Alliance for families with autism
July 3rd 2008 – July 13th 2008
to read archived mail
AFA is experiencing VACATION TIME at random times during the summer. – HOORAY!!!
Please be patient with our mail
From Nancy’s List
Run the Dream newsletter is attached to this mailing. Jonathan has entered Ontario and spent the July 1st holiday in Ottawa. Many photos from his events around the Ottawa area are in this newsletter. Keep checking the newsletters and website to ensure you meet up with Jonathan as he makes his way through your home town.
For those that work or live in the GTA, Jonathan will be at Toronto City Hall at noon on July 22 to ``Welcome Jonathan to Toronto``. The key participants are still being defined but we would like to get people out to support Jonathan - particularly those who work in the downtown core. Please mark your calendars to ensure you spend lunch with Jonathan on July 22nd if you are in the downtown area!!
For those that enjoy taking their children to Wonderland, I have pulled this off another lists mailing:
Discounted Wonderland Tickets
We are thrilled to announce that our partnership with RBC Royal Bank and its Canada ’s Wonderland ticket promotion has been extended!
RBC Royal Bank has negotiated a discounted price for "ANY DAY" tickets to Canada 's Wonderland, with $1 per ticket sold benefiting the Yellow Bus Foundation. These tickets will be on sale until Park closing November 1st.
To get your tickets: Visit www.canadaswonderland.com, select Tickets, then Corporate Partners and enter Company ID: RBC2008.
Please help spread the word by sharing with your network of friends, family and colleagues!
The Yellow Bus Foundation
A listmate shares this info, and I have included their attachment to this e-mail. Not only families with concerns regarding inclusion in education may be interested in this seminar, but also the Educators on this mailing list too:
We at ARCH Disability Law Centre are writing to let you know that CASHRA,
the Canadian Association of Statutory Human Rights Agencies, is holding its
2008 national forum on human rights and inclusive education. The forum
promises to be a spirited exchange of ideas on how human rights law and
policy can assist in advancing the inclusion of students with disabilities
in educational environments.
For more information and to register for the forum please see the attached
flyer or visit: www.inclusiveeducation.ca
The flyer and registration forms are available in alternate formats at: www.inclusiveeducation.ca
ARCH is able to financially support a limited number of students with the
registration fee to attend the conference. Requests for financial support
will be granted on a first come, first serve basis. For more information,
please contact ARCH at:
Tel.: (416) 482-8255 or 1-866-482-2724
TTY: (416) 482-1254 or 1-866-482-2728
425 Bloor Street East, Suite 110
Toronto, ON M4W 3R5
How a bad situation can turn into an awareness and advocacy opportunity. Kudos to this family and Smitty's management for turning this around to be a postiive outcome for the autism community:
Mom vows action after family of autistic girl kicked out of restaurant
The Edmonton Journal
Sunday, July 06, 2008
The mother of an autistic girl is calling for "some sort of repercussions" after her family was kicked out of a local restaurant Saturday.
Sarah Seymour said her family often eats at the west end Smitty's Family Restaurant when they come to Edmonton from Wainwright for her daughter's autism treatment a few times a year.
Seymour said her five-year-old daughter, Eowyn, became upset when the meal she wanted to order wasn't available. Seymour and her husband were calming their daughter down when the manager asked the family to leave.
"We tried to explain to the manager that she has autism and would be calm very shortly," said Seymour. "She can't help it.
"This is what happens; it's part of the disorder."
Seymour said the manager indicated that if Eowyn's behaviour was part of her disorder, the family should not take her out in public.
"I will be contacting higher up management," said Seymour. "If I don't work to make the world more tolerant for (Eowyn) who will?"
The restaurant declined to comment on the incident.
Autism effects one in every 150 to 160 people, according to Health Canada.
Autism Spectrum Disorder symptoms often include "repetitive behaviour and difficulties with social interaction, communication and learning."
© The Edmonton Journal 2008
Thursday » July 10 » 2008
Smitty's owner to help raise autism awareness
The Edmonton Journal
Thursday, July 10, 2008
The owner of a local restaurant accused of discriminating against an autitisic child says the incident was a misunderstanding, but his company is eager to make amends anyway.
Sarah Seymour said she and her family were at a west-end Smitty's Family Restaurant when her five-year-old daughter, who is autistic, became disruptive.
Seymour said the restaurant manager told her that she shouldn't bring her daughter out with them if she was known to behave erratically.
Rob Sroka, whose family owns 11 Smitty's locations in northern Alberta, said he was upset when he heard about the incident. Sroka spoke to Seymour, restaurant staff and other patrons, and said he's confident that it was a miscommunication.
"The manager in question has only been in Canada for about a year and half," Sroka said. "So I think this might have been more of a language issue than anything else."
Sroka said he apologized to Seymour and is hoping to help with autism awareness.
He arranged a special meeting of all his restaurant managers.
Seymour supplied a training video that Sroka will use to educate his staff about autism.
Sroka said he's looking into getting involved with an upcoming Run/Walk for Autism in Edmonton.
"We want to be able to turn this negative thing into a positive situation," he said.
© The Edmonton Journal 2008
An awareness piece from the Ottawa Citizen:
Autistic poet enjoys having a way with words
Paula McCooey, Ottawa Citizen
Published: Wednesday, July 09, 2008
When Nicholas Sicard's mother urged her autistic son to enter a provincial poetry contest, she knew his natural artistic talents would shine through.
The contest, organized by the non-profit group Ideal Way, gives people with intellectual disabilities the opportunity to showcase their creative sides. It was an attractive challenge for 14-year-old Nicholas, whose winning poem was inspired by his goal to make movies.
Nicholas's entry won second place, and was among those chosen from the hundreds received from across Ontario to be published in a book by Pearson Canada in support of people with Down syndrome, autism and other related disabilities.
Winners of the contest were chosen on June 30 by a panel of judges that included writers and poets, and was chaired by David Davidar, president and publisher of Penguin Group (Canada).
Nicholas's mother and father, Pina and John, who have been encouraging Nicholas to pursue his dream of creating movie scripts and producing films, thought the contest would help him utilize his writing skills. Mrs. Sicard says her son is currently at work writing a script from his Kanata home based on a cartoon character he created called Moosinla (pronounced Moosinella).
"I said, 'You know, Nick, you've got to take chances, you never know'," Mrs. Sicard said. "And he said, 'Do you think I'm going to win?' And I said, 'Well, I don't know.' In my heart, I thought, you never know. So I was absolutely elated when he was (chosen)."
Mrs. Sicard said Nicholas, who has a "very active imagination," plans to shoot his film, with the help of friends and family, this summer.
"It's wonderful that he's writing, because for the longest time I was trying to encourage him to keep a journal. The more they write (people with autism), the better they get at it, because communication is really affected by the autism."
Nicholas has since received an award package that includes, aptly, eight movie passes.
He also received $62.05 in spending money. This number is significant because it represents the life savings donated by founder Robert Pio Hajjar, who was born with Down syndrome. (IDEAL in Ideal Way is an acronym for Included, Deserving, Equal, Appreciated and Loved.)
"I was happy," Nicholas said of his second-place finish. "I enjoy writing."
He said that this summer, when he's not working on his script or on computer animation, he'll use one of his free cinema passes to see the film Kung Fu Panda.
The first-prize winner was Danielle Morris, of Woodstock, Ont.
Ideal Way's research showed it was the first contest of its kind geared toward people with intellectual disabilities.
Executive director Addie Daabous says the contest was such a success, the group will be holding two contests next year: one for visual arts and the other for poetry.
Ms. Daabous said Nicholas's poem, You Can Take Away, was noticed by the judges because it "made everyone laugh."
She said $155,000 worth of merchandise donated to the organization to date has been used to help those living on their own in group homes and long-term care facilities.
"They live on a disability cheque and it's not much money a month," says Ms. Daabous.
You Can Take Away
By Nicholas Sicard
You can take away my old movies
You can take away my VCR
But please don't take away
My remote control car!
I can do without honey
I can do without bees
But I can't do without my
I can live without shrimp
I can live without fish
But I can't live without my
This article was from the Associated Press in the US. Although a US article, I felt the content was significant to share..... and explains why ABA/IBI is so very effective for many of our kids. This information could be very useful in arguing the effectiveness of ABA/IBI as opposed to other interventions for many of our kids, and be useful to determine for our kids that do respond to therapy to justify it's continuance beyond "Benchmarks" that are being developed.
Genes from Middle East families yield autism clues
By LAURAN NEERGAARD – 7 hours ago
WASHINGTON (AP) — Harvard researchers have discovered half a dozen new genes involved in autism that suggest the disorder strikes in a brain that can't properly form new connections.
The findings also may help explain why intense education programs do help some autistic children — because certain genes that respond to experience weren't missing, they were just stuck in the "off" position.
"The circuits are there but you have to give it an extra push," said Dr. Gary Goldstein of the Kennedy Krieger Institute in Baltimore, which wasn't involved in the gene hunt but is well-known for its autism behavioral therapy.
The genetics suggest that "what we're doing makes sense when we work with these little kids — and work and work and work — and suddenly get through," he said.
But the study's bigger message is that autism is too strikingly individual to envision an easy gene test for it. Instead, patients are turning out to have a wide variety, almost a custom set, of gene defects.
"Almost every kid with autism has their own particular cause of it," said Dr. Christopher Walsh, chief of genetics at Children's Hospital Boston, who led the research published in Friday's edition of the journal Science.
Autism spectrum disorders include a range of poorly understood brain conditions, from the mild Asperger's syndrome to more severe autism characterized by poor social interaction, impaired communication and repetitious behaviors.
It's clear that genes play a big role in autism, from studies of twins and families with multiple affected children. But so far, the genetic cause is known for only about 15 percent of autism cases, Walsh said.
So Walsh's team took a new tack. They turned to the Middle East, a part of the world with large families and a tendency for cousins to marry, characteristics that increase the odds of finding rare genes. They recruited 88 families with cousin marriages and a high incidence of autism, from Jordan, Saudi Arabia, Kuwait, Oman, Pakistan, Qatar, Turkey and the United Arab Emirates. They compared the DNA of family members to search for what are called recessive mutations — where mom and dad can be healthy carriers of a gene defect but a child who inherits that defect from both parents gets sick.
In some of the families, they found large chunks of missing DNA regions that followed that recessive rule. The missing regions varied among families, but they affected at least six genes that play a role in autism.
Here's why this matters: All the genes seem to be part of a network involved in a basic foundation of learning — how neurons respond to new experiences by forming connections between each other, called synapses.
In the first year or two of life — when autism symptoms appear — synapses rapidly form and mature, and unnecessary ones are "pruned" back. In other words, a baby's brain is literally being shaped by its first experiences so that it is structurally able to perform learning and other functions of later life.
"This paper points to problems specifically in the way that experience sculpts the developing brain," explained Dr. Thomas Insel, director of the National Institute of Mental Health, which helped fund the work.
Some earlier research had pointed to the same underlying problem, so these newly found genes "join a growing list to suggest that autism is a synaptic disorder," he said.
If that sounds discouraging, here's the good news: The missing DNA didn't always translate into missing genes. Instead what usually was missing were the on/off switches for these autism-related genes. Essentially, some genes were asleep instead of doing their synapse work.
"I find that hopeful" because "there are ways that are being discovered to activate genes," Walsh said. "This might be an unanticipated way of developing therapies in the long term for autism: Identifying these kids where all the right genes are present, just not turned on in the right way."
At Kennedy Krieger, Goldstein thinks the work may provide a gene-level explanation for why some children already are helped by intense therapy.
"We have trouble getting through to these children, but with repeated stimulation we can do it," he said. "These are circuits that have an ability not so much to recover but to work around the problem."
And to further on this topic, this article is from the Canadian Newswire, regarding a US study. Tuesday, July 08, 2008
Fringe autism treatment could get federal study in the United States
CHICAGO _ Pressured by desperate parents, government researchers are pushing to test an unproven treatment on autistic children, a move some scientists see as an unethical experiment in voodoo medicine.
The treatment removes heavy metals from the body and is based on the fringe theory that mercury in vaccines triggers autism _ a theory never proved and rejected by mainstream science. Mercury hasn't been in childhood vaccines since 2001.
But many parents of autistic children are believers, and the head of the National Institute of Mental Health supports testing it on children provided the tests are safe.
''So many moms have said, 'It's saved my kids,''' institute director Dr. Thomas Insel said.
For now, the proposed study, not widely known outside the community of autism research and advocacy groups, has been put on hold because of safety concerns, Insel told The Associated Press.
The process, called chelation, is used to treat lead poisoning. Studies of adults have shown it to be ineffective unless there are high levels of metals in the blood. Any study in children would have to exclude those with high levels of lead or mercury, which would require treatment and preclude using a placebo.
One of the drugs used for chelation, DMSA, can cause side effects including rashes and low white blood cell count. And there is evidence chelation may redistribute metals in the body, perhaps even into the central nervous system.
''I don't really know why we have to do this in helpless children,'' said Ellen Silbergeld of Johns Hopkins University's Bloomberg School of Public Health, who was invited to comment on the study to a review board of the national institute.
Despite lawsuits and at least one child's death, several thousand autistic children are already believed to be using chelation (pronounced kee-LAY'-shun), their parents not content to wait for a study.
Among those parents is Christina Blakey of suburban Chicago, who uses chelation and a variety of other alternative therapies, including sessions in a hyperbaric chamber, on her eight-year-old son, Charlie.
Before he started chelation at age five, Charlie suffered tantrums. When she took him to school, she had to peel him off her body and walk away. But three weeks after he began chelation, his behaviour changed, she said.
''He lined up with his friends at school. He looked at me and waved and gave me a thumbs-up sign and walked into school,'' Blakey said. ''All the moms who had been watching burst into tears. All of us did.''
There is no way to prove whether chelation made a difference or whether Charlie simply adjusted to the school routine.
Autism is a spectrum of disorders that hamper a person's ability to communicate and interact with others. Most doctors believe there is no cure.
Conventional treatments are limited to behavioural therapy and a few medications, such as the schizophrenia drug Risperdal, approved to treat irritability.
Frustrated parents use more than 300 alternative treatments, most with little or no scientific evidence backing them up, according to the Interactive Autism Network at the Kennedy Krieger Institute in Baltimore, Md.
''With a lot of mothers, if they hear about a treatment, they feel like they need to try it,'' said project director Dr. Paul Law. ''Anything that has a chance of benefiting their child, they're willing to give it a shot.''
More than two per cent of the children tracked by the project use chelation. If that figure holds for the general population, it would mean more than 3,000 autistic children are on the treatment at any time in the United States.
Chelation drugs can be taken in pill form, by rectal suppository and intravenously.
Dr. Susan Swedo, who heads the federal institute's in-house autism research and wants to study chelation, gained notoriety by theorizing that strep throat had caused some cases of obsessive compulsive disorder. The theory was never proved.
She proposed recruiting 120 autistic children ages four to 10 and giving half DMSA and the other half a dummy pill. The 12-week test would measure before-and-after blood mercury levels and autism symptoms.
The study outline says that failing to find a difference between the two groups would counteract ''anecdotal reports and widespread belief'' that chelation works.
But the study was put on hold for safety concerns after an animal study, published last year, linked DMSA to lasting brain problems in rats. It remains under review, Insel told the AP.
Insel said he has come to believe after listening to parents that traditional scientific research, building incrementally on animal studies and published papers, wasn't answering questions fast enough.
''This is an urgent set of questions,'' Insel said. ''Let's make innovation the centrepiece of this effort as we study autism, its causes and treatments, and think of what we may be missing.''
Last year, the National Institutes of Health spent less than five per cent of its US$127 million autism research budget on alternative therapies, Insel said. He said he is hopeful the chelation study will be approved.
Others say it would be unethical, even if it proves chelation doesn't work.
Federal research agencies must ''bring reason to science'' without ''catering to a public misperception,'' said Dr. Paul Offit, chief of infectious diseases at the Children's Hospital of Philadelphia and author of an upcoming book on autism research. ''Science has been trumped by politics in some ways.''
Offit is concerned vaccination rates may fall to dangerous levels because some parents believe they cause autism.
Dr. Martin Myers, former director of the federal National Vaccine Program Office, said he believes giving chelation to autistic children is unethical _ but says the government can justify the study because so many parents are using chelation without scientific evidence.
''It's incumbent on the scientific community to evaluate it,'' he said.
Actress Jenny McCarthy, whose bestseller ''Louder Than Words'' details her search for treatments for her autistic son, Evan, told thousands of parents at a recent autism conference outside Chicago that she plans to try chelation on him this summer.
''A lot of people are scared to chelate ... but it has triggered many recoveries,'' she said.
But those claims are only anecdotal, and there are serious risks.
Of the several drugs used in chelation, the only one recommended for intravenous use in children is edetate calcium disodium. Mixups with another drug with a similar name, edetate disodium, have led to three deaths, including one autistic child.
A five-year-old autistic boy went into cardiac arrest and died after he was given IV chelation therapy in 2005. A Pennsylvania doctor is being sued by the boy's parents for allegedly giving the wrong drug and using a risky technique.
No deaths have been associated with DMSA, which can cause rashes, low white blood cell count and vomiting. It is also sold as a dietary supplement, which is how some parents of autistic children get it.
A Food and Drug Administration spokeswoman said the agency is ''is looking into how these products are marketed.''
On the Net:
National Institute of Mental Health: http://www.nimh.nih.gov/
This from the York Region papers about the Children's Treatment Centre of York Region and Simcoe County:
Jul 08, 2008 12:16 PM
Centre offers therapy closer to home
By: Simone Joseph, Staff Writer
Norma, a stay-at-home mom, has more free time and less stress these days, thanks to the opening of a local facility providing services for her developmentally disabled son.
The Markham mom and her son Giancarlo, 11, have been using the centre since it opened about six months ago. The furnishings and equipment were completed recently.
The Childrenâ€™s Treatment Network of Simcoe York and partner York Support Services Network opened the new facility in Markham to serve special needs children, youth and adults.
Before the facility opened, travelling to all the different services Giancarlo required was time-consuming, Norma said.
â€œThere wasnâ€™t anything in the area. I had to travel to Toronto 45 minutes in traffic,â€ she said, adding a whole day could be spent travelling to and from an appointment.
Giancarlo has cerebral palsy. He has received both physiotherapy and occupational therapy at the Markham centre, which caters to special needs children, youth and adults.
â€œIt has meant he has more time to unwind and enjoy certain activities,â€ Norma said. â€œHe is more relaxed because he is not sitting in traffic. He can actually enjoy some of his childhood.â€
The new space is part of York Support Services Networkâ€™s plan to expand special needs services and bring them closer to home. The network aims to reduce the stress and strain on families by co-ordinating a plan of care so parents donâ€™t have to go to multiple agencies. The facility gives residents access to integrated rehabilitation and developmental services, equipment and professionals in a single location, close to home.
The new Markham facility includes:
â€¢ A fully equipped therapy gym and observation room;
â€¢ Four treatment/activity rooms for occupational and speech/language therapy;
â€¢ An education and training room;
â€¢ Consultation/meeting rooms and office space for therapists and staff.
The Ontario Trillium Foundation approved a $100,000 grant in December for furnishings and equipment for the Markham space.
Services are available to children and youth with a wide range of disabilities and complex conditions, including: spina bifida, autism, brain injury and other long-term medical conditions.
Childrenâ€™s Treatment Network of Simcoe York is a not-for-profit service delivery model for children with multiple disabilities and their families. It links more than 40 healthcare, recreation, education and community agencies to provide a single point of contact and a single plan of care for children from birth to age 19 who have special physical, developmental and communication needs.
York Support Services Network is a community-based non-profit agency that offers a range of services throughout York Region to support people with a developmental disability and/or a serious mental illness.
As part of the publicly funded system under the ministry of children and youth services, the networkâ€™s services are free.
The Markham facility is one of 10 such facilities planned for York Region and Simcoe County. The other open centres are in Barrie, Richmond Hill, Alliston, Midland, Georgina, Vaughan and Newmarket. By the end of 2008, two more facilities will be open in Orillia and Collingwood.
If you are the parent or caregiver of a child with multiple disabilities and would like to learn more about the networkâ€™s single plan of care, phone the Childrenâ€™s Treatment Network toll free at 1-866-377-0286 or visit ctn-simcoeyork.ca
A very nice awareness article from the ABA IT's point of view. Articles like this from our professionals will help encourage other quality people to join up on the field. This was from the Vancouver Sun:
July 7, 2008
By HOSEA CHEUNG, 24 HOURS
If there's one job that requires patience, dedication and tremendous energy, Selina Lim definitely has it.
The applied behaviour analysis (ABA) therapist - or behavioural interventionist - works individually with autistic children to help them improve in their daily activities.
"The best part is to see kids change and improve, and to make a difference in their development because you play an important part in their early age," Lim said.
Currently Lim is working with seven kids, each of whom she sees about three times a week, and teaches them different skills, from cognitive to verbal to self-help.
"For some families I'm more in a role of supervising junior therapist, so I go there once a week to check with the kid, check with their progress, and see if they understand things" she said. "For some of them I still do the job on my own."
Lim recognizes the difference when working with autistic kids, as opposed to other children.
"They are really genuine, they don't lie and they just tell you the truth," she said. "Children with autism just lack the skills that typical kids would have, such as they might be weaker in communicating their message and maybe their language is not fully there. Some of them are really smart, but they might be slower learners. There are different ends of the spectrum."
Having worked as an ABA therapist for three years, Lim considers herself self-employed as she is sometimes hired privately and sometimes through an agency such as Early Autism Project, Able Clinic and ABA Academy.
After graduating from Simon Fraser University with a psychology major and a minor in early childhood education, the Vancouver native took the first opportunity she got in working with children.
"I also have a background working with kids at church," she said. "And with all that skill, I think this is a good field for me to get into."
But there are some downsides, especially when it comes to work hours.
"It's Monday to Friday if you can schedule it that way but it's kind of hard because the kid has to go to school," Lim said. "Summer is good because I get a full time schedule."
Working with children for three hours straight can be challenging, especially when you have to focus your full attention on them for that whole amount of time.
"This kind of job is really draining energy-wise because sometimes I have three shifts in a day and I spend three hours with each kid," Lim said. "With this job, you have to spend 100 per cent on the kid."
And then there is the instability issue, she said, both income wise and time wise. But despite the challenges, Lim has a certain personality and mindset that drives her to continue this line of work.
"You should believe that they can actually improve," she said. "Believe in yourself that you are making an impact in the kid's life."
"An hourly rate for a junior therapist will be from $10 to $15," said Selina Lim. "For senior, it's $15 to start and goes up to $22 an hour."
"Probably a degree in psychology, or in early childhood education, or working with special kids," she said. "Sometimes occupational therapy like human kinetics or speech therapy, with that kind of background. If you want to go higher in the field, you'll need a master's degree and a licence."
"Be outgoing because with kids, if you are shy they won't be motivated to work with you. Gain experience through volunteering with kids first. There are websites to go to for more information, such as www.featbc.org, and also going through university job postings."
From the Orillia paper:
Dog expected to make difference in autistic boy's life
Constant companionship described as key benefit
Posted By BY SARA ROSS, THE PACKET AND TIMES
Updated 5 days ago
Ethan Archer doesn't understand why he doesn't have any friends and can't participate in extracurricular activities like his brothers.
The 10-year old doesn't sleep in his own bedroom at night; his mom, Duana, looks forward to the day when Ethan will go to his own room and stay there all night.
Ethan is autistic and, thankfully for him and his family, that day is a little over a year away. The family has applied for a trained service dog from Autism Dog Services. The special dog will become Ethan's best friend and help alleviate the Archer family's stress.
"It's important for him to get this dog because everyday things that we take for granted... Ethan doesn't have in his life. This dog will be able to offer him that," Duana said, adding the dog will go everywhere with Ethan.
Children with autism need to have the same person with them non-stop. For Ethan, that's his mom.
However, since Ethan is 10 years old, it is impossible for Duana to go everywhere with him, so having a dog that can will be helpful.
Joanne Scott-Jackson is a volunteer with Autism Dog Services. She noted a lot of autistic kids don't have friends or can't make them easily.
"That constant companionship is important. Dogs are non-judgmental, loyal and love you no matter what," she said. "For these kids, that's huge."
Ethan, his mom and brother met with Scott-Jackson and dog trainer Wade Beattie on Friday in McKinnell Square Park. They brought with them a puppy in training named Gunner.
Holding Gunner's leash and walking him gave Ethan something to keep his mind on.
"Rather than having a parent holding their hand constantly at age nine, 10, 12, which kids that age don't want, they learn to focus on the dog and are safe with the dog. This makes them feel more independent and helps them into adulthood," Scott- Jackson explained.
"I really need a dog," Ethan said. "He's going to help me and make me feel safe."
For Ethan to have his dog, the family has to raise $18,000. Autism Dog Services is a not-for- profit agency and it costs a lot to have the dogs trained.
The Archer family is hoping the community will help them raise the funds they need. They are planning a dinner catered by Ethan's dad, who is a chef, and will approach community organizations for help.
And finally I am sharing a bit of info that has come up to us from a Pennsylvania contact regarding a new initiative there for our adults. Those interested in adult issues on this list may find this especially of interest:
Adult Autism Waiver
http://www.dpw. state.pa. us/ServicesProgr ams/Autism/ News/2008NewsAnn ouncements/ 003677257. htm
Governor Edward G. Rendell announced on May 22, 2008, that Pennsylvania has been approved for a first-of-its- kind federal waiver program to provide home and community based services specifically for adults with autism. The $20 million-a-year waiver program, which is expected to serve up to 200 individuals 21 years of age and older with autism, was approved by the U.S. Department of Health and Human Services, Center for Medicare and Medicaid Services. Prior to its approval, no dedicated services existed for adults with autism in Pennsylvania.
Application for a §1915(c) Home and Community-Based Services Waiver (PDF download)
Persons interested in applying for the Autism Waiver can call (toll-free) 866-539-7689 beginning July 1, 2008. Requests for applications will be accepted for six weeks, ending Aug. 11, 2008. Requests will only be accepted by phone. More information.
Autism Waiver: Consumer Frequently Asked Questions and Answers
Autism Waiver: Provider Frequently Asked Questions and Answers
Autism Waiver Fact Sheet
Ellen Notbohm’s Newsletter..
On my Soapbox: Unbundle Me
It’s summer – time to take a break from my usual indignant rants and inject a little humor into the Soapbox. As published in The Sunday Oregonian, June 15, 2008.
Writer’s craft most ripe for a la carte capitalism
“Bundling” is one of those annoying buzz words pervading business these days. If it wasn’t so annoying, it would be comical how some companies – cable television and telephone companies, notoriously – are rushing to bundle services in hopes of persuading (forcing) you to buy services you may or may not want. Meanwhile, other companies are rushing just as urgently in the opposite direction, “unbundling” services, the marketing equivalent of upending their customers by the ankles in order to shake the last possible penny out of their pockets. They spin this money-extraction tactic as “choice” or “ala carte offerings.”
The 800-pound gorilla on this squeeze-play bandwagon is the airline industry. They actually began unbundling long ago, cutting costs by eliminating meal service, an unlamented change since “airplane food” is my favorite oxymoron. Now the “unbundling” is accelerating at warp speed. Some will “unbundle” their product by charging for “extras” such as a phone number through which you can actually reach a reservation agent when your flight is delayed or cancelled. American Airlines will now charge you extra for checking a suitcase. It’s not hard to guess what’s coming next – a surcharge if you want to debark using a jetway instead of leaping to the tarmac. Why not go all the way – bring back steerage class and charge extra for the actual seat on the cattle car?
This all got me to thinking about the products and services I offer. I’m an author, and my fuel costs (some folks still quaintly call it “food”) have gone up too. I have teenage boys in the house; need I say more? I’m just not marketing-savvy enough. I need to unbundle my services in order to cut costs and pocket more money. I will start by offering just the words on the pages. If you want the punctuation that makes it easier to read the book, that will be alacarte, for an extra charge. My granddad actually employed this idea many years ago. When he wrote letters to my mother, he would claim that he couldn’t be bothered with punctuation, and he would string a line of commas, periods and question marks along the bottom of the page, with instructions that she put them in wherever she liked. Wow, this tactic would save me a lot of time writing and editing and save my publisher money on printing. It is not only economical, but green! Think of the paper – the trees! – saved by streamlining all those pesky spaces between the words. Win-win! So the pages of my books would look like this:
.....,,,,,?????!!!!!:::::;;;;; """"" """""’
I will further unbundle my service by charging extra for all those superfluous vowels. They are not really needed anyway. Most people can figure out a sentence without the vowels; really they can! (Ask any teen who texts.)
Vwls r nt ncssry t rdng njymnt. n fct thy r wst f tm, dnt y gr?
Did you notice I included the y’s as a special bonus? Don’t get too excited. They are perks thrown in only for frequent buyers of my books.
I will yet further unbundle my service by offering the consumer the ultimate economy: book binding and a cover will cost you extra. That’s right. The basic cost of the book gets you the words on the pages – loose pages. Why should consumers pay for binding and fancy cover art if they don’t want it?
When sales of my books drop, I will blame Amazon for their faulty accounting system or sneer at the ignorance of the public for not embracing my sensible cost-cutting measures. But hey, look at how much less space my books take up in my carry-on suitcase as I fly the frugal skies.
I’d love to chat more about this but I gotta run – must buy a new car before dealers figure out they can unbundle stuff like windows and tires. It was good enough for The Flintstones, right?
Betcha it’ll still cost a bundle.
Ten Things: from the mouths of babes
My beloved grandfather came to this country from Russia in 1908 at the age of eleven, so I was very smitten by an article I came across in the Kansas City Times, February 1919. It was written by a nine-year-old Russian immigrant, an early 20th-century English Language Learner. I could only smile and wish that his universal wisdom could permeate time and instill itself in his 21st-century contemporaries.
Ten Rules for Good Health
The following “rules” for good health are advocated by a young Russian, nine years old and a fourth grade pupil, under the stimulus of the lesson in personal hygiene. The rules, unrevised, are:
1. Weare kleen klothes
2. When you eat eat slow and grush the food before you swolo it.
3. One should take baths and change inerwair often.
4. Sleep with your windows open and not your mouth, it gives you bad breath.
5. Dont eat untill you feel stuffed.
6. Take a bath evry so ofn.
7. Wash your teeth befor and after breakfus.
8. When you go to sleep aways take of your stockings.
9. Kleend you finger nailes good.
10. Look at your food before you ear it.
Daily life: the I-can’t time capsule
Your child or student’s challenges are many. If “I can’t do this” is a common refrain, it’s time to stage a burial for an “I can’t” time capsule, to be unearthed at a later date. This can be a solo activity or a whole-family or whole-class activity. Participants write or dictate on slips of paper things they can’t do that cause them frustration. The slips go into a jar that gets buried or stashed for a length of time you decide upon. By the time the jar is unburied a year (or whatever length of time you decide) later, much of the can’t-do will have turned into can-do, a potentially powerful chart of your child’s progress. Note: we suggest you keep copies of the can’ts that go into the jar so you can judge whether they are being sufficiently met and whether you might need to extend the time on the burial. Unearthing too many unachieved goals defeats the purpose.
And speaking of can’t – just say no. Respond to “I can’t” with “Yes, you can. I am here to help. I have lots of ideas. We will try different ways until we find the one that works.”
Quick stuff, updates, tidbits:
Bryce wins film scholarship! Congratulations to Bryce, winner of a David King Scholarship to the NW Film Center, where he has is completing his second summer session of the Media Arts Academy for Teens. Part of the application asked him to describe any “special attributes or circumstances you would like us to consider.” I loved his response:
“In Willy Wonka and the Chocolate Factory, Grandpa Joe says Charlie has a greater chance of finding a golden ticket because he wants it more than anyone else. That’s how I feel about filmmaking. I realize that’s not enough reason for a scholarship! I’m an A student at Thomas Edison High School for different learners. I’ve been successful there because the instructors understand how I learn, that I learn differently, and they are willing to work with me. I’ve found the same thing at the Film Center. It’s the reason I’ve been comfortable coming back here every year.”
My latest interview is available at Autism Inspires
A collection of my Ancestry articles is now available on one page on my website. Please visit Every life matters on my website.
Howdy from Perryvale, Alberta, 121 km north of Edmonton
Isn’t the sky fantastic?
Dutch translation of 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders isnow available.
Autisme in de prajtijk:
1001 ideeen, tips en strategieen voor ouders en leerkrachten
Ellen Notbohm en Veronica Zysk
I always answer my email. But we live in a world of imperfect servers, aggressive spam filters and power outages. If you’ve written to me and I haven’t answered, please try resending your message with a different subject heading.
Newsletter archive on my website: if you are new to our newsletter community, please visit the newsletter archive on my website and browse some popular past features.
May-June 2008: Play time: Ten Things to do with a Big Box / Teacher of the Year
April 2008: Rx for Battle Fatigue / Should you “let” your child win?
March 2008: Parent Eye Contact: How It Builds Children's Self-Esteem
February 2008: Thinking About Your Family Health History /
Goodbye to a Bad Law
November 2007: The War on Soda / My Navy Blue Hawaii
October 2007: “Behavior?” We are what we eat
This month’s Reads
Autism Asperger’s Digest
Right on the Money
Postcards from the Road Less Traveled, Autism Asperger’s Digest
Having been involuntarily conscripted into the world of autism well over a decade ago, I’ve had the opportunity to observe many things that have changed monumentally and many things that need to change but have remained stubbornly static...
Among parents, teachers and other grassroots groups with whom I interact, two subjects are becoming increasingly prevalent. The first concerns groups wanting to do fundraisers for autism awareness, research, education or services. They ask which organizations might be worthy recipients of their contributions. Where will their dollars do the most good?
The second group is often a subset of the first group. They are the deeply frustrated and sometimes desperate parents whose child has been flagged as an autism “possible,” but doctors and services in their area are so scarce that the wait for a diagnostic appointment can be six months or more. And they may still be the lucky ones...
These two subjects are as one in my mind. That is why groups who venture to ask me how their dollars might be best spent get a grassroots answer: reach out to your own community...
Autism Asperger’s Digest
Two-time MarCom Gold Award winner
Two-time NAPPA Parenting Resources Gold Award winner
Sydney’s Child, Melbourne’s Child, Brisbane’s Child,
Perth’s Child, Canberra’s Child, Adelaide’s Child
The Social Side of Autism: the importance of teaching social and emotional skills
It’s all but a certainty that before a child receives services related to his autism through the public school system, he will subject to a barrage of evaluations that will include a test of his IQ (intelligence quotient). Or more accurately put: a test of cognitive and verbal intelligence quotient that will not be standardized to the type of language deficits common to autism. Therefore, many parents will find the results to be a wildly inaccurate reflection of the actual abilities their child demonstrates in “real life.”
It’s only the beginning; throughout a child’s education, he will be tested to gnat’s eye on reading, writing, math ... But it’s likely that much less emphasis will be placed on his social and emotional intelligence. And social and emotional intelligence is very possibly a bigger determinant in your child’s long term success in life than cognitive intelligence. Think about the skills embodied in what is called Theory of Mind: executive function (time management, planning, ability to focus and attend, memory management), critical thinking (sorting, comparing/contrasting, applying concepts, information and ideas) and social pragmatics (ability to take the perspective of another person, initiate and sustain interactions, problem-solve interpersonal disagreements). Lack of these skills is more likely to get you fired from a job or evicted from an apartment than is an average IQ...
Three Little Words
Healing, Spring-Summer 2008
“I was wrong.” So many people find it terribly difficult to say these three little words, and yet nothing is more loving than giving your children the gift of being content with their own humanity. By freely admitting when you are wrong, you are you are modeling strength, grace and humility... that, not only will the world not come to an end with such an admission, but that trying again and/or making amends can feel great.
“Just be yourself.” As children grow older, they mingle with more and different kinds of families, and they begin to be able to place themselves in the context of the larger world. My kids heard “just be yourself” enough to ultimately learn that, whatever their doubts about themselves and their various limitations, they have the power to decide whether to be their own best friend or their own worst enemy. That’s a power no super-hero can touch...
You can now download the entire issue here as a PDF.
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
Read the Preface, here.
Read the first chapter, You Know More Than You Think You Know, here.
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 www.amazon.com. It’s easy to do and you don’t have to post your real name.
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.
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©2008 Ellen Notbohm | Third Variation Strategies, LLC
s Autism Caused by Environmental Factors?
Looking for Answers for the Increasingly Widespread Disease
EarthTalk is a Q&A column from E/The Environmental Magazine
Dear EarthTalk: What's going on with all the cases of autism cropping up and no one seems to know why? It stands to reason it must be something (or some things) environmental, yet every study allegedly turns up no conclusion? What are the possible causes?-- Jessica W., Austin, TX
No doubt about it, autism rates have skyrocketed in the U.S. and beyond in recent years. According to the Centers for Disease Control and Prevention, the disease affects one in every 150 children born today in the U.S., up from one in 500 as recently as just 10 years ago.
Autism has become the fastest-growing developmental disability -- more prevalent than childhood cancer, juvenile diabetes and pediatric AIDS combined -- and it continues to grow at a rate of 10 to 17 percent per year.
While researchers think there is a genetic component to autism, they also believe environmental factors are playing a role in its recent increase. Environmental mercury and other heavy metal exposure, contaminated water, pesticides, a greater reliance on antibiotics -- and even extensive television viewing by very young children -- have been cited by some as possible factors in mounting autism rates. Researchers at the American Academy of Pediatrics and other institutes have also identified flame retardants as possible culprits.
Vaccines containing the mercury preservative thimerosal (now mostly removed from the market) have long been blamed for causing autism, but scientific links are inconclusive. In lieu of a smoking gun, a more complex picture of autism's environmental causes is now emerging.
Some researchers are focusing on the role of food in a young child's development. Many autistic children suffer from digestive diseases or have genetic dispositions rendering them unable to naturally rid their bodies of toxins. As such, exposure to heavy metals, pesticides, contaminated water and even processed food could have a devastating cumulative effect, some researchers think. According to Brian MacFabe, a researcher at the University of Western Ontario who has studied autism triggers in rats, simple changes such as removing wheat and dairy from the diet could potentially bring about improvements. (Celebrity Jenny McCarthy has made headlines advocating this position, in response to her son's autism.)
Groups such as the nonprofit Healthy Child Healthy World say it's about time researchers are looking at environmental factors. "Whatever triggered this current autism epidemic...autistic kids clearly need extra protection from further environmental assault," the group writes on its blog. They advise parents to be vigilant about the industrial cleaners used in school buildings and the pesticides sprayed on playing fields, where kids spend 25 to 30 hours per week. They and other groups are also looking at the role of untested chemicals in common cleaning products: phthalates, glycol ethers and other known toxins.
Others wonder if a collective "nature deficit disorder" among children plays a factor in rising autism rates. Outdoor exposure has long been associated with healthier cognitive functioning in children, with reduction in Attention Deficit Disorder symptoms and greater emotional capacity. But new findings suggest it could impact autism, too. Last year, Cornell University researchers found higher rates of autism in counties where more households subscribed to cable and children under the age of three regularly watched TV. The Amish, with almost no exposure to TV, have little evidence of autism, notes the study.
GOT AN ENVIRONMENTAL QUESTION? Send it to: EarthTalk, c/o E/The Environmental Magazine, P.O. Box 5098, Westport, CT 06881; submit it here or via e-mail. Read past columns here.
Find this article at: http://www.thedailygreen.com/environmental-news/latest/autism-environmental-causes-460708
volunteers needed in July
Tuesday, July 1, 2008 3:58 PM
I am sending this out to everyone in my contact list, so if I have you in more than one distribution list, I apologize for sending this more than once.
Jay Serdula is planning to swim across Lake Ontario on July 28th (weather permitting) to raise awareness of Asperger’s Syndrome. Jay lives with Asperger’s and hopes that awareness will remove barriers.
We need a nurse or paramedic to be on one of the boats that accompany Jay from Niagara on the Lake to Toronto. We also need boat operators who can operate a 30 foot power boat or sailboat and/or 14 foot zodiacs in high waves.
Jay expects to leave Niagara on the Lake at 8am on July 28th and arrive 30 to 36 hours later in Toronto at Marilyn Bell Park.
As you can see, we are running out of time to find volunteers with these specific skills. Please send this to everyone you know as I believe we will find the volunteers in time!
I have attached information about Jay and his swim.
Newspaper article about Jay:
Information about Asperger’s Syndrome:
Jay’s website in draft form:
If you can help, please contact Louise at the address above: firstname.lastname@example.org
Thanks for your help!
Kerry's Place Autism Services supports
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