Thursday, July 31, 2008

'Like going to Disney World every Saturday'

Horse-riding program has healing effects on Waukegan boys coping with disorders

July 31, 2008


BY CHARLIE ADELMAN

Despite suffering from numerous health crises, two Waukegan boys have found solace in the unlikely therapy of horseback riding.

For Evan Dustan, 9, and his 2½-year-old brother Ian, life hasn't been such an easy ride.

At age 3, Evan was discovered to have autism, and just two weeks ago he was diagnosed with acute myelogenous leukemia.

His brother, meanwhile, has suffered from an undiagnosed digestion problem that prohibits his stomach from processing any food. He has been connected to feeding tubes since shortly after he was born.

Both boys have been going through therapeutic horseback riding sessions at the Midwest Therapeutic Riding Program in Racine, Wis. since they were toddlers.

"It's a place where kids don't have disabilities and kids are kids," said the boys' mother, Jamie. "It's the best therapy we've ever given them. Ian said his first word on a horse."

For the family, who lives in Waukegan, Evan's recent diagnosis has been a huge blow.

"We were not even prepared," Jamie said. "We were so ignorant, we had no concept of what we were looking at."

Only a day after Evan was diagnosed, Jamie and her husband Chris took the boys up to Milwaukee to begin Evan's treatment.

"Evan's had a really rough beginning," Jamie said. "He had a seizure disorder that has resurfaced since undergoing treatment."

Playing supermom to her children, Jamie admits Evan's latest developments have been a struggle.

"Having a second child already medically fragile, this complicates things a bit," she said.

To ease their stay in Milwaukee, the family has moved into a suite at a Ronald McDonald house there and will likely stay until January while Evan goes through chemotherapy.

With all the recent tribulations, it's not surprising Evan is looking forward to getting back on a horse, although, "it's going to be a little while," said Jamie.

"The program is really a place where kids' dreams come true," she said. "It's been like going to Disney World every Saturday. It's been life-changing for the entire family."

Autism swim program designed to save lives

Thursday, July 31, 2008

COURTESY SOMERSET HILLS YMCA

Statistics show that the highest rate of accidental death of autistic children is through drowning.

In response to this disturbing fact, in January, 2008, children from the Mount Prospect Pre-School Autistic Program (ages 3-5 years) began swim lessons each week at the Somerset Hills YMCA using the ABA (Applied Behavioral Analysis) methodology, a systematic step-by-step approach to learning that is implemented specifically in teaching children with autism.

The cooperative program between the YMCA and the Bernards Township School District is the brainchild of Jean O'Connell, Supervisor of Special Education, Bernards Township Schools, and Anna Scanniello, Director of Aquatics and Safety at the Somerset Hills YMCA in Basking Ridge.

Named ABA Swimming -- A Better Approach to Swimming -- the program is based on the ABA methodology that extends the use of the principles of applied behavior analysis to teaching children with autism. Lessons are held at the Somerset Hills YMCA training pool, where lead teacher, Allyson Sudol, pre-school Speech pathologist and former competitive swimmer, has developed a curriculum, based on her 12 years of experience teaching children with developmental difficulties.

With additional swim instructors and pool space provided at no cost by the YMCA, children are learning this vital life skill.

At the same time, the children learn essential social skills as they ride the school bus, change in and out of swimwear, navigate their way around the pool, and interact with instructors.

"We must continue to enable families to better face autism by providing the support services that they desperately need," stated Dr. Joseph Morandi, board-certified family physician and chairman of the Medical Committee for the Somerset Hills YMCA. "The ABA swimming program teaches essential skills, both in and out of the water, which these children might not otherwise learn. When you think about the YMCA's core principles of helping the people in our community grow in spirit, mind and body, this program is a perfect example that encompasses all of those values and leaves us with that warm sense of accomplishment and purpose."

Anna Scanniello of the YMCA insists that teaching the children to swim is a gift to the instructor and child alike and, at the same time, allows the children to increase their own independence for community involvement.

"This pilot program will hopefully be the first of many to address this issue," adds Scanniello.

Optimism is high that this program's success will encourage the widespread development of similar programs and trigger more grants to help underwrite operating costs such as instructor training, transportation, etc., so that other age groups can benefit from this opportunity.

For more information, visit www.somersethillsymca.org or e-mail Anna Scanniello at ascanniello@somersethillsymca.org.

The Somerset Hills YMCA is a community service, mission based, 501c3 non-profit organization of dedicated staff and volunteers, serving all individuals regardless of gender, age, race, faith, ethnic heritage, mental/physical ability or economic circumstance.

Each year, the Somerset Hills YMCA provides over $550,000 in financial assistance and program subsidy through the Strong Kids Campaign. Located in Basking Ridge and dedicated to helping people grow in spirit, mind and body, the Somerset Hills YMCA is guided by the core principles of caring, honesty, respect and responsibility.

Penn State Conference to Provide Lessons for Educators and Families of Kids with Autism

Thousands expected to attend as the number of diagnosed autism cases continues to increase

UNIVERSITY PARK, Pa., July 30 /PRNewswire/ -- Educators, interested professionals and families of autistic children who hope to create effective educational programming will descend on Penn State's 2008 National Autism Conference, August 4-8 at the Penn Stater Conference Center.

According to the latest figures by the U.S. Department of Education, the number of diagnosed autism cases has increased 172 percent since 1990. The amount of new cases continues to be a challenge for those who are educating and treating people with autism.

"As awareness of autism continues to grow, this conference will remain a vital forum for educators, providers and families to discuss the latest findings in treating and educating students with autism spectrum disorders," said Nancy Eckard, conference planner. "We host close to 400 conferences and meetings at the Penn Stater and the Autism Conference is one of the biggest."

The conference, which averages approximately 2,500 participants, will feature experts in autism, educators, autism advocates and people with autism and their family members. Speakers at this year's conference include:

-- Eustacia Cutler, author and speaker, whose studies in autism and retardation led to two television documentaries: The Disquieted, on disturbed children, and The Innocents. Her book, A Thorn in My Pocket: Temple Grandin's Mother Tells the Family Story, is in its third printing.

-- Rachel Marie Brooks, Miss Pennsylvania 2007, promoted her platform -- "Autism Awareness: Unlocking the Mystery" -- across the state. A graduate student in the University of Pennsylvania's Fels Institute of Government, she advocates for legislation and policies designed to benefit the autism community at the local, state and federal levels.

-- Joe Gans will share his challenges -- and successes -- as a 20-year-old Penn State student with autism.

The conference is sponsored by the Pennsylvania Department of Education. Information about the conference is available at http://www.outreach.psu.edu/programs/Autism/ online.

Hundreds attend Autism Summit in Temecula

By CLAUDIA BUSTAMANTE
The Press-Enterprise

TEMECULA - There's no magic bullet for autism, but family and friends of children who have the condition learned Tuesday about various health therapies, research and communication methods.

Hundreds of people attended the area's first Autism Summit at Rancho Community Church in Temecula. The event drew more than 50 vendors, both local and from nearby counties.

There were tables from schools such as Oak Grove in Murrieta, lawyers specializing in special education, nutrition information and autism research centers.

Parents, Professionals Share Experiences At Autism Summit

Just one year ago, Casandra Oldham's life was changed forever with one word: autism. Before that her then-two-and-a-half year old son was normal, she said.

"He had words, he put them together; he would play. He slowly regressed over the winter," Oldham said. "He got to the point where he would sit in the corner all day, chewing on his shirt and playing with the shadows that came in through the window. He lost all his words. He lost his communications skills. He lost his ability to play."

Her story was one of many shared during Monday night's Autism summit held in Lansdowne to focus attention on the needs of children with the brain development disorder and on proposed state legislation that could help families afford treatments.

Oldham said her family had only moved to the area about a year before her son's diagnosis. They started an applied behavior analysis program for her son, a costly treatment not covered by health insurance, but which has received much praise in recent years as an effective treatment for autism. When the family's car broke down and as bills began to pile up, they eventually had to shut off part of their water to continue paying for their son's treatments.

Oldham then watched as her second child, only 17 months old at the time, began to regress. He lost the ability to point, and to chew, she said. Her younger son was then tested for mitochondrial disease, and the test came back positive. She had her older son, then three years old, tested as well. His test also came back positive.

"They were born normal," Oldham said. "They acquired the mitochondrial condition that brought about their autism."

"Let me say this about the [applied behavioral analysis]: the ABA works on both my children. But I had to sit there, and I had to choose. Do I pay the $3,000 to have my kid potty trained, or do I ask if my child can speak?" she said. "These are the choices I had to make. Do I help my baby, who at least they caught sooner, and might have more hope, or do I help my three year old?"

After her sons' were diagnosed, Oldham turned to the community of parents with children suffering from autism, and was able to get help for her 17-month-old child this summer. Her three year old started school last year, and while she praised the teachers who work with her son, both she and the teachers know it is not enough, she said. But the cost of treatments is just too high.

"They're young, and they have potential," she said of her children, "but we just don't have the resources."

When she started her 17-month-old child's ABA treatments, the cost of 21 hours of treatment every week was $3,600 per month. Her doctor recommended 40 hours of treatment each week. To treat both of her children at the doctor's recommendations, her family would have to pay more than $14,000 every month.

Parents at Monday's Autism Summit also heard testimony from experts in the field of autism treatment about advances in treatments, and from state legislators backing a bill that would require insurance companies to provide coverage for autism treatment.

Jane Barbin was at the event representing the Association for Science in Autism Treatment. The association works to spread scientific information about the treatment of autism. Barbin spoke in favor of ABA treatments, citing studies by several task forces, including the New York State Department of Health of the Office of the U.S. Surgeon General.

"And what that office has said," Barbin said, referring to the Surgeon General's report, "is they have concluded that there is over 30 years ... demonstrating the effectiveness of applied behavioral analysis in decreasing inappropriate behaviors," such as aggression, hand-flapping, and non-functional vocal responses.

Barbin said the Surgeon General's Office also concluded ABA "is effective in increasing certain behaviors that are important," such as communication and social skills.

Delegates Robert Marshall (R-13), David Poisson (D-32), Thomas Rust (R-86), Charles Caputo (D-67), and Senator Mark Herring (D-33) attended the event, hosted by the Loudoun County Autism Network, and expressed their support for House Bill 83.

The bill, which was introduced by Marshall, after working with one of his constituents, originally sought to address the lack of insurance coverage for services for all children with developmental disabilities, but has since been amended to focus only on those children who have been diagnosed in the autism spectrum.

The bill was left in committee during last spring's session, but it has been regenerated with a public hearing anticipated in Richmond some time this fall.

"Every child is special. And we need to remember that providing these services is expensive, but it is an investment. And most importantly, it is an investment in children," Rust said Monday.

Children with autism who receive treatment early can eventually enter the work force, instead of becoming wards of the state, which would offset the costs of covering autism under insurance programs, he said.

Marshall spoke about how parents and advocates need to network to gather contacts from around the state who can petition local delegates and senators to support the bill, especially those on the State Corporation Commission's mandated benefits commission, and the commerce and labor committees in the House of Delegates and Senate.

Marshall was able to recruit four volunteers from the crowd to serve as phone organizers for northern, southern, western, and the tidewater regions of Virginia, and encouraged everyone present to give their information to Pat DiBari, a Lansdowne resident whose grassroots efforts spawned the Autism Summit and who founded The Loudoun Project, an online community and resource for parents of children with autism.

"Has everyone given their name and number and e-mail to Pat here?" Marshall asked during his speech. "If you haven't done it, you have to do it before you leave the room. You will not be allowed to leave to room until you do so," he said, drawing much laughter from the audience.

James Lafferty, president of the Autism Advocacy Coalition whose son was diagnosed with autism at the age of two and has undergone ABA treatments, spoke to the crowd about his own experiences with autism.

Lafferty told the audience about the anger he experienced when his son's teacher told him that his son did not need speech therapy, because he could not speak, and the pride he felt about being able to drop his son off for the his first day of regular kindergarten this fall.

He agreed with Marshall's ideas for organizing people at a local level to help influence legislators when it comes to autism matters, saying the audience would "have to be ready for the fight of our lives."

Wednesday, July 30, 2008

Micro-lending blog funds controversial autism treatments

Tori Tuncan didn’t know Logan Rogers or his mom, but she posted their request on her blog:

Logan, 10 years old, is unable to ride his bike because he has “absolutely no muscle tone.” He needs occupational therapy. Insurance will cover it, but his mom needs $250, immediately, to pay for the evaluation up front.

Can you lend his mom the money?

Within eight hours, Tori had raised the funds for Logan’s mom, thanks to five strangers who agreed to the loans. For Tori, it was on to the next kid.

A month ago, Tori quietly launched a very ambitious blog. At Lend4Health.blogspot.com, parents of autistic children who seek biomedical treatments — chelation, visits with DAN! doctors, hyperbaric oxygen treatments, and more — can ask for micro-loans from Tori’s readers.

Those biomedical treatments are used by thousands of parents who swear by them, but they’re often difficult to get insurers to pay for because they are not accepted by mainstream doctors as safe, effective treatments for autism. (For more on DAN! treatments, read our primer.)

The first loan took about a month to fulfill — $266 for food sensitivity testing. The second, Logan’s, took just eight hours. The third was posted Tuesday afternoon.

For a community of parents who are already comfortable getting treatment advice, sharing health problems and dishing on their kids’ diets online, this goes a step further: It gives them a chance to be actually invested in another family’s autistic journey.

Tori is a consultant in the Washington, D.C. area. She has a 3-year-old son with a sensory processing disorder (not on the autism spectrum), though she suspects he had autism. Because her son is on a gluten-free/ casein-free diet (a biomedical treatment for autism), she spends a lot of time on message boards with parents dealing with autism. (She also blogs about GF/CF diets, and — really — poop.)

“Everyone (on the message boards) is like, ‘We’re $30,000 in debt, we had to sell our house, our car, we’re living with my parents, insurance doesn’t cover any of this stuff,’” she said in an interview. “Most stuff you do with a DAN! doctor is not covered by insurance. Getting your olive leaf extract is not covered by insurance.”I haven’t read Jenny McCarthy’s next book, but I’m guessing a huge part of what she’s going to talk about is all the stuff moms have to go through to heal their kids. And it takes a major financial toll. But you do what you gotta do because it’s your kid.”

When she got the idea last month — inspired by Kiva.org, which facilitates micro-loans to developing countries — she ran downstairs to tell her husband. She vowed not to launch it until she lost 20 pounds — hoping the excitement of the idea would be the motivation she needed to lose the weight. But she couldn’t wait. She’s still working on the 20 pounds.

Loans are made and and repaid through PayPal, and borrowers sign a written loan agreement. The terms of the loan are set by the borrower. One of the moms is paying it off in a month; another, over the next year. I ask her if they pay interest. “Of course not,” she says.

She admits she rushed into the idea. She requires references, and she checks them out, but she doesn’t know what she’ll do if somebody defaults. “I have a FAQ section I haven’t done yet, and I know that’s one of the questions.”

But she doesn’t think that’ll happen. “I don’t think people will. It’s such a big deal. These moms are excited, like ‘Oh my gosh I can’t believe a bunch of strangers will lend me $10 to help my kid.”

I ask her if, when somebody asks for a loan, she takes their credit card number or something so she has some official leverage.

“No, but thank you. That’s a good idea.”

Autism Baseball League First in Chicago

The Autism Awareness Kids Baseball Program, a summer baseball league taking place on Sunday mornings in Humboldt Park, is Chicago’s first sports program for children with autism. The league was conceived by Alex Cruz, who was reluctant to place his autistic son in a competitive environment where he might be teased or ignored. Local families came together to help make the idea a reality, and now with the support of former White Sox infielder Alex CintrĂ³n, the league has plans to expand into four little league teams for children with autism and with other special needs. Future plans are to expand the program into indoor soccer, basketball, and floor hockey.

For more information, contact Alex Cruz at 773-663-8909

Autism partner dog helps Horry County family

Dru Forster
Published: July 29, 2008

In their Horry County backyard, they seem like the picture perfect family, but the Clemants have had there fair share of challenges. Both of their sons have Autism.

Monique Clemant says, “No two kids with Autism are alike. They say it’s the disease of three-hundred and sixty degrees and it really and truly is like every degree is different and makes a child with autism that much more different.”

Monique and her husband Jim have needed all the guidance they can get with their sons, seven year old Daniel and six year old Thomas. They turned to “The North Star Foundation”, a non-profit program that helps children with developmental disabilities.

Someone made an anonymous donation to the foundation and changed the Clemant Family forever by bringing an Autism partner dog into their lives. Autism partner dogs are trained to provide comfort and guidance and that is exactly what “Bennie” is doing for the Clemant family.

”He’s larger then we thought he would be but he’s fits right in with the craziness of our family everyday,” says Monique.

Bennie has been with the Clemant’s for more than a year now. Jim says it’s made a difference watching his sons play free now. He also sees that the interaction between Bennie and his sons makes a huge difference in their lives.

Gina Crist, Bennie’s trainer says, “The dog naturally reduces anxiety, stress and blood pressure in the child.” Gina’s main goal is to get the families used to Autism partner dogs.

The Clemant family is thankful for Bennie and Monique says he will be a part of her children’s lives for many years to come, and will always live up to his title of boy’s best friend.

If your interested in the program or have a child struggling with autism. You can call “The North Star Program” at 843-449-0554.

Tuesday, July 29, 2008

Swimmer aims for his dream

Trying to conquer Lake Ontario

By JORDAN PRESS, SUN MEDIA


In early May, Jay Serdula dreamed that he was swimming across Lake Ontario, each stroke bringing him closer to the Toronto shoreline.

He could see the CN Tower looming larger. His body felt fresh and he was feeling good about making it ashore.

Yesterday that dream came true for the Kingston resident. Setting out from Niagara-on-the-Lake at 10 a.m., he is trying to swim across Lake Ontario to raise money and awareness for Asperger's syndrome, a disorder on the mild end of the autism spectrum that makes it difficult for people to adapt to new things.

He is scheduled to end his swim at Toronto's Marilyn Bell Park today between 3-6 p.m.

Serdula, 36, was born with Asperger's. He has prepared two years for this moment, and it's the preparation, he said, that should help him finish the swim.

Saturday, July 26, 2008

How Adults Cope With Autism In The Workplace

MINNEAPOLIS (CBS) ― Alex Ashkar is a model employee at the Bull Run coffee roasters. And he has autism.

"You know, its one thing to have somebody who works well, but it's also something to have someone whom you like," said Bull Run owner Greg Hoyt.

At Bull Run, Ashkar's autism is a non-issue. He typically works in the packaging department putting stickers on the boxes of coffee and taping them shut.

For Ashkar, finding meaningful work has been a lesson in understanding his limits. His first job at a local retailer didn't work out.

"They had him in a situation where he ended up working in isolation, you know, just straightening the cans, making sure that they're all facing the right way," said Alex's father Sean Ashkar.

For Alex Ashkar, a true people person, it wasn't a good match. So his family turned to Partnership Resources Incorporated, a nonprofit agency helping people with autism and other developmental disabilities find work.

With autism rates on the rise, PRI finds they are helping a lot more people who have the disorder.

"In the old days, you maybe would have out of 10, one or two. And now today, in 2008, we have eight out of 10 are on the autism spectrum, and that presents a whole different set of challenges and opportunities for us," said PRI's Dan Reed. "There's absolutely no reason they can't be extremely successful and happy in the community."

Through PRI, adults with autism or other developmental disabilities are set up with a job coach whose only job is to see that the worker succeeds. The coach devises supports that help supplement their skills, such as the counting board Alex's job coach created to keep track of how many bags of coffee go in a box.

"Alex can meander mentally a little bit, but that's part of where the job coach comes in," Reed said.

Alex and his family have had the advantage of knowing he had autism since he was only 2-years-old, but there are a lot of adults who are just now finding out they're on the spectrum.

"It explained so much. It was a relief," said Rich Cracraft, an adult with autism. "To finally have an answer to why I am the way I am."

Cracraft was diagnosed just last year. He'd suffered through countless jobs before finding success as a historical guide at the Oliver Kelly Farm in Elk River, Minn.

"It's a great mix of physical and mental," he said. "I'm not stupid. I'm a college graduate and everything like that, but my brain works slower than other people and I don't work as quickly as other people."

Cracraft sought out a diagnosis after learning his son was on the autism spectrum. He and his wife recognized a lot of common traits.

"Little things that a normal, a typical person would normally slough off are a little more sensory for him," said Lora Cracraft, Rich's wife.

Looking back, Rich Cracraft now sees symptoms that were always there.

"I can remember having a mantra of look normal, look normal, look normal, as I'm walking down the halls at school," he said.

Rich Cracraft received a diagnosis through the Autism Society of Minnesota.

"You have to be ready to accept the information the that you get," he said.

He also said he wishes there were more services for people like him, who mostly just need help understanding the social aspects of work, someone to help explain "when you walk in and there's a group of people standing there, what's the protocol for saying 'hi'."

"We have an obligation not to simply serve someone on one end of the spectrum or the other. It's an entire spectrum," said Shamus O'Meara, the head of the Governor's Council on Developmental Disabilities.

He added that a goal for the State of Minnesota is to implement more vocational services and spread the word about services that already exist. He said assembling a single resource guide for people with developmental disabilities has taken years, but there's finally a result and people with autism helped put it together through a unique digital imaging program conceived by the Governor's Council.

"I think our state is starting down an innovative road to matching technological innovation with the needs of people with disabilities," O'Meara said.

Through the digital imaging program, state and local agencies as well as private businesses are eliminating paper files.

"Technology, if used in the right way, is a great equalizer with people in the disability community," O'Meara said, adding he believes the next step is an autism task force. "I think that our state legislature needs to realize that these are families with disabilities, that there are a lot of us out there, that we're Democratic, Republican and we're not going to go away."

Day camp lets special kids get their kicks

Summit Academy fits the bill

By Richard Price CORRESPONDENT

LEOMINSTER— As far as summer camps go, this one isn’t much to write home about to mom and dad.

There’s no archery, no lake for swimming, no campfire sing-alongs. There’s not a marshmallow to be found for roasting.

Yet parents from as far away as Andover are driving past the traditional summer camps to Leominster, where they drop off their son or daughter at a day camp in the Summit Academy School at 365 Lindell Ave.


To 7-year-old Brandon Moss, it’s the best camp in the world, even though he travels 45 minutes each way to attend. Here, he learns martial arts and loves it. For his mother, Kelly, it means a 5 a.m. wake-up and $80 a week in gas to drive round trip from Oxford.

Inside the school’s small auditorium, the class — mostly boys 7 to 10 years old — practices an age-appropriate, therapeutic version of martial arts.

They shout out the numbers 1 to 10 in Japanese while performing a series of jumping front kicks and arm-pumping thrusts.

They live with Asperger’s syndrome (an autism spectrum disorder), attention deficit disorders or other developmental disorders.

Standing on checkered floor mats, Brandon doesn’t see this as therapy to build strength, self-confidence and respect. He thinks it’s just fun.

But this modest day camp is the only one of its kind in Central Massachusetts — and only one of five in the state, according to campresource.com. Frustrated with the limited options in their communities, parents of children with learning and social disorders are willing to commute long distances every day despite the early morning wake-up time and high gas prices.

Children such as Brandon usually don’t qualify for summer programs in their towns because they are classified as highly functioning, meaning they won’t lose their skills over the summer, unlike those with severe cases of autism, said Susan Loring, director of the Autism Resource Center in West Boylston. Her state-funded center is a resource for more than 1,200 families in the area. Since these children have poorer social skills, it’s challenging for them to fit in with others at a regular day camp. Ms. Loring said the Summit camp is a welcome relief in Central Massachusetts.

Half of the children who go to the camp travel 30 minutes or more. Designed for children who struggle in a traditional public school setting, the Summit Academy is a private, year-round school with a modified program for learning and social disorders. The camp, which is in its inaugural season, costs $150 per week and runs until Aug.1. There is no financial assistance, but some school districts, Groton-Dunstable for one, have paid for six students to attend.

Daniel DiMezza, director of the Summit Academy School, said more than 40 children per week have signed up. Since building on the child’s emotional and social needs is important, the camp takes advantage of teaching moments when they happen, he said.

Jimmy Nason, 7, enrolled at Summit in April. As a first-grade student at the Hubbardston Center School, he was often overwhelmed in class and would curl up under his desk. He was diagnosed at age 3 with PDD-NOS, which is similar to Asperger’s syndrome.

Lissette Nason, Jimmy’s mother, said he is at par with other children his age academically, but socially he was evaluated way below his grade level. At times disruptive, he often spent four of his six-hour school days in the principal’s office, sent by frustrated teachers because he couldn’t grasp the imaginary elements of particular school assignments.

“He couldn’t write a story about being a bear,” Ms. Nason said. Equally frustrated with the way her son was treated, she added, “You wouldn’t penalize a child who couldn’t run a 50-yard dash.”

Since coming to Summit, Jimmy appears to be doing better. At the start of the martial arts class, he bows as he enters the room and stands on his spot on the mat, marked with a T. Wearing a blue Nike basketball outfit and skinny as a string bean, Jimmy shouts out commands with the others, “When I control my ‘T,’ I control me.”

Tammaris Mitchell is the teacher, or sensei. Referring to the program as martial arts therapy, she said the goal is to work on the whole child, not just the academic portion. Aside from developing eye-hand coordination, the program also focuses on how to identify and manage personal space and establish non-verbal communication, traits not easily learned by children like Jimmy and Brandon.

In class the students recite their creed: always to do their best, accept responsibility and show respect for others.

The lessons learned in Ms. Mitchell’s class enable the children to function for the rest of their camp day, which includes tennis, arts and crafts, and an extended school year of math, science and English.

Late in the afternoon Jimmy heads home with his mother, eager to teach his sister how to count in Japanese.

The parking lot is jammed with cars as Brandon begins his long ride home. He will rise early to attend his next martial arts class on time. This is important, according to the school handbook, because anyone can be a sensei if willing to be dedicated.

Autism and Athletics

By: Kathy Sweeney

For years, children with autism were often left on the sidelines, based on the belief that it would be too hard for them to handle a team sport.

But, some local boys are making a real splash in their chosen sport.

Miller Ogburn, Matthew Holman, and Danny Janisse can all be described using a single word...autism.

But, these three boys all carry another label, one they are very proud of. They're all gators, swimming on the Cape Girardeau team.

Danny Janisse, 14, loves to swim, but he's not too crazy about cameras, but he put his fears aside to talk with Heartland News.

"I've got to dive fast out there, because I pay attention good," Danny said.

While research shows autistic children benefit from staying active, the social interaction and rules of a team sport can often become too much for them to handle.

Kim Holman's son Matthew struggled in soccer, but now he's a strong swimmer with the winning ribbons to prove it.

Swim mom Kelley Pujol knows a lot about autism. She teaches music therapy at the Judevine Center for Autism in Sikeston. Kelley says this kind of repetitive activity really helps these boys from the inside out.

Danny and Matthew aren't the only winners in the pool. While they're learning each stroke, they're teaching their teammates compassion and empathy.

Flying Can Be a Rough Ride for Autistic Children, Families

Parents of Autistic Children Face Special Challenges When It Comes to Travel

By REBECCA KAPLAN

USA TODAY

With heightened security regulations and frequent delays, airplane travel can be an unpleasant ordeal for anyone.


For a child who becomes anxious in close quarters, may have trouble communicating and is sensitive to loud noises, it can be terrifying.


Those are common characteristics of autism, a developmental disability that affects about one in every 150 American children and one in every 94 boys, according to data from the Centers for Disease Control and Prevention.


The condition has been getting more attention in the past five years through advocacy groups such as Autism Speaks and the Autism Society of America. But it still gets negative attention: Last week, syndicated talk radio host Michael Savage said on his show that 99 percent of the time, a child with autism was just "a brat who hasn't been told to cut the act out." The comment drew protests from the advocacy groups.


His comments probably refer to the behavior autistic children can exhibit when they feel anxious, particularly in unfamiliar situations -- they can have meltdowns that involve crying, screaming or kicking. Last month, Janice Farrell of Cary, N.C., and her 2-year-old autistic son, Jarret, were removed from their American Eagle flight after Jarret began crying and screaming uncontrollably. (The airline says Farrell also refused to stow her bag in the proper place, which she denies.)


Airline travel, which is a necessity for many families, has many characteristics that can trigger such meltdowns. In addition to the break in the normal routine -- which many autistic children find stressful because they have trouble anticipating what will happen -- airplane travel involves sitting still for long periods and being surrounded by crowds, says Rebecca Landa, director of the Center for Autism at the Kennedy Krieger Institute in Baltimore.


"Take all the issues (normal adults) have with flying, magnify that by 100, and put that into a child's body," Landa says.



James Gillespie of Philadelphia, whose 14-year-old son, Brendan, has autism, says: "You will run into any number of well-intentioned people who just look at you as if you're a bad parent. There was a time that I was pretty defensive about it."


Both Landa and Kelly Ernsperger, who counsels families in the greater Indianapolis area who are coping with autism, recommend preparing children in the days leading up to the trip by making sure they know exactly what to expect.


"I encourage families to go online and try to get pictures of the airport terminals and planes and destination," Ernsperger says. These pictures, along with conversations about what the child will be doing, help families create "social stories" so children are better able to anticipate exactly what will happen to them.


Landa also recommends letting the child make some choices -- such as choosing his seat -- to defray some of the anxiety and creating simple rules to define the social situation. Gillespie made such a rule for Brendan to let him know what topics were off-limits on airplanes: terrorists, crashing and dying.


He and other parents say snacks and earphones for a child's favorite music or movies are also a must.


It's important to let the airlines know about the situation so they can accommodate the family as well. Many airlines have taken steps to make sure that flight attendants and airport employees are trained to assist customers with disabilities.


"A lot of it is just being forthright and making sure you prepare your child, and you prepare those people who are going to come in contact with your child," says Peter Bell, executive vice president for Autism Speaks.


The public can help too, Landa says. Her No. 1 rule: Don't judge.


"It's best to think, 'How can I be helpful?' " she says, whether that is refraining from making a critical remark or offering to hold something for the family.

Thursday, May 29, 2008

Trouble-shooting specific toilet training problems

Once a visually supported transition and sequencing system has been established, we continue to use a problem-solving approach to troubleshooting details. Whenever the child has a problem with any step of the process, we think about (1) what his perspective might be and (2) how we can simplify and/or clarify through visual structure. Examples follow:

Resists sitting on the toilet

* allow to sit without removing clothes
* allow to sit with toilet covered (cardboard under the seat, gradually cutting larger hole, or towel under the seat, gradually removed)
* use potty seat on the floor rather than up high
* if strategies are helpful for sitting in other places, use in this setting also (timers, screens, picture cues, etc.)
* take turns sitting, or use doll for model
* sit together
* add physical support
* help him understand how long to sit (sing potty song, length of 1 song on tape player, set timer 1 minute, etc.)
* as he gradually begins to tolerate sitting, provide with entertainment

Afraid of flushing

* don't flush until there is something to flush
* start flush with child away from toilet, perhaps standing at the door (might mark the spot with a carpetsquare and gradually get closer to the toilet)
* give advance warning of flush, setting up flushing cue system, such as "ready, set, go"
* allow him to flush

Overly interested in flushing

* physically cover toilet handle to remove from sight
* give something else to hold and manipulate
* use visual sequence to show when to flush (after replacing clothing, for example)
* when time to flush, give child a sticker that matches to a sticker on toilet handle

Playing in water

* give him a toy with a water feature as distraction, such as a tornado tube, glitter tube, etc.
* use a padded lap desk while seated
* cover the seat until ready to use
* put a visual cue of where to stand

Playing with toilet paper

* remove it if a big problem, use Kleenex instead
* roll out amount ahead of time
* give visual cue for how much, such as putting a clothespin on where to tear, or making a tape line on the wall for where to stop

Resists being cleaned

* try different materials (wet wipes, cloth, sponge)
* consider temperature of above material
* take turns with doll

Bad aim

* supply a "target" in the water, such as a Cheerio
* larger target as toilet insert
* (contact papered or laminated cardboard with target drawn on it), gradually moved down add food coloring in the water to draw attention

Retaining when diaper is removed

* cut out bottom of diapers gradually, while allowing child to wear altered diaper to sit on the toilet
* use doll to provide visual model
* increase fluids and fiber in diet
* may need to enlist doctor if serious bowel withholding, may give stool softener

These ideas are not intended to be an inclusive list of steps to take to teach a child to use the toilet. They are, however, illustrative of the problem-solving approach needed and the effort to provide visual cues to increase understanding, cooperation, and motivation.

V. Communication System

Another important step in teaching independent toileting is to plan for a way for the child to initiate the toilet sequence. At first trips to the bathroom may be initiated by an adult directing the child to a transition object or schedule. However, eventually the child will need a way to independently communicate his need to go. Even though he may begin to spontaneously go into a familiar and available bathroom, he needs to learn a concrete way to communicate this need so that he will be able to request when a toilet is not immediately available.

As always, the first step in designing a goal is assessment. Is the child currently signaling in any way that he needs to go to the bathroom, or is he totally reliant on an adult initiating the sequence? If there are behavioral signals that you as an adult observer can "read", these signals can show you the "teachable moments" when you can help the child learn to use a systematic communication tool. Is he able to use objects, pictures, or words to communicate in other settings?

Many children first learn to use expressively the same tool that the adult has used to teach him about going to the toilet. For example, if Mom has been giving him an empty "baby-wipe" box to mean it is time to transition into the bathroom to be changed, the child might begin to use this same box to let Mom know he needs to be changed. Or, if a photograph of the toilet has been used on the child's schedule to tell him when it is time to sit on the toilet, the same photograph will make a meaningful expressive communication tool.

A child who is sometimes able to verbally say "bathroom" may not always able to pull this word up at the appropriate time. When he is tired, in a new place, with a new person, with too many people, catching a cold, upset for any reason -- his higher-level verbal skills may fail him. A child who shows this inconsistency will also be helped by a visual support that (1) helps cue the word he is looking for and (2) serves as a back-up system when he cannot use verbal language.

Applying Structured Teaching Principles to Toilet Training

Many children with autism are difficult to toilet train. Parents and teachers have tried many approaches to teaching the children to use the toilet independently. Not all children respond to the same teaching techniques. A method that is helpful in one child's situation may not be useful in another case. TEACCH consultants are often asked for suggestions for successful toilet training. This article is the compilation of several experienced teachers' and consultants' suggestions about this area of programming.

In thinking about setting up a program to help a child learn to toilet independently, the first TEACCH recommendation would be to try to look at the problem from the perspective of the student with autism. Another TEACCH recommendation would be to build in many elements of visual structure to help the child understand exactly what is expected. Look at each element of Structured Teaching to decide how visual supports can be added to build positive routines, clarify expectations, and reduce confrontational situations.

The child's perspective

Even in typically-developing children, toilet training is often a difficult skill to master. While the child may have good awareness and control of his body, there are other factors… social factors… that determine how easily toileting skills are learned. Small children do not feel an intrinsic desire to become toilet trained. Rather, they acquire this skill in order to please their parents and to gain the social status of " big boy" or "big girl". This social motivation is a critical factor in determining "readiness" for toilet training.

How might the characteristics of autism contribute to a child's difficulty in learning to independently use the toilet?

1. The child's difficulty with understanding and enjoying reciprocal social relationships would certainly interfere with this process. While other 2- or 3-year-olds might be proud of their "big boy pants" and might be happy to please their parents, this type of motivation is rare in a child with autism.

2. Given the characteristic difficulties in understanding language or imitating models, a child with autism may not understand what is being expected of him in the toilet.

3. A child with autism typically has significant difficulty organizing and sequencing information and with attending to relevant information consistently. Therefore following all the steps required in toileting and staying focused on what the task is all about are big challenges.

4. Further, the child's difficulty in accepting changes in his routines also makes toileting a difficult skill to master. From the child's point of view, where is the pressing need to change the familiar routine of wearing and changing a diaper? After 3, or 4, or 6 years of going in the diaper, this routine is very strongly established.

5. A child with autism may also have difficulty integrating sensory information and establishing the relationship between body sensations and everyday functional activities. Therefore he may not know how to "read" the body cues that tell him he needs to use the toilet. He may also be overly involved in the sensory stimulation of the "product"— smearing feces is not uncommon in young children with autism. The child may also be overwhelmed by the sensory environment of the toilet, with loud flushing noises, echoes, rushing water, and a chair with a big hole in it right over this water! A further consideration is that the removal of clothing for toileting may trigger exaggerated responses to the change in temperature and the tactile feeling of clothes on versus clothes off.

Elements of structured teaching

Structured Teaching is the term given to a set of teaching/support tools designed by Division TEACCH for people with autism. These tools are responsive to the characteristics of autism using their strong learning modalities (visual and motor skills and enjoyment of routine) to build bridges over some of the gaps in learning caused by their characteristic deficits. Structured Teaching not only increases the learning of new skills but also serves to increase independence and self-esteem, reducing behavior problems that result from confusion, anxiety, and over-stimulation. Structured Teaching combines the use of individualized assessment, establishment of proactive and adaptive routines, and the systematic use of visual supports to support learning.

I. Beginning step: Assessment

When hoping to toilet train a child with autism, one of the first things we must do is define a realistic goal, realizing that independent toileting may be many, many steps down the road. Each of the steps toward independent toileting is a goal itself. It is necessary to observe and assess the child's understanding of the toileting process in order to choose the correct starting point.

We should begin with establishing a positive and meaningful routine around toileting and collecting data about the child's readiness for schedule training or for independent toileting.

A simple chart can be used to collect the data needed about the child's readiness. On a routine basis, the child is taken to the bathroom for a "quick check" every 30 minutes and data is recorded on each occasion. A sample of one format for collecting this basic information is shown below.

Elimination Record
Child's Name: Date Begun:

Day 1

Day 2

Day 3

Day 4

Day 5

Day 6

Day 7
Time
Pants

Toilet

Pants

Toilet

Pants

Toilet

Pants

Toilet

Pants

Toilet

Pants

Toilet

Pants

Toilet
7:00













8:00













9:00













10:00













11:00














Pants column – In the column marked PANTS you will record every hour either:
D if he is dry, U if he has urinated in pants, BM if he had a bowel movement, U / BM if he had both

Of course, you don't have to wait an entire hour. Anytime you think he is wet, check him, write in the time on the chart, and record the results.

Over a period of 1 or 2 weeks, patterns of data begin to emerge.

Is the child dry for significant periods of time?

Is there some regularity in his wetting/soiling?

Does he show any indication that he is aware of being wet or soiled?

Does he pause while wetting or soiling?

A child for whom the answers to all of these questions is "no" is probably not ready for a goal of independent toileting, although a goal of establishing a positive bathroom routine may still be very appropriate.

During the charting phase, we should also be assessing other aspects of the process of toilet training. As the data is being collected,

Is the child beginning to pick up on the routine involved?

How are the child's dressing skills?

Does he show any particular fears or interests related to the bathroom (reaction to flushing, water, toilet paper roll, or other bathroom fixtures)?

What is his attention span?

At the end of this assessment period, we will have the data needed to establish an appropriate goal to be working toward.

A task analysis of the steps of toileting can give a picture of all the skills needed. Assessing the child's current skills on each step of a task analysis will help us to choose a realistic goal and remind us not to try to work on several new skills at once. Task analyses can be global or very specific. Each step of a task analysis can be further detailed to determine teaching steps. Examples of a global task analysis and a more detailed analysis of one step are illustrated below.

Task Analysis Further Task Analysis

1. Enter the bathroom (Does not do fasteners)
2. Pull clothes down
a. Allows Adult to pull
b. Pull from calves
c. Pull from knees
d. Pull from thighs
e. Pull from hips
f. Pull from waist
3. Sit on toilet
4. Get toilet tissue
5. Wipe with tissue
6. Stand up
7. Throw tissue in toilet
8. Pull clothes up
9. Flush toilet

II. Physical Structure

One of the principles of Structured Teaching involves structuring the physical environment for success. Our goal is to create a meaningful context for an activity to take place. We accomplish this through the creation of clear boundaries and the reduction of distractions.

When beginning the toilet training of a child with autism, we want to help the child learn that this set of behaviors (elimination) is associated with a particular place (the toilet). Moving all diapering, cleaning, and toileting-related dressing to this setting helps the child realize the purpose of this room. Another way to say this is that we are trying to "isolate the concept" of where toileting-related behaviors take place. Some families assign a half-bath in their homes to toilet-training, since the full bathroom has many objects that are associated with other activities and may be very distracting or confusing (bathtubs and showers, bathing toys, toothbrushes, makeup, laundry hampers, scales, etc.)

A second goal for creating clear physical structure to assist in toilet training is to create an environment that is secure and not over-stimulating. The child will be calmer and more responsive with good physical support for his body. Think about adding foot support, side rails, opening reducers, or other physical supports. Think also about the plumbing noises and echoes of many bathrooms. Many children appreciate soft music playing or the addition of sound-absorbent materials.

III. Establish a Visually Supported Routine

After establishing an appropriate goal for the child, it is important that we teach using visual supports for each step toward this goal. We must create a visual system to let the child know the step or sequence of steps to completing the goal.

At the most basic level, a transition object may be used to let the child know that the toilet routine is beginning. An object that is associated with toileting may be given to the child to serve as the transition object that takes the child to the correct location. Or, this object may be placed in a zip-lock bag that is glued shut. Or, this object may be glued to a card. In any case, it serves to initiate the bathroom routine, helping the child know what is to occur and where. At a more abstract level, a photograph or drawing of the toilet or the printed word on a card may given to the child or placed on his schedule to accomplish this goal.

Once the transition to the toilet area has been made, it is important to continue to visually support each step of the toileting routine. We need to let the child know each step he is to accomplish, when the sequence will be finished, and what will happen when the sequence is finished. Again, using an object sequence, a picture sequence, or a written list are all ways to communicate this information to the child. It is important that the child sees the information, manipulates the system so that he recognizes it's connection to his behavior, and has a clear way to recognize when each step – and the entire process – is finished.


The inclusion of a concrete, visual "what happens when I'm finished" piece of information is an important part of this system. For some children this may be looked at as a motivator or even a reward. For many children with autism, it is equally or more important as a clear indication of closure. Task completion is a powerful motivator for most people with autism.

Sunday, May 4, 2008

Visual Thinking Teaching Suggestions

Teaching Suggestions


Replace the learned helplessness of "waiting for ideas to happen" with learned confidence. That confidence will be based on successful practice and achievement through disciplined visual thinking.


Teach students to let ideas evolve out of the practice of ongoing visual thinking rather than being determined by verbal reasoning.


Focus as an instructor on "scaffold thinking" even though the student may be deeply involved with verbal explanations of personal meaning.


Teach and personally value observational speed (quickness) in capturing visual events.


Insist that all mental events must be given some form in the exterior world of materials before they are considered valid visual thoughts.


Stress looking for the 2nd, 3rd, and 4th "right" answers to every problem.


In order to pose the right hemisphere new challenges for synthesis, shift:

-The focus of attention

-The sequence of input

Make all activities and exercises specific to one thought process at a time in order to attain the maximum in learning efficiency


Attention exercises should teach that attention is undivided, follows interest, is dynamic, and is a constant process of discovery.

Thursday, April 24, 2008

A New Social Network for Moms Fighting Autism Launches Today

Web site brings moms coping with autism closer together to vent, cope and support.

Irvine CA (PRWEB) April 23, 2008 -- In honor of autism awareness month, an Orange County man launches a social network called Moms Fighting Autism (www.momsfightingautism.com). The social network aims to connect moms of children with autism.

Members of the Moms Fighting Autism social network can immediately setup journals, photo albums, interest profiles and friends lists. The social network allows users to comment on photos, journals and send notes of support to others coping with autism.

"The purpose of the Moms Fighting Autism social network is to provide a place for moms to cope, vent and support each other. Autism can be overwhelming and there needs to be a place to feel welcome. Fortunately other moms have gone through the same situation who are willing to help them," says Ernest Priestly.

Autism effects one out of 150 children in the United States and there is no known cause or cure for it. There are social networks such as Myspace and Facebook that are more general but MomsFightingAutism.com focuses on only autism.

"... Reading about moms who are going through some of the same challenges that I have with my son has lifted my spirits up. I'm not alone and that is the best feeling in the world. Even though they maybe miles away we all can reach out, share, talk and that's just great. It's worked for me so I just want to say thank you for this site," says member Keyanna Rogers.

For the past 4 months, the site has enrolled 1,500 beta test members evaluating the site features and performance. It was launched officially today.

About MomsFightingAutism.com

Moms Fighting Autism is a social network for moms of children with autism. This social network provides the tools and services that allow moms to vent, cope, support and learn from each other. According to Autism Speaks, autism spectrum disorders are diagnosed in one in 150 children in the United States.

For more information visit www.autismfightingautism.com

CONTACT:
Ernest Priestly
press@momsfightingautism.com
714-335-8176

Friday, April 11, 2008

Autism Caught On Tape

Computer Scientists Use Technology To Help Children With Autism


Computer scientists have devised two tools to help people interact with autistic children. Videotaping interactions allows teachers or parents to replay situations and evaluate the cause of particularly good or bad behavior. Cataloging actual data, rather relying on memory or interpretation, proves to be a more accurate measure of a situation.


Autism affects one in every 165 children. For the parents and teachers of those boys and girls ... knowing what works and what doesn’t can be key to their development. Now, new technology is helping them help these kids.

From riding on dads back ... to bouncing around the kitchen. There's little down time in the Abowd home. Both of Gregory Abowd's sons have autism.

"With Aiden you have to work really hard to get him to say anything. With Blaise you have to stop him from what he wants to say, to get him to actually communicate with you," Abowd told Ivanhoe.

It’s his boys who gave this human computer interaction professor his next project at Georgia Tech.

"It was very disappointing for me to see how much people were relying on their memory to figure out what was going on," Abowd said.

CareLog allows parents and teachers to catch moments on tape.

"So what happens here there is a camera in the living room actually pointing down ... if something interesting happens ... I just press a button. When that behavior occurs ... sometime before and sometime after the incident is now saved to go over and take a look at," Abowd explained. This takes the memory out of the picture.

For example, often times when a child is trying to get the attention of his teacher it can get frustrating. When she doesn’t see him ... he may begin hitting himself. Now the teacher knows why.

"Someone can observe it and describe it to you, or you can see it," Abowd said.

Another tool called the Abaris also catches moments on tape. A teacher can compare video to her notes, taken down with a special pen and paper that automatically charts a child's progress on a computer. She may then realize a student is distracted. The teacher then can get more on his level to help him focus.

"They’d see themselves doing therapy and say oh my gosh, I didn’t even realize I was doing that," Julie Kientz, computing expert at Georgia Tech, told Ivanhoe.

Two ways technology is helping at home and in the classroom.

Wednesday, February 13, 2008

Autism:P.L.A.Y. Project

Autism is a developmental disorder that affects young children and the number of cases are growing at an alarming rate.

Today a leading expert on autism visited the valley to talk about a therapy he created that is showing promise for a lot of children.

The number of children with autism is growing fast.

Dr. Rick Solomon, Autism Expert: "There's no doubt that it's gone from being recognized from one in 10,000 to one in 150. And among boys it's one in every 88. So something seems to be going on."

Dr. Rick Solomon is a leading expert on autism a brain disorder that begins in childhood and affects communication and social development.

Solomon created the "play and language for autistic youngster's project" known as the "P.L.A.Y. Project." consultants make monthly visits and train parents who have children with autism how to play with them in a way that promotes their development.
Solomon: "Children with autism tend to want to go off and play by themselves but if you know how to play the right way you can truly engage your child."

The play project is for kids from 18 months to five years old.

On Tuesday Dr. Solomon visited Fresno and talked to parents and therapists about it. Fresno started a "p.l.a.y. project" a year ago through the Easter seals and is working with 20 families.

Bruce Hinman, Easter Seals President: "Parents can't say enough about the progress they see with their children."

Therapy and treatment that normally costs tens of thousands of dollars a year is free for families thanks to two generous grants.

Hinman: "We're hearing stories that parents are getting a hug from their child for the first time at three or four years old hearing them say 'I love you' when they were told they would never talk. It's just phenomenal.

The two other cities in California with P.L.A.Y. projects are Monterey and Sacramento but it will soon expand into the Bay Area.