Alliance For Families with Autism
March 4, 2008
REMINDER NOTICE From January UPDATE
And Articles of utmost importance this week.
The Alliance for Families with Autism (AFA) compiles and distributes weekly news mailings of pertinent information. We appreciate all of the positive comments and feedback we have received regarding our mailings.
“We do want to advise you there will be NO mailings from March 01 – March 17, 2008. You can still review current information during this time at http://autismnewsarticles.blogspot.com”
IF you check the blog you won’t miss a mailing at all!
Please ensure you forward any information that needs to be included on this blog for the time period March 1-17th (especially information that is time sensitive). Please forward articles and information to email@example.com
Autism News Articles
February 28th , 2008-March 4th 2008
AFA (The Alliance for Families with Autism) prepares these news articles as a courtesy to your inbox and can be found archived at:
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For Immediate Release
February 29, 2008
AUTISM TOWN HALL MEETING WITH MINISTER MATTHEWS AND MINISTER WYNNE
Toronto – February 29, 2008 – The Alliance for Families with Autism (AFA) is pleased to announce we are hosting a Town Hall Meeting regarding the issues surrounding autism on Tuesday, March 18, 2008. The meeting will include Ministers from the Ministry of Children and Youth Services as well as the Ministry of Education.
In attendance will be Hon. Deb Matthews, MCYS and Hon. Kathleen Wynne, MEDU. All parents and families are welcome to attend this unprecedented event. It is a unique opportunity for the autism community to voice their opinion with regards to current programs and receive an update from both Ministers regarding the direction of their ministries for the future.
The Alliance for Families with Autism (AFA) is a volunteer organization. Our executive members include parents and a grandparent of children with autism. Our mission is improving the lives of children and adults affected by autism. We continue to provide factual information in a non-partisan approach to all stakeholders.
LOCATION: Bur Oak Secondary School , 933 Bur Oak Avenue , Markham , Ontario
DATE: Tuesday, March 18, 2008 6:30 pm
Following the Town Hall Meeting there will be media availability at 8:30 pm. Executive members from the AFA as well as Hon. Deb. Matthews and Hon. Kathleen Wynne will be present for interviews.
For more information please contact,
Cindy DeCarlo (705) 737-0417 firstname.lastname@example.org
Trish Kitching (705) 222-9432 email@example.com
THE ALLIANCE FOR FAMILIES WITH AUTISM (AFA)
Please contact us at firstname.lastname@example.org
Please forward articles & information to email@example.com
Check out the news article BLOG sent out with each mailing.
Special Request From Tammy Starr, Carly Fleischman’s Mother.
I want to bring everyone up to speed with events of the past week since they have been truly overwhelming. As many of you saw, both ABC and CTV did a report on Carly's ability to communicate her thoughts and feelings on how it feels to be autistic, etc. The response to both stories was so overwhelming that both networks did a follow up on it the next night.
We have been approached by both W5 and 20/20 about doing a longer story and we are working on that now. 20/20 is coming to meet with us on Monday. The Toronto Star has also approached us and we have had a number of book offers! We truly never expected this level of impact ... Carly has given thousands of families insights into their own kids --she has validated their intution about their kids that they were previously too afraid to trust.
ABC told us that a typical medical report on TV translates into around 7,000 hits on abc.com but as of last Friday, there had been over 250,000 hits! We have received over 1,000 messages via the CTV and ABC message boards. Most are of encouragement and gratitude and some are of skepticism, fearing that this is no more that facilitated communication and that my husband and I are basically delusional.. . interestingly, it is mostly professionals making these disparaging remarks since so many were burned on FC years ago. There is defiinitely a group of professionals out there --like the ones who testified against our kids in Wynberg/Deskin never having met them -- that love to discredit parents. That is why we felt so vindicated when Justice Kitelely said in her 2005 decision that parents are the front line experts when it comes to their kids. She "got it".
One of the points in doing this story was to show that Carly's greatest gains have come in the past year -- if we had been forced to stop ABA at age 6, I shudder to think where she would be now. Looking back at our tapes of Carly when she was 7 and 8, I realized how far she has truly come and what real progress she has made, despite the challenges she still faces.
Looking back at her psycho ed assessments over the past 8 years, they show that she was continuing to make solid and consistent gains when compared to the previous assessment, i.e. when compared against herself. However, only in receptive language was she ever at or above her chronological age level and that didn't happen until two years ago. I am guessing here that had she been subject to assessments under the regional programs, she would have been cut off funding a long time ago, and that frightens me in terms of what criteria are being used to determine benchmarks. Also, are parents being allowed to submit their own assessments from their own professionals? How many of our kids would "perform" well in a strange clinical setting with people they have never met, all the while sensing their parents' stress and tension knowing that this is a do or die scenario.
There is currently a panel meeting right now to determine these benchmarks and I know that Carly is only one person, but I cannot believe that she is one in a million. Now that children cannot be cut off because they turn 6, what will be the criteria and will it just be "age 6" under a different guise? Will parents be able to appeal these decisions?
If parents had a reasonable and effective alternative to the AIP program--i.e. ABA delivered in schools or elsewhere, under proper supervision and by properly trained staff - -then I personally don't believe we would be witnessing the panic that currently exists. But since schools continue to deny access to therapists and perpetuate what Justice Kiteley called "a policy barrier" against ABA in schools (and don't tell me it cannot be done in schools and don't tell me that IBI and ABA are anything different from eachother), then parents literally are at the cliff's edge when they get "the call" to come in for an assessment.
(The Wynberg/Deskin transcripts have over 30,000 pages and one thing the AG lawyers spent alot of time on was trying to define ABA vs IBI. I think it needs to be explained that despite what you may be told-- THERE IS NO DIFFERENCE BETWEEN IBI AND ABA. THE TERM IBI DID NOT EXIST UNTIL ONTARIO CREATED IT IN ORDER TO TRY TO DISTINGUISH IT FROM ABA AND TO BE ABLE TO SAY IT CANNOT BE DONE IN SCHOOLS. IN HIS TESTIMONY, DR. RON LEAF (WHO CONSULTS ALL OVER THE WORLD AND WORKED WITH DR. LOVAAS ON THE LANDMARK 1973 STUDY) SAID, "THE ONLY TIME I USE THE PHRASE IBI IS WHEN I AM IN ONTARIO. OTHERWISE I SAY ABA." If you haven't been told this already, you will be told that ABA is therapeutic and clinical and cannot be done in schools. Dr. Adrienne Perry --who is on the benchmarks panel --- debunked this myth in her testimony and she was a witness for the defendant! Also, you will be told that IBI in intensive and ABA is a general approach/use of IBI -- there is nothing in the literature to back this up-- it is a construct of the school boards and Education in order to shoot it down. Hope that helps clear up any confusion anyone newer to all this may be having.)
That is why I think there needs to be alot of transparency where this panel is concerned. For those of you in certain regions, your clinical directors are involved and I urge you speak to them and put your concerns in writing, on the record and cc the minister of Children and Youth Services on the email. This is structure as an arm's length panel but its recommendations are intended to be implemented by the AIP program
Here are the Clinical Directors who are taking part:
1. Dr. Nancy Freeman --- TPAS (she is chairing the panel) nancy.freeman@ surreyplace. on.ca
2. Dr. Joanne Reitzel and Dr. Peter Szatmari szatmar@mcmaster. ca CAN SOMEONE OUT THERE PLS SUPPLY THE EMAIL FOR JOANNE REITZEL?
3. Dr. Jennifer Dunn Geier jdunngeier@cheo. on.ca
Parents on the panel:
1. Judy Grabowsky (Hamilton)
2. Robert Brown (Ottawa)
!. Dr. Tristam Smith from Rochester
2. Tracie Lindblad tracie@cdco. com
3. Dr. Adrienne Perry perry@yorku. ca
I am frankly concerned that there are no DFO PhD's on the panel... I would like to know why and I suggest we all ask about that.. was that intentional or not?
I think it would be a good idea for the DFO families who get this email (past and present) to forward that posting to their service providers and urge them to get in touch with the regional program clinical directors to find out why NOT ONE DFO SERVICE PROVIDER WAS INCLUDED ON THIS BENCHMARKS PANEL!!! I for one do not see that as an oversight and for those of you are currently receiving funding, this is truly in your best interest to do even if it puts you on the radar --if that makes you nervous, then let your service provider do it but just make sure it gets done. There is way too much at stake here and these meetings and decisions that get made behind closed doors make me very queasy...
I am sending this out because I am frankly heartsick that the efforts we made to end the age 6 cutoff may end up being for nothing. I am not a cynical person by nature -- but I am concerned because of the nature of emails I am getting from parents around the province as to what is happening to their kids and their families. I don' t think that being told " Well we need to give other kids a turn" is a clinical benchmark but that is what I am hearing is going on...and as long as certain tests are being used that are clinically known to be appropriate for typical kids but do not give accurate measures of intelligence for individuals with autism ( e.g. Wechsler -- see the latest edition of Wired at www.wired.com and as long as there is no appeal process --as is currently the case --I am just frightened for our children. If some of you think I am out of line, that's okay --I would rather be too vigilant than not enough.
Thanks very much.
DFO FAMILIES PAST AND PRESENT AND DFO SERVICE PROVIDERS
Posted by: "Tammy Starr" firstname.lastname@example.org tamstarr1
Sat Mar 1, 2008 12:13 pm (PST)
I was thinking about my posting from the other day and I think it would
be a good idea for the DFO families who get this email (past and
present) to forward that posting to their service providers and urge
them to get in touch with the regional program clinical directors to
find out why NOT ONE DFO SERVICE PROVIDER WAS INCLUDED ON THIS
BENCHMARKS PANEL!!! I for one do not see that as an oversight and for
those of you are currently receiving funding, this is truly in your
best interest to do even if it puts you on the radar --if that makes
you nervous, then let your service provider do it but just make sure it
gets done. There is way too much at stake here and these meetings and
decisions that get made behind closed doors make me very queasy...
Here is an entire email list of MPP’s for our province to aid you in letter writing concerning your family member with disabilities or any other matter relating to your family.
email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com
Snippet regarding the budget
"Training for Individuals with Autism or Other Disabilities
The budget proposes to expand the exemptions for basic health and education services. Training will qualify for exemption where it is supplied after February 26, 2008 and is specifically designed to aid individuals in coping with the effects of a disorder or disability. Typically, these provisions will apply to specially-designed training supplied by a government, training that is funded by a government program, or where a health care professional who makes exempt supplies identifies the training as an appropriate method of assisting an individual to deal with a disability or disorder.
This exemption is focused on ensuring that children with autism who require assistance to help them cope with the daily impact of this disorder obtain the training without the burden of GST/HST. Previously, some training required by these individuals was exempt while other forms of training were considered to be taxable."
AUTISM ON THE SEAS CRUISES
Latest News as of March 3, 2008
Click each cruise to learn more information
March, departing Los Angeles, CA to Mexico, 3 nights
June, departing Port Canaveral, FL to the Bahamas and the Caribbean
August, departing Bayonne, NJ to Bermuda
November, departing Ft Lauderdale, FL to the Caribbean
2009 cruises are being planned, and should be announced within the next 2 months or so...
Enhanced Group Pricing Discounts...
We've enhanced our Group pricing within the last couple of months. If you would like to review the discounts we offer, click here.
We just introduced a Pre-Cruise Questionnaire beginning with our March Cruise departing LA. The questionnaire is designed to collect some general information on each person that will be traveling with us that has autism. This information will be used to help us customize each cruise and the activities that we provide.
Flexible Payment Plans
Did you know that you can establish your own payment plan? Click here for details
Pick your Cabin
Did you know that you can pick your own cabin on our Group Cruises?
You can choose your deck and specific location of your cabin....
Click here to learn more
We have extensive services and facilities to accommodate most types of disabilities, which are all included in your normal cruise fare. Our "Access on the Seas" services can enable you, a family member or someone else you know who may have a disability, to enjoy cruising. All of these services are available on all of our group cruises, including "Homeschool on the Seas".
Infant Onboard Credit Policy
Alumni Cruises recognizes and sympathizes with families who have infants, and has developed a policy of offering an onboard credit to each family who has an infant (18 months or less at time of sailing). Click here for more information
Did you know?
Our Group Pricing and Referral Program is open to anyone. You can earn a cruise discount, or even cruise or free. Donations to Autism Organizations are also possible. For more information Click here.
• We are pleased to present you with the latest updates on our Autism Group Cruises.
• Expect our Cruise Bulletin once every month or sooner (if we have any substantial updates or news).
• Feel free to contact us at any time with questions, suggestions or more information.
• Check our website often too, as we will be posting various updates there as well.
• Other activities, sponsors, and autism industry guests are currently being evaluated and considered… all included in your price.
*Services, itineraries and dates subject to change without notice.
*Comprehensive trip cancellation and travel protection insurance is available. Ships registered in the Bahamas.
*If you wish to be removed from this mailing list, please reply to this email, and type “REMOVE ME” in the Email Subject Line.
From a listmate
WASHINGTON (Reuters Health) - Attorneys for the Bush Administration asked a
federal court on Monday to order that documents on hundreds of cases of
autism allegedly caused by childhood vaccines be kept from the public.
Department of Justice lawyers asked a special master in the US Court of
Federal Claims to seal the documents, arguing that allowing their automatic
disclosure would take away the right of federal agencies to decide when and
how the material should be released.
Attorneys for the families of hundreds of autistic children charged that
the government was trying to keep the information out of civil courts,
where juries might be convinced to award large judgments against vaccine
The court is currently hearing approximately 1,000 claims brought by the
families of autistic children. The suits charge that the
measles-mumps- rubella (MMR) vaccine, which until recently included a
mercury-containing preservative known as thimerosal [sic], can cause
neurological damage leading to autism.
Federal law requires suits against vaccine makers to go before a special
federal "vaccine court" before any civil lawsuit is allowed. The court was
set up by Congress to speed compensation claims and to help protect vaccine
makers from having to pay large punitive awards decided by juries in state
civil courts. Plaintiffs are free to take their cases to state courts if
they lose in the federal vaccine court or if they don't accept the court's
The current 1,000 or so autism cases are unusual for the court. Because it
received so many claims, much of the fact-finding and evidence-gathering is
going on for all of the cases as a block.
Monday's request by the Bush Administration would prevent plaintiffs who
later go to civil court from using some relevant evidence generated during
the required vaccine court proceedings.
Plaintiffs' attorneys said that the order amounted to punishment of the
families of injured children because it would require them to incur the
time and expense of regenerating evidence for a civil suit.
"Wouldn't it be a shame if at the end of the day our policy would be to
compensate lawyers," said Jeff Kim, an attorney with Gallagher Boland
Meiburger & Brosnan. The firm represents about 400 families of autistic
children who received the MMR vaccine.
Kim accused the government of trying to lower "a shroud of secrecy over
these documents" in order to protect vaccine manufacturers, who he said
were "the only entities" that would benefit if the documents are sealed.
While federal law clearly seals most documents generated in individual
vaccine cases, it has never been applied to a block proceeding like the one
generating evidence in the autism cases.
Administration lawyers told Special Master George Hastings that they
requested the seal in order to preserve the legal right of the Secretary of
Health and Human Services to decide when vaccine evidence can be released
to the public.
Justice Department attorney Vincent Matanoski argued that to let plaintiffs
use the vaccine court evidence in a later civil suit would confer an
advantage on plaintiffs who chose to forgo federal compensation.
"There is no secret here. What the petitioners are arguing for are enhanced
rights in a subsequent civil action," Matanoski said of the plaintiffs.
"They're still going to have unfettered use within the proceedings. "
Hastings would not say when he would issue a ruling on whether to seal the
court documents, but did say that his decision would be "very prompt."
Google Alert – Autism Autistic Mental Health
February 29, 2008 THE RECORD (KITCHENER, CAMBRIDGE AND WATERLOO) (FINAL) PAGE: D1 (LIFE)
Orphans of the health system
Children with emotional, mental or behavioural problems get little help
VALERIE HILL, RECORD STAFF
When a child develops an illness such as cancer, there is often a rallying of the troops: friends and family gather to help, to raise funds, to support the family in myriad ways.
But not so if that child suffers from a mental illness.
"No one ever made me a lasagna," said Tina Blanchette, mother of nine-year-old Thomas, who has Tourette syndrome among other serious emotional issues.
With statistics suggesting one in five Canadian children will suffer from some emotional, behavioural or mental health problem, it means a lot of children and a lot of families who are getting little empathy or support from their communities.
"What are we saying about our kids?" asked the Waterloo mother, who is a member of Parents for Children's Mental Health, a support, advocacy and education network.
In school, such children are often segregated and treated differently, she said. Blanchette talked about one teacher who couldn't handle the disruptive behaviour of Thomas and instead kept him in a segregated area in the back of the classroom, alone.
"These kids get labelled, as if they're choosing to be different. What kid wakes up in the morning and wants that?"
Laura Coughlin of Kitchener has years of experience battling public perception of mental illness, particularly in relation to children.
"They think it's bad parenting," she said.
Coughlin and her husband Alan have adopted six children: all have struggled with some measure of mental health issues. In July their 20-year-old daughter Ashlee took an accidental overdose and died. The Coughlins adopted Ashlee at age nine months and spent the next 20 years battling to get service, to find some level of acceptance for their children.
"A number of parents decided we needed to do something to advocate for them," Coughlin said. "There's a real void for families with children with mental health issues . . . there hasn't been enough advances.
"Kids with mental health problems are the orphans of the mental health system. It's partly the stigma."
Coughlin has two adopted children still at home: Tracy, 13, and Shamari, 7. Both have behavioural problems that affect most aspects of their daily lives.
Not everyone understands, Coughlin said. "If I said Tracy can't write because she has finger motor problems, they understand that but if I say she has complex mental health problems, they don't."
Tracy is thought to be bipolar and have anxiety disorder, developmental delays, autism, fine and gross motor problems, among other concerns.
"There isn't an official label that goes with her. You have to be 18 to get an official label: bipolar, schizophrenia, anxiety disorder, depression, suicidal," Coughlin explained.
With limited government or medical assistance for these children, parents like Coughlin and Blanchette can lead an exhausting life, enjoying limited relief, with one exception: kidsLINK, a St. Agatha-based organization, which this year celebrates 150 years of assisting children with mental, behavioural and emotional problems.
kidsLINK provides a number of services, including a one-day respite for families where the child stays at the centre from morning until 7 p.m., meals included. At present, 91 children with mental health problems, and 28 with autism are in the program. This summer 30 more spaces will open.
For the children, it's a day of learning and fun, where they meet other children just like themselves, children who have mental health problems and who struggle daily with the same issues, the same public perception.
But at kidsLINK they are just kids. With limited funds, however, kidsLINK can offer only one respite day about every three months, slightly more if the child has been diagnosed with autism because there is a different funding source.
Most of the respite program's $240,000 budget is raised from the Gourmet Trail, an annual restaurant tour run by volunteers that this year has already sold out.
While the respite care has helped many families, it's not a total solution, particularly given there is no provision to take a child for longer than a day, Coughlin explains.
"A lot of kids that have mental health issues, they can hold it together during the day then have a meltdown in the evening."
Blanchette had a slightly different view. For her, a respite program is the only time she's free to catch up on chores or just have a relaxing day knowing Thomas is well cared for and, equally importantly, having fun.
"The support from kidsLINK is fabulous," she said. The kids come away often feeling good about themselves, something that doesn't often happen in the outside world.
Her son has often been made to feel "like the bad kid" in school and, as early as age five, the stresses of his condition and how he was treated had started to show. He talked about his sadness, how he hated himself and wished he was dead.
Aside from the respite care, kidsLINK has provided a social worker who comes to their home working with the entire family to help Thomas cope.
"They give tips and strategies," she said. Thomas has been identified as gifted, thereby adding to his feeling of being different. At only age nine, he's already been to five different schools, shuffled around as a problem or when the school's resources changed.
Blanchette compares it to an adult changing jobs every few months, how confusing and unsettling that would be, even for someone who is emotionally stable.
"These kids that are different, yes, they are challenging, but why do we treat them like this?" she questioned. "There is so much you struggle with."
Blanchette left her job as a marketing executive four years ago because it was impossible to deal with Thomas' issues and maintain a career.
Recently she started teaching part time at Conestoga College, but admits she and her husband Mark still have a limited social life. It's simply one of the necessary sacrifices when you have a mentally ill child. She believes part of the issue with a lack of public understanding is that children with mental health issues often look perfectly healthy.
Parents struggle daily to change the stigma, to help people understand that behind those sparkling eyes of their children is a brain that functions very differently from most other children. And they want their children to realize it's OK to be different.
Blanchette concluded of her son, "all he wants to do is grow up and be normal."
Parents for Children's Mental Health: a support, advocacy and education network
Local contact: Laura Coughlin, 519-743-1422 e-mail: mparent.advocacy @hotmail.com.
INFO: Ran with "WHERE TO GET HELP" which has been appended to the end of this story
The Coughlin family, Shamari, 7 (left), Laura, Alan and Tracy, 13, at their Kitchener home. The Coughlins have six adopted children who have all had some mental health issues. 'There's a real void for families with children with mental health issues,' Laura says. ; Photo: RECORD STAFF / Tina Blanchette with Thomas, 9, and Danielle, 12, in their Waterloo home. Thomas has Tourette syndrome and emotional issues. Parents of children with mental illness say they get little empathy or community support. 'These kids get labelled, as if they're choosing to be different,' Blanchette says. ;
Google Alert – Autism Dogs Service
The National Service Dogs have their major fundraiser on Good Friday of the Easter Weekend in many areas of Ontario. Here is an article about service dogs from the York Region papers:
Fido to the rescue?
Feb 28, 2008 07:40 AM
$18,000 dog can help some autistic kids
By: Michael Power
In many ways, Alex Wong's life remains similar to that of other eight-year-olds.
The Markham resident likes reading, jokes and playing games on his computer.
But Alex's autism (called As-perger's Syndrome) can cause him to react to crowds, smells and loud noises by screaming, falling to the ground or running away without warning, said his mother, Leslie Simons-Wong.
Like many with the syndrome, he can get focused on a single idea or distraction.
He can become obsessed with routines, has been diagnosed with attention deficit hyperactivity disorder.
But an experience with a trained, six-month-old puppy named Jackson last autumn was able to calm and focus Alex like nothing before, she said.
The idea of getting a dog for Alex came to her after reading about service dogs online, Ms Simons-Wong said.
She also read about Wade Beattie, a Cambridge-based trainer, in an autism newsletter and contacted him. They met a few times last year and he was able to get Jackson for Alex as part of a training exercise.
After four days interacting with Jackson, Alex was willing walk in a park during rain with the dog, an activity he couldn't do until then.
He was even able to interact with people in the park who asked about the dog.
"It was so neat to see Alex initially jumping away, but in the end he gave him a big hug," she said.
Ms Simons-Wong hopes to get a dog for Alex within a year. But the cost ( which includes training for the animal, the parent and child, as well as other costs ) runs to $18,000.
That training takes about two years, with socializing the dog a key in the process, said Mr. Beattie. Similar to seeing-eye dogs, canines used with autistic children must get used to crowded places such as malls.
If a family provides a dog with potential to become a service dog Mr. Beattie charges $15,000 for his services.
He can also visit a family's house weekly and supervise as the family trains the dog. That costs $8,000, he said.
Autism service dogs have a 10-year history of use in Canada, said Mr. Beattie, who estimated about 100 autistic children across the country now use dogs.
The dogs are also trained to respond when a child becomes anxious, such as by placing a paw on his or her leg.
Some dogs can be trained to track children if they run away. That service, since it's not as commonly needed, costs about $2,000 extra, Mr. Beattie said.
The dogs can help children with social interactions and many children take their dogs to school.
Mr. Beattie also works with teachers to ensure they know how to handle the dogs. He speaks at assemblies, ensuring students know, for example, not to pet the dogs.
"Hopefully it will draw them out and help them to communicate more," said Mr. Beattie, who has been working with guide and service dogs for about 20 years.
One autistic child at a school in the York Region District School Board brings a dog to school, spokesperson Ross Virgo said.
The board is creating a policy to deal with dogs and autistic children, he said. The dog has been attending school with the child since last October.
Parents shouldn't feel they are doing a disservice to their autistic children by not getting them a service dog, said Margaret Whelan, executive director for the Geneva Centre for Autism in Toronto.
The centre provides information about service dogs to interested parents and she has heard anecdotally the animals can be helpful for some children, she said. But she is unaware of research showing the effectiveness of dogs.
"It's not for everyone. There are a lot of factors to take into account, and certainly a family's ability to integrate a dog is a big deal," Ms Whelan said.
Ms Simons-Wong has begun raising cash to help cover the costs of the animal.
She has appealed to service groups in the community that might be able to help her raise cash.
Google Alert – Autism vaccines
Feds admit vaccine
Critics: Ruling major concession after years of government denials
Posted: February 28, 2008
6:43 pm Eastern
© 2008 WorldNetDaily
The federal government continues to deny a link between vaccines and autism, but the U.S. Court of Federal Claims has ruled in favor of a child alleged to have regressed into autism as a result of vaccinations.
Several of the vaccinations included the controversial mercury-based preservative thimerosal, points out the National Autism Association, which sees the ruling as confirmation of the claims of many parents.
"This case echoes the stories of thousands of children across the country," said NAA President Wendy Fournier. "With almost 5,000 similar cases pending in vaccine court, we are confident that this is just the first of many that will confirm what we have believed for so long – vaccines can and do cause children to regress into autism."
Fournier called on the Centers for Disease Control "to acknowledge that the current vaccine schedule is not safe for every child and as with the administration of any medicine, individual risks and susceptibilities must be considered for each patient.
The government's unprecedented concession – filed Nov. 9 and sealed to protect the plaintiff's identity – was obtained through individuals unrelated to the case, said David Kirby, author of "Evidence of Harm: Mercury in Vaccines and The Autism Epidemic, A Medical Controversy."
The concession was made by U.S. Assistant Attorney General Peter Keisler and other Justice Department officials on behalf of the Department of Health and Human Services, the defendant in all vaccine court cases.
A CDC panel, meanwhile, voted unanimously Wednesday to recommend flu shots for all school-age children. The move would compel private insurers to cover the costs and require the CDC to make the vaccine available to anyone who can't afford it.
The NAA criticized the CDC decision, noting thimerosal is still found in flu shots recommended for children and pregnant women.
Thimerosal in vaccines is suspected of causing brain damage and weakening the immune system, making some children susceptible later to infection from measles, mumps and rubella shots.
Kirby, writing for the Huffington Post, reported the government's written concession said the child had a pre-existing mitochondrial disorder that was "aggravated" by her shots and ultimately resulted in a diagnosis of autism spectrum disorder, or ASD.
"This statement is good news for the girl and her family, who will now be compensated for the lifetime of care she will require," Kirby writes. "But its implications for the larger vaccine-autism debate, and for public health policy in general, are not as certain."
The government's concession, he says, seems to raise more questions than it answers.
The Department of Health and Human Services said its Division of Vaccine Injury Compensation, or DVIC, "has reviewed the scientific information concerning the allegation that vaccines cause autism and has found no credible evidence to support the claim. Accordingly, in every case under the Vaccine Act, DVIC has maintained the position that vaccines do not cause autism, and has never concluded in any case that autism was caused by vaccination."
Kirby said that for most affected families, the fine distinction between claiming that vaccines did not "cause" autism but instead aggravated a condition to "manifest" as autism is a fine distinction that is not so important.
While it's too early to tell, he said, "this concession could conceivably make it more difficult for some officials to continue insisting there is 'absolutely no link' between vaccines and autism."
It also puts the federal government's vaccine court defense strategy somewhat into jeopardy, he said.
"DOJ lawyers and witnesses have argued that autism is genetic, with no evidence to support an environmental component," he pointed out. "And, they insist, it's simply impossible to construct a chain of events linking immunizations to the disorder. Government officials may need to rethink their legal strategy, as well as their public relations campaigns, given their own slightly contradictory concession in this case."
The bottom line, he said, is that the public will demand to know what is going on inside the U.S. federal health establishment.
"The significance of this concession will unfortunately be fought over in the usual, vitriolic way – and I fully expect to be slammed for even raising these questions," Kirby writes. "Despite that, the language of this concession cannot be changed, or swept away."
The key words contained in the concession, he says, are "aggravated" and "manifested."
"Without the aggravation of the vaccines, it is uncertain that the manifestation would have occurred at all," Kirby argues.
"When a kid with peanut allergy eats a peanut and dies, we don't say 'his underlying metabolic condition was significantly aggravated to the extent of manifesting as an anaphylactic shock with features of death,'" he continues. "No, we say the peanut killed the poor boy. Remove the peanut from the equation, and he would still be with us today."
Whatever the government's further explanation, says Kirby, "they cannot change the fundamental facts of this extraordinary case: The United State government is compensating at least one child for vaccine injuries that resulted in a diagnosis of autism. And that is big news, no matter how you want to say it."
From a listmate
Treatment of autistic children shameful
Letters to the Editor
Mar 02, 2008 06:10 AM
Re: Autistic kids deserve better treatment, editorial, Feb. 21.
I applaud the author of this article.
Children with autism deserve the same education and medical treatment as any other child; with or without special needs.
How dare the government put stipulations on the needs and welfare of these young children, shame on them.
Children with autism and their families deal with stresses and burdens just as other children and families with other special needs, so why wouldn’t the government treat them the same?
Who are they to say one child is entitled to public education and treatment and the other is not?
I agree that helping children with autism now, when they are young, will better their lives and in turn, will better our society in the future. What the government is doing is totally unacceptable.
Again and again, they are failing our young children who represent our future. It is time for a change. Wake up, Ontario, and join Alberta and British Columbia in covering the costs for these autistic children.
Music therapy Conference
The Music Dept. at Laurier now has the final conference details in the
Heidi Ahonen-Eerikainen [mailto:firstname.lastname@example.org]
International Music Therapy Research Conference
Hello, Please find the enclosed brochure about our next summer's
international music therapy research conference. The final programme
will also include presentations around Autism and Music Therapy. It can be
seen at our website www.soundeffects.wlu.ca in the beginning of April.
Warm regards, Heidi Ahonen-Eerikainen
Dr. Heidi Ahonen-Eerikainen,
Associate Professor of Music Therapy,
Director of the Laurier Centre for Music
THE REBECCA CENTER
Revolutionizing Education & Treatment in Autism on Long Island:
The Developmental, Individual difference,
Gil Tippy, Psy.D. - Clinical Psychologist
Alex Klein- Floortime Coach
John Carpente, MA, MT-BC, NRMT, LCAT- Music Therapist
Pioneered by Drs. Stanley Greenspan and Serena Wieder, the DIR(r) Model
comprehensive, interdisciplinary approach that focuses on the emotional
development of children with ASDs. It takes into account the child's
feelings, relationships with caregivers, developmental capacities and
individual differences (child's ability to process and respond to
information). It focuses on the child's skills in all developmental
including social-emotional functioning, communication, thinking and
learning, motor skills, body awareness, and attention.
This presentation will focus on introducing participants to the
foundation of DIR(r)/Floortime. Clinical video excerpts will be used to
illustrate DIR principles, strategies and techniques, including:
application, assessment, and parent & Teacher training.
* Who should attend? Parents, Teachers, Occupational & Physical
Therapists, Speech Therapists, Psychologists, Creative Arts Therapists
Program & School Administrators.
* When? Thursday, April 24, 2008 @ 7 pm - 9pm
* Where? Molloy College, 1000 Hempstead Ave., Rockville Centre, N.Y
11571, Reception Room in Kellenberg
* Cost? Rebecca Center members (Parents) $10 pp. Non-members $25 pp.
Molloy Students and Faculty
free admission with ID
* Contact: Email: email@example.com Web:
seating is limited. early registration is encouraged
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
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Please make checks payable to The Rebecca Center for Music Therapy
C/o Molloy College
1000 Hempstead Ave., Rockville Centre, N.Y. 11571
Phone:__________________________ How many will attend?____________
Member $10 pp. _____ Non-member $25 pp. _______Molloy Student/Faculty
John A. Carpente, MA, MT-BC, NRMT, LCAT
Rebecca Center for Music Therapy, Rockville Centre, N.Y.
516-678-5000 ext. 6643
Faculty & Projects Coordinator
Music & Music Therapy Dept. Molloy College, Rockville Centre, N.Y.
516-678-5000 ext. 6192
Coordinator - Center for Music and Child Development
Rebecca School, New York, N.Y.
June (12) 13-15, 2008
2nd International Music Therapy Research Conference
Exploring the relationship between
music therapy & music education
More info www.soundeffects.wlu.ca
Sponsored and chaired by
Wilfrid Laurier University
Laurier Centre for Music Therapy Research (LCMTR)
Wilfrid Laurier University
75 University Avenue, West, John Aird Building
Waterloo, Ontario, Canada
Researchers in music therapy and music education, teachers and music therapists
This conference will explore the relationship between music therapy and music education from joint collaborative research perspectives. It was E.T Gaston (1968) who first stated that the good music educator follows many of the principles and processes of music therapy and the good music therapist follows many of the practices of music education. This conference will explore the relationship between music therapy and music education from joint collaborative research perspectives. Aspects of education can occur in the music therapy process and music educators should be aware of the interpersonal and therapeutic processes that occur in education. Therapy and education lie on a continuum that would suggest each discipline could be affected by each others theoretical and philosophical histories. There has been little evidence to support the notion that formal research initiatives could benefit each profession. The questions become:
• How does each discipline inform the other?
• What are the shared research questions?
• What are the implications of one discipline's research on the other?
• What are the contradictions, and how should they be resolved?
Through key-note presentations, concurrent papers and open discussions similarities and differences will be explored. Keynotes and other presentations have a research focus with practical implications. One hour presentations followed by one hour discussions. Half-day workshops have practical focus. Future research possibilities will provide a forum for more formal initiatives that could result in future projects for both disciplines.
Amelia Oldfield, Ph.D., Anglia Ruskin University, United Kingdom
Keynote: Interactive Music Therapy: Links with Music Education
Dr. Amelia Oldfield has over 27 years' experience as a music therapist. She currently works at the Croft Unit for Child and Family Psychiatry and at the Child Development Centre, Addenbrookes, Cambridge, UK. She was the joint initiator of the two year MA Music Therapy course at Anglia Ruskin University, where she has been a part-time lecturer for the past 13 years. She has completed four research investigations and a PhD. She has written three books as well as a wide range of articles and chapters on various aspects of music therapy. She has also produced six music therapy training videos. She has run workshops and given papers all over Europe and in the USA. She is married, has four children and plays the clarinet in local chamber music groups in Cambridge.
Kimmo Lehtonen, Ph.D. University of Turku, Finland
Keynote: Hard Rock - Therapy with Young Rebels
Dr. Lehtonen is working as a Professor of Education in the University of Turku, Finland. Lehtonen started as a classical guitar player but changed to rock & roll and blues, which he uses exclusively for therapeutic purposes. He is one of the pioneers in Finnish Music Therapy. His doctoral thesis, Music as a Promoter of Psychic Work, was the first doctoral thesis about music therapy in the Nordic countries. Doctor Lehtonen also teaches permanently in the Sibelius – Academy and in the University of Jyväskylä as well as in Polytechnics, which have music therapy training programs. Lehtonen is a widely known Finnish music therapist who has published over 200 scientific articles and monographies in seven languages. Lehtonen is currently interested in music education as therapy and writing a book about meaningful musical experiences during a human lifespan. Lehtonen is still working clinically one day per week in the Family Rehabilitation Center and Special School of Turku, which specializes in the treatment of teenagers with multiple antisocial problems. Dr. Lehtonen has for over 25 years used plenty of improvised rock & roll music in his music therapy, which gives a good opportunity to express even ultimate negative feelings through aggressive music. Music works as catharsis for inner tensions and is able to bring them to daylight as musical expression. In his lectures Dr. Lehtonen uses a lot of musical examples of his therapeutic work with hard rock and rap-music.
Lee R. Bartel, PhD., University of Toronto, Canada
Keynote: Sound Health: How can we meet the challenges?
Dr. Bartel is a Professor of Music at the University of Toronto and Director of the Canadian Music Education Research Centre. He teaches research methods, music and the brain, evaluation, social psychology, choral music, and alternative methods in secondary music, but he also has expertise in vocal technique, violin & viola techniques, and class guitar. With extensive experience as a music teacher at the elementary and high school levels and as a performing choral conductor, singer, violinist, and guitarist, he began teaching in 1969 at the grade 7 – 12 level, and college and university levels since 1975. With broad interest in music education he is the author or senior editor of 16 books and technical research reports, author of chapters in 11 books, 64 refereed academic papers and publications, and well over a 100 other professional publications and presentations. In the mid 1980’s he began research on people’s response to music with special focus on emotional and intellectual response and social psychological connections. His involvement in research in music and medicine began in the early 90’s at Bloorview Kid’s Rehab with rehabilitation of attention deficits resulting from head injuries. He also conducted stress studies with the Centre for Health Promotion at U of T and has supervised doctoral and post-doctoral research in music therapy at Lyndhurst Hospital and Baycrest Hospital. Dr. Bartel served on the Accreditation Review Board for the Canadian Association of Music Therapy. He is currently involved in several studies examining EEG response to music at the S.O.N.I.C. Brain Lab at the U of T and is actively involved at Sunnybrook Health Sciences Centre in Toronto in perceptual ability diagnosis and music response research with cochlear implant recipients. Drawing on his extensive research background, Dr. Bartel is the scientific designer of the internationally best-selling Music for Your Health series of recordings on the Solitudes label as well as the SonicAid series with Somerset Entertainment. Among the 20 therapy recordings Dr. Bartel has designed a number of gold and platinum albums and Juno Award nominations. He is also the music consultant on some 50 Fisher Price recordings for children.
Thursday, June 12, 2008
The final programme will be posted
on www.soundeffects.wlu.ca in April
10:00– 17:00 Pre-Conference Workshop
by Dr. Amelia Oldfield
Topic: Interactive Music Therapy, an Exploration of the Characteristics of this Approach.
(Extra fee. See registration).
Friday, June 13, 2008
8:00-9:00 Coffee & Registration. Wilfrid Laurier University, Waterloo, John Aird Building, 75 University Avenue West
9:00-10:00 Recital Hall, Foyer: Opening Ceremony
Piano extemporizations by Dr. Colin Andrew Lee and Terry Kroetsch
Dr. Charles Morrison, Dean, Faculty of Music
Dr. Sue Horton, Vice-President: Academic, WLU
Dr. Heidi Ahonen-Eerikainen, director, LCMTR, WLU
Dr. Lee Willingham, Department of Music Education, WLU
Kerry L. Byers, UWO
10:15-11:15 Keynote by Dr. Amelia Oldfield (UK): Interactive Music Therapy; Links with Music Education
11:15-12:00 Discussion Chair: Dr. Colin Andrew Lee
Lunch (45 minutes @ WLU Dining Hall recommended!
12:45-18:30 Concurrent Sessions
6:30 pm Reception - hosted by Faculty of Music, WLU
Music: Dan Lichti
Saturday, June 14, 2008
8:00-9:00 Registration & Coffee : Recital Hall, Foyer
9:00-10:00 Keynote by Dr. Lee R. Bartel (Canada): Sound Health: How can we meet the challenges?
10:00-10:45 Discussion. Chair: Dr. Lee Willingham
Lunch (1.5 hours)
12:15-18:15 Concurrent Sessions
Sunday, June 15, 2008
8:00-9:00 Registration & Coffee: Recital Hall Foyer
9:00-10:00 Keynote by Dr. Kimmo Lehtonen (Finland): Hard Rock -therapy with Young Rebels
10:00-11:00 Discussion Chair: Dr. Heidi Ahonen-Eerikainen
Coffee (15 min)
11:15-18:00 Concurrent Sessions
18:00-18:30 Recital Hall Foyer: Closing Ceremony
Music by Andrea Alexander & Jason Lamont
2008 - Making Connections:
Exploring the Relationship Between Music Therapy and Music Education
Laurier Centre for Music Therapy Research (LCMTR)
June 13-15, 2008
City_______________ State/Province____________ ZIP/Postal Code ______________
Phone _____________________(home) Phone ___________________________(work)
Conference fee includes coffee, refreshments + reception on Friday, June 13th!
Yes, Register me for the 2008 Conference:
____ $300 Conference fee (Received prior to May 1st, 2008)
____ $ 80 Pre-Conference workshop (Received prior to May 1st, 2008)
____ $350 Conference fee (Received after May 2nd, 2008)
____ $100 Pre-Conference workshop (Received after May 2nd, 2008)
____ $200 Full-Time Students’ Conference Fee (Received prior to May 1st)
____ $ 50 Full-Time Students’ Pre-Conf. Workshop (Received prior to May 1st)
____ $230 Full-time Students’ Conference Fee (Received after May 2nd)
____ $ 70 Full-time Students’ Pre-Conf. Workshop (Received after May 2nd)
____ $125 Daily Rate Day: June 13th__, 14th__, 15th ___
____ $250 Two Daily Rates Days: June 13th__, 14th__, 15th ___
____ Free Reception on Friday, June 13th
I will enclose the money order (Canadian funds payable to WLU/LCMTR)
Please, charge my Visa _____ or Mastercard _____
Amount: $ ___________
Account# Expiration Date: ________
Please, fax this form to Debra Martz Melanson, Music Therapy Department
Wilfrid Laurier University, Music Faculty, LCMTR, Debra Martz Melanson
75 University Avenue, West, Waterloo, ON Canada N2L 3C5
REFUND +CANCELLATION POLICY
Activities are planned in advance based on the number of registrants. Full refunds cannot be made. 80% of fees will be refunded if the request is postmarked no later than May 12, 2008. 50% of fees will be refunded if the request is postmarked between May 13- May 30, 2008. No refunds will be made after May 30, 2008, so please plan ahead. Refunds are processed 45 days after the conclusion of the Conference.
The conference will be held at
Wilfrid Laurier University
75 University Avenue, West
John Aird Building, Maureen Forrester Recital Hall, First Floor
Waterloo, Ontario, Canada
Conference attendees may stay at the following hotels, with varying prices. It is advised to book your room as soon as possible. All fees are in Canadian funds.
Best Western, 50 Benjamin Road, East, Waterloo, 1-800-972-5371, www.stjacobscountryinn.com (Price: $129.00+/night)
Waterloo Inn, 475 King Street, North, Waterloo, 1-800-361-4708, www.waterlooinn.com (Price: $132.00+/ night)
Hotel Laurier, WLU, 75 University Avenue, West, Waterloo,
1-519-884-1970, x2771, www.wlu.ca (Price $40.00+/night or apartments - 4 people $120+/night)
Please ask for blocked bookings for International Music Therapy Research Conference (LCMTR)
Destination Inn, 547 King Street, North, Waterloo, ON, 1-866-222-9175, www.destinationinn.com (Price: $109.00+/night) - Wilfrid Laurier University rate and state conference name
For air travel to Toronto Pearson International Airport, Ontario, Canada, contact your preferred travel professional.
Driving directions from Airport
From Toronto Pearson-International airport: Exit airport to expressway 401 West, then turn onto Highway #8 to Kitchener-Waterloo. Waterloo is about 90 kilometres from the Airport.
Transportation to and from Waterloo and the Toronto Pearson International Airport is available on www.airwaystransit.com or call 1-519-886-2121. You need your flight numbers when booking the transportation. The costs are about $80 per person one-way. There will be group discounts. Service is available 24-hours a day. You may pay with cash or any major credit card.
Other bus transportation from Toronto (Dundas Greyhound)
(Metro Coach Terminal located at 610 Bay St. at Dundas W. minutes from the St. Patrick Subway station.) - Kitchener (Downtown, 15 Charles St. W)
PRE-and POST CONFERENCE TOURIST ATTRACTIONS
Tip for Thursday, June 12th :
MENNONITE COUNTRY & MENNONITE FARMERS MARKET
(Open Thursdays & Saturdays 7:00 a.m. to 3:30 pm)
St. Jacobs is a world a part from the city. Distinctive for its roots in Mennonite culture the friendly Village of St. Jacobs offers a wide variety of boutiques, shops, and antiques. Two minutes south of the Village, explore the abundance of produce and crafts at Canada's largest farmers’ market and attend Mennonite Farm Horse Drawn Tour! Enjoy local delicacies including sausage, apple fritters, and pure maple syrup sold by Mennonite farmers who travel to market by horse and buggy. At anytime of year you may have a chance to see a lively performance by visiting buskers or other special events.
How to get there?
1) By steam train…
2) By taxi from your hotel
3) By car: At Weber Street North and Farmers' Market Road, North of Waterloo (4 km. south of Village of St. Jacobs)
4) By local transit bus: (Every Thursday and Saturday year round): GRAND RIVER TRANSIT Route 21 from Conestoga Mall to: St. Jacobs Outlet Mall-St. Jacobs Farmers' Market-Village of St. Jacobs
Book hotels in Toronto: http:www.topbooker.org/location/Toronto.php or
If you want to stay in Toronto before the conference you can travel to Kitchener by Greyhound bus. It leaves from Toronto, Dundas Greyhound, Metro Coach Terminal located at 610 Bay St. at Dundas W., minutes from the St. Patrick Subway station. Buy ticket to Kitchener (Downtown, 15 Charles St. West) and take a cab to your hotel. Kitchener and Waterloo are twin cities located next to each others.
You can go to Niagara Falls from Toronto or you can ask if your Kitchener-Waterloo hotel is organizing trips to Niagara Falls. Greyhound buses also travel there from Toronto and Kitchener.
AFRICAN LION SAFARI:
African Lion Safari is located in Cambridge, next city from Kitchener-Waterloo. You can, for example, go there by taxi from your hotel.
For conference information and updates send an email to firstname.lastname@example.org or email@example.com, or call LCMTR 1-519-884-0710, ext. 2658, Debra Martz Melanson
Please note our new e-mail contact address which we have opened for our chapter this month: firstname.lastname@example.org. Our voice mail box continues to be (705) 222-5000 ext. 2685. Coming soon: news about our upcoming workshops for 2008 in May and September, our new monthly walking & networking group starting in April 2008, info re: our new "Monday power meetings", and more events and initiatives sponsored by the Sudbury & District Chapter of Autism Ontario!
Heather, Rebecca, Chanda and Liz
Chapter Leadership Council
Autism Ontario-Sudbury & District
Together for Autism is pleased to announce a new joint initiative with Holistic World Expo.
Recognizing the need to increase autism awareness while helping us raise funds for autism research, Holistic World Expo contacted Together for Autism with the offer for us to become their charity of choice.
Together for Autism will have a booth and be presenting a workshop at the Expo. Click here for the presentation summary.
Please click here to order tickets to the Expo.
Disclaimer: Together for Autism, a program of Autism Ontario, does not endorse any specific therapy, product, treatment, strategy, opinions, service, or individual which may be represented at the Holistic World Expo. We do, however, endorse your right to information and to make your own informed decisions.
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