Adults With Autism

Running Together: A Family Bond Beyond Autism

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Alex & Jamie Schneider - alexandjamieschneider via CrowdRise.com

More than 48,000 runners took part in the New York City Marathon Sunday morning, and all ran for their own reasons. For identical twins Alex and Jamie Schneider, who are 23 years old and participating in their first New York marathon, running is a way to connect with a world they can’t communicate with otherwise. The twins are severely autistic, and they don’t speak. But when the boys were younger, their parents noticed how much Alex and Jamie loved to run, and now the Schneider family finds more joy in running than in anything else. It’s their chance to bond.

Alex and Jamie, who have run more than 130 races, both run with guides to help them navigate the crowds on race day. Alex runs with his coach, Kevin McDermott, and is hoping to beat his personal best marathon time of 3:23, set in Boston this year. Jamie runs with his dad, Allan. “I’ll explain to people, there’s not a lot I can share with him, but when we’re running, it’s an unspoken language,” Allan Schneider told Good Morning America.

http://now.msn.com/alex-and-jamie-schneider-twins-with-autism-run-in-their-first-new-york-marathon

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Keep Autism Awareness Alive: Help Prevent The Reality Of Falling Off A Cliff

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These are two stories that typically merit separate posts, but they clearly share a central theme and so I decided to put them together.  Growing up on the Autism Spectrum is difficult; for the individual, for parents, educators, siblings and friends.  It is made (relatively) easier by the degree to which that individual has support; financial, emotional, institutional or otherwise.  The harsh reality of new-found adult status can be jarring, if not entirely all-consuming and down-right depressing at times.  Gone are many of those supports that each individual has literally needed to make the progress that they have.  Gone also are many of the dreams of childhood; that unique innocence that sparks each autistic child to work towards something off in the distance.  

As a society, we need to have a plan to integrate young adults on the spectrum into that same civilized society.  Assistance with job placement? Yes!  Easier access to (more) Day Habilitation Programs? Yes again! Autism insurance reform? Hell yes! 

Autism awareness efforts can no longer be a grass-roots effort.  It must be a concerted, unified attack that has the full backing of local, state and federal agencies.  No autistic child who grows into adulthood should ever have to fend for himself to receive the same considerations that their neuro-typical peers get.  

On this last day of Autism Awareness Month, let’s all give our kids (children and adults alike) a hug, a kiss and a promise to keep their hopes and dreams, as well as their rights, alive.  -Ed

KIDS WITH AUTISM “FALL OFF THE CLIFF” AFTER GRADUATION

PHOTO: Janet Mino has taught her class of young autistic men for four years at Newark's JFK High School. But as they age out of the system, they have few options.

Janet Mino has taught her class of young autistic men for four years at Newark’s JFK High School.
But as they age out of the system, they have few options.

For four years, Janet Mino has worked with her young men, preparing them to graduate from JFK High School, a place that caters to those with special needs in the heart of one of the poorest cities in America, Newark, N.J.

All six of them have the severest form of autism, struggling to communicate, but Mino’s high-energy style evokes a smile, a hug and real progress.

Much of the work that she does may ultimately unravel because after these young men earn their diplomas, their future options are bleak — lingering at home, being placed in an institution or living on the streets.

New Jersey has the highest rate of autism in the nation and some of the best intervention resources. But after graduation, programs are scarce.

“They are adults longer than they are children,” Mino, 46, told ABCNews.com. “We need to give them a light. It’s up to us and up to me.”

“There’s nothing — nothing out there,” she said.

Mino, a whirling dervish of enthusiasm and warmth, is the subject of a documentary, “Best Kept Secret,” that recently premiered at the Independent Film Festival in Boston and will be shown at this weekend’s Montclair Film Festival in New Jersey.

Mino’s efforts to find resources for her students are Herculean in a school that is touted as the state’s “best kept secret.” Her efforts are exacerbated by poverty and lack of funding, but her classroom is a happy place as she finds ways to reinforce that they are capable and worthy.

“I look at it as a challenge — if I can get them as independent as possible,” she said. “They are so wonderful. They make you laugh. … They just think differently.

“Some people think that because they are nonverbal and can’t communicate, they can’t understand, but that’s not true. From my experience, they read us better than we read them.”

Director Samantha Buck [“21 Below”] and producer Danielle DiGiacomo, who is manager of video distribution at the Orchid, follow Mino and her students in their hardscrabble lives for 18 months leading up to their 2012 graduation.

“Autism is part of who we are as a society,” said Buck, 30. “Across the country, young adults who turn 21 are pushed out of the school system. They often end up with nowhere to go; they simply disappear from productive society. This is what educators call ‘falling off the cliff.'”

This year alone, 50,000 children with autism will turn 18, according to Sen. Robert Menendez, D-N.J., who has sponsored federal legislation to provide funding for adult programs. Within two years of high school, less than half of those with autism spectrum disorder have paying jobs, the lowest rate of any disabled group.

“Meanwhile, adults with ASD run the highest risk of total social disengagement,” Menendez told ABCNews.com in an email. “By the time they are in their early 20s, they risk losing the daily living skills they developed as children through supportive services.”

“Their families still need support,” he said. “The challenges they face will not disappear but only grow greater, and ultimately we will all pay the price for that.”

Today, an estimated 1 in 50 U.S. school-age children are diagnosed with some form of autism, a number that has been on the rise, according to the Centers for Disease Control and Prevention.

But the filmmakers said they did not want to focus on the “causes of autism and why.”

“Here are these human beings and they live in our world and are part of our society,” said Buck. “How do we integrate this huge population into our society?”

While on the festival circuit, Buck noticed the industry’s interest in films about autism.

“I pretty much cried at every single one,” said Buck. “They were predominantly centered around young Caucasian families with money.”

The filmmakers looked for an inner-city school that would tell a different story. With the help of Menendez, they found JFK High School, where they followed Mino’s students.

But funding is just part of the problem. Many of her students come from dysfunctional families that are challenged by poverty and lack of support.

Erik, the highest-functioning student in the group, is smart, talkative and great at following directions. He may be the most likely to make it in the real world. But his biological mother is too sick to care for him and he relies on a dedicated foster mother.

Robert’s home life is chaotic and it is reflected in his classroom work. He can read and spell, but is frequently absent. His father home-schooled him until dying four years ago. Now, an aunt, a recovering drug addict, looks after him.

Quran is the only one being raised by both his parents. He is able to read and control all of his behaviors, but his family doesn’t know where to turn for help.

“His parents spend every minute of the day thinking about him and his life,” said film producer DiGiacomo. “But they have to put food on the table and there is no time to access information on places where he can go.”

Parents work full time and need placement for their children when they go to work. Programs are costly and navigating the bureaucracy is difficult.

After-school recreation centers only operate from 10 to 1, impractical hours for working parents. And some families don’t even have cars.

“These are the simplest things that we don’t think about that can make or break families,” said Buck. “But they don’t have a woe-is-me [attitude]. This is their life and they love their children.”

Erik works hard when given direction and takes on a part-time job cleaning at Burger King.

“Everybody loves him,” said Buck. “They are good workers. This is not charity.”

But students need work coaches to help with the transition into a job, and Erik’s coach has 100 other clients.

Some will find part-time work or activities at a recreation center. Most of what is available resembles piecemeal factory work.

The filmmakers see Mino as the “heroine,” fighting to create meaningful lives for her students.

Mino said the intensity of filming the search for her students’ placements, she decided to fulfill a lifelong dream: to create her own center for young adults with autism.

She has now written a grant application to open the Valentine Center, which she calls the “center with a heart.”

Mino said she hopes to provide parent-friendly hours and transportation, as well as a variety of therapies and activities — “the basic things they need to survive.”

Until then, Mino continues to teach at JFK High School, where it’s all about her students.

“I fall in love easily,” she said.

“They are people,” director Buck said of Mino’s students. “If an audience can feel emotionally connected to Eric or Quran or a Robert, that might be an impetus to do something. It’s a first step.”

Buck said the making of the film was “kismet, in a way” and her hope is that viewers “watch the film they stop seeing these guys as young men on the autism spectrum and really get to know them. … It’s a first step.”

http://abcnews.go.com/Health/kids-autism-fall-off-cliff-turn-21/story?id=19068035#.UYALdKIp_5s

THE REALITY OF FINDING A JOB WITH AUTISM

Sarah Still has Aspergers and has spent years working a variety of jobs that don't seem to fit her needs.

Sarah Still has Aspergers and has spent years working a variety of jobs that don’t seem to fit her needs.

(CNN) — Smiling is something 30-year-old Sarah Still constantly has to remind herself to do, especially when she is going into a job interview.

Still has Asperger’s, a high-functioning form of autism. For the past 10 years, she has experienced the highs and lows of being on the autism spectrum while trying to work in professional settings.

It is not as though Still cannot get a job — in fact, her resume is full of them, ranging from room attendant at Yellowstone National Park to receptionist at a massage parlor. It’s keeping the jobs that has been the issue.

“Some days it is really hard to function … things like fluorescent lighting can even bring my systems down,” she said, meaning the lighting depresses her mood easily.

Still is not alone. The Centers for Disease Control and Prevention says as many as one in 50 children are diagnosed with autism spectrum disorders.

Many of those children will grow up and eventually try to enter the workforce.

Still said she’s had a range of job experiences. Her worst, she recalls, was working as a room attendant at Yellowstone National Park, because she had a hard time remembering her tasks. She has memory issues because of her Asperger’s, she said, and often loses track of time.

“It was really hard for me to remember how they wanted me to clean the rooms. They were really fast and I had an awful time keeping up,” she said. She only stayed at that job for two months.

I have Asperger’s; I am just like you

Ann Cameron Williams, chief research and innovations officer withThe Arc, a national organization of and for people with intellectual and related developmental disabilities, asks what will happen to those one in 50 children once they enter adulthood.

Should insurance cover autism therapy?

“How will these children impact our schools, our offices? It is something that we have to open our eyes to. It is something that we really have to embrace,” she said.

“We don’t have a choice of turning away — we have to employ these people.”

One of the main challenges The Arc faces is educating employers about the benefits of hiring those on the autism spectrum, according to Williams. She said some employers are hesitant because they are unfamiliar with how such workers will perform on the job.

“When it comes to questions from businesses, it is just communicating to them the facts. Giving someone with autism a chance to work, many employers will discover that those on the spectrum are great at working with numbers, computers and spreadsheets,” she explained.

I hired someone with Asperger’s — now what?

Besides advocating for those with autism disorders, The Arc and other national organizations have work-training and placement programs. One company that specializes in job placement for those on the spectrum is Nobis Works, a nonprofit organization based out of Georgia.

Becky Ketts, the director of rehabilitation services at Nobis Works, finds jobs for people on the autism spectrum while they go through the organization’s training program. These training programs last anywhere from three months to a year, and teach everything from anger management to customer service.

These “soft skills” are essential for success in the workplace, Ketts explains, especially for those with autism disorders.

“Even the thought of interviewing for a job can be overwhelming for someone on the autism spectrum. That is such an intimate setting. That alone can keep people from finding a job,” Ketts said.

Still can relate. “I don’t tell employers I have Asperger’s,” she said. She worries that employers will be immediately turned off from hiring her. “But I think when I do interviews I seem a bit strange and people don’t hire me.”

She also has difficulties “being social,” she said. It is those little things that ultimately build stress for her in the workplace.

Social interaction is a common challenge for those with autism disorders, Ketts said. “We all interact with so many people, co-workers, bosses, it can all be very overwhelming for those on the spectrum,” Ketts said.

Still said positive reinforcement was lacking in some of her previous jobs. “I had one boss who I would hear yell at other employees — that really affected me,” she said. “And sometimes, I feel people staring at me and it makes me uncomfortable.”

Ketts adds the key to overcoming those overwhelming feelings can be as simple as having a support system. A positive work environment and internal support can help increase retention rates at jobs for those on the spectrum. Nobis Works said it offers external support for individuals on the spectrum and reports an 84% retention rate, where employees stay longer than 90 days at their placement jobs.

“We can set someone up on the autism spectrum at a good job, but things can change. Keeping a job can be the hardest part,” Ketts said.

Music exercise class for adults with autism

More employers are becoming aware of the needs of people on the autism spectrum. There also are companies actively seeking to hire people on the spectrum. Aspiritech, a nonprofit Chicago-based company, launched a program to train high-functioning people on the autism spectrum to test software for tech development companies.

Even companies like Walgreens are taking a stand to hire more people on the spectrum. The company’s CEO announced in 2012 that it would try to fill 20% of its distribution center jobs with people of different disabilities.

Williams said companies are starting to see not only the business benefits of hiring someone on the spectrum, but also the ethical and public relations benefits. “It is hard to measure it with a dollar, but it is the right thing to do. When you have a company that is willing to hire someone with a disability, it’s a positive reflection on that company,” she said.

Karen Carlisle, vice president at Nobis Works, said the most important thing for employers to remember when hiring someone on the spectrum is that they are always going to have autism, no matter how much training a placement program provides for them.

“We don’t fix people with disabilities, we help people work with those disabilities and we work with managers and employers to help them understand these people,” she said.

“There is hope for people on the autism spectrum in terms of finding work.”

Still said she wishes employers would be aware that some people on the spectrum tend to be more sensitive. “And it may take us a bit more time to learn how to do something, but once we get it, we are very helpful. Many of us are dedicated to helping others, we just learn and show our dedication differently,” she said.

She said she hopes that if and when she does find a job she can start telling her employer about her needs with Asperger’s.

Despite not having a job since May 2012, Still said she isn’t discouraged. Ideally, she hopes to work with animals in the future and be out in nature. She said she’s hopeful because she knows she and others on the autism spectrum have a lot to offer.

“We are very intelligent,” she said. “We are very focused if we are doing something we love.” And that thought keeps her smiling.

http://www.cnn.com/2013/04/30/health/irpt-autism-in-the-workplace/index.html

New Professorship In Adult Autism Endowed At Rutgers University

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PRINCETON FAMILIES DONATE $1.5 MILLION TO RUTGERS FOR ADULT AUTISM RESEARCH

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Two Princeton families, longtime friends who between them have three sons on the autism spectrum, have made a $1.5 million gift to Rutgers University to endow a faculty position in adult autism, a field in which there is a critical shortage of trained professionals and support services.

The Karmazin and Lillard Chair in Adult Autism is being established by Dina Karmazin Elkins, daughter of Mel Karmazin, philanthropist and the former CEO of Sirius XM Radio; Michael Lillard, Chief Investment Officer of Prudential Fixed Income, and his wife, Amy.

The endowed professorship will address intervention and research for adults with autism spectrum disorders from both academic and training perspectives. It will be based at Rutgers University’s Graduate School of Applied and Professional Psychology, which for decades has been providing services to children and adults with autism spectrum disorders and other developmental disabilities.

“The Graduate School of Applied and Professional Psychology has a strong desire to work on finding innovative ways to help adults with autism, a goal that is close to our hearts,” said Amy and Mike Lillard, whose two teenage sons are on the autism spectrum.  “The school’s history of providing services to those with disabilities and educating students to continue that work makes Rutgers an ideal place for a chair in adult autism.”

‘Dina Karmazin Elkins, whose 11-year old son Hunter has autism, met the Lillards when their children attended school together. The families shared their concerns about the lack of resources and services for adults with autism. They began discussing an investment together in a senior leadership position at Rutgers.

“We believed an endowed professorship at Rutgers would expand training opportunities for students and begin to build resources in the state for autistic adults aging out of the school system,” Karmazin Elkins said.

Karmazin Elkins approached her father with the idea and he wholeheartedly agreed.  “The chair is important to my father as he looks to what his grandson’s life, as well as the lives of all adults with ASD, will be like in the future” Karmazin Elkins said.  “Adults on the spectrum have the potential to lead productive, powerful and even extraordinary lives – but only if they receive appropriate therapies and support.”

Approximately 1 in 88 children in the United States is diagnosed each year with an autism spectrum disorder, one of a range of conditions classified as pervasive developmental disorders. In New Jersey, the rate of autism has doubled in six years to one in 49 children, an increase that has confounded researchers. As these children reach adulthood, experts predict a surge of adults on the spectrum who will need continuing services and therapies.

The Karmazin and the Lillard families each contributed $750,000 toward the $1.5 million gift, which will create the fifth faculty position established under a $27 million challenge grant to establish 18 new endowed chairs at the university in a wide range of academic disciplines. For every $1.5 million that is raised for an endowed chair, a donor will match the gift to fund the $3 million needed to create an academic chair.

The 18-chair challenge is funded by an anonymous gift – the largest in the university’s history – to recruit and retain outstanding faculty. The challenge grant, and the Lillard and Karmazin gift, are part of the university’s historic $1 billion ’Our Rutgers, Our Future’ fundraising  campaign.

http://planetprinceton.com/2013/02/01/princeton-families-donate-1-5-million-to-rutgers-for-adult-autism-research/

Who Will Take Care Of Our Children? Take Time Now To Plan For Their Futures.

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I really haven’t thought this far ahead.  Although it is a scenario that every special needs parent faces, or will face, it is one we often push back to the deep, dark recesses of our minds.  We are so engulfed with the daily battles with autism, and focusing on small progresses and setbacks that we often forget to look long-term.  To those parents who have taken the time to plan for the future for your child’s life without you: congratulations for a job well done; you are probably in the minority.  I envy you.  This is not to say my wife and I have not had the ‘who will take of our boys’ discussion; we just have not made any formal plans.  We took care of life insurance issues years ago, but still have not yet made any preparations for guardianship, etc.  Let’s face it: none of us are getting any younger.  We both have significant medical histories prevalent in our families.  We try to eat well and exercise when we can; trying to minimize the effects of time and extend our lives so that we are there whenever our children need us.  

As this article reminds us, it is not only our own health we must maintain, it is vital for our children that we have a plan for them: high school, college, socialization training, job training, group home, whatever the case may be.  Our children will be adults one day and they will need our help despite their chronologic age.  They need us to provide a path for success, and continue to surround them with loving people who will guide them when we are not around.  Time for us to be the grown-ups again.  -Ed

WHO WILL LOVE HER SON? DISABLED MAN FINDS HELP AND A HOME IN UPPER DAUPHIN COUNTY

In northern Dauphin County, amid the farms, small towns and scarcity of jobs, Julio “L.J.” Reyes sets tables at a nursing home. It’s not what his mother hoped for him at as he nears 21.

But it’s far better than the worst possibilities she imagined as cancer ravaged her and she knew she wouldn’t be alive to help him.

Eight years ago, L.J. and his mother, Helen Reyes, lived in an apartment in Harrisburg. Helen Reyes was single and dying of breast cancer. L.J. has Fragile X syndrome, an intellectual disability similar to autism. He’ll probably never be able to fully provide for himself.

His mother’s final months were filled with worry over what would become of him. Helen Reyes dreamed of finding a gentle institution where L.J. could live out his life, and of somehow raising the money to afford it. It wasn’t to be.

But an old friend, Beth Lehman, read about the situation in the newspaper. She brought L.J. to live with her husband and daughter along a country road near Halifax.

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L.J. Reyes, right, and guardian Beth Lehman

Six years later, L.J. is happy, with friends and a productive daily routine. He bonded with Lehman’s daughter, Brittany, who included him in her circle of friends and assumed the role of his “protector.”

L.J. tells Lehman, “I’m going to live with you forever.” But eventually he’ll have to move, probably to a group home.

“It’s something that has to happen, because I’m not going to be around forever,” says Lehman, 44.

Lehman defers much of the credit for L.J’s success to the life-skills class he attends at Upper Dauphin Area High School. The class dovetails with a larger effort to expand opportunities for young people with intellectual disabilities in rural northern Dauphin County.

“The community doesn’€™t always recognize the benefits of hiring a person with an intellectual disability.” – Shirley Keith Knox

It’s a collaboration among the Upper Dauphin, Millersburg and Halifax school districts. It includes about a dozen students aged 13 to 21. Pennsylvania law allows people with intellectual disabilities to attend public school until age 21. That includes those who, like L.J., have already received a diploma with their senior class.

But the big question facing L.J. and many other young people with intellectual disabilities involves what happens after they turn 21.

Avoiding isolation

There’s often a waiting list for funding to enable adults with disabilities to live in group homes or attend employment or other support programs. The options can be especially limited in rural areas such as northern Dauphin County.

However, in northern Dauphin, the county, schools and assorted private entities are collaborating on new ways to help L.J. and others. They strive to avert the idleness and isolation that can trap people with intellectual disabilities, and which can put the full burden for their care, and providing a social life, on their families.

L.J. and his classmates spend part of their school day on academic subjects such as math and reading. They spend part in the “apartment” their teachers fashioned from partitions and bookcases, and which contains a sink, washer, dryer, microwave and toaster oven. “My students leave here with more skills than my own children,” says Bridget Glunz-Wenner, one of their teachers.

For older students such as L.J., perhaps the most important part of their education takes place outside the school building.

On a Friday last fall, that’s what brought them to The Manor at Susquehanna Village, a nursing home of about 200 residents near Millersburg. It’s one of several places where they regularly volunteer. They assembled in an empty community room, where there were met by the nursing home’s director of therapy. “We have some new people who would appreciate a visit,” they were told.

Glunz-Wenner briefed the students:

How do you need to talk when you visit?

LOUDLY. And with a lot of smiles.

Are you going to be silent, or ask a lot of questions?

Ask if they need any of their plants watered.Ask if they need their newspaper or their cards read to them.

Or make their bed.

A student spoke up: “Why can a lot of them not hear?”

Finding jobs

Glunz-Wenner, who has been a teacher for 25 years, continually thinks about what L.J. and his classmates will do after their public education ends. It’s critical to her that they find jobs. If they can’t find a job, she wants them to volunteer.

For one thing, they are capable — more so than many people realize.

For another, working and volunteering makes them part of the community, giving their lives a richness that’s hard to otherwise attain. Most importantly, Glunz-Wenner says, they want to work.

“Our students’ work ethics are second to none,” she says. “They are the kids that don’t come to work late, don’t try to leave early, don’t go outside to talk to their friends, don’t text their girlfriends.”

Yet finding work is no easy task, for anyone, in the region of small, scattered communities on the north side of Peters Mountain roughly 40 minutes from Harrisburg. It has a Walmart and a few industries. Mostly it has mom-and-pop-sized businesses.

 

Upper Dauphin Area High School Life Skills Class Teaches Independence

L. J. Reyes, 20, is part of the Upper Dauphin Area High School life skills class. In preparation for the transition from high school to the adult world, the students do activities such as visiting the residents at The Manor at Susquehanna Village twice a month. The experience helps students learn job readiness and independent living skills. Dressed for the night’s homecoming game at which they sang the National Anthem, students practice at the village. From left is L.J. Reyes, 20, Sheena Erdman, 19, Kara Moretz, 19, Shawn Hassell, 17, Abbey Smith, 18, and Jeffrey Gototweski, 18, (seated). 

It also has natural barriers created by towns and businesses spread out geographically with no public transportation. At one time, agencies commonly transported people with disabilities over the mountain to programs and jobs in the Harrisburg area. But bad weather or an absent driver often interfered, and the Harrisburg-area job market has tightened.

So Dauphin County, which controls state funding for people with intellectual disabilities, is trying a different approach. The county shifted some of the money away from sending them to Harrisburg-area programs, and toward supporting them in regular jobs in northern Dauphin County.

Yet other barriers arise. “The community doesn’t always recognize the benefits of hiring a person with an intellectual disability. There’s kind of an outdated understanding of intellectual disability,” says Shirley Keith Knox, the deputy intellectual disabilities administrator for Dauphin County.

To counter that, the county is reaching out to businesses and informing them of supports available for workers with intellectual disabilities. These include job coaches who will master the job and then provide on-the-job training for the person with the disability.

There’s support toward transportation. For example, a co-worker can receive a stipend for giving the person with the disability a ride to work.

An employment specialist will visit an employer, watch the work that goes on, and try to envision a match between a task and a person with an intellectual disability. When a match arises, it often occurs at a business that wasn’t even looking for additional help, according to Keith Knox. “We find the job the employer needs done and we figure out how our students can get the job done,” Glunz-Wenner says.

Keith Knox stresses that the intent isn’t to rope employers into charity. It’s to supply them with an employee who will add to their company’s productivity. Still, it requires a careful process to find situations that will work out long term, and don’t amount to forcing a round peg into a square hole.

“We don’t want to put a kid on a farm if they don’t like animals or have allergies,” Glunz-Wenner says. “We always look at the student’s strength. If we have a good employee who is open to the idea, we can find a way.”

Meanwhile, she and fellow life skills teacher Susan Ziegler strive to make sure the students are ready when opportunity knocks. The students did school janitorial work over the summer. They launder garments for assorted school teams. They help a local church that produces thousands of chocolate Easter eggs during an annual fund-raiser.

They do recycling projects. These include collecting used paper and tissue boxes at school and turning them into notepads. They volunteer with Meal on Wheels. Their teachers get them registered to vote. This serves the normal civic purpose while also requiring them to assemble birth certificates and Social Security cards — items they’ll need to have handy when applying for jobs.

Dauphin County Commissioner George Hartwick III has witnessed the students and the effort and become a major cheerleader. While it involves government funds, the key is the collaboration involving schools, businesses and churches in northern Dauphin, according to Hartwick. “It’s not government run, it’s people run,” he says.

In northern Dauphin County, there are 91 people of working age who have intellectual disabilities and who are registered for county supports. Of those, 54, or 59 percent, are unemployed, according to Keith Knox.

At the nursing home, the students wear Upper Dauphin football jerseys, in preparation for the homecoming game they’ll attend later. They’re scheduled to sing the Star-Spangled Banner before the game, and they’ve been rehearsing the song. Most of them will remain with their teachers in the hours between when school ends and the game begins. They plan to eat at a local pizza shop, then head to the stadium.

Life-skills students rehearse for Friday-night football performance

A group of students with intellectual disabilities from three high schools in northern Dauphin County will carry the flag and sing the The Star-Spangled Banner at tonight’s Upper Dauphin-Newport football game. The took some time to rehearse today while doing volunteer work at The Manor at Susquehanna Village, a skilled nursing facility near Millersburg.

Shooting for the stars

Beth Lehman met Helen Reyes many years ago when both worked at a weight loss center. She visited when Reyes was in the hospital delivering L.J.

Lehman soon had a daughter, and the women were close during their early years as parents.

But over time, Reyes realized L.J. had a disability. She became consumed by the search for medical solutions and later by her fierce advocacy for L.J. They lost touch.

Eventually Reyes, now dying, went public with an appeal to raise money to provide for L.J. Lehman read about it in the newspaper. Unable to find a phone number for Reyes, she went to a fund-raiser listed in the article.

Reyes wasn’t there, but L.J. was there with his uncle. Lehman told the uncle she and Reyes had been best friends and asked him to relay her phone number.

A call came not from Reyes but from L.J., who left a message stating, “Hey best friend, it’s me. I’m calling about my cats.” L.J. left no contact information, but the answering machine stored a number Lehman used to reach Reyes. They reconnected.

L.J.’s father had been absent for years, his uncle lived in California, and Reyes apparently believed her mother, who maintains a close relationship with L.J., wouldn’t be able to care for him long-term. When Reyes was near death, Reyes begged Lehman to become L.J.’s legal guardian.

Lehman’s mother had a foster brother with cerebral palsy, so she felt comfortable around people with disabilities. Her husband, Bryan, had no such familiarity. Still, she felt she couldn’t refuse the deathbed request. She told her husband “this isn’t up for discussion.”

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Helen Reyes, 39, right, picks-up her son, L.J. Reyes, 12, after school.

Bryan Lehman, is a dispatcher for Sysco, the food distributor, where Beth Lehman also works. His reaction was “this is not a two-year or five-year commitment, this is pretty much a lifetime commitment.” But he also saw what it meant to his wife.

Reyes died and L.J. went to a foster family. But Beth Lehman concluded it wasn’t a good fit and, as his guardian, brought him home. “L.J. is part of our family now,” says Bryan Lehman, 49.

The Lehmans are in no hurry for L.J. to leave their home. Their most pressing concern involves whether he’ll be able to transition to a job when he turns 21 in spring. “He needs routine once he doesn’t have school every day,” Beth Lehman says.

L.J. is highly fashion conscious. He and a county job coach have recently begun exploring the possibility of launching a business in which he would make scarves from old T-shirts.

Helen Reyes once dreamed of L.J. living among caring people in an institution surrounded by lawns and trees. Her dream was based on the movie “Rain Man,” and the institution where the character played by Dustin Hoffman lived.

The Lehmans and Glunz-Wenner believe L.J. can have a life that fulfills his mother’s hope, but it won’t require an institution.

“What I want for L.J. is way beyond that,” Glunz-Wenner says. “We’re going to shoot for the stars with L.J.”

Read the original story about L.J. and his mother.

 http://www.pennlive.com/midstate/index.ssf/2013/01/intellectual_disabilities_reye.html

Filipino Autistic Adults Finding Their Way In Society

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It’s every parent’s dream for his or her child to develop into an accomplished adult and be genuinely happy.
For most, it’s the thought of the child eventually doing well in a chosen career, settling down, and if luck would have it, perhaps blessing them with a grandchild or two.
Yet, these unwritten social standards usually do not apply to parents whose kids have been diagnosed with autism.A developmental disability that affects the cognitive, social, and psychological abilities of a person, autism is a condition that has no known cause and no known cure.
It is an impairment that affects the way a child processes information and acts upon stimuli in his or her environment. Good news is, with proper care, acceptance, love and nurturing, the child’s condition can improve greatly.
“Doon sa pinakamaliit na achievements, masayang-masaya na kami,” Marilen Zabala, a mother to 28-year-old son Emil, said, recounting how their family celebrated their son’s littlest achievements, like learning how to talk and starring in a musical play in the special school where he studied.
Similarly, Cathy Cham, mother to 21-year-old Vico, shared her joy upon discovering their son’s artistic gifts when he was eight years old.

AAAP President Dr. Lirio Covey, artist Vico Cham, Camphill Community Director Ronald Sanchez, and AAAP Secretary Christine Siruelo
“Since then, his passion for the arts evolved. Paper dolls in freehand drawing using pen and ink were his early beginnings in arts, then he developed his skills in computer graphics design and now he is into canvass paintings,” Cham said.
Emil had finished a certificate course in music and is now dabbling in culinary arts, while Vico is now finishing his computer graphics design course while having on-the-job-training in an advertising company.
Despite the disabilities, persons with autism have special gifts, and parents can only wish to leave this life knowing their children are happy. And since they cannot be around forever, they want to ensure that someone’s going to take care of them, long after they’re gone.
“Sana bago man lang kami mamatay, makita namin na masaya at kahit papaano ay may fulfillment sa buhay ang anak namin,” Zabala shared.
Evolving needs
According to Dr. Lirio Covey, a clinical psychologist from Columbia University and president of the Association for Adults with Autism, Philippines (AAAP), the fact that adults with this condition won’t live forever is the glaring inevitability that their organization is seeking to address.
“And also, the person with autism has changing needs over the years and the family won’t be able to fulfill those needs in the best way or in the way that’s beneficial to the person with autism,” Covey added.

Mikey Covey at his Armonk home in New York City with one of the house parents, Maria, and his niece Clarissa.
Dr. Covey’s son Mikey is 34 years old and a resident in a life-sharing group home called Armonk in New York City. Five other men with autism live in the same group home.
“When my son turned 18, I felt really bad for him because he felt he didn’t belong. Whenever we went to parties, he sits in a corner and plays a video game. That’s really isolating, that’s really lonely. Somehow, now in his group home, even though his abilities are limited, he understands there are other people like him and somehow they manage to do things together,” Dr. Covey said.
Since AAAP’s founding last year, Covey, together with parents like Cham, have been combining efforts to build a life-sharing home called “A Special Place” as an alternative home for adults with autism.
Covey envisions it as not just a safe haven for adults with autism, but also as a place where they can take on jobs, as well as find companionship and belongingness.
In the US and other First World countries, there are plenty of state-funded group homes. Here in the Philippines, there are none.
Work in progress
As of now, A Special Place is a work in progress. The AAAP is in need of funding to build six individual houses with farms, as well as educational and recreational areas.
“We are conceptualizing various business models that will enable us to raise money. It has to be self-sustaining. We also want to open up the homes to families who cannot afford to pay so that would mean fund-raising,” Covey said.
For Cham, A Special Place will be Vico’s second home, where he can get to share his life with a community that will care for and understand him.
“Eventually, as we grow old and gray, and incapable of taking care of ourselves, Vico will need a second home where he will belong. But for as long as we are healthy and capable of taking care of him, we would very much like to enjoy our life together,” she said.
An educational symposium
Cham, Covey, together with the member parents of AAAP, talked about A Special Place and other issues concerning adults with autism during a symposium entitled “Diagnostic Treatment and Policy Issues Affecting Adults with Autism” last October 13 at Ateneo Law School in Rockwell Center.
Around 35 people attended this first educational symposium organized by AAAP with the purpose of raising awareness of and addressing the needs of adults with autism.
Ateneo Legal Service Center Asst. Director Atty. Nina Sison-Arroyo talked about the Philippine laws on the rights of persons with disabilities.
Dr. Lourdes “Honey” Carandang, president of the Metropolitan Psychological Corporation, presented a comprehensive framework for understanding autism and families with autism.
She advised the parents, “Don’t feel guilty that you’re not always with the child. Filipino mothers are always guilty, especially if you’re a working mother,” Carandang said, to the laughter of the audience. She quickly added, “but as long as it is in a level that is comfortable, that is okay.”
Dr. Erlinda F. Camara from the University of the Philippines, on the other hand, shared studies conducted here and abroad tackling employment models for persons with autism. She also presented an evaluation of the Philippine workforce, where there is an increasing trend of part-timers, contractuals and freelancers.
The last speaker was Ronald Sanchez, the director of Camphill Community located in California, USA. He shared with the audience his experiences in Camphill, a group home where people with disabilities find a sense of community and society.
A place under the sun
To date, adults with autism are still feeling their way toward finding their place in society.
Emil dreams of managing his own wheat bread sandwich business, while his mother hopes that at least he’d get to apply his culinary skills in a restaurant.
With Vico’s artistic talents, Cham doesn’t stop hoping for a better future for her son.
Cham said, “As parents, we would like him to experience and enjoy life like everyone else. He may have some limitations, but he has gifts more than anyone else. We believe in him so much and with God’s intervention, he will eventually have a place in the sun.” –KG, GMA News

Help Support Mel Turner

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Please read the post below, and if you are interested in helping Mel Turner, click on this link: http://www.indiegogo.com/MEL2012 which will take you to the indiegogo.com page set up to assist Mel.  Adults with Autism are a reality that will not go away; it is only recently that some studies have been done to track the progress of adults on the Spectrum.  Job prospects are hard enough to come by, with an overwhelming majority of Autistic young adults transitioning into the workforce lacking sufficient training and preparation.  It would be an absolute shame to lose the services of a vital, contributing and recognized member of society to bullying.  -Ed 

L.I. PARENTS, STUDENTS RALLY BEHIND FIRED AUTISTIC CUSTODIAN

WANTAGH, N.Y. (CBSNewYork) – Hundreds of people have called for the rehiring of an autistic Long Island high school custodian who was terminated for allegedly making threatening statements.

Parents and students want Wantagh school officials to reinstate 45-year-old Mel Turner.

Custodian Mel Turner (credit: CBS 2)

 Turner was allegedly recorded threatening to blow up the school.

Supporters said his comments were made out of frustration after being bullied and teased by a group of students who recorded him screaming back at them.

“He didn’t mean it,” one student said. “He wouldn’t hurt a fly.”

“It definitely wasn’t his fault,” student Dylan Tanella said. “He has problems and he can’t control that.”

The custodian has apologized for his comments.

“I’m very sorry, I promise to never say it again, I didn’t mean it,” Turner told 1010 WINS’ Mona Rivera. “I think the school should give me a second chance.”

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Education officials said they’ll consider rehiring him.

Support for the special needs custodian took off on Facebook and YouTube, and by the time a school board meeting was held 900 parents with signs had jammed Wantagh High School’s auditorium in an emotional show of support, CBS 2′s Jennifer McLogan reported.

“He’s autistic. He didn’t mean what he was saying. He was venting, and by venting it gets out his anguish and helps him deal with …,” parent Patrick Ryder said, adding when asked if Turner deserves a second chance, “Absolutely.”

Other parents rallying around Turner said the district can use the incident as a teaching tool, a key to understanding autism and reaching out to bullies.

“This is now a great opportunity to step up and see where the system failed him and what we can accomplish with this,” Brenda St. John told McLogan.

Turner said he was overwhelmed by the support.

“It’s very heartwarming. Nice, proud of it,” he said.

Students said they are hoping to see Turner back on the job soon.

“He’s a great guy,” Kristen Wilson said. “He knows everyone’s birthday, he’s so nice around the school.”

“You can really hear it in his voice, he cares deeply about everyone he talks with, and he shows a lot of conviction,” Ryan Reyes added.

The school board has scheduled a meeting with Turner on Sept. 21 to discuss his future. In the meantime, the community has begun an online foundation for him.

Cakemasters Create Delicious Pastries With The Help of Talented Autistic Adults

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Lee & Marie’s Cakery Opens, Hires Autistic Adults

Food joints open all the time in Miami, but few owners can say that opening the doors came with decades of dreaming.

Andy Travaglia’s culinary venture, Lee & Marie’s, opened Friday after 22 years of brainstorming, planning and wishing. The “cakery” is a joint partnership with acclaimed Belgian pastry chef, Yannis Janssens, complete with a menu of mouthwatering croissants, cakes, pies, danishes and more.

However, it’s not so much the adorable, cozy shop that Travaglia is proud of; it’s the mission behind it: creating a business where Autistic adults can work.

Living in New Jersey 22 years ago, her best friend’s son was exhibiting out-of-the-ordinary behavior, and the two friends worked together to find a doctor that could diagnose him. But in the ‘80s, Autism was not a part of people’s vocabulary that it is today.

“I went through the trials of trying to get the help for him,” Travaglia said. “It changed my priorities.”

At that point, she knew she wanted to do something for people with Autism but decided to wait until her daughters were grown. With Lee & Marie’s, named after two women in the family who were known for their baking skills, her dream has become a reality. When she moved to Miami in 2008, she met with professionals at the University of Miami and Nova Southeastern University‘s Center for Autism and Related Disabilities to learn more about what work needed to be done in the field.

“I met so many families and I wondered, what happens to their kids when they age out of the ‘system’?” she said. “It’s a ridiculous amount of incredibly talented adults just wandering the streets.”

In fact, a study found that “youth with an [Autism Spectrum Disorder] have poor postsecondary employment and education outcomes.”

Chef Janssens said that when he met with adults across the Autism spectrum, he was shocked by their proficiency in learning technical skills in pastry, such as creating decorative pieces from gumpaste, fondant, chocolate, even butter. What was once a weakness — being hyper-focused on one activity — was translated into a strength in the kitchen. Also, the Autistic hires are paired with one of the Four Seasons trained staff members for guidance and help. Depending on their comfort levels, the employees can greet customers, bring food to tables or work behind the scenes.

“It’s working out very, very well,” Janssens said of Lee & Marie’s, adding that, “there’s a cause. I can work anywhere I want to work, but now, there’s a reason.”

Not only is there the cause for Autism, but also freshness. Travaglia grew up in farm life and swears she’s never had a Big Mac. The cakery is partnered with three local farms for seasonal fresh fruits and dairy products from a farm in Myakka that delivers weekly. Lee & Marie’s is also creating relationships with local businesses, such as Panther Coffee.

“I wanted to create a comfortable environment, reminding me of the farm table I grew up at,” she said.

Lee & Marie’s has a production store in Wynwood, and the plan is to expand that into a place where customers can visit and see the process as well. But all in all, the goal is to keep hiring Autistic adults and give them a chance to work.

“We’re using [the store] as a prototype not just for us but for other companies,” she said. “An Autistic employee is going to be nothing but a benefit to everybody, not just themselves.”

http://www.huffingtonpost.com/2012/09/07/lee–maries-cakery-opens-_n_1864253.html?utm_hp_ref=autism#slide=1486688