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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.’ ”
As if any of us needed reminders of why we do what we do, and do so without batting an eyelash…
A Walk in My Shoes
C. Waeltermann, 2007
Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse
We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract
The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head
Did I get the right gift?
The right color and style?
Would there be a tantrum
Or even, maybe, a smile?
Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.
“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent..”
And on goes the attack
We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side
We know what it’s like
To live with the spectrum
The struggles and triumphs
But what they don’t know
And what they don’t see
Is the joy that we feel
He said “hello”!
He ate something green!
He told his first lie!
He did not cause a scene!
He peed on the potty!
Who cares if he’s ten;
He stopped saying the same thing
Again and again!
Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope
But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride
We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,
But what they don’t know
Nor sometimes do we
Is that children with autism
We don’t get excited
Over expensive things
We jump for joy
With the progress work brings
Children with autism
Try hard every day
That they make us proud
More than words can say.
They work even harder
Than you or I
To achieve something small
To reach a star in the sky
So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you…
That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.
You will realize
What it is I go through
And the next time you judge
I can assure you
That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned.
- Santa greets children with autism in Virginia Beach (hamptonroads.com)
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.
Isaiah Forte, 9, flashes a brilliant smile from the horse he’s riding. Diagnosed at 2 with autism, Forte for years had difficulty communicating and connecting with others. But then the little boy met a smallish chestnut mare at the HorseAbility Center for Equine Facilitated Programs in Westbury, N.Y., and everything started to change.
“We struggled to find a breakthrough,” Isaiah’s dad, Rick Forte, told TODAY, tears welling up in his eyes. “HorseAbility . . . really gave him confidence. That, to me, was like his coming out party. That was awesome.”
The little boy, who plays classical music and draws, may have had trouble connecting with people, but with the little mare, everything came naturally.
“Immediately Isaiah took to the horse,” said his mom, Dianne Forte.
Isaiah’s parents recognized early that he was not developing normally.
“He didn’t respond to his name,” Dianne Forte said. “He wasn’t sitting up. His core strength was poor. There was a lot of tantrumming because his expressive language was poor. His older brother Rashad was diagnosed with autism when he was 4. So we kind of knew what to look for.”
Barbara Hotchkin, a certified therapeutic riding instructor and lesson manager at the HorseAbility center, said the group provides therapeutic horseback riding services to children and adults with special needs.
Isaiah obviously has no problem talking to the mare as he leads her in the riding ring. “Ginger,” he calls out. “Walk please.” Up on Ginger’s back, he gives the command to speed up. “Trot please,” he says firmly, as they take off at a good clip with a therapist holding on to the bridle and another with a hand on Isaiah’s leg to provide support.
The impact of the little mare has been felt far beyond the riding ring. His teachers see the change in his class work.
“He’s now able to focus better on reading,” said Caroline Farkas, a special education teacher at the Davison Avenue School. “With a child like Isaiah, it’s imperative that you go beyond the four walls of the classroom. I just see horses are helping him in the classroom.”
Isaiah has even competed and won ribbons at a big horse show on Long Island in a class for riders with disabilities.
“His classmates know him as ‘Isaiah who won the Hampton Classic,’” Farkas added.
While it’s clear that riding has helped bring Isaiah out of his shell, it is unclear how it stacks up against other therapies for kids with autism.
There have been a few recent studies looking at the impact of “hippotherapy” on autistic kids, but they were small and researchers used parental reports, rather than expert evaluation, to judge the magnitude of the effects, said David Mandell, director of the center for mental health policy and services research at the University of Pennsylvania and associate director for the Center for Autism Research at The Children’s Hospital of Philadelphia.
“To date, there is no rigorous study suggesting that horseback riding per se is particularly beneficial,” Mandell said, adding that there has been research showing that contact with animals can reduce anxiety in all children.
Mandell would rather see parents with limited resources put their money into proven autism treatments.
The Forte family doesn’t need scientific studies to convince them of the benefit to their son.
“In just these few short years, the progress I’ve witnessed is monumental,” Dianne Forte said. “Isaiah can be absolutely anything he wants to be.”
- Therapeutic Horseback Riding (shelbycollins2009.wordpress.com)
- Horseback Riding Program In Lincoln Helps Kids With Special Needs (boston.cbslocal.com)
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)