ABC: Pope Meets With Autistic Children

Pope Francis tenderly embraced children with autism spectrum disorders, some of whom avoided meeting his gaze, during an audience Saturday aimed at offering solidarity to people living with the condition.

The pope urged governments and institutions to respond to the needs of people with autism to help break “the isolation and, in many cases also the stigma” associated with the disorders, which are characterized by varying levels of social impairment and communication difficulties.

“It is necessary the commitment of everyone, in order to promote encounters and solidarity, in a concrete action of support and renewed promotion of hope,” the pontiff said.

After offering a prayer, Francis greeting the young children and teens with autism and their families, kissing the children and cupping their faces in his hands as he circulated the auditorium at the Vatican. Some appeared to avoid the pope’s eyes, while one teen whom the pope had greeted followed the pontiff and gave him another hug from behind.

Families of children affected with autism were touched by the pope’s words.

“It was an explosion of emotions,” said Maria Cristina Fiordi, a mother of a child with autism. “For us, we are parents of a child affected with autism, this meeting was very important. It was as an outstretched hand through a problem that is very often not considered in the right way.”

Franco Di Vincenzo, another parent of a child with autism, said he took strength from the pope’s call not to hide, “that we should live with this problem in serenity.”

The audience was attended by some 7,000 people, including health care workers who had international conference on autism hosted by the Vatican’s health care office this week.

While autism is increasingly being diagnosed in places like the United States, where about 1 in 68 children are said to be on the spectrum, it is still largely unknown and undiagnosed elsewhere, including in the Vatican’s own backyard of Italy, according to Dr. Stefano Vicari, head of pediatric neuropsychiatry at the Vatican-owned Bambin Gesu hospital in Rome.

At L’Arche, those at the margins find love at the center

from the Washington Post:

by Michael Gerson, opinion writer, The Washington Post

In an older, gentrifying, suburban Virginia neighborhood — the kind with porch flags and pumpkins on the front steps — I am welcomed at an indistinguishable door to an exceptional little community called L’Arche. Here, intellectually disabled “core members” are paired with often young and intensely idealistic “assistants” who share their lives, normally for a year or two. (L’Arche has more than 140 such group homes in 35 countries.)

Hazel, who uses a wheelchair and communicates mainly with a shy smile, has helped prepare dinner. Before the meal, she shows me photographs she has taken during a recent riverside vacation. (Her more typical photographic subjects, I’m told, are babies at church.) Fritz, a middle-aged man with Down syndrome, watches videos of the rock group Queen on a computer in the living room. Before we eat, he offers an extended, emotionally intense prayer, only occasionally intelligible to listeners in the room but certainly (if there is any justice) intelligible to God.

There is a method in L’Arche’s work. Routine and consistency are important. Core members have chores and, when possible, jobs. (Fritz takes out the trash and washes cars at a city facility.) L’Arche is big on rituals of personal affirmation. When any member of the community has a birthday, the others take turns recounting his or her talents and gifts. While L’Arche is not sectarian, the atmosphere is strongly religious. After dessert, a candle is handed around, with each person expressing a prayer request as they hold it.

The assistants are given months of training before they start. But L’Arche’s goal is not primarily the provision of services. The prevailing professional model of social services involves the setting of emotional boundaries. L’Arche exists to cross those boundaries — to strive for a friendship of equals. The saintly founder of L’Arche, Jean Vanier, argues that generosity is offered from a position of power. True communion, in contrast, involves the loss of power and a willingness to be “transformed by weakness.” Assistants approach core members as teachers.

The result is a deeper, riskier relationship. The challenges of dealing with the intellectually disabled should not be sentimentalized. A core member at a L’Arche home recently became threatening and needed to be hospitalized. (“God holds that person,” says John Cook, the executive director of L’Arche in the Washington area, “but we can’t.”) Some volunteers burn out. More typically, however, assistants report being stripped down to emotional essentials and opened to something larger. “My job, what I make, meant nothing to her,” says one assistant of her core member. “She loved me, without any accomplishments, without anything I thought made me lovable. It is how God loves me.

There is a human tendency to recoil from fragility. But we are humanized by closer acquaintance with the intellectually disabled. Cook speaks of his friend Fritz with admiration: “He has the gift of companionship. He is very attuned to distress and overtly comforting. He gives people a blessing by putting his forehead against their forehead. And people come away feeling moved, like something powerful has happened to them.” At church, Hazel sits at the front by the aisle. During Communion, she greets each congregant as they come forward, receiving a kiss on the cheek, as much a part of the service as the bread and wine.

Those interested in the most efficient provision of social services would probably not design L’Arche — a program that lavishly invests a single life in a single life. Whether this is viewed as wasteful depends upon your ultimate goal. “It is a matter of ends,” says Cook. “If your end is the greatest good at the least financial cost, then some get favored and some discarded. If your end is a place where everyone has a place of honor, and where everyone lives in love, then L’Arche is experiencing it. People who get pushed to the margins are intentionally placed at the center.”

This small community accomplishes many outsize things. It vindicates the ideal of human dignity, which does not depend on normal measures of human accomplishment. It lays bare the illusion that ability means superiority. It displays the lavishness of grace, which, in Christian theology, is needed by and granted to us all. And it shows — amazingly, inspiringly, accusingly — that the beloved community might be created on any suburban street.

Published in The Washington Post October 27, 2014.

 

Irish Times: My Spina Bifida life: ‘Hi, I’m David. I’m a stand-up comedian’

Corkman talks of his journey from mainstream school to university in London

“I had a lifesaving operation just after I was born. I was diagnosed with spina bifida before birth. These days, you can treat babies for spina bifida in the womb, but that wasn’t an option for me. My back had to be mended because I had a huge wound for a small person.

My mother is a nurse and I have an uncle who’s a doctor. Because of their medical backgrounds, they were able to make decisions that were necessary for me. They built up their knowledge of spina bifida. I had other health issues associated with spina bifida, but nothing long term. My health is very good, considering.

I was only three when I first started using a wheelchair. Until then, I used to crawl a lot. I don’t remember being told what I had, but from the age of three I developed an awareness of being somewhat different. That really came to light in primary school. When all the boys in the class were playing soccer and I couldn’t, it affected me. But to compensate for that, my parents encouraged me towards doing wheelchair sports. I did swimming and athletics, but I didn’t make it to the Paralympics.

Children can be cruel, but the funny thing was that anyone I had a problem with wouldn’t actually make light of my disability or say anything about my wheelchair. It’s a taboo subject and not something that people generally would use as a weapon. It was always something else; your hair, or your teeth, or your glasses.

When I started going to school in 1996, people with my condition were still going to special schools. My parents didn’t want that in any shape or form.

They were always pushing me to my best potential. They sent me to a mainstream school and I wanted that too, even though I didn’t know the difference at five years of age.

Disability rights
In my teenage years, I started to develop a consciousness about the rights of people with disabilities. When I got to the age where I was able to go into town, I started to notice a lot of places that were inaccessible to me.

A lot of nightclubs in Cork are upstairs, some without lifts. My dream would be that Ireland would catch up with some states in the US where every facility has to be fully accessible. In some places in the US, if a pub, club or cafe doesn’t have wheelchair-accessible toilets, they’re closed down and there’s no arguing about it. I’ve always pushed myself to get to places. I’ll get out of my wheelchair and crawl up a stairs if I have to.

I’m ambitious. I’m always thinking one step ahead. I won the UCC Graduate of the Year award for 2013. To win it, I had to get first-class honours every year in my exams as well as taking on extracurricular work.

read the original article

NPR: How Hema Ramaswamy Found Healing Through Traditional Indian Dance

Jewish girls go through the bat mitzvah, 15-year-old Latinas celebrate the quinceanera. And for generations of Indian-American girls, the culmination of years of studying classical Indian dance is a lavish solo performance before a crowd of hundreds. Reporter Arun Venugopal of member station WNYC attended what may have been the first such performance by a woman with Down syndrome.

An arangetram, which literally means “ascending the stage,” is a major accomplishment that takes years of preparation. This moment, when a student of dance or music asserts her artistic independence, usually happens in the teen years. Ramaswamy is 23.

Ramaswamy, who has Down syndrome, originally began dancing for health reasons. “But then it became part of her, and she really loves and enjoys it, and it took her 13 years with a lot of challenges, midway, to complete this,” explained her father, Ram. “And now today is a perfect day for her — her graduating in this art.”

She was able to achieve this despite her diagnosis and despite two major surgeries for a dangerous leak of cerebrospinal fluid. Her father said dance has strengthened Ramaswamy’s muscles and given her fine motor skills she simply didn’t have before.

“I feel so happy in dancing,” she beams, surrounded by a flurry of doting aunties while preparing for her performance.

read the article

CNN: How deep brain stimulation could unlock secrets of Tourette’s

“Sitting in class, second grade, teachers would put me outside the hallway because I had been ticking so loud I was a ‘distraction,'” recalled 25-year-old Amber Comfort. “Teachers would walk by me back and forth and say ‘you’d better stop that before you get into my class next year.’ Things that were just completely obscene, that you would never expect the world to be, and I had to deal with on a daily basis.”

From the age of five, Comfort has suffered from Tourette’s syndrome, a neurological disorder that causes her to make involuntary movements and loud noises, known as tics.

For almost 20 years, the condition has shaped every moment of her life. “I don’t remember any parts of ever being tic free,” she said. “There’s not a day that’s gone by that I don’t remember moving or making noise when I couldn’t help it.”

But she has not let Tourette’s dictate how she lives. Comfort graduated from high school with honors and was even accepted to college on full scholarship. But her uncontrollable outbursts have made it hard to continue her education or even hold down a steady job.

read the original article

The Amazing Story Of The Blind Engineer (Who Is Also A Triathlete)

Patricia Walsh is one of those people who seems to excel at everything she does. After several years in a successful and coveted stint as an engineer at Microsoft, she left to join Austin, Texas-based mobile payment app Mozido—a job she loves—in 2013. A longtime marathon runner, Walsh completed her first triathalon in 2010 and began breaking records a year later. She launched a motivational speaking business and wrote a book.

She’s also blind.

Walsh lost most of her vision when she was 14 as the result of a pediatric brain tumor and subsequent complications from the surgery to remove it. Today, her field of vision is a six-degree “tunnel of light, dark and motion.” She went from being a student on track to graduate from high school early finding it hard to read children’s books in Braille.

The trauma of losing her vision took a toll on Walsh. Depressed, angry and frustrated, she was living with her father in northern Ontario, Canada. Then her father started having health issues, including two strokes and two heart attacks in less than a year. To cope with the trauma of losing her eyesight and to get herself healthier, she started running.

read the original article

The Hill: Jobs Where They Are Most Needed

A recent report has warned that the trust fund undergirding the Social Security Disability Insurance program (SSDI) is nearing depletion.  At the same time we hear reports – mostly from states – that Supplemental Security Income (SSI) payments are a vital safety net for many individuals and families.

We believe there’s a way to relieve these pressures and create a path to meaningful lives for many individuals with cognitive and physical challenges. That path is bound up in a single word: Jobs.

But first, let us introduce John D.

John D. is a 21-year-old with autism. He has learned to read, do basic math and master skills that help him get along in the community. John also now has a job – a full-time job – at the National Institutes of Health. It is not a “special” job. It is a job that requires him to file papers, follow orders for materials to be delivered, maneuver across the large NIH campus and interact with other employees. He has this job because NIH saw value in and agreed to participate in a program called Project SEARCH.

With a few of years of work-experience training at The Ivymount School, John and several classmates were selected by NIH as Project SEARCH interns for a year. They worked on the NIH campus in a variety of jobs with the support of a job coach. At the end of the year, John was one of eight young adults offered a job. He lives at home, gets himself to and from work using public transportation and, most important, is a self-supporting, contributing member of society. John’s supervisor will tell you that he is among his most dependable employees, arriving every day on time, often being the first to volunteer to work on holidays.

Once a candidate for SSI support that averages about $6,600 annually, John D.  now pays taxes that support the system.

In our experience, for every John D., there are many others who can find only part-time work or no work at all. Even though some may have more significant deficits, they are clearly capable of holding a job. The problem is that there just aren’t enough jobs for individuals with disabilities – a problem that has grown worse under current economic conditions.

For John D.’s classmates, it means they cannot find a job. Some of them, undoubtedly, will end up on SSI as parents look to the years ahead, when they may not be around to support their children. Continue reading The Hill: Jobs Where They Are Most Needed

NYT: A Natural Fix for A.D.H.D.

ATTENTION deficit hyperactivity disorder is now the most prevalent psychiatric illness of young people in America, affecting 11 percent of them at some point between the ages of 4 and 17. The rates of both diagnosis and treatment have increased so much in the past decade that you may wonder whether something that affects so many people can really be a disease.

And for a good reason. Recent neuroscience research shows that people with A.D.H.D. are actually hard-wired for novelty-seeking — a trait that had, until relatively recently, a distinct evolutionary advantage. Compared with the rest of us, they have sluggish and underfed brain reward circuits, so much of everyday life feels routine and understimulating.

To compensate, they are drawn to new and exciting experiences and get famously impatient and restless with the regimented structure that characterizes our modern world. In short, people with A.D.H.D. may not have a disease, so much as a set of behavioral traits that don’t match the expectations of our contemporary culture.

From the standpoint of teachers, parents and the world at large, the problem with people with A.D.H.D. looks like a lack of focus and attention and impulsive behavior. But if you have the “illness,” the real problem is that, to your brain, the world that you live in essentially feels not very interesting.

One of my patients, a young woman in her early 20s, is prototypical. “I’ve been on Adderall for years to help me focus,” she told me at our first meeting. Before taking Adderall, she found sitting in lectures unendurable and would lose her concentration within minutes. Like many people with A.D.H.D., she hankered for exciting and varied experiences and also resorted to alcohol to relieve boredom. But when something was new and stimulating, she had laserlike focus. I knew that she loved painting and asked her how long she could maintain her interest in her art. “No problem. I can paint for hours at a stretch.” Continue reading NYT: A Natural Fix for A.D.H.D.