked to will be skewed.
Startling trend
The occurrence of autism spectrum disorders (the most sever of which is autism) has risen sharply during recent years.
Rate per 10,000
UNITED STATES
1980s: 4-5
1990s: 30-60
2000A: 67
CANADA
2001B: 60
SOURCES: ENVIRONMENTAL HEALTH PERSPECTIVES
A- CENTRES FOR DISEASE CONTROL
B-CAIRN
http://www.theglobeandmail.com/servlet/story/LAC.20070706.LAUTISM06/EmailTPStory/
From the Star:
Man kayaks solo across Lake Ontario
16-hour trip raises $4,000 for Hamilton autistic kids camp
July 04, 2007
Iain Marlow
STAFF REPORTER
As the speck of Ed Mahony grew larger on the smooth surface of Lake Ontario yesterday, his wife Rita Chimienti gazed out at him from the beach – and then dialled his number.
The kayaker, about 100 metres out, slowed down, laid his paddle across his lap and answered.
"You'll be here in a sec? I'm going to take pictures from the bridge," Chimienti said, adding that she and Mahony's mother had forced him to take the phone with him.
She ran up onto the white bridge at the mouth of the Humber River, snapped some shots and ran back down to see him slide his canoe into the sand shortly after 11 a.m.
She had been waiting since 5 a.m.
"Well, it's done," Mahony said, stepping into the water. "Last night was so nice on the lake."
The 48-year-old had paddled overnight from Niagara-on-the-Lake. He pushed off at 7 p.m. on July 2 and arrived yesterday – a 16-hour journey.
"I like to choose rivers. You like to do this," Chimienti chided him, gesturing towards open water.
The 60-kilometre trip raised $4,000 for a summer camp Mahony founded and runs for autistic youth in Hamilton, where he is a special-education teacher.
Mahony started the Winner's Circle camp in 2001 as a place where children with severe autism receive one-on-one attention from staff.
If parents can't afford the $50 registration fee, then it's free, Mahony said.
Yesterday marked the end of his third attempt at crossing. Three days ago, when he hit open water on Lake Ontario, trees on shore were creaking and bending in the wind and so he turned back.
A small Canadian flag was affixed to his kayak's stern to mark the holiday.
He said he plans on paddling the rest of Canada's Great Lakes and added that he likes to paddle out five or 10 kilometres, where the water is all his, to sit and drink coffee.
Family of boy with autism wins backyard makeover
Friday, July 06, 2007 -- Natalie Miller
An Alliston-area parent of a six-year-old son with autism has increased peace of mind after winning a backyard makeover contest which includes a sturdy fence to keep her child safe.
Lianne Graymar and her family won a $25,000 backyard facelift courtesy of the Sunlight Multi-Action Outdoor Makeover Contest.
“This has meant so much to our family,” says Graymar.
“The first day I was able to open my patio door and tell Carter to go play was a very emotional day. The feeling of not having to worry was something that my family had never been able to do. It means I can now sit on a blanket with Carter's sister (twin, Miya) and blow bubbles instead of being by his side and ready to run.”
“The backyard is beautiful,” says Graymar. It includes grass, five gardens, a basketball court and a dog pen for Carter’s service dog who will join the family later this month.
To see before-and-after photos, visit http://www.sunlightlaundry.ca/story/
The TV spot about the contest winner has aired on YTV and the W network during the past two weeks.
Graymar was prompted to enter the nationwide contest after seeing an ad on television. Like many children who have autism, Carter sometimes bolts without warning and his family did not have a fenced-in yard.
“We have an acre of land that backs on to hundreds of acres of Base Borden forest,” Graymar earlier explained. “Our fear is that Carter will venture into the forest as well.”
The family learned this spring it was one of four finalists and was delighted to hear the exciting news of the win recently. “We just had our wedding (June 23) and it was a beautiful backdrop,” notes Graymar.
In May, Canadians voted for the contestant they felt deserved the outdoor makeover on the Sunlight website. The Canadian autism community also stepped up to support the Graymar family.
Graymar earlier explained she planned on having a chain-link fence installed but changed her mind after she saw Carter effortlessly climb a relative’s fence. Cost was a factor in building something more suitable.
Graymar says while she appreciates what her family has received so many other parents of children with autism face the same quandary.
“This has been wonderful but there are other families who need help just like mine. I hope to let people know that my situation is not unique it is a struggle we all face with safety.”
Walkers looking forward to home after marathon
Rob Skelly, Marcel Destine, Andrew Rossi, Daniel Rossi and Mark MacDonnell arrive back in Markham tomorrow after walking 2,500 kilometres from Halifax to raise money for the Centre for Dreams.
MORE STORIES
Markham
Jul 07, 2007 07:49 AM
By: Simone Joseph
One of the worst periods of Andrew Rossi and friends’ trek from Halifax was three to four days walking the Trans Canada Trail in Quebec.
Mosquitoes pestered them. Their truck with food and supplies could not be with them.
They were not allowed to walk Quebec’s highways. Instead, they walked the Trans Canada Trail as an alternate route.
On Sunday, the Five With Drive returns home.
“I am a little relieved. I kind of miss home, miss my bed,” Mr. Rossi said in an interview this week.
He will certainly not miss sleeping on a hard floor in tents, days walking through rain, soaked socks and shoes and relying on the sun as a dryer.
The Five With Drive crew has walked 2,500 kilometres from Halifax, Nova Scotia in support of The Centre for Dreams, which has programs for developmentally challenged adults.
The group returns to the Markham Civic Centre Sunday (near Hwy. 7 and Warden Avenue), where a celebration is planned with live music, jumping castles, clowns and a barbecue.
Mr. Rossi, his brother, Dan, and neighbour Marcel Destine, all from Markham, teamed up with Newmarket’s Mark MacDonnell and Richmond Hill’s Rob Skelly. All have volunteered with people with developmental disabilities, such as autism, Downs syndrome and cerebral palsy.
Their 43-day trek was a bid to raise $100,000 for the centre.
About $30,000 was raised before the walk began May 27 and ticket sales for a Vespa motor scooter raffle Sunday also go into the pot. One raffle ticket is $10 or three for $25.
Meanwhile, a three-day walkathon, from June 26 to 28, raised $12,000 for the Centre for Dreams, exceeding the goal set by organizer Harry James.
Mr. James, who is also the centre’s board chairperson, participated in the walkathon, which attempted to mirror the Five with Drive walk using elliptical machines.
As for the walkers, they walked an average of 13 hours (as much as 55 kilometres) per day followed by a truck and trailer donated by Woodbine Chrysler.
They slept in tents or in homes and hotels that offered free shelter.
One of the enjoyable parts of the walk was hearing each person’s life story, Mr. Rossi said.
They played games to pass the time, such as quoting movie lines and guessing who said them.
“It takes your mind off of the physicality of the walk,” Mr. Rossi said.
As for their plans?
“We just want to go home and feel satisfied we walked it. We did what we set out to do,” Mr. Rossi said.
The team has a GPS link, which can tell you where they are, at www.fivewithdrive.ca
Festivities run from 3 to 7 p.m., with the arrival ceremony at 5:30 p.m.
For more information, to support the team or make a donation, visit www.fivewithdrive.ca, www.dreamsinc.ca or call 905-209-9092.
From a listmate
Dear friends,
I write first as the father of Dov, a 15 year old boy who is very challenged by autism. Secondly as the founder of Cure Autism Now and finally as a board member of Autism Speaks.
I was moved when I read Katie Wrights letter on the NAS website. I thought it was brave, and thoughtful and courteous. And because there has been so much strife in our community and I have felt so heartsick about it, her letter moved me to share some thoughts---
Katie Wright is a devoted mom with a very sick child, and she is looking high and low for something that will help him.
Bob and Suzanne Wright are loving parents and grandparents dealing with a double shot of grief, one for their daughter and one for their grandson. They, too, are looking as hard as they are able for
something to help him.
And so am I. The search for answers is what prompted me to start Cure Autism Now. And though we haven't found the answers yet, the one thing I am pretty sure about is that we won't find them any faster by insisting that everyone search in exactly the same place.
Whether we try to heal autism with environmental research, genetic research, prayer books, PhDs, double blind studies, or business plans written by consulting firms, aren't we all honest, brave, sad and good? Don't we all love the autistic people in our lives for who they are, and don't we all also want more for them?
Is there a family that hasn't had a fight? Aren't we all just so frantic sometimes as we desperately search for ways to help our children? Don't even the best of us sometimes get angry and cast
blame? Here's is just the briefest sampling of my family dialogue, tell me if it doesn't sound familiar:" If only we'd started ABA earlier,… We should have done floortime….We can't vaccinate the
others…Are you kidding? They won't let them into school… I want to go gluten free….I'm just grateful he's eating anything even if it is 100 grilled cheese sandwiches…. No wonder he's autistic, your family is crazy…. Mine? No you must be mistaken, you are a nut, and your nutty
family is definitely nuttier… have you talked to your father lately…No?...my point exactly…"
And yet, what do we agree about in our family? We agree that Dov deserves our love, our respect, our commitment, our hope and our hard work, We believe that he is counting on us to help him. Dov who can only communicate by painstakingly slow typing, knows he is autistic and he has told us many times that he doesn't like it. And so our family will put aside our squabbles as best we can and keep on working.
To the activists, bloggers and the journalists I want to beg for just a little mercy and restraint. Let us make our own best arguments on the merits rather than use this one family as our proxies.
There are so many things we need to fight for together,.We need more research, more trained therapists, we need Medicaid waivers, IDEA funding, the kids in the neighborhood to be more kind and less cruel. We don't really need hate mail and editorials that make us out to be idiots. The last thing we need to is fight against each other. There are real enemies out there. There is a disorder that is crippling a generation and there is a government that takes very little interest. If I have learned anything in ten years of lobbying it is that the feds love it when we are factionalized and fighting amongst ourselves.It buys them one more year when they don't have to do
anything.
To Katie, I'd like to say thank you. Your letter was strong and kind. You have been brave. I'm glad you are in the fight, I hope you stay in it., We need many voices.
I agree with you urgency is still so very important. I have been working to find treatment and a cure for autism for 14 years and I am NOT doing it for the next generation. I am doing it for this
generation.
To the board and supporters of Autism Speaks, if some of our critics are right, and urgency isn't a big enough part of our vision, then we need to change. The same with treatment. Even while the larger answers to larger questions may take more time, people with autism can have a better quality of life today and we must help that happen.
If we are not seeking out new ideas and fresh talent, then we must change. If innovation is somehow perceived as the enemy of excellence, then we must change. If we don't deeply understand that in order to lead we must serve, than we must change.
I think we haven't gotten it totally right yet at Autism Speaks. But we are new and we trying really hard. We are trying to integrate a couple of strong, proud organizations, we are trying to move fast, and occasionally, we stumble. I hope we recognize that we can learn and improve.
We will have faith, but we will earn our miracles We will use our hearts and our minds to grab them from the dreamy future and bring them here today. We will find the best scientists and encourage them to use all their wisdom, art and discernment to treat and to cure autism. And when we have done that, we will do it again the next day. We will be optimistic, but not satisfied, we will question authority, despise complacency and above all love our children---for that is the obligation without end whose reward is also without end.
In peace,
Jon Shestack
From a listmate
Fears Over Massive Surge In Autism
Updated: 09:33, Sunday July 08, 2007
The number of children in Britain with autism is almost as twice as high as previously thought.
Questions over MMR jab for pupils
A report published in the Observer found one in 58 may have the condition - compared to the existing estimate of one in 100.
The figures, compiled by Cambridge University's Autism Research Centre, estimates as many as 210,000 children under 16 could be autistic or suffer from a related disorder.
Prior to the 1990s, experts estimated the rate of autism in Britain to be around four or five cases per 10,000 people.
The reason for the increase is not known. It may be due to a genuine rise in cases, or merely the result of labelling more children as autistic.
Autism is an umbrella term for a range of developmental disorders that impair a person's ability to interact socially and communicate.
http://news.sky.com/skynews/article/0,,30100-1274176,00.html
From a listmate
July 6, 2007 THE GUARDIAN (CHARLOTTETOWN)
Autism Society praises ruling on Disability Support Program
The Autism Society of P.E.I. is praising a recent human rights panel decision that took the province's Disability Support Program to task for treating the mentally disabled differently than the physically disabled.
A group of four families of children with cognitive challenges, three of whom had autism, challenged the DSP and successfully showed discrimination on the basis of age and disability. The province hasn't responded but the society says the ruling provides a chance to redesign the DSP.
"It is our hope that we can work collaboratively with the province to improve services for Island families affected by autism," said society president Michelle Pineau. "We look forward to an upcoming opportunity to sit down with the new administration to discuss these important issues for Island families."
__________________________________
July 4, 2007 EDMONTON JOURNAL (FINAL)
Treating autism early
Audrey Jensen, The Edmonton Journal
Re: "Medicare coverage for autism urged: Actor Eugene Levy demands Ottawa treat autistic children fairly," The Journal, June 14.
Kudos to Eugene Levy, who is playing the role of strongman in attempting to get fair treatment from medicare for the forgotten children, the victims of autism.
Treatment can cost parents as much as $60,000. Autism is associated with neurological brain damage, speech difficulties, etc.
My grandson is autistic and I am aware of the anguish. It's like someone has stolen into your house during the night and left a child's bewildered body.
My son and his family lived in Arizona. A highly qualified technician had suspected my grandson of being autistic. A diagnosis is often done around the age of 18 months, when most babies start trying to talk. House calls and intensive treatments continued until my grandson was three, with the state picking up the entire tab. Then, a school bus picked him up three days a week and took him to a special autism school. All expenses were paid by the school district.
I was amazed at the improvement that early intervention made. One technician said cutting back on research and treatment of autism would cost more in the long run, as it would cost taxpayers millions more to provide lifetime care for an autistic person.
I maintained that autism could be reduced if its cause was found and eradicated.
A new study of more than 9,000 boys in California and Oregon has found that vaccinated boys had a 155-per-cent greater chance of having a neurological disorder like ADHD or autism than unvaccinated boys.
Audrey Jensen, Red Deer
From a listmate
Letter Printed
Tor Sun
Sunday July 8
AUTISM RIBBON WORKS
(Re “A Chainsaw to the old oak tree” Rob Granatstein, July 1)
In conversation with my local MPP’ Garfield Dunlop, I told him of my grandson Michael Felstein. He asked how Michael was being helped and then ran two blocks and came back with an autism awareness ribbon for me to put on my car. Since then, contrary to your statement that they have become part of the background, I have had people stop me in parking lots, at the park, in my driveway, etc, all asking where they can get one and about knowing someone who is autistic.
I live in a village of 900 but am close to a town of 10,000. It has made me aware that if that many people are asking in such small communities, how many families are coping with this situation. I feel that the ribbon has fulfilled its purpose and has and will bring awareness to this Diagnosis that is still shrouded in mystery.
Barb Andrews
Victoria Harbour
IMPORTANT ANNOUNCEMENT FOR ONTARIO
Province sending autistic children to summer camp
Tue, July 10, 2007
By CP
TORONTO -- Hundreds of autistic children will be able to go to special summer camps because of last-minute funding from the Ontario government, CP has learned.
A news conference is scheduled for this morning to announce further details about the $530,000 in funding that will help give more than 800 kids specialized care in preparation for school in September.
"Summer camps not only help maintain skills gained during the school year, they also give families a bit of relief while their children receive expert care in a positive setting," Children and Youth Services Ministers Mary Anne Chambers said in a release.
It's a good-news announcement for families across the province, said Margaret Spoelstra, executive director of Autism Ontario.
"We have been talking to governments over many, many, many years about the needs that parents have to fill that gap in the summertime, which requires extra supports for kids with autism," she said.
"This additional support will go a long way to help us increase the number of kids attending camp and also to provide some one-to-one support the kids require."
In May, the Ontario government also gave $38,000 to a Toronto camp that was on the verge of closing its doors after being denied federal funding.
Spoelstra said that loss of federal funding was a reality check for Autism Ontario, which has a network of 29 volunteer-run chapters across the province.
"That prompted us as an organization to really pay attention to what was happening at some of our camps," she said.
Many of the camps with shoe-string budgets would have been in danger of not operating for the summer if they too lost the little funding they will now receive.
"They do lots of fundraising in their areas but it's never (as much as) what they would hope for, so the investment the province is going to make Tuesday will help," Spoelstra said.
July 10, 2007: Autism Ontario - Summer Camp Relief for Children with Autism
FOR IMMEDIATE RELEASE
For details of the program, click here.
SUMMER CAMP RELIEF FOR CHILDREN WITH AUTISM
Toronto, July 10, 2007 — At least 647 Ontario children with autism will now be able to attend summer camp.
This morning, Honorable Mary Anne Chambers, Minister of Children and Youth Services announced a total investment of $530,000 to subsidize camp programs and to assist families in paying for one-to-one workers who support their children with Autism Spectrum Disorder (ASD) to participate in summer camp programs in communities across Ontario.
Autism Ontario Chapters Will Receive Subsidies To Support Their Established Camp Programs
This summer has been particularly difficult for parents in the Dufferin, Hamilton, Niagara Region, Sarnia, and York Region chapters. While each chapter and its many volunteers work the entire year to raise the necessary funds to operate their summer camps, shortfalls in donations from federal contributions and corporate donations were leading to cutbacks in the number of children that could be served.
For example, Autism Ontario-York Region Chapter’s Camp AOK was planning to greatly reduce the number of children with autism that it could serve.
Paul Kalmykow, Camp AOK Committee Coordinator, said “The shortfalls were leaving us with very few options. For the first time in the program’s 20 years, we were considering cancelling services altogether.”
Upon hearing the news of the subsidy for their Niagara Region Camp Program, Mike Gowan, parent and Niagara Region Chapter President, said, “Last summer we offered placements for 30 children in our summer camps, this year the demand is for 72. This was stretching our budget beyond its limit. With this extra money, we will be able to continue to offer very specialized programs to Niagara’s children with ASD that desperately need summer learning services.”
Subsidies for an Additional 500 Children
In addition to the funding for the six Autism Ontario camp programs, at least 500 Ontario families with a child attending a community summer camp program may apply for reimbursement of up to $585 per child. Reimbursements will be given specifically to pay for one-to-one support workers hired to accompany their child with ASD to a community summer program.
“I have had so many families tell me that while they can often afford the camp fees, paying for a one-to-one support worker for their child is simply prohibitive,” said Deborah Kitchen, parent and Autism Ontario President.
“Without a worker, it is impossible for most children with autism to attend an integrated camp setting and to have a safe and positive learning experience. More often than
Ministry of Children and Youth Services
McGuinty government helping to send more than 800 children and youth with autism to camp this summer
RICHMOND HILL, ON, July 10 /CNW/ - The McGuinty government is investing
$530,000 in nine autism-support camps which will help send more than 800
children and youth with autism to camp this summer, Minister of Children and
Youth Services Mary Anne Chambers announced today.
"By investing in summer camps for children and youth with autism we are
strengthening and broadening the continuum of services available for children
and their families," said Chambers. "Summer camps not only help maintain
skills gained during the school year, they also give families a bit of relief
while their children receive expert care in a positive setting."
Approximately $210,000 will be used to support nine camps for children
and youth with autism across the province. The remaining $320,000 in funding
will be provided to Autism Ontario to reimburse families who hire one-to-one
support workers to enable approximately 500 children and youth with autism to
attend camp this summer.
"The province's investment will enable Autism Ontario to increase the
number of children attending camp and provide the one-to-one support staff
that our children require," said Autism Ontario Executive Director Margaret
Spoelstra. "Parents have told us many times that the respite provided by the
camps is extremely helpful to families involved in the day-to-day care of
children with autism."
"Our goal for the past 20 years has always been to provide a quality
summer camp experience for children and youth with autism at a reasonable cost
for their families," said Paul Kalmykow, a parent of a child with autism and
Coordinator, Camp Committee, Autism Ontario York Region Chapter. "This
generous contribution from the Ontario government will help us fulfill this
dream."
Other ways the government is working together with community partners to
support students with autism include:
<<
- Assessing all children referred to the Autism Intervention Program
since July 2005 regardless of age
- No longer discharging children from the Autism Intervention Program on
the basis of age
- Increasing the number of children receiving Intensive Behavioural
Intervention services to 1,200 - a 125 per cent increase since
April 2004
- Tripling the support for children with autism and their families since
2003-04 - increased funding to nearly $130 million in 2007-08
- Creating the Ontario College Graduate Certificate Program in Autism
and Behavioural Science and increasing the number of qualified
professionals graduating from the program to 220 by 2008-09
- Reducing the waitlist for assessment for the Autism Intervention
Program by 73 per cent since 2004
- Training up to 1,600 childhood educators and child care workers and
5,000 educational assistants who work with children with autism
through the Geneva Centre for Autism
- Providing nearly $6 million in further investments to allow school
boards to provide Applied Behaviour Analysis for students who need it
beginning in the 2007-08 school year.
"Parents have been telling us they want real choice when seeking services
for their children and we have listened," said Chambers. "Our government has
responded with investments in supports to help more children and youth with
autism and their families and to find ways of serving them better."
Disponible en français
www.children.gov.on.ca
Province to announce $530,000 in funding to allow 800 children to attend specialized summer camps
Jul 10, 2007 04:30 AM
Kerry Gillespie
QUEEN'S PARK BUREAU
Hundreds of autistic kids will get to enjoy swimming, sports days and other fun camp activities this summer because of provincial funding to be announced today.
Children and Youth Services Minister Mary Anne Chambers will announce $530,000 to help fund 800 kids in nine specialized summer camps across the province, the Toronto Star has learned.
"Summer camps not only help maintain skills gained during the school year, they also give families a bit of relief while their children receive expert care in a positive setting," Chambers said in a press release obtained by the Star.
In May, the Star reported that the "Yes I Can!" nursery school in Toronto, which has taken in autistic and low-income kids for its summer programs for more than a decade, was set to close because the federal government denied its request for its regular grant money.
When Chambers read about the 45 autistic kids who would lose their camp placements because of it, she said the province would save the camp by paying the $38,000 in missing funding.
Following that, other camps in need came forward, leading to today's larger funding pledge.
The funding, which is to be annual, breaks down like this:
$210,000 will go to the nine camps to pay operational costs.
$320,000 will be given to Autism Ontario to reimburse families who pay for a one-on-one support worker so their severely autistic children can attend camp. This portion will enable about 500 autistic kids to attend camp this summer.
"The province's investment will enable Autism Ontario to increase the number of children attending camp and provide the one-to-one support staff that our children require," Autism Ontario Executive Director Margaret Spoelstra said in the press release.
"Parents have told us many times that the respite provided by the camps is extremely helpful," she said.
The Liberals have made several autism announcements in recent years, including increased spending on therapy and training for support workers, but they had a rocky start with the issue.
During the 2003 election Premier Dalton McGuinty promised he'd provide intensive autism therapy to kids who needed it regardless of age. At the time, they were only eligible for the expensive one-on-one treatment until age 6. But McGuinty's delay in carrying out his promise led to a court case by angry families and many hard feelings.
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