Sunday, November 16, 2008

Troy, Mo., mom reaches out to help kids understand autism

Troy, Mo., mom reaches out to help kids understand autism
By Jessica Bock

TROY, MO. — JoEllen Kessler had been in front of her son's class for only a few minutes when one of the second-graders asked, "How did Ryan get autism?"

"We don't know. No one knows, really," Kessler said.

Parents like Kessler still have lots of their own questions about autism. But what brought the stay-at-home mom, 41, into her son's classroom recently was the answers she has about Ryan.

Pushing aside her nerves, she spoke to the class fueled by hope that a little education about autism will go a long way with her son's classmates.

"You guys probably notice Ryan does odd things," Kessler told the class. "I'm here because I want to help all of you understand Ryan."

Chances are, kids these days are going to meet someone in their life with autism or a related disorder. Schools now know of more children with autism than ever before. In Missouri, the number of students with autism has increased from 934 about 10 years ago to more than 5,000 today.

Those increasing numbers of students with autism mean schools are challenged to develop plans for their education and train teachers and staff. Teaching the other students about autism can sometimes be an afterthought.

Like other children with autism, Ryan, 7, has trouble talking and other issues that can make it difficult to make friends.

That's why, after hearing about "The Autism Acceptance Book" for children by Ellen Sabin, Kessler decided to speak to her son's class at Boone Elementary. The book explains autism, and Kessler brought a copy with her to class.

School officials encouraged Kessler, who has since spoken to other classes at the school and has more presentations planned. Students see Ryan and other kids with autism each day in class,

at lunch and on the playground and know they are different, but they didn't really understand how.

"I think teachers in general are overwhelmed with responsibilities, and we don't always feel like we're the experts in everything," said Lisa Hamlett, a counselor at Boone. "Hearing it straight from Ryan's mom was really beneficial for everyone."

Kessler said it isn't easy. "But you're the mom. You're the advocate," she said.

Autism experts say what Kessler is doing is important and somewhat uncommon. Most parents don't feel comfortable enough to give a school presentation, said Staci Bowlen, a director with the Judevine Center for Autism, which offers support to children and adults with autism and their families throughout Missouri.

"There is such a need for this," she said. Children with autism often don't have the same social skills as others, and kids sometimes focus on those differences. They're curious, and hearing from a parent gives them the opportunity to ask questions, Bowlen said.

During her time with Ryan's class, Kessler brought one student to the front and asked the other students to make soft buzzing noises while she tickled the back of his neck. Then she asked him to try and answer a math question. The boy blinked a few times and stared back at the class, unable to respond.

"It was hard to concentrate, right? That's what Ryan feels every day in the classroom," Kessler said. "These things don't bother most people very much. But some people with autism feel their senses very, very strongly."

Those conditions are probably why Ryan will sometimes walk on tiptoe, stick out his tongue or tap too hard during a game of tag on the playground, Kessler explained to the kids.

Having Ryan in a class with children who understand that they can help is a great asset for Ryan's development, Kessler wrote in a note sent home to parents the day of her presentation. "The best tool for any child with autism is a strong support group."

Before she left, Kessler told them Ryan likes camping and four-wheeling, and she encouraged them to ask him to play.

Nodding her head, one girl said, "I'll ask him every day."

Friday, October 24, 2008

10 Myths About Autism

10 Myths About Autism
Experts Examine Misconceptions About Autism
ABC News Medical Unit
Oct. 23, 2008

As the number of Americans diagnosed with autism spectrum disorders climbs, so, too, does the number of questions surrounding this disorder. Namely, what is autism, and what is causing a rise in autism diagnoses among adults and children nationwide?

Amid these questions, television shows and magazines feature a barrage of stories and imagery -- families rallying for and against vaccines, debates between medical experts pointing to both genetic and environmental causes, and images of individuals diagnosed with autism who struggle to speak and function independently, while others can interact with others and are able to hold jobs. For many, these competing messages may make this already complex condition even more confusing.

Fortunately, doctors and researchers are learning more about the causes and characteristics of autism.

The following are answers to 10 common myths, that may help us better recognize the range of symptoms we call autism spectrum disorders.

Myth: Autism is an emotional or mental health disorder.

While physical or social behaviors of individuals with autism may suggest that they have a psychological disorder, autism is actually a biological illness that affects the brain's growth and development.

"In the case of autism, the parts of the brain that are most affected seem to impact three areas of functioning," said Michael Alessandri, executive director of the University of Miami's Center for Autism and Related Disabilities. "Social behavior, communication and restricted and repetitive rituals and routines are ways that the child or the adult with autism interact with the environment."

Although autism is now understood to be a neurodevelopmental disorder, Alessandri, an expert for's OnCall+ Autism section, said autism can still be considered a complex disorder because its range of symptoms is so diverse.

"Scientists and clinicians now understand that autism is not a singular entity, but rather, a variety of syndromes that ... create the autism spectrum disorders," said Alessandri.

Myth: There is an autism epidemic.

The word "epidemic" often implies a sudden burst in the number of individuals within a fixed time who have, in this case, autism.

Although the CDC reports that one out of 150 children born have an autism spectrum disorder, some experts are quick to question whether a surge in autism cases is actually occurring. Some are more likely to link the upshot of numbers to the combination of a broader definition of autism, a wider spectrum, and an earlier diagnosis.

"The condition has not become more widespread, but there is more diagnosis of autism," said Dr. Bob Marion, director of Children's Evaluation and Rehabilitation Center at Albert Einstein College of Medicine in New York.

Sheila Wagner, assistant director of the Autism Center at Emory University in Atlanta, added that more awareness of symptoms has allowed more people to identify individuals who have autism.

"There's a lot of media exposure to autism, in television and movies," said Wagner. "This has made [autism] more recognizable in the lay population."

Myth: Autism can be cured.

Some parents may allude to a certain diet, medicine, or set of behavioral treatments that have cured their autistic children, where other parents may try the same mode of treatment and see no results. While there are treatments created to improve an autistic child's ability, there is no known cure for autism.

"We do know that with early intervention with younger children and Applied Behavioral Analysis, we can improve a child's functioning," said Marion.

Applied Behavior Analysis, or ABA, is one form of therapy for newly diagnosed children. It includes repeating behavioral activities to improve a child's social and physical functions.

According to Marion, there is no blanket treatment for autism, and it is up to the individual's doctor to assess what treatment will offer the best benefit for each autistic child.

In some cases, Marion said, behaviors, including eye contact, interaction with others and development of language skills, will significantly improve -- but the underlying biological disorder will not change.

"And that is definitely not a cure," he said.

Myth: Autism is the result of cold and unemotional parents.

In the 1940s, Austrian doctor Bruno Bettelheim theorized that autism was a result of parents, especially mothers, who did not love their children. Children in such situations would withdraw and become autistic, Bettelheim believed.

However, researchers have thawed the "refrigerator mother" theory. According to medical experts, a child's autism diagnosis has nothing to do with how the child is raised.

"We don't know if there are any things that a parent can do or not do, conclusively, will determine whether their child gets autism or not," said Dr. Daniel Geshwind, director of UCLA's neurogenetics program and center for autism research. "Most of the evidence right now points to there being a very strong genetic predisposition in most cases of autism, but not all."

Myth: Individuals with autism always have hidden or exceptional talents.

Stephen Wiltshire, 34, is best known as the human camera. He can replicate architectural designs and landscapes down to each blade of grass -- even if he is only given one opportunity to observe the area he is drawing. Wiltshire has reproduced panoramic scenes of Tokyo, Rome and London by memory after one short helicopter ride over each of the cities.

Wiltshire is an autistic savant. That is, he has extraordinary cognitive skills that allow him to recall details of designs, numbers and measurements that are normally considered too difficult to remember.

The concept of an autistic individual as a savant may have been popularized by Dustin Hoffman's character in the movie "Rain Man."

But while Marion acknowledges that there is a minority group of individuals with autism who have unusual islets of skills, savants are an unrealistic portrayal of the majority of individuals on the spectrum. He said most do not have talents or skills that distinguish themselves by extraordinary talents.

"There are strengths and weaknesses in every child," said Marion. "It's important for every child with autism to have a multidisciplinary evaluation by health professionals who have experience in assessing a child's skills and deficits, to come up with an educational plan that will benefit the child the most."

Myth: Repetitive or ritualistic behaviors should be stopped.

One of the classic indicators of autism is repetitive and ritualistic behaviors, according to the Diagnostic and Statistical Manual of Mental Disorders (DSM IV), a physician's tool to diagnose autism.

While these behaviors -- which can include hand flapping, banging on walls or rocking back and forth -- may seem odd, they do have a purpose: they can be calming; they can feel good; and they may help the individual communicate with others, said Wagner.

Repetitive behaviors may only pose a problem if they begin interfering in family life or if they prevent those with autism from functioning independently, Wagner added.

However, according to Dr. Pauline Filipek, associate professor of pediatrics and neurology at the University of California, Irvine, a child may learn to outgrow repetitive behaviors.

"Often, as an individual gets older, they learn that such behaviors make them stand out in society, and they learn to miniaturize those behaviors," said Filipek.

Myth: Individuals with autism are unable to build social relationships.

"This is a generalization and needs to be individualized because the spectrum is so wide," said Marion.

In short, social relationships are possible for some individuals on the autism spectrum, but not for others on the most severe end of the spectrum, Marion said.

The DSM IV, which includes diagnosing guidelines for autism, lists "impairment in social interaction" as one indication that an individual can have an autism spectrum disorder. But not every child on the autism spectrum will have the same degree of difficulty connecting with others.

"At the most severe end of the spectrum, yes, that's true," said Marion. "But there is a multitude of children who have friends, and even some who do have close relationships."

Myth: Autistic individuals are a danger to society.

"It is a disservice to think that all people with autism are dangerous," said Wagner.

The idea rises from numerous news stories of individuals diagnosed with Asperger's syndrome, a high form of autism, who have been accused of burglary and, at times, murder.

However, if you look at the entire population of people on the autism spectrum, the number of people involved in crime is small, said Wagner. If someone with autism were to act out, it may be due to frustration or perhaps physical or emotional overstimulation, not necessarily malice, she said.

Tuesday, August 26, 2008

Child with autism wanders away from school

LANTANA, FL -- A ten-year-old with autism wandered away from his elementary school on the first day of class without anyone noticing.

Tatrisha Williams says she notified her son's school, Starlight Cove Elementary in Lantana, that she would pick him after class last Monday.

She claims the school even called her during the day to reconfirm. But, when Williams arrived at parent pick-up looking for her son, Joseph, he was nowhere to be found.

She claims she cried and panicked, and rushed back to her home.

There, on the doorstep, she found Joseph, soaking wet. Williams says he walked home, alone, in the rain.

Although their house is only about a block from school, Williams worries something terrible could have happened.

She tells WPTV NewsChannel 5, "He could walk a block; someone still could snatch him or he could get hit by a car. Anything, anything can happen to him."

She also worried Joseph could have had a seizure on the way home.

Williams explains, Joseph has a seizure disorder, and was brought to the school clinic after showing symptoms earlier in the day.

Joseph speaks very little, but told his mom, "I walked by myself...I wanted to see if you were at home."

Knowing his story, Williams now wants the school's explanation.

She wants to know, "How can a special needs child get away from so many adults that are supposed to be looking out for the kids safety."

Willimas goes on to say, "I would just like them to be alert, especially for the special needs kids because they can't look out for themseleves and anything can happen to them."

A Palm Beach County school District spokesperson didn't give an explanation, but tells WPTV NewsChannel 5, "We made a mistake and we have corrected it."

She goes on to say, "It won't happen again."

Thursday, July 31, 2008

The impact of autism and a mom's hope

New Island school adds to services for growing population
Sunday, July 27, 2008

STATEN ISLAND, N.Y. -- Like most parents, Marilyn Sarin didn't take it lightly when she found out her daughter had autism.

"I cried," she said. "I cried and cried. When she was first diagnosed, I think it was one of the scariest things I've ever been through."

The Pleasant Planes resident wondered if 2-year-old Gia Nicole would ever lead a normal life, whether she would ever learn to speak and socialize with others her age. She also wondered if she was the only one with those fears.

"It's really hard because other people don't understand what you're going through," Mrs. Sarin said.

Her outlook changed once Thursday's Child moved to Staten Island. An early-intervention school for kids with autism, Thursday's Child opened in Dongan Hills in March, bringing with it a support system for parents like Mrs. Sarin and innovative learning techniques for children like Gia.

Autism spectrum disorders are developmental disabilities that can be diagnosed to children who are about two years old and have shown impairment in social interaction and problems with communication. It is also marked by restricted or repetitive behaviors.

Dr. Helen Murphy, one of the school's founders, said Thursday's Child is new to the Island, but not new. She has been running a branch in Brooklyn for about 10 years and recognized a need for a school here when she noticed a lot of Island families traveling to the branch in Brooklyn.

Thursday's Child is a public school and tuition is funded by the city and state. It is among a handful of schools on the Island for children with autism though its focus on early intervention is rare. Dr. Murphy has welcomed about 20 Island families to the new school since it opened in March.

In the classroom, students receive one-on-one attention from a teaching assistant and practice the three R's: Repetition, reinforcement, and reward. Jeanne Ward, the school's educational director, said children with autism are so easily distracted that they need to practice even the simplest of behavioral actions over and over again to learn them.

She said parents typically come to the school with goals that are broken down into "small, achievable tasks." For example, if parents want their children to learn to talk, the school would teach children to sit and be attentive and make eye contact -- basic skills that can be challenging for kids with autism.

Children typically spend about 10 hours a week at the school and another 10 hours with a therapist at home, Ms. Ward said.

Throughout the day, teachers scribble furiously on clipboards, marking down every step of a child's progress. An identical set of files are sent home so parents and therapists can pick up where the school left off, Ward said.

On a recent tour of the school, Rob Mignone, a teaching assistant, plopped down on the carpeted floor next to 2-year-old Aiden Miguel Lozado from Meiers Corners, a sea of Lego blocks spread out before them.

Mignone asked Aiden Miguel to pick out a blue block and place it on top of another blue one. Instead, Aiden Miguel got on his knees, turned around and began to crawl away.

"Where are you going?" Mignone said, gently lifting him and sitting him back down. He gestured once more toward the blocks and Aiden Miguel began to put them together, one by one.

"Great job," Mignone said. "Now let's keep going."

It's that sort of patience, persistence and encouragement that parents say has paid off.

Kari Basile, a Great Kills resident, said that her 3-year-old son, Paul, has been at the school for a few months and that she's amazed how quickly he's improved.

"He went from grunting and pointing to speaking in complete sentences," she said. "He can participate in an actual conversation, which he never used to do."

Her favorite part of the school day is when Paul mingles with other children -- some autistic, some not -- at an on-site day-care center that is open to anyone in the community. As Paul paints pictures of animals and reads Barney books with some of the other children, he learns how to be around other people without feeling awkward or afraid, Ms. Basile said.

Anyone interested in learning about Thursday's Child can walk in to the school on Seaview Avenue or call 311 and ask about the Early Intervention Program. TAG:Newhouse News Service material was used in this report.

Amisha Padnani covers education for the Advance. She may be reached at

Against Code, Boy's Play Area In Jeopardy

(WCCO) The family of a boy who has autism is fighting to keep something that seems pretty basic: a place to play.

"The deck was put up here to provide my son, who has autism, a safe play area," said Matt Foote of Paynesville, Minn.

According to Stearns County officials, the deck may have to come down because it was built without a permit, but the Foote family isn't removing the deck without a fight.

"You hear him out here like with his little squirrels, and he'll go inside and get his stuffed animals and he'll bring a blanket out and with his play grill -- he'll cook 'em food," said Matt Foote about his son Alex who has autism.

Five-year-old Alex doesn't know that he and his backyard friends might have to find another place to play. His parents say it wouldn't be safe for him to wander in the yard that backs up to Rice Lake.

"So if he were to have an open play area in the grass, the fear would be the lake," said Matt Foote.

Stearns County officials didn't want to comment on the case but they did say that the Foote family did not get a permit, and that the deck violates the state setback rule of 100 feet.

"When you step up, if it's less than 12 inches from the ground, you don't need a permit to build. There is not a permit to build until it becomes a deck," said Matt Foote.

"Well, unbenounced to us when the plans were drawn up, they we were always referred to it as a deck. Stearns County was referring to it as a patio. This patio became a deck when we put the railings up," he said.

The county did offer a compromise -- move the deck to the other side of the house. But there are no windows for the parents to watch Alex. The family was also told they could build a small, enclosed gazebo.

"That's tantamount to putting him in a dog kennel. Would you want to put your kid in a dog kennel? I mean 'here son, you can go play but you're stuck in here," said Matt Foote.

The family is appealing the county's decision and will be in court on August 21.

College Scholarship Awarded To Boy With Autism

Amie Bell says the LearningRx program changed her son's life. Nine-year-old Tripp Bell had been in Special Ed since kindergarten. Now, he's been awarded a college scholarship.

LearningRx's learning exercises are like games to help Tripp Bell focus and improve his memory. For years, Bell found it hard to concentrate.

"I got a lot of bad grades," says Bell.

His parents tried changing the nine-year-old's medication and diet and added allergy injections. It didn't work.

"He would go home and call himself stupid," says Amie Bell.

"I always disappoint my mom," says Tripp Bell.

Bell has autism, ADD, a learning disability, and severe short-term memory loss, but normal intelligence.

"I got bad grades. I never wanted to get bad grades."

That was before he enrolled in LearningRx's six- month program.

"We're not working academically. We're working at the root level to improve those skills we're born with," says Neal Best, LearningRx of Little Rock Center Director.

After two months of training exercises, his mother says the time she spent with him on homework was cut in half. He also won the program's National Student of the Year award along with a $1,000 college scholarship and a trip to Colorado.

The center director says bell has gained an average of six years in his mental abilities. No longer does he utter the word "stupid."

"I feel smart," says Bell.

He is no longer enrolled in Special Ed. The biggest reward his parents say this program boosted his learning ability and his self-esteem.

Tuesday, July 29, 2008

Taoiseach supports bid to have autistic boy enrolled for new term

By Niall Murray, Education Correspondent

A MOTHER who has spent four months trying to find a school in which to enrol her autistic son is hopeful that the support of Taoiseach Brian Cowen will help her case in time for him to begin classes in September.

Casey Naughton was expelled from his local school in Daingean, Co Offaly, because staff were not equipped to deal with his behaviour that sometimes disrupted classes. The nine-year-old has Asperger’s syndrome, a form of autism which sometimes cause outbursts and tempers.

But despite his mother Lisa’s attempts to enrol him in more than 20 schools to date, none has accepted Casey for next year. She brought her frustration to Tullamore on Friday, where Mr Cowen was opening a new social welfare office, along with Social and Family Affairs Minister Mary Hanafin, who was Education Minister until two months ago.

"They brought me in for a private meeting of about 40 minutes and the Taoiseach was very understanding of my situation as a family man," she said.

"They couldn’t make a specific commitment that I would find a school to take Casey but they said they would try to do something for me in the five weeks left before schools open," said Ms Naughton.

She has written to Education Minister Batt O’Keeffe a number of times about the situation since he took office in early May but said that she has not had any response. "I am a bit more hopeful now that I know the head of the Government might be able to push some buttons, but it shouldn’t take bringing a placard to an official function to be making progress. If schools were properly resourced to deal with kids like Casey, there would be no problem," she said.

Ms Naughton has been supported by the National Educational Welfare Board in bringing appeals against a number of schools which have refused to enrol her son. The latest appeal is due to be heard by the Department of Education next week, with a number of other refusals due to be the subject of appeal hearings in the coming weeks.

"It was upsetting for Casey being with me last week when I bought a new uniform for his brother because he’s wondering if he’s ever going back to school himself. And then he worries if he’ll make friends at any new school he does finally get into," she said.

Ms Naughton said children like Casey who are relatively high-functioning are not suited to dedicated autism units attached to some primary schools, but mainstream schools are not given enough resources to help teach them. Casey had been receiving home tuition between being expelled in February and the end of June but his mother had to borrow the €4,500 cost, as reported by the Irish Examiner last week, with the reimbursement from the Department of Education only being completed last Friday.

Sunday, July 27, 2008

Couple provides Temecula schools foundation on which to build efforts for autistic children

The Press-Enterprise

Three years ago, Mark and Kathy Anselmo held an auction to raise money for their autistic son's preschool class.

The event was a modest success for the parents, who were not expecting to rake in millions of dollars. Their newly formed nonprofit, Our Nicholas Foundation, came away with $20,000.

"Our initial goal was simple, a little wish list," said Mark Anselmo.

They donated funds to Ysabel Barnett Elementary School in Temecula, which had experienced cutbacks, helping to make sure the progress being made by their son, Nicholas, then 4, could continue.

Today, the foundation has given thousands of dollars to numerous Temecula schools and geared up for a first-ever Autism Summit, which will provide information on research, education and therapies to parents of autistic children.

"The summit is a whole new level of interaction for us. We're just playing quarterback," Mark Anselmo said.

On Tuesday, more than 50 vendors from the Inland area and Los Angeles, Orange and San Diego counties will be present. The event at Rancho Community Church is free, and child care will be provided.

Many parents in southwestern Riverside County travel far for their child's therapy. The summit is an opportunity to have all the professionals under the same roof.

When their son was diagnosed, Kathy Anselmo said, "we didn't know the next step. You're diagnosed and then what?"

Autism is the fastest-growing disability in the United States, affecting one child in 150, The spectrum disorder shows itself in abnormal social interactions, communication and behavior. No two children manifest the same symptoms, and therefore, no two children will respond the same way to solutions.

As a parent, you want to try everything for your child, she said.

Finding Their Path

"We're just two parents of an autistic child trying to find our own path," Mark Anselmo said.

Nicholas Anselmo was diagnosed at 2. By the time he was 4, he was making great strides at a special-needs preschool class at Barnett Elementary. Many students lost the one-on-one attention when budget cuts forced the district to reduce the staff, Anselmo said.

"That's the reason we started this foundation. Teachers were taking money out of their own paychecks to buy things," Kathy Anselmo said.

Nicholas, 7, will start second grade at Tony Tobin Elementary in the fall.

The Temecula Valley Unified School District said in a statement it was "extremely fortunate to have such a wonderful partnership with the Our Nicholas Foundation."

The foundation has provided more than 1,500 items to Temecula teachers.

It transformed an empty classroom at Barnett into additional space for special-needs students. At Vintage Hills Elementary, it built a sensory-integration room valued at $4,000.

It supported the expansion of Peer Buddies, a popular Erle Stanley Gardner Middle School program that assigns a handful of students to help those with special needs. It is now at a few elementary schools, and thanks to funds from the foundation, students proudly sport T-shirts and sweatshirts.

"It creates wonderful children who turn into wonderful adults," Mark Anselmo said.

The foundation has raised more than $60,000 since 2006, when it held its first auction at the Pechanga Resort & Casino.

The Anselmos have been able to satisfy every wish list received. That may change.

"Usually, we get an onslaught over the summer," Mark Anselmo said, though he predicts this year's budget cuts will make the needs greater. "I don't think it's going to be pretty."

Plus, the foundation, which has usually focused on Temecula schools, began sending fliers to Murrieta.

"Our eyes aren't aglow with huge numbers. That's why we're trying to bark up the grant tree," he said. They have received grants from Temecula and the Roripaugh Foundation.

Still Growing

Still, the Anselmos' foundation continues to grow.

It has created a board made up of local professionals and the parents of autistic children.

It began a library to lend out often-expensive research books.

It hoped to open a resource center for therapy sessions.

The Anselmos initially dreamed of opening a center to house various therapies, subsidized by the foundation and offered to parents at minimal cost. That dream quickly faded, however, because the cost to the foundation would exceed $2 million a year.

They lowered their sights to a scaled-down version. For about $250,000 a year, the foundation could provide computers and space for therapy sessions.

"We're helping schools now, but people are asking what's going to happen 10 years from now," Mark Anselmo said.

There has been an explosion of new autism cases among young children, but others are growing into adulthood now.

Though the foundation has surpassed its initial goal of donating tools to Nicholas' preschool class, the Anselmos still stick to their roots.

"This is a business we've evolved into without losing why we started," Mark Anselmo said.

Saturday, July 26, 2008

Dealing With Autism As Children Become Teenagers

(WCCO) Life for most teenagers is one big thrill ride. This is also true for 15-year-old Jake Brasch, who is among the growing number of teens in Minnesota living with autism. He literally enjoys the ride when he's at places like Valleyfair, but when it's time for school, life tends to lose its thrill.

Dawn Brasch, Jake's mother, said he would like to go sit with typical kids, but doesn't have the skill to do that.

"He anticipates being rejected or being laughed at or being turned down so he won't attempt to go break into a group," she said. It's difficult for her to tell him it's OK to try because he's so afraid to approach peers.

Dawn found out Jake had autism when he was 18 months old. She said she could tell there was something different because he has a twin brother. Jake and Michael both spoke just after a year, but Jake lost his ability to speak just a few months later. He didn't speak again until he was 5 or 6.

"Michael took on a lot of responsibility for his twin brother when he was very little, saying, 'I must be a bad brother because my brother can't talk,'" Dawn said.

She said things have gotten better as they have gotten older. Now teenagers, Michael and his brother actually have things in common, such as working out.

"He's always trying to get stronger. He always wants to look good for the ladies," Michael said.

Jake said he wants to have a girlfriend, but his mom isn't sure if he could or how she would deal with it. Dating can be an issue for parents of young adults on this spectrum, but that doesn't stop teens with autism from wanting to take girls out.

Cindy Merriam's 13-year-old son John, who is considered high-functioning, is taking an interest in girls as well.

"I had a hard time getting his hair cut because the girls liked his hair curly," she admitted.

John told his mother there is one special girl he wants to date.

"I say, 'I just want to take you out on a date.' That's what most of my friends do, and I'm going to do the same thing," he said.

His father tried to explain to him the girl would have to go willingly, but John was more concerned with getting her out of the house.

"You're going to help me get her outside whether she likes it or not!" John told him.

John's father said the most difficult part of having a child with autism is adjusting expectations and realizing it is, at least currently, a life-long diagnosis. But he said John still enjoys doing typical teenage things, such as playing soccer and running track.

"He's never going to be the star of the team, but you're just happy he can do it," he said.

Another issue many teenagers with autism share in common with other adolescents is sensitivity towards peers' perception of them. John said he occasionally gets a hard time at school.

"There are some people who are not nice and think I'm crazy and stupid and a loser and a stupid retard," said John.

"You have to accept it in your heart, and it's not easy," Cindy admitted.

Because of the mood swings and rage that kids with autism go through, the Merriam family had to put John on medication.

"We actually went a long time and would not allow the medication," Cindy said, until pediatricians told her withholding medication was doing him no favors.

Dawn Brasch put Jake on medication as well.

"I would prefer not to, but I also can't have him -- at this age and this height and this weight-- beating me up because he's so frustrated he doesn't know what else to do," she said.

The rollercoaster emotions teens often encounter can be much more difficult for those with autism to understand and deal with. Jake said his classmates can be mean sometimes, which makes it hard for him and his siblings.

His sister Kelsey Brasch said she wishes he was a normal kid some days, "but then some of the stuff he does, you just don't see other kids do that much. So it's fun to see that."

As hard as being a teenager has been, Jake's special education teacher Angie Gamades said his future looks bright

"I see him in the future being able to do something that he can really excel at with kids," she said. "Jake is very special."

According to Gamades, Jake has shown interest in nursing, a profession she said she could see him in. He told WCCO's Amelia Santaniello he also aspired to becoming a movie actor.

John's parents are hopeful for his future as well, though professionals have told them he probably will end up in a group home. But they aren't ready to give up on him.

"I think there's something in there; we just haven't discovered it yet," Cindy said.

Family is all that's left

Attaining, and retaining, the American dream never came easy for Rick and Yoko Cummings.

The couple - he an insurance agent, she a nurse at Little Company of Mary Hospital - lived in a modest Torrance home with their two children. Daughter Laurie, 13, has Down syndrome and autism, while their 10-year-old son, Joshua, is also autistic.

At times, Rick Cummings, a 61-year-old Vietnam War veteran, has worked two jobs to support the family, said next-door neighbor Patrick Carnahan, who has known the couple since they moved into their 1950s-era home in 1983.

As the economy worsened last fall, Cummings was forced to move his 84-year-old aunt, who has dementia, out of a skilled nursing facility and into his home because he could no longer afford the cost of her care.

"They're rich in life," Carnahan said. "They just don't have a lot of money."

Then at 8:30 a.m. last Saturday a fire swept through their Walteria home, gutting the inside and destroying virtually everything the family owned, including their now half-melted 1989 Toyota Cressida.

The family escaped just in time; Yoko Cummings, who had tried to rescue Patricia McKibbin, her husband's aunt, was almost overcome by dense smoke. She was pulled through a window by Carnahan and a friend just in time.

It was left to Gemini, the family's Australian shepherd mix, to help McKibbin.

"Gemini is the hero," said Yoko Cummings, 52. "The smoke was so thick I

knew I couldn't save Patricia by myself."

Gemini stayed with the disoriented elderly woman until firefighters arrived. Despite choking smoke and flames, the dog didn't run from the house.

"They heard (the dog) whimpering," Rick Cummings said. "They said without her whimpering they wouldn't have been able to find Patricia."

Gemini was unconscious for 20 minutes after firefighters pulled McKibbin and the dog from the house.

McKibbin has recovered.

Gemini needed two days at the vet to recover from the ordeal, including six hours of oxygen treatment. The bill came to $2,500, although the vet knocked $500 off.

But that is the least of the Cummings' problems.

They are homeless and without transportation, with two kids and an octogenarian relative requiring constant attention and specialized care. (The couple also have two grown children who did not live in the house.)

And virtually everything they owned was consumed by flames, including family photographs and even Rick Cummings' beloved old surfboard - although Carnahan hopes it can be restored.

Fire investigators suspect the blaze started when a lamp was somehow knocked over onto a couch in an enclosed patio.

Insurance would likely take care of rebuilding their home, although that could take up to a year; it's the short-term that poses a challenge for the family.

"These guys just need to get up and running," Carnahan said. "It's having a profound effect on them."

The neighborhood has rallied to their aid.

A neighbor took the family members in temporarily while they look for an apartment; McKibbin is back in a skilled nursing facility.

The local Neighborhood Watch captain issued an e-mail plea for donations.

The home of Carnahan and his wife, Valerie, became an unofficial dropping-off point for donated clothing and other items.

A retired university professor contributed a laptop computer for the 10-year-old boy to replace the one he lost in the fire. Cyberspace provided solace for Joshua even before the blaze; he has not done well emotionally since, his parents said.

Staff at Launch Preschool, which operates a program for autistic children that Laurie and Joshua attend, are holding a carwash and barbecue today to raise money for the family. On Tuesday, a neighboring family will host a bake sale and lemonade stand to raise money.

"They're an absolutely amazing family," said Sarah Perdue, a preschool staff member who has baby-sat Laurie and Joshua for seven years.

"They work so hard, so I feel horrible for them," Perdue added. "I've never seen them lose their patience with the kids and those kids are very trying."

The family has been stunned by the response so far.

"A house is a house; our life is being put on hold," said Yoko Cummings, her voice breaking. "But it's just been overwhelming how people have helped."

On Thursday afternoon, Carnahan sat outside his house and got a little emotional himself as he watched a work crew remove debris and charred belongings.

"I'm watching these people seeing mementoes from their life being brought out and dumping them in the Dumpster," he said. "The devastation they've experienced and what it's doing to their family and what it's done to their way of life."

Carnahan's voice trailed off.

"These guys are the real deal," he added. "I love these people to death."

With a neighborhood's help, the Cummingses hope to put the nightmare behind them - and get their American dream back.


Two fundraisers are scheduled to help the Cummings family with expenses:

The Launch Preschool carwash and barbecue is from 11 a.m. to 3 p.m. today at 4100 W. 227th St.

Ben Walls and his family, who live in the same Walteria neighborhood as the Cummingses, will host a bake sale and lemonade stand from 11:30 a.m. to 1:30 p.m. Tuesday at the corner of Newton Street and Weston Road.

Show challenges autistic stereotypes


Take one mother.

Add one daughter with autistic spectrum disorder.

Add a dash of music, a pinch of melody and generous heapings of passion and inspiration.

Mix well and you've got "KiSara."

Pronounced "kee'-SA'-ra," the mother/daughter singing duo of Kim Souch and Sara Sobey graced Our Friendship Centre in Lively on Wednesday afternoon.

The audience of more than 100, including clients and caregivers from hosts Community Living Greater Sudbury, as well as other local agencies, gave KiSara a warm and receptive welcome.

Dancing, stamping their feet and swaying throughout the concert, some audience members clapped and cheered as Souch and 19-year-old Sobey sang an Elvis tune from the Disney film "Lilo and Stitch" -- one of Sobey's favourite movies.

KiSara also performed some of Souch's own songs, including "Possibilities" and "Like Mother, Like Daughter."

Souch spoke to The Star about the message she hopes the music transcends to all parents and families of children with autistic spectrum disorder, and the importance of celebrating abilities and talents.

"There's too much focus on "disabilities," Souch said.

"You have so much help assessing what's wrong. Our song, 'Possibilities,' focuses on talents you can build on.

"I've been a musician for many years," Souch said. "Sara's very musical. She literally sang before she spoke."

When Sobey was three years old, her mother began to notice something different about her.

"She seemed disconnected," she recalls. "It was hard to peg down as to what it was and you go through the whole cycle."

Souch said her daughter was diagnosed with autistic spectrum disorder, more commonly known as autism, three years later.

At age 8, Sobey took to the stage, performing in school concerts. Since she was 12, she has been accompanying her mother in performances for audiences whose appreciative members offer nothing but compliments and praise.

Souch, who helped form the Huron Perth Chapter of Autism Ontario located near her Seaforth, Ont., home, said she learned everything she could about autism and how and why it occurs.

She says autism creates an atmosphere of hyper-sensitivity within the child, and that everything surrounding him or her is felt at maximum volume. She said the condition not only affects sound, but can also result in a visual "overload."

For example, a child might claim to see "particles of air."

She said society and the medical profession have come a long way from the days autism was referred to as "The cold-parent syndrome."

Because of these deep-rooted and unfounded diagnoses, Souch emphasized how important it is for parents and families to turn their experience with autism into a recipe for hope and celebration.

Sudbury's visit was part of the final leg of their "Kaleidoscope Ride" tour, which took KiSara -- accompanied by Talia Williamson on bass, Brian Mole on drums and Roger Williamson on lead guitar -- to cities such as New Westminster, B. C., Calgary and Thunder Bay.

Sara, whose rendition of "Over the Rainbow" garnered a standing ovation, was happy to talk about the music she listens to when she's not performing.

"Just about anything," she said, smiling as she clutched her treasured Disney DVDs in her hand.

She shook her head and added, "Except rap and death metal."

Sunday, June 15, 2008

Autism: Making new plans and goals for your children

Contributing Writer

Teresa and Kelley Nakoff look autism in the eyes as they go through their day-to-day lives as the parents of their 12-year-old son, Chase.

A student at Rodger O. Borror Middle School, Chase was diagnosed with severe autism in 1998, around the time of his second birthday.

Adjusting to the news of having a son diagnosed with autism took time, Mrs. Nakoff said.

“Even before your kids are born, you make such plans for them,” she said, wiping a tear from her eye. “But when you find out something like this, you just have to make new plans and goals for them.”

Mrs. Nakoff said living as the parent of a handicapped child brings with it a unique set of challenges.

“You really have to learn how to take life day-to-day,” she said. “It does get better, it does get easier — but it’s always a challenge.”

“An early intervention specialist mentioned autism to me when Chase was about a year-and-a-half, because she saw a lot of characteristics in Chase. She recommended we take him to see a specialist,” Mrs. Nakoff said. “I refused to believe it. In my quest to prove her wrong, I started reading everything about autism that I could get my hands on. What I discovered, is that a lot of the things being described are a lot like Chase.”

When Chase was 2 years old, his parents began the process of Applied Behavioral Analysis (ABA) therapy in their home. Chase went to preschool both in the Wilmington City Schools, and at the Town & Country School at the Nike Center. Chase attended school in a regional classroom specially designed for autistic children, which was housed in Lynchburg.

When the Wilmington City Schools opened its special classroom for autistic children, Chase began attending Holmes Elementary. This year, he has transitioned to Rodger O. Borror Middle School, where he is taught by teacher Debra Flint, and aided by Sharon Carr and Cindy Miller.

“He has done superb this year,” his mother said, unable to mask the pride she has for her son. “He is just going so far this year — and I think it has a lot to do with the set-up at the middle school.”

The set-up Mrs. Nakoff is talking about is one with space that allows for the accommodation of Chase’s sensory needs. Like many children with autism, Chase can become overwhelmed by the sounds, sights and expectations of a classroom. Without the ability to use words to express his frustrations, Chase has been known to show his frustrations by jumping, yelling and striking out. But — not at Rodger O. Borror Middle School.

The walking track around the gymnasium has become Chase’s refuge. When staff members see his mounting frustration, they can take him to walk a couple of laps around the gym. This allows Chase to center himself for a successful return to the classroom.

The Nakoff’s have another son, Dylan, who is a fifth-grader at Holmes. Mrs. Nakoff said Dylan, who is a part of the gifted programming offered by the Wilmington City Schools, is good with his brother.

“We’ve always told him, ‘He might be different, but he’s your brother.’ He loves his brother very much,” she said.

Mrs. Nakoff and Susan Frazier have joined up to form a support group for parents of children with autism. The group, which they call SPEAK (Supporting Parents and Educators of Autistic Kids), meets monthly.

Messages of autism awareness can be seen on many television commercials and billboard ads. Mrs. Nakoff said she wishes she could make the world understand that kids diagnosed with autism “aren’t bad kids.”

“When we’re out and people see our kids meltdown, it’s not just bad behavior. They’re not spoiled brats,” she said. “These kids have social and behavior problems that aren’t their fault. I can’t just spank an autistic kid and make it all go away — but some people still think that.”

Mrs. Nakoff is often one of the first people who reach out to families in the area who receive a diagnosis of autism for their children. “We have to be there for each other,” she said.

Her advice to them: “I share with them the best thing that was ever said to me. When Chase was really little, someone told me that he might not be what I expected, but he is still a treasure to me.”

The tears Mrs. Nakoff wiped away after she said this only go to prove that Chase, indeed, is a treasure to her family.

Friday, June 6, 2008

Gold Medal Moms Prepare To Storm Beijing

Jennie Finch thought she was busy back in 2004 when she led the U.S. softball team to Olympic gold in Athens. Already arguably the most famous softball player of all time, the media requests and business opportunities only intensified after the Games, and Finch struggled to balance work and softball with her relationship with then-fiancé, now-husband Casey Daigle.

Then an 8-pound, 10-ounce bundle of joy named Ace entered their lives on May 4, 2006, and Finch learned the true meaning of the word "hectic."

"It's like having the world in your hand and throwing it up in the air and letting it fall wherever," Finch, 27, said. "You just collect the pieces and do whatever you can."

Finch didn't wait long to tackle life as a working mom. She was at the national tryouts just five weeks after giving birth, and she and Ace hit the road with the team soon afterward, with the diapers, bottles and toys packed up with the batting helmets, gloves and cleats. Today, two years later, Finch estimates her son has spent a total of just four months in his actual house, and Ace won't be adding to that number any time soon. After he and Mom meet Dad, a pitcher for the Minnesota Twins, at home on Sunday to celebrate his second birthday (and, of course, Mother's Day), Ace rejoins the softball team as they prepare for the Olympics. That means they'll spend all but eight days on the road in June and July before heading off to Beijing.

But time away from home doesn't mean Ace loses out on playmates his own age. Catcher Stacey Nuveman's 11-month-old son Chase and pitcher Lisa Fernandez's 2-year-old son Antonio are also often with the team, and at the Beijing Olympics their strollers won't be the only ones pulled up to the sidelines. With more and more women finding that having children and pursing an Olympic dream not only go hand in hand, but can actually provide a competitive edge, this might just be the summer of the gold medal mom.

Viewing competition through mommy glasses
"I find being a mother is a huge advantage," said Melanie Roach, mother of three and Beijing hopeful in weightlifting. "Of course, I'm probably a little more tired than I might be if I didn't have children, but I think they provide me the balance that I need to keep my mind off of lifting. When I'm in the gym, I'm in the gym, and that is my focus. But when I'm not in the gym, I'm enjoying being a mom and taking care of those responsibilities ... They really do provide me with the balance that I need to be a more complete athlete."

Roach tried for years - and in two different sports - to reach the Olympics. It was not until she'd had her three children, including a son, Drew, who was diagnosed with autism at the age of 2 ½, that she gained the perspective she believes will propel her to Beijing.

"I think I was a pretty selfish athlete," she said. Roach, 33, started as a gymnast, and made the unlikely transition to weightlifting 10 years ago. She found success quickly in her second sport, but injuries thwarted her attempt to make the Olympic team.

And then Drew was diagnosed with autism.

"That really brought into perspective all the things that I thought were so devastating in my early career, in my 20s," Roach said. "All of a sudden, not making the Olympic team seemed so minute compared to having a child diagnosed with autism ... [It] made weightlifting just a bonus part of my life. It's not a stress at all. It's really something very special, and just an exciting opportunity that I have to go back and finish what I started eight years ago."

Finishing that journey takes an entire team, Roach readily admits. Her husband, Washington state legislator Dan Roach, pitches in every way that he can, and her mother, Bonnie Kosoff, recently moved in to help with the children.

"I'd like my children to learn that anything is possible if you put your mind to it, and that when you make a decision to do something like pursuing the Olympics, like I have, it needs to be a family affair," Roach said. "It needs to be a group effort, and you hope it's something that would bring your family closer together."

The team behind the team
On a recent softball tour through the Southern states, Finch's aunt and uncle joined the team caravan, allowing the moms and kids to follow the bus in their motor home for a few days. There's always a grandma or aunt or dad in the mix of softball coaches, players and trainers, thanks to a donation by a UCLA alum that pays the travel expenses for a relative of each of the softball moms. USA Softball helps out by providing the moms with their own hotel rooms, rather than doubling up like the other players do.

"I'm just so grateful that [Ace] can be on the road with me," Finch said. "I can't get enough of him."

Three-time gold medalist and professional basketball star Lisa Leslie, 35, relies on her own mother to watch 10-month-old Lauren when they travel.

"I feel really comfortable when she's left with grandma," Leslie said. "I can focus and not worry about her too much."

Like many children of professional athletes, Lauren is already a world traveler, having been overseas and to more than 10 states. While the ability to take Lauren on the road allows Leslie to maintain some semblance of her previous life, more things have changed than stayed the same since she entered motherhood.

While her teammates jam to the latest hits in the locker room, Leslie can't get "The Wheels on the Bus" out of her head; when the team goes out after a victory, mom heads straight home to tuck Lauren in. And those are only the most superficial differences.

"Being a mom changes everything," said Kate Markgraf, USA soccer star and mother to 22-month-old Keegan.

Markgraf, a defender who holds the distinguished record for most games played for the U.S. without a goal scoring, has already won two Olympic medals. But coming from a team with a long tradition of soccer moms, she knows better than to let her new role stop her from pursuing a third.

"I think being a parent puts you at an advantage," Markgraf, 31, said. "I don't sleep nearly as much as my teammates. But my best game since becoming a parent was after I stayed up the entire night because my son was teething. And I ended up having the best game of the year. So I think it's definitely an advantage because it just puts everything in the right perspective."

Leslie agrees.

"It's just an awesome feeling to see her little face and her excitement in the morning. It really drives me."

Mother Of 2 Autistic Children Wishes For Understanding

A mother of two small children said she's horrified by the way others sometimes treat her family and she'd like you to help make it stop.

Christine Ferguson has two children, both with autism.

She said she knows that, right now, there is no medical miracle to "fix" autism.

Therapy helps but her children are unpredictable and often very difficult in public.

She said the lack of tolerance from others just makes it worse.

Playtime at the Ferguson's looks very typical, not what you expect from children with autism.

But that's the problem, according to Ferguson, the mother of 2-year-old Paige and 3-year-old Tyler.

Tyler and Paige are highly sensitive to their environment and their behavior can change at any time.

When things fall apart in public, as it often does, Ferguson said some people are less than sympathetic.

"They don't understand that their comments, their looks, you know, their whole act toward us is very hurtful because it is not accepting," Ferguson said. "There is nothing physically wrong with them. They perceive it as this is just an undisciplined child and they feel that it's OK to say something."

She said it gets really bad when people say unpleasant things directly to the children.

Heading home isn't always an option.

"If I left the store every time my son did something or my daughter did something I wouldn't have clothes or groceries," Ferguson said.

She said by extending a higher level of tolerance to those with differences, her life and the lives of her children would improve. Like it did during a trip to the hair salon.

"Normally, Paige screams and she kicks and she does not want to be there. And it's a very dangerous struggle for her because she could hurt herself around the scissors or could do something that could cause harm to herself," Ferguson said.

But that didn't happen during a recent haircut because instead of becoming angry and frustrated Ferguson said the stylists at Best Cuts did everything to help.

Three stylists went to work at no extra charge and Paige was transformed.

Not only did she get a cut, she now loves the salon.

Ferguson said the women have no idea how much it meant to her.

"Everybody in the world wants to be accepted and everyone wants to know that it's OK to be who they are," she said.

"Just to know that it made the difference for someone, it definitely helps motivate you to keep doing it," salon manager Christy Bishop said. "We just have to try and be patient with people with anybody not just kids with special needs with anybody."

Ferguson said some parents with autistic children handout business cards that say, "Please be understanding, my child has autism."

She often wears a T-shirt in public that says something similar.

Ferguson said of course, some people are very understanding and helpful.

She said all she really needs is a smile or a quick glance of understanding.

My brother, John by Jacquie

I am writing as the sister of John, who was born in the North East of England in 1958. John is my younger brother by five years. I was so excited to have a baby brother and can remember his homecoming. My dad, being the archetypal macho Northerner that he was, typical of this era, went out and bought John a pair of boxing gloves and a train set, obviously expecting his son to be a chip off the old block.

John was a beautiful, blonde baby with huge blue eyes. He was seemingly 'normal'. He walked and talked at the expected milestones and, in hindsight, the only clue that we had of any differences in his development was that he was exceptionally clingy to Mum; he was scared to venture across the doorstep (he would scream) and would not engage with anyone else. John loved his building cups which stacked one on top of the other and I had fun building them up and knocking them down. John, however, was disinterested in this, preferring to place each coloured cup around the room. If they were moved, or one was lost, he was inconsolable for the whole day.

My mum was concerned at his clinginess to her but our GP dismissed her worries as those of an over-anxious mother. At the age of three, John had normal verbal skills and his memory seemed phenomenal. He could recite all the road signs in the highway code without error. However, he was extremely wary of other people, always avoiding eye contact and getting increasingly difficut for my mum to manage. He had tantrums which became worse as he struggled to make sense of his world.

When he was five years old I remember him walking the street with a large, toy red bus set at an awkward angle to his temple. The bus was pointing skywards and he was looking into the bus. We could make no sense of this at all. He did this frequently and he also had a fixation about spires, steeples and television aerials. The building cups, for him, now represented local churches and we knew that there would be trouble if we moved 'St Barnabas' or 'St Paul's'.

One day I took his bus, put it at the funny angle on my head just as he did, and tried to see what he was looking at. I discovered that he was using the reflection of the bus windows at a strategic angle to look at roof aerials. As he walked along the street he got a moving personal picture show of every rooftop aerial and telegraph pole. It also meant he did not have to strain his neck by looking up for significant periods of time. John's world was mapped by these projections and they are still fundamentally important to him. He was disinterested in people and when later he realised that other families lived in the other houses on our street, he would need to know what colour the mattresses were on their beds. His first comment when introduced to someone used to be, 'What colour is your mattress?'

At home, I learned that if John was calm and happy then so were the rest of my family, and my dad was less likely to get angry. Dad's anger could be quite terrifying.

Perhaps to help cope with the underlying tension at home, John developed an alter ego called Jonnie Comics. If John had done anything wrong, then Jonnie Comics was to blame. Jonnie Comics was around for a couple of years. Mum knew there was something wrong but no-one listened. All her fault, they said: she is too sensitive and is an over-protective mum. The other kids sensed he was different, too. He was starting to become a victim but I was always on red alert, being the older sibling. I got into numerous scraps because no-one hits my brother; it's not allowed! Besides, Dad had shown me how to use those boxing gloves he'd bought for John.

When John started school, he seemed to be unteachable. He would not settle, and at last people took my mum's concerns seriously. Psychiatric assessments followed and questions were asked about our family dynamics: was I jealous of my brother (nothing was further from the truth)? Was he like my dad, a volatile character? My mum queried the times she had seen my dad clip John across the head, which parents often did then - it was accepted and I had had more clips than anyone. They never really hurt and Dad was usually sorry afterwards.

My dad retreated to the pub, full of guilt that maybe his son's handicap was a direct result of his own actions or that John had inherited his own so-called madness (my dad was rarely able to control his anger and was nicknamed Mad Ted). It was, sadly, a time of sheer ignorance. Words like autism, psychotic and schizophrenic were bandied about with no true understanding of their meaning. Certainly they held no real meaning for us.

John attended a children's assessment unit for six months as a weekly boarder and as a result was offered a place at a special needs boarding school in Gloucester, under the Rudolf Steiner foundation. John seemed to take easily to living away from home. It was Mum who struggled to let him go. We accepted that he was mentally handicapped; someone had mentioned the word 'autistic', which accurately described a great deal of John's behaviour.

My mum went on to have two more children and John would come home for the holidays. However, she struggled with his constant, repetitive behaviour and questions. On the plus side, John was getting better developmental skills and could play the glockenspiel and piano if he was in the mood. He did it instinctively, playing any tune with one hand. On the minus side there was always an undercurrent of despair at home that was not openly expressed. There was still blame and tension, and John was increasingly aware that he was different. He would ask why he had to go away to school, unlike his brothers and sisters. He asked if he was handicapped. What did handicapped mean? Would he ever get married? We skirted round these issues, never fully dealing with them because we did not know the answers ourselves, really.

John was manic, always anxious, often difficult. Thank heavens for the Beatles, 60s music and the pop charts. John loved, and still does love, all 60s music. He can tell you instantly what was number one in July 1967. He would listen to music for hours and this became our saviour. He was also becoming a very handsome young man who was starting to attract female attention but he was totally disinterested. As far as I know sexuality has never been a part of his world, then or since.

As he grew up, John was fortunate to be given a place at another special needs institution for teenagers in Bristol. All this travelling to and fro gave him another fixation - railways. He loved the trains, lines, stations and anything else to do with railways. He seemed to be doing well, but then our mum died at the age of 47 after two horrendous years with a very uncommon cancer. John did not attend the funeral. He very matter-of-factly said that I had taken Mum's place now. No emotion. Dad now had an 11 and 13-year-old to look after and I was newly married with my first child, who was just one year old. Dad struggled, so I did, indeed, take on the role of mum to all.

I managed to get John into a village community for people with learning difficulties for a few years, which was closer to our home. Although it was great for him initially, he became increasingly withdrawn. After all, where were the rooftop aerials in this picturesque village? Why should he care about the cows? (Once, he let them all out of their field and still thinks the police will come and get him for that, no matter what we say.) As we all do as teenagers, John was struggling to make sense of who he was, and was starting to suffer from depression.

His depression worsened and he was placed in a mental institution. Just being there with some severely damaged patients had a distressing affect on John. I was aware that it would and tried to get help, but was not taken seriously. John then jumped out of a window and sustained a serious head injury. His psychiatrist was quick to ring and stutter about it not being his fault and I was not prepared to go down the blame route. I had had enough experience of the damage and negativity that this brings. Instead, I changed his psychiatrist and gave my word that John would never go to that institution or medic again. I kept my word. John was, thankfully, then properly looked after by a great team of professionals who still review and assess all aspects of his life, in particular his medication, which controls his mood.

John is now 49 years old and lives in a hostel for vulnerable adults, where he is happy. The hostel is run by a woman who is very capable and enlightened and who understands her residents' individuality as well as managing their safety. John can come and go when he pleases and can frequently be seen in the coffee shop or the local pub, where he has an orange juice whilst listening to the jukebox. The hostel is in a village at the edge of town where people have known him for 15 years and he considers it home. He has come to terms with his handicap. He understands that he needs some assistance with daily life and routines. He understands that it may be difficult for him to marry as he would struggle with the practicalities of having a wife, but we never take away his hope. His hope is that one day he will have a place of his own. I will never take away that hope but I do tell him it is unlikely.

When he comes to stay with me for the weekend he now holds my hand for a fleeting second, tells me that he loves me, and says that he misses Mum but that I have taken her place. He loves the bedroom on the third floor of our house where he can look out at aerials while listening to 60s music.

A few years ago, he had a special 40th birthday where he gave a speech of thanks to everyone and sang with a friend accompanying him on guitar. He was amazing. Dad, who never really accepted him or understood, cried.

I have just given you a snapshot of our journey with John. When I would meet people who did not know about his condition, I would always introduce him as my special brother, so that they could be alerted early to save any potential embarrassment. John said to me, "Why do you say that? We are all special, aren't we?" So I now introduce him simply as my brother, John.

The important message that I would like to convey is that John has developed so much emotionally and continues to develop and learn - we don't know what his limits are. Once I fully accepted John for the wonderful person that he really is and stopped worrying about other people's issues with him, we started to enjoy life more. Society now is much more accepting. For example, buying clothes for John used to be a nightmare - he hates it. But in the last few years staff in shops have been fantastic and so helpful, particularly the younger ones - things just keep getting better. As a family we have faced considerable adversity but we have also been lucky, with excellent support from some professionals and good people along the way. I am privileged to have John as my brother and I love him very deeply.

By Jacquie

Super Mom: Mother and Teacher

Her son's autism led Yarisa Echevarría to open a specialized school.

Yarisa Echevarría, 31, sometimes feels like someone has kidnapped her son, Joseph. Without warning, he went from a high-spirited and intellectually curious 18-month-old to a child she couldn't recognize. Hints of Joseph's once affectionate demeanor, infectious laughter, and even his growing vocabulary were gone. Worse yet, he stopped responding to his name. After months of pushing the pediatrician for testing, the culprit had a name: Autism. Joseph was diagnosed with mild to severe autism. "The hardest moment is when they tell you that something is wrong with your child, and this is it," says Echevarría.

Unlike a cold, a fever, or even depression, there is no medication for autism. In fact, little is known about the causes of the developmental disorder. Parents will talk about the anguish of trying to get through to their autistic children, who often stop interacting, communicating, and learning. In some instances the signs can be even more dramatic: children rock or flap their hands for hours. And, autism isn't something children outgrow. In severe cases, the disorder keeps them from ever becoming fully functioning adults.

Determined to give Joseph a fighting chance at a normal life—which is possible—Echevarría sought help from specialists. At times, she'd intervene and supplement his lessons when she saw he wasn't making progress. Anxious to help him understand concepts, Echevarría would sometimes find herself galloping on the floor so he could make the connection to the horse on the index card.

Then two years ago, she took that determination a step further, leaving her job in finance to get formally trained to work with Joseph's autism. Echevarría hoped this would help Joseph. And when she hit a wall when she was looking for adequate summer programs and other professional resources, Echevarría simply decided to start her own with the help of one of Joseph's teachers.

After seven months of working tirelessly to establish the non-profit, securing an affordable space, hiring teachers, Echevarría opened Learning Links (now a full-fledged school that goes up to second grade) last June. Though most of the 15 students are Hispanic, a reflection of their Miami surroundings, not all have developmental disorders. Because the goal of the school is to eventually trickle the students back into a regular, age-appropriate classroom, the curriculum is set up in a way that makes the program beneficial for any learner. For example, if a student has mastered the art of cutting paper with scissors and another hasn't, one can teach the other. Rosie Perez, a parent of a daughter with no known developmental issues and a son with Fragile X Syndrome, was simply delighted that she could send both to the same summer camp. Amazed at the progress both children made—and that her son, who often cried when left, was now waving her goodbye—convinced her to switch him to the school. "Yarisa is doing this for her son, but she's helping out so many parents in the process," says Perez. "It's that kind of emotional tie that's missing from many of the programs."

Grandfather builds Web browser for autistic boy

John LeSieur is in the software business, so he took particular interest when computers seemed mostly useless to his 6-year-old grandson, Zackary. The boy has autism, and the whirlwind of options presented by PCs so confounded him that he threw the mouse in frustration.

LeSieur tried to find online tools that could guide autistic children around the Web, but he couldn't find anything satisfactory. So he had one built, named it the Zac Browser For Autistic Children in honor of his grandson, and is making it available to anyone for free.

LeSieur's quest is a reminder that while the Web has created important communication and educational opportunities for some people with cognitive impairments, computers can also introduce new headaches for families trying to navigate the contours of disability.

The Zac Browser greatly simplifies the experience of using a computer. It seals off most Web sites from view, to block violent, sexual or otherwise adult-themed material. Instead it presents a hand-picked slate of choices from free, public Web sites, with an emphasis on educational games, music, videos and visually entertaining images, like a virtual aquarium.

Other programs for children already offer that "walled garden" approach to the Web. But LeSieur's browser aims to go further: It essentially takes over the computer and reduces the controls available for children like Zackary, who finds too many choices overwhelming.

For example, the Zac Browser disables extraneous keyboard buttons like "Print Screen" and turns off the right button on the mouse. That eliminates commands most children don't need anyway, and it reduces the chance an autistic child will lose confidence after making a counterproductive click.

Children using the Zac Browser select activities by clicking on bigger-than-normal icons, like a soccer ball for games and a stack of books for "stories." The Zac Browser also configures the view so no advertisements or other flashing distractions appear.

"We're trying to avoid aggressive or very dark or complicated Web sites, because it's all about self-esteem," LeSieur said from Las Vegas, where he lives. "If they're not under control, they will get easily frustrated."

Autism generally affects a person's ability to communicate, and Zackary doesn't speak much. But his mother, Emmanuelle Villeneuve, reports that the boy can start the Zac Browser himself. He enjoys listening to music through the program and trying puzzles - things he always liked before but hadn't been able to explore online, she said from her family's home in suburban Montreal.

Perhaps most tellingly, while he still acts out aggressively against the TV, she said, he doesn't try to harm the computer.

LeSieur didn't create the browser by consulting with people who are considered experts in disorders on the autism spectrum. The small software company he runs, People CD Inc., essentially designed the Zac Browser to meet Zackary's needs, and figured that the approach would likely help other autistic children. Early reviews have been positive, though LeSieur plans to tweak the program so parents can suggest new content to add.

Several autism experts were pleased to hear of LeSieur's work, and not surprised that he had not previously found anything suitable for Zackary.

After all, the autism spectrum is so wide that a particular pattern of abilities or impairments experienced by one autistic person might be reversed in another. In other words, creating software that would work for huge swaths of autistic children is a tall order.

Indeed, the Zac Browser might do nothing for another autistic child.

That said, however, LeSieur's approach of limiting distractions and using the software as a confidence-boosting tool "is a very good idea," said Dianne Zager, director of the Center for Teaching and Research in Autism at Pace University. She said many autistic students tend to do best with educational materials that make unnecessary stimuli fade from view.

"Some parts of the Web have so much extraneous material that it can be distracting, and for the nonverbal child, there might not be an ability to negotiate that information," added Stephen Sheinkopf, an autism researcher at Brown University.

This is not to say the Web is necessarily barren for autistic children. James Ball, an autism-education consultant in New Jersey, said many children he works with enjoy Webkinz, where kids care for virtual pets. Others find chat rooms and instant-messaging a lower-anxiety way of socializing than talking to someone in person, he said.

But the Zac Browser might turn out to be the rare tool that can be configured to strike a chord with a wide range of autistic students, said Chris Vacek, chief innovation officer at Heartspring, a special-education center in Wichita, Kan. Vacek is considering using the Zac Browser at Heartspring.

One huge advantage is that the browser is free, while many assistive technologies cost upward of $5,000 and work only on specialized devices. But Vacek, himself a parent of an autistic child, said the Zac Browser's best credential is that it appears to pass what he calls Heartspring's "acid test": It has a high chance of increasing a child's ability to do things independently.

"Let's hear it for grassroots innovation," Vacek said.

Tuesday, May 27, 2008

An Adult with Autism The Story of Jamie Part 4

A few days later, Alice was at home preparing for the flight she and Rob would take to China. The phone rang. It was someone from Easter Seals.

Rob was dead.

Alice heard the words, but couldn't believe them. Her heart felt like it might pound out of her chest.

Doctors suspect Rob's death was related to his epilepsy, though they are still not sure of an exact cause. He was 36 years old.

Numb and grieving, Alice left the next day for Shanghai alone, convinced news of the coach's death had to be kept from her son. She feared it would be too much for him to handle. She wouldn't let it destroy everything Rob had helped Jamie achieve.

Jamie found himself in the heart of a neon-draped city of 18 million. Aging high-rise apartments spread across the landscape like tobacco-stained teeth, laundry covering every window in patchwork colors. Rivers of cars, taxis and rickety trucks droned incessantly and filled the tropically humid summer air with an almost sooty exhaust.

This was a city born to overwhelm the senses.

Jamie had spent several days living with a Chinese host family. They made dumplings together around the kitchen table. The mother and father tried to teach Jamie origami, but he grew frustrated and slumped down alone on the family's sofa, asking if he could just watch TV.

At opening ceremonies, he marched through Shanghai Stadium to the cheers of more than 70,000 spectators and watched sparks from a brilliant array of thunderous fireworks fall from the sky.

Through it all, Jamie seemed remarkably unfazed, as if defying autism. Maybe the weeks of mental preparation worked. Maybe a survival instinct, triggered by a world of rampant changes, kept his emotions in check. Or perhaps it was just another unexpected quirk of his mysterious disorder.

On Oct. 3, five days before his competition, he sat on a weight bench, working out in a narrow, steamy gym. A few spots down was a group of Syrian powerlifters, and past them a cluster of athletes from the Philippines.

He calmly followed his coach's commands. After one lift he looked up at Mitch.

"I did real good, right?" Jamie asked, nodding his head yes, not waiting for an answer. "I got it real good that time."

He flexed his muscles and pounded his chest.

"I'm monstered up!"

When he got off the team bus at the hotel, Alice stood waiting. After a hug she stepped back and eyeballed her son top to bottom.

"Baby you've lost weight," she exclaimed with motherly concern. "Have you been eating enough?"

"Yeah, Mom. I'm eating good," Jamie said.

She lifted his Team USA shirt and examined his belly.

"I don't think he's getting enough food," she said, shaking her head.

They chatted in the hotel lobby. Alice wanted to know every detail of the trip. But after about 10 minutes, Jamie grew distracted.

"I better go up to my room now, Mom," he said, heading off to the elevator without even a kiss goodbye.

Alice smiled.

"He's treating me like he does at home," she said, shrugging her shoulders. "So at least I know he's comfortable."

Amid all the distractions, Jamie never asked why Rob wasn't there.

In fact, he didn't notice Rob's absence until about five minutes before he was supposed to compete.

Jamie was with his mother near the front of Zaibei Gymnasium. Hundreds of Chinese schoolchildren, all dressed in white, sat in the stands rattling toy clappers that filled the room with the sound of plastic thunder. A stage rose up from the gym floor, backed by a curtain that carried a broad banner announcing the theme of the 2007 Special Olympics: "I know I can."

Racks of circular weights sat center stage, bathed in light. The recorded boom of an up-tempo symphony pulsed through the room.

Jamie looked at Alice, confused.

"So Rob's not going to be here, then?" Jamie asked.

"No, dear. Rob got sick and he wasn't able to make the flight."

"OK. So Rob's not going to be here then, right, Mama?"

"That's right, baby. But listen."

Alice pulled Jamie close. She put her hand on his chin and made sure his eyes were looking into hers.

"Rob's right here, Jamie," she said, pounding the flat of her hand on his chest. "He's in your heart."

Jamie nodded.

"You can do this," Alice said. "You can do this. You can do it."

"I know," Jamie said, unconvincingly. "I can do it. I believe it."

He tried to shake his mom's hand. She pushed it away and grabbed him, squeezing him tight.

The Team USA powerlifters were a boisterous group, nearly two dozen men and women of such disparate heights, body shapes, abilities and disabilities that no two seemed remotely alike. But they were unified, and loud:

"C'mon Jamie! Let's go!"

Jamie walked onto the stage, sank his hands into a bowl of talcum powder then clapped them together. He seemed to like the dramatic effect of the thick puff of white dust.

He was competing against five other men in his weight class.

His first attempt was light, 140 pounds, but it was critical.

Just days before the competition, Mitch had unwittingly put more weight on the bar than Jamie could handle. When he wasn't able to lift it, Jamie became flustered.

He talked about it for a day or so, asking Mitch, "You're not going to put too much on the bar, right? I'm going to be able to lift it next time, right?"

During his first lift at the Illinois State Games in June, Jamie had lost his composure when the judges' lights turned out to be white instead of the familiar green. It ruined the rest of his performance. If he failed this first lift, a similar meltdown could follow.

Jamie approached the rack, fixed his shoulders under the bar and assumed the starting position. On command, he bent his knees and began to squat, head up, eyes focused forward. He flexed his legs at the next command, driving himself to an upright position, then dropped the bar back onto the rack with a clang.

The three judges illuminated two white lights and one red. Two out of three meant a good lift.

Jamie's hands shot up in the air. This time he had been coached to understand that there would be no green lights, that white meant good.

He knew he had done it.

His second squat was flawless, so was the third.

Each time Jamie came to the stage, his confidence seemed higher. He steamrolled through three sets of bench press, pumping his fist harder after each good lift.

The crowd loved him. After each round he turned to them, put his hands flat together in front of his chest and bowed like a warrior.

The final competition was the dead lift. The bar rested on the ground—260 pounds awaited.

Standing upright, Jamie spread his feet wide. He squatted down, back at a 45-degree angle to the floor, butt thrust out, long fingers wrapped tight around the shiny silver bar.

His eyes moved past the crowd in front of him and on to a green Special Olympics logo on the wall at the front of the gym.

A judge said, "Lift!"

Jamie's mouth opened in a near-perfect circle as he slowly pulled the bar up. He scowled like one of the pro wrestlers he idolized.

As his hips straightened and the bar moved past his knees, he released a guttural RAHHHHHHH!

The form was perfect. No mistakes. All white lights.

Mitch let out a whoop. Jamie had just become one of the best in the world.

He medaled in each lift—bronze in the squat, bronze in the dead lift, silver in the bench press—and won silver for the overall competition.

Alice, in the stands, smiled tearfully. Mitch, on the floor, could barely believe it.

"He was more focused than I've ever seen him," the coach said, breathlessly. "All these people and all these distractions. I just told him, 'Focus. It's just you and the weight.' I'm so damn proud of him."

It was just after 4 a.m. in Chicago. The teachers and therapists who had taught Jamie to get up every day and navigate an often frightening world didn't yet know of his success. Neither did Rob's family, who had buried the coach in his hometown of Chicago Heights days earlier. The news would reach them soon enough.

On the stage in Zaibei Gymnasium, Jamie stood tall and soaked in the attention. He bent his knees and bowed his head, as another prize was gently lowered around his neck.

In all his years of competition, bronze and silver had never been good enough for Jamie. He had always shipped those medals to his grandmother in Texas.

But not this time. These he would keep for himself.

Jamie returned from China on a Friday night and wanted to go to work at Pete's Produce first thing Saturday morning. Alice said no, he needed to rest.

She also knew she had to tell him the truth about Rob.

They sat on Jamie's narrow bed, flanked by clusters of gold medals hanging on the wall—23 to the right, 22 to the left, another batch of 24 stuffed in the closet. Rob had played a role in Jamie getting most of those awards. They paved his way to victory in Shanghai.

Alice took Jamie's hand and slowly explained what happened to his coach.

Rob's dead, Mama? he asked, over and over again.

Yes, baby, she said. He's gone. But I just know he's so proud of you.

After about 10 minutes Jamie said he needed to watch TV. Alice knew that was her cue to leave.

The next morning they drove to a drugstore and Jamie brought up Rob again. This time he cried. It was the first time she had ever seen him cry for anybody other than himself.

All weekend Jamie said over and over that he couldn't believe Rob was dead, as if repeating it would force the idea into the tight structure of his life.

On Monday, Oct. 15, Jamie returned to work at Easter Seals. He strutted, shoulders thrust back, his four World Games' medals fanned across his chest. He soaked up the pats on the back, the handshakes from those who stopped to admire his bronze and silver awards.

"You the man, Jamie," said one teacher, passing by.

"Yep," Jamie said, nodding his head, "I'm the man too."

At 9:55 a.m., the young autistic adults in the vocational program began to file into the basement room and take their seats at folding tables, signaling the beginning of the work day. Jamie watched his friends for a moment then turned on his heels and walked to his black backpack hanging on the wall.

He bent his head down, lifted off the four medals and stuffed them into the backpack.

He went to his table and looked down at the array of red bins, at the screws and washers and small plastic parts. A moment passed. Then he spoke, to no one in particular.

"I better get back to work."

An Adult with Autism The Story of Jamie Part 3

One Friday in August, Jamie took a rare day off from Pete's Produce—he went to a friend's birthday party. The following Monday, Alice took him, as always, to the produce store to pick up his paycheck.

The check amount was smaller than normal because of the day off.

Mama, my paycheck's wrong, Jamie said.

No, baby, you took Friday off. Remember?

No, Mama. This isn't right. Why is my paycheck wrong?

As they drove north toward Easter Seals, Jamie's frustration built. Alice tensed up. She knew what was coming.

Jamie hurled a roll of mints against the windshield, sending them pinging off the windows. He lifted one of his legs up and brought his foot down with a violent thump on the dashboard, his screeching drowning out the soft soul music on the radio. He smacked himself violently in the face and chest.

Though she had been through it many times before, Alice was terrified. She didn't want to pull over. She wanted to get him to the school as fast as possible, and she called ahead to tell counselors there what was happening.

When she pulled into the parking lot, two of the teachers, who had known Jamie since he was a kid, were waiting. He was still bellowing as they led him into the school.

For half an hour he paced the second-floor halls, not speaking to anyone. Finally, Melanie Gomez sat him down, talked gently about what had happened, then firmly told him his behavior was unacceptable.

If he behaved like that, he couldn't work. If he behaved like that, he wouldn't go to China.

For weeks, Melanie and other teachers and counselors at the school tried to prepare Jamie psychologically for his trip.

Melanie, who was Jamie's boss in the adult vocational center, made up a calendar outlining precise details of the journey—where he would be each day, what time his flights would take off and land, how many hours he would need to set his watch ahead. She knew a schedule and an understanding of what was to come was the best going-away gift she could give him.

Though Rob wasn't chosen as a World Games coach, he was going as a spectator. He had his bags packed days before leaving. He wondered aloud what the experience would be like, and played out different scenarios in his head, all involving Jamie winning the gold.

"He deserves this," Rob said. "He's worked hard, and this is going to be his moment. I just know it."

On Sept. 25, Jamie said goodbye to Alice and Rob, joining the team at a hotel near O'Hare International Airport. The next morning, he boarded a commercial flight clad in a navy blue Team USA T-shirt and sweat pants. He and 10 other Illinois athletes were bound for Los Angeles, where they would meet up with athletes from across the country, then board a chartered flight to Shanghai.

The Special Olympics staff and coaches understood what a test this was for Jamie. They kept a close eye on him on the flight to California, answering his rapid-fire questions and doing their best to keep him distracted. On the second leg of the journey to China he was either in his seat, transfixed by an in-flight movie, or doing fast-paced laps around the cabin.

In a sure sign he was nervous, Jamie asked every person he saw: So everything's OK with you, then?

He asked some of the athletes the same question half a dozen times. They began complaining to Mitch, but he told them to let it go. That was just Jamie being Jamie. Besides, the movie player on the plane had broken, and all Jamie had left to do was walk around. There would be plenty more questions to come.

As the flight touched down at Pudong International Airport in Shanghai, Mitch exhaled, relieved. Jamie had made it this far, more than 14 hours in the air. Mitch figured that was half the battle.

An Adult with Autism The Story of Jamie Part 2

But he won Alice over with one unquestionable quality: He loved Jamie.

The coach often had seen Jamie's life transform from calm to chaos in a matter of moments. That's why, at Soldier Field, Rob knew exactly what was coming.

"Get my mom," Jamie said, his voice quivering. "I'm upset. I'm getting very upset!"

Jamie's brain, like those of most people with autism, is slow to adjust to change. It takes time and repetition for him to understand that it's OK when something isn't the way he thinks it should be or the way it has always been.

"Jamie, it's just that microphone, it's making everything sound funny," Rob said. "You're doing fine. Just get up there and do it like you did in my office the other day."

"All right, Rob," Jamie said, looking anything but confident. "I'm gonna get up there and do it real good this time."

Back and forth, the conversation repeated itself—Rob trying to comfort and cajole, Jamie answering that he would "do it real good this time."

Rob didn't doubt him. He couldn't. Jamie needed him to believe.

Twenty minutes later, hundreds gathered in the stands. Jamie stood at the podium and launched into his speech. This time he didn't stop.

"I . . . am . . . a . . . powerlifter . . ."

He wasn't comfortable. He wasn't smooth. But Rob had told him what to expect.

As he finished, the crowd's wild applause thrilled him. He beamed, flashing two thumbs-up signs.

Jamie doesn't have the build of a typical powerlifter. It's a sport for the stocky—the shorter the arms and legs, the less distance to heave bar-bending weight. But Jamie has managed to get the most from his tall, muscular frame, grunting and roaring his way to dominance in local and state Special Olympics competitions.

With an encyclopedic knowledge of professional wrestlers—and a bedroom plastered with posters of muscle-bound pros like Stone Cold Steve Austin and The Game—the pursuit of bulging biceps seemed a natural fit. It's also a solitary sport, one with strict rules and little variance. On the padded bench, there was only Jamie, the weights and a clearly defined, rhythmic task: lift up, lift down, rack.

In his first competition in 2003, Jamie benched 100 pounds. Legs spread wide, hips bent, he hoisted 170 pounds up to a standing position in the dead lift. He won two gold medals.

Within three years he moved up to more than 200 pounds on the bench press and more than 300 pounds on the dead lift.

"He has to do well in everything," Rob said. "He's such a perfectionist. He doesn't accept second place. It's hard to get him to accept that sometimes there are people out there that are better than you."

Jamie kept only the gold medals. All silvers and bronzes went to his grandmother in Texas.

In June, he, Rob and a group of other Easter Seals athletes rode a bus down to Normal for the Illinois Special Olympics State Games. The event had no bearing on the World Games, but it was Jamie's last formal competition before heading overseas in October.

The powerlifters gathered on a creaky stage in an Illinois State University lecture hall. Jamie was in a boisterous mood, pacing about and grinning, laughing about a movie he had watched in the dorm the previous night.

" 'Rocky III' with Mr. T.," he shouted. "Hah-hah! I watched that last night. That Mr. T, he got 'em real good."

When his turn came, Jamie walked confidently to the bench and waited for the judges command to lift.


Jamie lowered the bar to his chest.


He forcefully exhaled and pushed the bar up.


The three judges ruled Jamie's form perfect and signaled so by illuminating three white lights. Jamie got off the bench and looked at the lights. Panic washed over his face.

Normally, those lights would be green. Green is for good, red is for bad. That was what Jamie had always known.

"Rob," he said, "where are the green lights? What did I do wrong?"

"The white lights are good, Jamie," Rob said, walking him to the rear of the stage. "You want three of them. That's good."

"But where are the green lights, Rob? The green lights are good. What did I do wrong?"

Rob looked worried. For 10 minutes he tried to explain. Maybe they ran out of green lights, he said. It's OK. The white lights are good. You want the white lights.

But Jamie still looked panicked, confused.

On his next lift, he forgot to wait for the command to start. Three red lights.

He lifted a foot up during his third try, a form violation. Three red lights.

"This is the autism," Rob said, shaking his head. "He's flustered. He's out of sync."

As Jamie walked off the stage, he looked at his coach.

"Rob, it was kind of tough," he said, voice cracking.

"Are you upset?" Rob asked.

"Probably so," said Jamie. "I'm upset about it too."

That evening, Jamie was dancing with friends on the Illinois State football field, his smile wide, showing no signs of his earlier distress. But Rob was still concerned, faced with a stark reminder of his athlete's fragility.

"I don't know," the coach said. "I sure hope they have green lights in China."

"How you feel, dude?" Alice said, looking over at her son.

"All right," Jamie said flatly.

Alice would have given anything for more than that, for some assurance that Jamie knew what he was in for, but nothing came. He just stared blankly out the car window at thick traffic on Cicero Avenue.

It was a balmy July morning and Jamie soon would be on a plane to a World Games training camp, the first major step on his journey to China. But his mother couldn't stop thinking about the last time he flew.

That was in 1998, during a sightseeing flight over Niagara Falls with his classmates from the Easter Seals school. Halfway through the round trip he started to panic, and teachers had to talk him down, nursing him through the rest of the flight.

With that in mind, Alice rattled off a list of reminders for his training camp trip: Listen to your coaches. If anything hurts, tell someone. Enjoy yourself.

Jamie nodded and followed each piece of advice with a soft, "OK, Mama."

But he never shifted his gaze. He was detached, softly humming a high-pitched, ever-changing tune that slips out whenever he's anxious.

In the terminal at Midway Airport they joined a cluster of Special Olympics coaches and other Illinois athletes. Alice quickly found Brianna Beers, a coach who agreed to sit with Jamie on the flight. She pulled Beers aside. Jamie had never been away from both his mother and his Easter Seals family.

"I know this is what you do," Alice said, polite but stern. "But please take care of my baby. Please understand, this is my baby, my life."

For 24 years, Alice has been there to decipher the world for Jamie, and shield him from its rough edges. She lifted him up when people stared at him like he was from another planet. She protected him from the local toughs who tried to prey on him. She stopped store clerks who tried to shortchange him.

"I'm two people when I'm with Jamie," Alice said. "I'm feeling for him and I'm feeling for me. I have to be him in a way, to feel the parts that he's missing."

But this time she had to let go.

She yearned for an embrace and some tears. Jamie gave her a stiff hug, his arms barely touching her. She knew that was the most emotion he could muster.

He said, "I love you, Mama."

And he was off.

Alice walked slowly out of the terminal, sweating and furrowing her brow, wiping away tears all the way back to the car.

As the plane pulled away from the gate, Jamie gripped Brianna's hand. The window shades were all closed tight. His eyes were wide and he asked rapid-fire questions: So everything's OK, right, Brianna? We're taking off now, already? Everything's OK with you then, right?

As the plane leveled, his grip loosened. Ninety minutes later, he felt brave enough to peer out the window at the patchwork fields of Tennessee. He hit the ground happy.

On the first night of training camp, Jamie strutted into a ballroom on the Vanderbilt University campus with a grin that tried to break through the sides of his face.

"I'm havin' a good time in Nashville," he said, looking out at a parquet dance floor full of Special Olympics athletes bouncing to a disc jockey's beats. "I can't wait to tell everyone about this. This is really fun, to me."

He began to weave through the crowds, stopping to introduce himself and shake hands.

"Hi, my name is Jamie. What's your name?"

He sped happily from person to person, working the room like a salesman, posing for pictures, then hurrying on to the next stranger. For him, it had become a game.

In a room thick with people, Jamie remained very much alone.

Rob sat in his cramped office at Easter Seals and shook his head.

"I don't think Jamie grasps the gravity that he's competing against the world," he said. "We're going to start from scratch right now, make sure the technique is flawless."

Only two months remained before the World Games. Jamie's time at the Special Olympics training camp showed he could handle traveling, that he could manage in an unfamiliar environment. But his form was nowhere near good enough for the level of competition he would soon face.

He was a long way from winning a medal in China.

In Nashville he had met his Team USA coach for the Shanghai games, Mitch Guthrie. After the training camp, Mitch contacted Rob and told him Jamie needed more training.

Rob had brought Jamie this far, but with time waning, they needed help.

One Easter Seals teacher, an avid weight lifter, began taking Jamie to a nearby gym on Mondays. Another teacher's husband, once a competitive powerlifter, trained Jamie at their northwest Indiana home every Thursday.

Carefully building the new training regimen into Jamie's routine, they drilled him over and over again, making sure his form was exact and he followed commands without fault.

Jamie seemed fired up by the extra training. He began working out more on his weight bench at home, eyes fixed on the ceiling, neck veins bulging. He lowered his sweaty frame to the carpet, back down, legs bent, pumping out stomach crunches with the cadence of a drill sergeant. One, ah-huh, two, ah-huh, three, ah-huh . . .

At home and in public, he constantly sought out his reflection, flexing his biceps in any mirror or window he could find.

His confidence grew, but his autism stayed the same, and at times that made the coming journey seem precarious.