Billy Nacmias weighs in at 168 pounds today (left) since checking into Center for Discovery in the Catskills at 280 pounds (right).
There could be no better Christmas gift than watching your son’s life be saved.
But Jack had been used to having his own home wrecked.
He lived with his autistic teenage son, Billy, who had grown up as a mild-mannered boy lost in the bewildering maze of his affliction.
But as Billy reached full-muscled puberty, he was beaten by a teacher in now-defunct Beach Channel High School. Billy’s reaction was to eat uncontrollably until he hit 280 pounds. His anger grew in scary proportion.
“Some days, Billy would just suddenly go berserk and destroy the whole house,” Nacmias said. “The cops would have to come to restrain him. My wife and I would clean up the mess and weep. Not for ourselves. For him. For Billy. We didn’t know how to help him.”
Jack and his wife, Jane, loved Billy as much as their other kids, James and Danielle. But Billy had reached an age when keeping him at home was counterproductive to everyone’s quality of life — especially his own.
The Nacmiases sued the city.
As part of the settlement, the city offered to let them pick an institution of their choosing to try to rectify the harm done to Billy. The Nacmiases searched for the right place, where experts might rechannel Billy’s rage.
A few days after Thanksgiving, I stopped by the Nacmias and Son Sunoco station on Coney Island Ave. for my six-month tuneup. The usually jaded Jack Nacmias was a bouquet of smiles. I asked for the same high-octane gas he was on.
Billy Nacmias as Scrooge in ‘A Christmas Carol,’ a role which contributed to the discipline that led to his dramatic weight loss.
“I believe in miracles,” he said. “My son Billy has been saved.”
Nacmias started talking as fast as a tobacco auctioneer. Billy had been placed in the Center for Discovery in the Catskills. He said professionals there had transformed his overweight, unhappy, often violent son into a trim, joyful and productive young man.
Jack whipped out remarkable before-and-after photos.
“When we visited him, Billy rushed out and hugged us and proudly showed us the house he shared with four other kids on this 1,000- acre paradise,” Jack said. “There’s a full-time nurse, all kinds of dedicated counselors, and he works with egg production in the henhouse, with horses and sheep. He dropped from 280 pounds to 168 pounds, and he’s the trail leader on team hikes. He’s also studying drama to play Scrooge in ‘A Christmas Carol.’ ”
Jack is a grizzled Brooklyn grease monkey, not prone to sappy displays of emotion. But as he talked about his son, he wiped a damp eye. “On Thanksgiving, we took Billy to my cousin’s house and he ate with perfect table manners, using a knife and fork,” Jack says. “Billy ate responsibly, and when he was done, he asked if he could be excused.”
Billy Nacmias found a passion for the stage — among other things — at the Center for Discovery in the Catskills.
Nacmias said the Center for Discovery is equipped with state-of-the-art technology and programs for autistic kids like Billy.
“The Center for Discovery uses a holistic approach,” says spokesman Loren Riegelhaupt. “All the food the students eat here is organic, farm fresh. They also work. As they lose weight and detoxify from chemical additives, they tend to calm down and sleep much, much better and act out less. They also can focus and learn more. In his 18 months here, Billy has gone through an astounding transformation. We’re thrilled with his success.”
Nacmias is thrilled, too.
“Listen, I use tools, parts, and labor to make a car run,” he says. “But these people have tools and counselors to perform human miracles. They have given my son Billy a life and given my family more happiness than you could ever know.”
The only sad part of the story is that Billy will soon reach the age of 21, when he must transfer out of the center.
“But his progress has been so remarkable that the counselors are trying to see if they can actually hire him to work with new kids like he was when he first arrived,” his dad says. “If they can, he’ll have his place in life.”
On Wednesday, Jack and his family drove up to see Billy in “A Christmas Carol.”
“I’m a Jew,” said Jack. “But here’s my son Billy, who used to wreck the house, memorizing lines and performing in the greatest Christmas story ever written. When I saw him playing Scrooge on stage, I was in tears with pride. It was the greatest gift our family has ever received. Billy has found meaning in life. Now I understand what Tiny Tim means when he says, ‘God bless us, everyone.’ ”
Click on this link to view the video: http://www.myfoxdfw.com/story/24016357/winning-athlete-gives-medal-to-teen-wrestler-with-autism?autoStart=true&topVideoCatNo=default&clipId=9548848
In high school sports, medals are coveted tokens of accomplishment and symbols of sweat and strength.
Some were given out at Tuesday night’s meet between Frisco’s Wakeland High School and Flower Mound High School, but one young athlete wears a medal given to him by a selfless champion.
Alex Chappell, 15, loves wrestling more than anything. With anticipation, he watches each takedown, waiting for his chance on the mat.
He competes for the Frisco Wakeland High School junior varsity team.
Chappell was diagnosed with severe autism at age 8, and has only competed in the Special Olympics – until last Friday.
That was when his very first meet took place, in a 16-team tournament at J.J. Pearce High School. Chappell got pinned, losing both matches.
“I asked him how he did, and he said he lost out 0-2, and he was really bummed,” said Chris North, a junior at Northwest High School. “He was just sitting there playing with some cups by himself.”
North and Chappell’s paths crossed at the tournament, when their teams were seated next to each other.
“We were standing in front of the brackets, and he asked me if I could help him find his name, so I told him where he would be and what he’d be coming up to,” said North.
Hours later, North had won his four matches and earned a silver medal. Then, he did something remarkable.
“I walked around the gym and I had to find his team, and I found him sitting by himself, and I put the medal around his neck and I told him, “I won this for you, buddy,” said North.
That medal has barely come off of Chappell since.
“I want to say thank you,” said Chappell. “I love it.”
Chappell’s mom, Sharon Segura, didn’t learn of the story behind the medal until she read an email from his coach Monday night. His words brought her to tears.
“He tries so hard to be accepted, and for this kid to see him as a person, and not for his disability, makes me so proud,” she said.
It may seem like a small gesture, but it changed Chappell’s life.
“He looked like a winner,” said North. “He looked like a really nice kid who deserved a medal, and he deserved to feel like he won.”
What’s even more impressive is that North only told one person about his gesture.
He asked a teammate what he thought of the idea before he did it, and the teammate said absolutely.
Not even North’s coach knew until the next day.
Both coaches and parents hope other kids will see North’s selflessness and pay it forward.
by Todd Drezner, via Huffingtonpost.com
If you are the parent of an autistic child, you may be surprised to hear that you are not actually living. Yes, I’m sure it’s a shock, but you can find this and many other startling statements about autism in a recent article written by Suzanne Wright, the co-founder of Autism Speaks.
According to Wright, families with an autistic child, “… are not living. They are existing.” She conjures a world in which “we’ve for the most part lost touch with 3 million American children” who are autistic. And she claims that for families with autistic children, “Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future.”
The world that Wright presents is a fantasy. Yes, autistic people face challenges, some of them severe, but to present their lives as nothing more than unrelenting tragedy and despair is simply dishonest. And stirring up fear of and pity for autistic people doesn’t actually do anything to help them live lives that are far more nuanced than Wright would have it.
Given the disdain that Wright’s fantasy world shows toward autistic lives, you might not expect Autism Speaks to be a funder of one of the best recent support programs for autistic children. And yet, that’s exactly what happened with Keeping it Real, a website partially funded by a Family Services Community Grant from Autism Speaks. In contrast to Wright’s vision, this site shows how the lives of autistic children can be improved — with the help of autistic adults. Keeping it Real has something to teach its funder.
The site was developed in part by Lauren Hough, Kristie Koenig, and Aaron Lanou of New York University’s Steinhardt ASD Nest Support Project, which provides training and on-site support for professionals working in the ASD Nest program, New York City’s inclusion program for autistic students. Keeping it Real offers lesson plans, activities, and video clips for educators, therapists, and kids on the autism spectrum.
According to Hough, “We wanted to have strength-based modules that we could use to support our middle school students with autism. We were interested in activities and materials that would empower our students and help them find their strengths and voices.”
But to create those materials, the ASD Nest Support Project did not turn only to education professionals. As NYU’s Koenig explains, “True partnerships between academics, professionals and autistic adults will be the way to improve services and supports for all autistic individuals and the autistic voice has to be central.”
For that reason, to create the website, NYU partnered with three autistic adult self-advocates: Jesse Saperstein, who developed an anti-bullying curriculum; Dr. Stephen Shore who helps students recognize and build on their strengths; and Zosia Zaks, who teaches self-advocacy. (Full disclosure: I am partnering with the NYU faculty and the self-advocates on an unrelated autism project.)
Zaks, who provides counseling services to autistic people and their families, learned the importance of self-advocacy from personal experience. “I had very little self-awareness when I was a teenager,” he said. “It’s not just about challenges. I had lots of strengths too, but no language. I learned to advocate for myself only by trial and error. But that took up a lot of energy and I missed out on so many opportunities.”
To help autistic children learn from his experience, Zaks created materials explaining what self-advocacy is and video examples of people advocating for themselves both at school and at work. Zaks believes that self-advocacy is a vital skill because, “The Americans with Disabilities act is a self-advocacy law. Once you are an adult, it is your responsibility to ask for and to arrange the accommodations you need to work or to live in the community.” And, as Zaks points out, self-advocacy is not about opting out of the community, but rather opting in. As he puts it:
Let’s say you have a sensory issue at work with the intense overhead lights. If you don’t even know what sensory issues are in general, and if you have no idea how to manage your specific sensory issues, you’re going to encounter huge barriers to success. Advocacy skills enable you to be proactive. What do you need to get back to work?
Like Zaks, Jesse Saperstein came to an interest in bullying through personal experience. Saperstein, the author of a memoir about life with Asperger’s, says, “A lot of what I do is cathartic and my curriculum is designed to give students what I needed as a young child and what would have made a difference.”
Interestingly, Saperstein’s personal experiences include not only an extensive history of being bullied, but also an example of when he bullied a less-popular student. Having been both victim and perpetrator, Saperstein brings expertise to Keeping it Real lessons on cyber bullying, blaming the victim, and bystanders.
In addition to his work for Keeping it Real, Saperstein speaks about bullying at schools and other organizations. He notes, “My presence is the first time the students are seeing an adult version of their fellow classmates who are often isolated or made fun of on a daily basis.” To show them what life as an autistic adult can be like, Saperstein designs his work “to flaunt my eccentricities, and I typically show off silly props like a paddleball, cup-and-ball toy, and bouncy balls.” He believes that “students are not given enough credit for their innate compassion. They simply need enough resources to promote this new consciousness.”
Stephen Shore’s work on Keeping it Real is only one of the many autism projects on which he works. An Assistant Professor of Special Education at Adelphi University, Shore openly discloses being on the autism spectrum. He comments, “Increasingly, I see individuals with autism achieving great success, fulfillment, and productivity when encouraged to follow their strengths — to the point of becoming regional, national, and sometimes worldwide experts in their area of interests.”
The work of Saperstein, Shore, Zaks, and other autistic self-advocates is inspiring. And if Autism Speaks was best known for partnering with autistic adults and funding projects like Keeping it Real, it could be an inspiring organization. Unfortunately, whatever good work Autism Speaks did in this instance is completely undermined by the tone-deaf words of Suzanne Wright. Even worse, Autism Speaks has a long history of excluding autistic voices and promoting fear and pity of autism.
An organization with the resources of Autism Speaks that was focused on working with the autistic community could fund countless projects like Keeping it Real. Rather than dismissing the lives of autistic children as hopeless, such an organization could partner with self-advocates to offer important resources that would help autistic children develop vital skills they need to make their way in the world.
Sadly, though, such an organization is currently as much a fantasy as Wright’s despair-filled world. Autism Speaks remains an organization largely opposed by the very community it claims to serve.
Fortunately, we have Keeping it Real — a site that stands as a rebuke to the founder of one of its funders. It’s an odd position to be in, but I’m glad the site is there. It presumes that autistic children have strengths, and it sets out to build on them. It does so with the best resource available to children on the autism spectrum — autistic adults. Their work will keep it real and make it better.
THE DAY MY SON WENT MISSING
Wandering Is A Major Concern For Parents Of Children With Autism
By LORI McILWAIN, via NYTimes.com
NOW in its sixth week, the search for Avonte Oquendo, a 14-year-old boy from Queens with autism, is shining a light on the issue of wandering among people with autism. On Oct. 4, Avonte managed to slip away after lunch from his school in Long Island City — even though he was known to wander during classroom transitions.
While most people associate wandering with elderly sufferers from Alzheimer’s or other types of dementia, a recent study published in the journal Pediatrics found that 49 percent of children with autism were prone to the behavior. Given the prevalence of autism — at one in 88 children, or one in 50 school-age children — it’s clear this is an everyday concern for many thousands of parents.
The day Avonte went missing, a Friday, a 12-year-old boy with autism was in a medically induced coma in Oakland, Calif. According to reports, he had wandered from his mother in a parking lot and entered eastbound traffic on I-580, where he was struck by at least one vehicle. By Sunday, another child with autism had gone missing: 5-year-old Devonte Dye wandered from his grandparents’ home in southeast Missouri. Tragically, he was found the next day, drowned, in a slough near the St. Francis River.
Since 2011, 41 American children with autism have died after wandering, or “bolting,” from caregivers. Water is often a fatal draw for these children. Since April of this year, 14 out of 16 deaths were from drowning.
Even as a campaigner, I did not appreciate the full magnitude of the issue until my own child went missing in 2007. Connor was 7 years old when he left his schoolyard, unnoticed, through an unlocked gate and made his way toward a four-lane highway.
Many children with autism have particular fascinations, and Connor’s is with highway exit signs. For our family, driving up and down the interstate was a fun day out. We never suspected he’d attempt to get there on foot.
Luckily, a passing driver noticed our son; the driver turned around, just in case. When Connor failed to answer a few basic questions, he was taken to another nearby school. That school called the police. The police had no idea how to deal with Connor: An officer mistook our mostly nonverbal child for a defiant rule-breaker who needed some “tough love.”
Finally, a staff member at the school reached me, but exactly how long Connor had been missing by the time I got to him, no one could tell me. Connor was hysterical, shaking. I scooped him up in a hug, whispering through my own tears, “You’re O.K.”
That was our big wake-up call, but it didn’t end there. Connor’s wandering had started in day care and continued through school. He slipped out during classroom transitions, as Avonte did. We found ourselves keeping Connor home on days we feared it might be easier for him to slip away. Here I was, an advocate for others, yet I could not keep my own child safe.
Today, the National Autism Association, where I work, provides information and resources for caregivers. Back then, there were no fact sheets to support our pleas for greater vigilance. And, to this day, there is no guidance from the Department of Education; no protocols, not even a mandate to notify parents of any wandering attempts. At the N.A.A., we often hear from parents who have a child who cannot sleep, forcing caregivers to barricade doors and take shifts staying awake. Others are so desperate that they hide their child’s shoes to slow them down in case they escape.
Under federal criteria, which most states follow, the Amber Alert system can be used only for children known to have been abducted. Wandering doesn’t count. Instead, the refrain most often thrown at parents is simply “watch your child better,” or “find a school that will watch your child better.”
Imagine if that were the advice given to those who care for Alzheimer’s patients. In fact, the Department of Justice provides about $1 million a year for first-responder training on Alzheimer’s-related wandering and tracking technology. There is no equivalent funding for autism-specific wandering and no more than a promise, in 2011, from Kathleen Sebelius, the secretary of health and human services, to give the issue “serious consideration.”
If consideration had become action, perhaps Avonte would be home safe right now. There is still a lack of awareness in schools. Simply to provide better teacher training on wandering would help prevent future disappearances.
So where is the federal autism program on wandering prevention? Yes, budgets are tight, but here is our choice: We can spend the money now on awareness and training, or later, on huge, intensive searches for missing children.
Now 13, my son wears a tracking device, and is learning ways to keep himself safe. In his room are miniature replicas of his favorite exit signs, and a laptop, which he uses to draw them whenever he likes. He hasn’t attempted to reach the highway since getting the laptop. He’s also at middle school now, cared for by an amazing staff. While Connor still has phobias that can make bolting behaviors difficult to prevent, we finally have the resources to help keep him safe.
But not nearly enough is being done to keep children like Avonte from disappearing. Too many parents are still going through the anguish of losing their wandering children.
- Chuck Schumer Calls for GPS Tracking of Autistic Children… (breitbart.com)
- NYC Missing Boy Stirs Fears For Special-Ed Parents (huffingtonpost.com)
Picking at a muffin in a campus cafe, Laura Mackenzie says she and her parents thought she’d go to college, “but pretty much everyone else didn’t.”
Cheerful and matter-of-fact, the 23-year-old recounts troubled years that included difficulty walking and expressing herself, tantrums, inability to interact with people and cringing from physical contact.
She remembers seeing kids playing and not having a clue what to say to them, “although I wanted desperately to join them,” she says.
She was diagnosed with autism at age 7. But she was obviously intelligent.
Armed with her own determination, her parents’ enthusiastic support and some help from special programs in school and college, here she is, earning a bachelor’s in behavioral science at Metropolitan State University in Denver.
“To put things into context, people thought I’d be in a mental institution,” says Mackenzie, who says she processes information and expresses herself relatively slowly but now belongs to two honor societies. “Looking back on it, it’s almost funny.”
For the uninitiated, it’s hard to understand how someone having trouble dealing with everyday life can achieve academically.
But it can happen with autism, and as a rising percentage of children are reported to have the disorder, a growing number of colleges and universities are offering programs to help them with the college experience.
“These are spectacular kids; they think about the world differently,” says Mitch Nagler, director of the Bridges to Adelphi program at Adelphi University in Garden City, N.Y. “We have kids here who got 800s on their SATs, … but they definitely have problems.”
One student at Eastern Michigan University has published three graphic novels but can get lost going from one of his classes to another — even though they’re in adjacent buildings — without practicing how to get there.
“Without question, he will always be under the care of someone,” says Dr. Patricia Lemerand, clinical director of the Autism Collaborative Center at EMU.
Getting extra help
Students with autism must do the assignments and take the tests, just like anybody else. But higher ed institutions are required by law to offer some academic accommodations, including note-taking services, longer times to take tests and separate locations for taking exams.
Some colleges go much further, depending on the needs of the individual. Their services can include frequent meetings with students, accompanying them or doing whatever else it takes to ensure they know how to get to class, plan ahead on assignments and tests, feel at ease socially and even eat and shower regularly. Staff members and peer mentors will also intervene with professors on a student’s behalf about what the student needs. Some students get their own bedrooms, because dealing with roommates can be too stressful.
The extra services can come at a cost. At Adelphi, for example, parents pay $2,620 per semester — on top of tuition — for what Nagel says is one of the most comprehensive programs in the country.
Fees for EMU’s program, which can be very intensive, range from $4,500 to $7,500 a semester. Others are less expensive, including Colorado State University’s, which costs $1,500 a semester.
Some parents and kids shop around for programs with the best fit, meeting with program administrators before applying to schools.
Just getting the kids to the college level can require a tremendous investment of time, money and effort, and with those extra fees, poor and minority kids can be left behind, program directors say. High schools in poor neighborhoods may have fewer services, leaving students unprepared to go to college.
The percentage of reported cases of Autism Spectrum Disorder (ASD) among children has climbed dramatically, with cases reported in all races and ethnic groups. It’s more prevalent among males than females. The overall percentage rose from 1.16 percent of children aged 6 to 17 in 2007 to 2 percent in 2011-2012, according to the Centers for Disease Control and Prevention. Most of the increase stemmed from boys and adolescents, aged 14-17. The rise is attributed mainly to better detection and reporting.
At least two dozen colleges and universities in the U.S. have special programs to help students with autism, and the number of programs is “growing every month,” says Dr. Jane Thierfeld Brown, a longtime disabilities expert who teaches colleges how to help autistic students. Programs are often a collaboration of several departments, such as psychology, social work and education, with graduate students serving as peer mentors.
Developing social skills
ASD includes a host of neurological conditions, with varying degrees of difficulties with language and communication, and rigid patterns of thought and behavior.
Students with ASD, which includes Asperger’s syndrome, can be poor at planning ahead, getting organized, standing up for themselves, reading body language, knowing how they come across to people and thinking other than in a linear, literal way. They may be brutally honest in their conversation and come off as aloof, arrogant, odd or clueless about what’s going on.
But they can be trained to be more aware, diplomatic and assertive in an effective way — skills needed for college, “the most social place you can think of,” says Brown, author of The Parent’s Guide To College For Students On The Autism Spectrum, published in 2012.
Students are together for meals, classes and in dorms, and are often racing to classes along with hordes of other students. “Even when they eat, sleep, wash, it can be overwhelmingly people-oriented,” Brown says.
People with autism can also be overwhelmed by stimuli such as bright lights, strong smells and loud sounds, all of which can be part of the college setting.
At the University of Arkansas, one student doesn’t want to attend football games because they’re too loud. But many students outgrow such issues by college, according to Dr. Aleza Greene, director of the school’s Autism Support Program.
Still, students with autism have different traits and must be evaluated very carefully before a plan of action is drafted. “Our saying is, ‘If you’ve seen one, you’ve seen one,’” Nagler quips.
Some students may not divulge that they’re autistic and thrive without help. Others need a broad range of services, but the goal is to teach them, through repetition and practice, what might be second nature to other students.
Some students think they don’t need help, but their grades say otherwise. “I tell them, ‘You may want to rethink your approach,’” says Greg Root, assistant director of Metro State’s Access Center for Disability Accommodations and Adaptive Technology.
The first year, as with many students, is the toughest, requiring a sudden, drastic change in degree of independence and academic structure.
Many students with autism take less than a full course load each semester and graduate in more than four years. Students delve into a variety of subjects. Nagler’s students have majored in math, physics, communication, accounting, history, biology, business, economics, art, sports management and other fields.To prepare for the world post-college, students can get career counseling and help preparing for job interviews. Some employers seek out individuals with ASD, says Julia Kothe, director of CSU’s Opportunities for Postsecondary Success Program.
Kothe and others with autism programs marvel at how attitudes have changed. Nagler recalls people’s reactions when he did a year-long study in the New York area in 2006 on whether such services were needed in colleges.
“Some said, ‘We don’t want those people here,’” remembers Nagler.
Mackenzie says she likes talking about autism. “I want to spread information about it,” she says. “I want the whole world to know.”
- DOE, UMaine launch autism resource, research institute (mainedoenews.net)
- Students with disabilities finding new college options (foxnews.com)
- Autistic Students Find Support At Marshall University (beyondautismawareness.wordpress.com)
- Autism, learning disabilities services grow on college campuses (csmonitor.com)
By MICHELLE DIAMENT via Disabilityscoop.com
When a 14-year-old went before his local school board to take issue with the implementation of his individualized education program, he was rebuffed and now video of the incident is going viral.
In a speech that Ranieri told Northpoint Patch he worked on for three hours, the teen spoke to the board about his experience with autism and said that his IEP was not being followed. Ranieri indicated that he was inappropriately disciplined and suspended because of his disability.
But just minutes into Ranieri’s speech, the teen was cut off by board president Stephen Waldenburg who said that disciplinary matters could not be discussed at the public meeting.
“This entire discussion which involves disciplinary action is totally improper for a public session,” Waldenburg said.
Ranieri’s parents objected saying that their son just wanted to be heard, but to no avail. Officials at the meeting told the family that their concerns should be taken up with the district’s superintendent, Marylou McDermott.
Video of the interaction is now going viral, with more than 46,000 views on YouTube since it was posted Tuesday.
Nonetheless, Waldenburg is sticking by his handling of the incident, telling Patch in a statement that “we recognize the sensitivities of this issue, but stand firm in ensuring that we are in full compliance with all state and federal laws, as our oath of office requires.”