Tom Brady's Big Commitment to Best Buddies

Tom Brady started volunteering with Best Buddies when he was 23, still driving an ugly yellow Jeep and able to go to Red Sox games regularly without being recognized.
He's 34 now. Stuff's changed.
But his commitment to Best Buddies has not.

After DOJ Ruling, a Struggle to Find Homes

ARLINGTON, Va. -- Local governments across Virginia are struggling to cope with a settlement agreement that will change how the state handles people with intellectual disabilities.
Ever since a federal judge issued a ruling earlier this year to close what Virginia calls "training centers" -- essentially, institutions -- members of the Arlington Community Services Board have been struggling to figure out what's next. Right now, there are more questions than answers, and time is running out.
The Department of Justice determined that the state was essentially warehousing people in violation of the Americans with Disabilities Act, which is forcing most of the training centers to close. Local governments across Virginia will have to pick up the slack. In Arlington, that means the county will have to have to create new group homes for three dozen individuals who are currently living at the Northern Virginia and Central Virginia training centers.

Relating to Children on the Spectrum

According to a study from the Centers for Disease Control and Prevention, one child in 88 has an autism spectrum disorder (ASD). That’s a 23-percent increase since the organization’s last report in 2009. That ratio is even higher in New Jersey, which reported one child in 49 diagnosed with an ASD.

In spite of his autism spectrum disorder, Daniel Stefanski wrote 'How to Talk to an Autistic Kid' at the age of 14.

While it may seem like an epidemic is underway, the CDC attributes a lot of this increase to improvements in identifying, diagnosing, and treating children with ASDs. It has absolutely nothing to do with vaccines, according to the Institute of Medicine, and the CDC agrees.
Some experts believe that New Jersey ranks so high simply because its medical and educational personnel are particularly adept at identification and diagnosis—and because parents in New Jersey are more aware of ASDs as well.

New Drugs, Fresh Hope Children with Autism

Lynn and Neil Balter always dreaded stage productions at their son Jack's elementary school.

Jack Balter with his toys at home.

When Jack was up there with the other performers, the noise, the lights, the crowd almost always got to him, and he would "start spinning," wandering around the stage or turning in circles, Lynn says. "It usually turned into an embarrassing situation," she adds.
But at a dance performance at Jack's Scottsdale, Arizona, school last December, something was different. "He was half a beat behind in the dance, but he did the whole thing," Neil says. "He participated and took the bow with his class."
Afterward, Jack's teacher greeted the Balters in tears. "I don't know what is going on with this kid, but there is this miracle happening and I have a different kid at school," she told the Balters.

Military Family Fights for Autism Coverage

COLORADO SPRINGS, Colo. -- A retired airman who dedicated 21 years to the United States Air Force is denied medical coverage for his autisitc five-year-old daughter.
Sara Bryan was diagnosed with autism at age four. The news was devastating to her parents, Jeff Bryan and his wife, Lisa.

Judge Rules Asperger's Prevents Woman From Holding Job and Repaying Student Loans

A bankruptcy judge has ruled in favor of a Maryland resident who claimed she could not repay her student loans because her Asperger’s syndrome prevents her from holding a job.
Carol Todd, who attended the University of Baltimore School of Law in the 1990s before dropping out, successfully made the case that her disability prevented her from repaying the nearly $340,000 she owed in student loans.

Antioxidant Therapy Holds Promise for Autism

A new pilot study suggests a specific antioxidant supplement may be an effective therapy for some features of autism.
Researchers from the Stanford University School of Medicine and Lucile Packard Children’s Hospital studied 31 children with the disorder.
The antioxidant, called N-Acetylcysteine, or NAC, effectively reduced irritability in children with autism and moderated repetitive behaviors. The researchers emphasized that the findings must be confirmed in a larger trial before NAC can be recommended for children with autism.

Editorial: Community Care First

CHICAGO -- Three months ago, Gov. Pat Quinn unveiled a budget that made the tough choice to shut down a handful of government-run facilities around the state. He did it for good reason.
The facilities, including prisons and centers for the developmentally disabled, are unneeded and hugely expensive. The services they provide can be done much more efficiently, and their high cost puts a squeeze on funding available for other social services.
Now we're coming down to the final decisions in Springfield on state spending for the next fiscal year. The closing of the facilities are a bargaining chip.

California Senate OK's Abuse Bills

SACRAMENTO, Calif. -- Two bills intended to improve police investigations into patient abuse and unexplained injuries at California's institutions for the developmentally disabled passed the state Senate Monday.
The legislation, SB 1051 and SB 1522, would require the state to notify outside law enforcement agencies and disability rights groups when it uncovers allegations of violent crimes against patients. Lawmakers and patient advocates have criticized the state's in-house police force, called the Office of Protective Services

Making Friends with Special Needs Children

Recently, a friend’s son informed me that at his school kids refer to the special needs students as “handicappers” and “aliens.” As a parent of a child with special needs, this both infuriated and saddened me. Though my son Andrew doesn’t attend that particular school, I can guarantee you that the sentiments towards the kids in the special education program on his campus are similar.
Parents and self-advocates within the special needs community spend a great deal of time and energy trying to bring about awareness and acceptance among the rest of the world. Though we’ve come a long way, the conversation with my friend’s son the other day shows me just how far we still have to go.
And it begins with your kids.

Arizona Tops in Delivering Medicaid Services

Arizona was ranked No. 1 in the nation for its delivery of Medicaid services to developmentally disabled residents, the fourth time in six years the state has come out on top, according to a new report.

“Individuals who need services in Arizona are receiving them,” said Tarren Bragdon, author of the United Cerebral Palsy report. “There are very few people on the waiting lists and individuals are getting services just in time.”
The report goes up to 2010, the most recent year for which numbers are available. Subsequent budget cuts could affect the state’s standing in future reports.

DSM Panel Takes Heat Over Diagnosis Name

As experts behind a forthcoming update of the Diagnostic and Statistical Manual of Mental Disorders look to revise psychiatry’s definition of “mental retardation” their efforts are becoming unexpectedly contentious.
Under a draft that’s currently open for public comment, experts working with the American Psychiatric Association are proposing that the name of the diagnosis be changed to “intellectual developmental disorder.”
What’s more, they’re looking to give more discretion to clinicians by putting less emphasis on IQ. While people qualifying for the diagnosis would still be required to score at least two standard deviations below average on such assessments, there would no longer be a bright-line IQ requirement of 70 or under.

Supporting Adults with Autism

Over the last decade, there's been a general increase in awareness of the need to provide tailored services, support and education to children with autism and other developmental disabilities. But there's been less talk about the needs of those children when they reach adulthood.
In short, what do families do to help their adult children to maximize their quality of life and independence?

Opinion: Autism Epidemic Paralyzes Doctors

From Anne Dachel is Media Editor for Age of Autism.

Doctors still don’t know how to diagnose autism.
The American Academy of Pediatrics and the Centers for Disease Control and Prevention have a very difficult role to play when it comes to what they do about the autism epidemic.  Both organizations have to appear concerned (since something affecting more than one percent of U.S. children is a little hard to ignore), yet not alarmed over autism.  In addition, they have to be making some efforts to find answers at the same time they’re clearly paralyzed by the ramifications of this growing health care nightmare.

Group Casts Doubt on Sensory Therapies

Sensory therapies using brushes, swings and other play equipment are increasingly used by occupational therapists to treat children with developmental issues such as autism, but a large pediatricians organization says there isn't much evidence that such therapies actually work.
Still, the group isn't completely discounting the potential of sensory therapies -- it's a ripe area for research, it noted.

Young Marines Unit Building Character and a Focus on Service

Retired Marine 1st Sgt. Vivian Price-Butler
leads the nation's only Young Marines unit

With the Memorial Day holiday, couldn't help but notice this story from The Washington Post. 

BALTIMORE — Bob Nobles and Cornell Wright might not have a chance to serve their country when they are adults. No matter: They are serving it now.
“Good morning, Young Marines,” barked 1st Sgt. Vivian Price-Butler, greeting Bob and Cornell and eight other boys Friday morning in her small classroom at Kennedy Krieger High School.
“Good morning, First Sergeant,” they replied in unison, standing straight and still.
The Young Marines is an education and service program reaching 10,000 youths around the nation and overseas. Of its more than 300 units, only one is dedicated to students with special needs.

'Like Running Hurdles and Not Jumping'

ST. LOUIS — Aaron Likens says living with a form of autism "is like running hurdles and not jumping."

The St. Louis-area man has written a book about his life with Asperger's syndrome, "Finding Kansas." He told the St. Louis Post-Dispatch ( ) that he was almost grateful nine years ago when he was diagnosed, finally getting an answer as to why his life had been hampered by blurred confusion.

Emergency Workers Learn to Recognize Autism

WRENTHAM, Mass. — Norwood Police Lt. Martin Baker begins his training session with a startling new government statistic: 1 in 88 children in the United States has autism or a related disorder.
Then Baker, whose son has autism, tells the class of 25 police officers, firefighters and other emergency response workers gathered at the Wrentham police station what they can do when they encounter someone with the disorder.

Advocacy Tips From Pa. Lawmakers

HARRISBURG, Pa. — Nancy Richey stepped to the podium with a microphone at the Capitol rotunda with the hope that the right people would hear her message.
She rallied a crowd of more than 100 sign-toting people with disabilities and their advocates and service providers. They lined the white marble steps, chanting "Keep your promise!" in protest of $168 million in proposed cuts to community mental and behavioral health services and assistance to the homeless.

Teen Discovers Talent for Design

BUFFALO, N.Y. -- Like many other high school seniors, 17-year-old Danielle Jamison has a lot to look forward to: class day, graduation, college.
But Danielle’s journey has been more difficult than most. Diagnosed with a developmental disability when she was a toddler, the Bennett High School student began her education at a special school for children with disabilities at age 4.

Doctors Urge Vaccines; Some Parents Unsure

Pediatrician Bernard Ferrer consults
Katrina LaGrange and her two daughters,
Lauren, 2, and Lily, 4 months,
before an immunization Friday
at Bayou Pediatrics and
Terrebonne General Medical Center
in Houma.

HOUMA, La. -- A significant number of parents are delaying or skipping vaccinations for their children despite doctors' concern that doing so could expose kids and communities to life-threatening illnesses.

While children are required to be vaccinated before attending public schools, in Louisiana parents can easily opt out by signing a philosophical objection, said Dr. Frank Welch, the state's immunization director.

Military Dad Pushes for Autism Coverage

MANCHESTER, Conn. — Five-year-old Rachel Margaret Kenyon's father was serving with the Connecticut National Guard in Afghanistan when she was diagnosed with autism.

Sgt. Maj. William Kenyon of Manchester is an active-duty veteran of Desert Storm — the early-1990s conflict in Iraq — as well as two tours in Afghanistan. His wife, Rachel, is fighting within the military for better autism coverage through the armed forces' health insurance program, TRICARE.

States Struggle to Meet Community Living Goals

A multi-billion dollar federal initiative to move low-income elderly and people with disabilities from long-term care facilities into the community has fallen far short of its goals, as many states have struggled to cobble together housing and other services.
Launched in 2007 during the Bush administration, the states initially projected placing 35,380 Medicaid recipients in the first five years. As of March 31 at least 22,500 had made the transition, about 36 percent below the states’ target.

N.J. Assembly Focuses on Abuse and Neglect

TRENTON, N.J. — The Assembly approved a resolution Thursday urging the Christie Administration to give the Attorney General the responsibility of investigating abuse and neglect of disabled people at state-licensed facilities.
Assemblywoman Valerie Vainieri Huttle (D-Bergen) sponsored the non-binding resolution (ACR147) at the request of families who testified at a hearing Monday that they have lost confidence in the Department of Human Services’ ability and impartiality to investigate the people who run group homes and facilities the department also pays and licenses.

Refusing to Let Autism Define Him

Tristan Braverman, center,
with his parents.

MERRICK, N.Y. -- Tristan Braverman, a junior and a varsity basketball player at Lawrence Woodmere Academy, used to blend in with the rest of the student body, but after being featured in the May/June issue of ESPNHS magazine, his teammates and fellow classmates learned something about him they didn’t know.

Toxic Chemicals and Rising Rate of Autism

Melissa Wolfe and her son Edgar.

While pregnant with her son Edgar, Melissa Wolfe followed the lead of many a cautious woman before her. She took prenatal vitamins and ate organic vegetables. She avoided dyeing her hair and using hairspray. She even went as far as to leave the kitchen whenever someone turned on the microwave.
"I was very vigilant. Perhaps a little crazy," said Wolfe, of Brentwood, N.H.
Yet Wolfe still fears that her 4-year-old's autism may have resulted from chemicals infiltrating her womb, whether components of her migraine medicine, contaminants brought home from her husband's work installing rubber flooring, or remnants of the remodeling the couple did on their house.

Power Cut Off at Home of Child with Special Needs

Nine-month-old Bella was born with a ton of complications.
“Her esophagus wasn’t connected to her stomach and her stomach wasn’t connected to her intestines,” said her mother, Catherine Pennington. “She had seven holes in her heart.”
Five surgeries got her to this point, but the infant requires breathing and feeding machines and the care of a loving mother to keep her alive, but the power to the home and those machines was cutoff Thursday after Catherine Pennington failed to pay the $115.00 energy bill.

Challenger Baseball Is a Rewarding Endeavor

The 16 teams that gathered on baseball diamonds in Thurmont, Md., last weekend for a baseball jamboree didn't focus on wins and losses, batting averages and ERAs. They were more attuned to the game's basic tenets - hitting a pitched ball, fielding and throwing, running the bases. When a physical or developmental disability makes it more difficult to play the game you love, you tend to focus on the little things - and like the saying goes, the little things often mean the most.

Mood Drugs Often Prescribed for Autistic Children

More than half of school-age children with autism in the U.S. take mood-altering drugs as doctors increasingly target the broad range of psychiatric symptoms tied to the ailment, a report found.

The survey, the first of its kind by the National Institute of Mental Health, found that 56 percent of those age 6 to 17 with autism, were on one or more drugs normally given for disorders such as anxiety, depression, psychosis or hyperactivity.

Fevers During Pregnancy Linked to Autism

LOS ANGELES -- Women who reported having had a fever during pregnancy were more likely to give birth to a baby who would later be diagnosed with autism spectrum disorder or a development delay, says a major new study. But the babies of women who treated their fevers with medication fared no worse than babies whose mothers recalled having suffered no fevers at all.
The findings, wrote the authors,  "suggest that anti-fever medication used to control fever during pregnancy can reduce or eliminate" the apparent link between maternal fever and autism.

Study: Many Children with Autism Diagnosed Late

Many children may be diagnosed with autism years too late to benefit from early behavioral intervention, according to 2011 national survey findings released Thursday from the National Institute of Mental Health.
Intensive behavioral therapy for autism, which can begin as early as age two, can significantly improve language and thinking skills in children with autism, according to the National Institutes of Health. The therapy, which helps develop a child's social and behavior skills within different environments, is considered among the best forms of treatment by the American Academy of Pediatrics.

Hospitals and Insurers Focus on Cost Cutting

Giselle Fernandez and her mother.

Giselle Fernandez is only 17 but she has had more than 50 operations since she was born with a rare genetic condition. She regularly sees a host of pediatric specialists, including an ophthalmologist, an endocrinologist and a neurologist at UCLA Health System. Her care has cost hundreds of thousands of dollars so far, and she will need special treatment for the rest of her life.

While UCLA Health System has long prided itself on being at the forefront of treating patients like Giselle, it is now trying to lower sharply the cost of providing that care. By enrolling young patients with complex and expensive diseases in a program called a medical home, the system tries to ensure that doctors spend more time with patients and work more closely with parents to coordinate care. The program has cut emergency room visits by slightly more than half.

Autistic Boy Saved Family During Joplin Tornado

Maddox Prier and his mother.

"I hear the horns."
Those were the four words with which Maddox Prier, a nine year old with autism, woke his family before the EF-5 tornado struck Joplin, Mo., one year ago. The family climbed into the bathtub for safety and the storm hit seconds later, kspr.com reports.

Colorado Is Latest to Reconsider Zero-Tolerance

AURORA, Colo. -- On May 2, D'Avonte Meadows, a 6-year-old with an infectious grin and rambunctious streak, was suspended for three days from Sable Elementary in suburban Denver for crooning "[I'm] Sexy and I Know It" to a girl in lunch line.
The school declared it sexual harassment and told his parents that, because D'Avonte sang the same song to the same girl before, he is a repeat offender. The news media pounced. And Stephanie Meadows, D'Avonte's 29-year-old mother, gave her bewildered son, a special needs student, a crash course in birds, bees and sexual boundaries.

Opinion: IMFAR Hasn't Come Far Enough

From Katie Wright at Age of Autism.

I know how hard it is to meet the needs of our kids. It is such tough going for so many of our families. Less than half of ASD kids make a recovery from early intervention and behavioral therapies alone. ASD kids suffer from an incredibly high rate of gastrointestinal distress, severe food allergies, and mitochondrial and immune dysfunction. PANDAS and Lyme disease are causing permanent neurological damage as they go undiagnosed in tens of thousands of ASD kids. Most of these problems go untreated because they are virtually unstudied. ASD families overwhelmingly want to see more investment in environmental, rather than genetic research as well as an open and honest discussion of our vaccine schedule and adverse reactions.
So are you ready to have your mind blown? IMFAR barely covered ANY of these issues. You want to know what kind of oral presentations IMFAR did offer?

Many Babies with Delays Go Untreated

About one out of every three infants who scores well below average on a test of developmental skills -- and is therefore considered at a high risk of having delays -- does not get referred to early intervention services, according to a new study.
"It's a problem, because I think that early intervention services can really make a difference in kids who are at risk for developmental delay," said Dr. Joanne Cox, a pediatrics professor at Children's Hospital Boston, who was not involved in the research.

Autism Scientists Seek Answers, for Their Own Children's Sake

Kevin Pelphrey and his children.

 

Neuroscientist Kevin Pelphrey has earned a Ph.D., a long list of awards and million-dollar grants from the National Institutes of Health.

None of that impresses his 6-year-old son, Kenneth.

" 'Dad,' he says, 'why haven't you cured autism yet?' "

Autism and Parenting: 8 Ways 'It Gets Better'

I spoke at a conference recently where a number of parents with young children with developmental disabilities attended.
“What is one thing you would tell parents of a newly diagnosed child?” was the final question during the Q&A period, and it’s one that I am asked frequently.
“It gets better,” I said, “It really does.”
A young (exhausted looking) woman in her thirties came up to me after and asked me what “It gets better” means.

Engineering Students Create Sensory Room

AMESBURY, Mass. -- The noise inside Coastal Connections' Lower Millyard facility can be loud at times with all the activities happening at once.

The open space at the nonprofit school in Amesbury bustles with energy as students with an array of disabilities work together with staff on different exercises and games.
Sometimes, the students just need a quiet space.
Enter the sensory room.

Students Get Help Preparing for Working World

Homestead High School student
Connor Kelley shelves books
while working in a library.

MEQUON, Wis. -- In a classroom at Milwaukee Area Technical College last week, student Sonia Fischer offered her teacher some examples of good and bad job interview behavior.
Good: keeping your hands on your lap or on the table. Bad: talking on your cellphone.
Fischer, who is 20, and the four other students in the class that day attend Homestead High School, where they receive services until 21 years of age because of their disabilities.

Texas School District Pulls Yearbooks for Use of 'R-Word'

A Texas school district has been forced to pull yearbooks at Dallas-area Mesquite High School after it described students with special needs as “mentally retarded.”
The contested language was denounced by parents, forcing the Mesquite Independent School District to apologize for a section dedicated to students with disabilities.

Opinion: Children with Special Needs Deserve Better than a Rush to Reform

An unbelievable story is brewing overseas. Here is an article by John Harris, who is a parent of a son with autism, of The Guardian.

LONDON -- The government bounces from crisis to imbroglio and back again – but at Michael Gove's Department for Education, the revolution rolls on. A green paper on special educational needs was published last year – and after the inclusion of the plans in the Queen's speech, last week saw an explosion of news coverage. As many as 450,000 children, said ministers, could soon be taken out of the category of special needs altogether. The resulting stories paid no mind to the idea that we are talking about a sliding scale, and the infinite complexities of child development – as far too many people saw it, you either have special needs or you don't, and too many people are playing the system.

Graduation, One of Many Milestones for Mark

Mark Jameson will be graduating
on May 30.

CHAPIN, S.C. -- When Mark Jameson walks across the stage May 30 to receive his diploma from Chapin High School, it will be the grand finale of an educational journey that took him from a near-silent toddler and frustrated first grader to a loquacious and personable young man.
The milestone will be cheered by his family, parents Donnie and Theresa Jameson, and brothers, Matthew and Michael, and the dozens of teenage friends Mark has come to know as he learned to master a “regular” school and take control of his autism.

Read more here: http://www.thestate.com/2012/05/21/2284071/a-milestone-for-mark-after-a-diagnosis.html#storylink=cpy

Student Honored for Campaign Against 'R-Word'

BEDFORD, Texas -- Two years ago, Katie Pullano stood up to a teacher who used an offensive word during class.
"A teacher in the seventh grade said that something a student had done was retarded," said Pullano, a ninth-grader at Harwood Junior High School. "I told her the connotation of the word doesn't come off right. She shouldn't be teaching it to teens."
An argument ensued but, Pullano said, the teacher eventually accepted her position and respected her objection.

Read more here: http://www.star-telegram.com/2012/05/20/3973833/bedford-ninth-grader-honored-for.html#storylink=cpy

No Happy Ending: 1 Family's Struggle with Autism

READING, Pa. (AP) -- Would you wait for a drowning man to ask for help before you tried to save him?

The Miller family, from left, mother
Beth; daughter, Sarah, 12; son Caleb,
19; and father, Anthony, pack up
  to visit their son Luke.

That's what Tony and Beth Miller want to know after feeling for years like they were sinking, weighed down by the responsibility of raising a child with severe autism.

Oxytocin Improves Brain Function in Autistic Kids

Preliminary results from an ongoing, large-scale study by Yale School of Medicine researchers shows that oxytocin -- a naturally occurring substance produced in the brain and throughout the body -- increased brain function in regions that are known to process social information in children and adolescents with autism spectrum disorders (ASD).

Dreaming of a Summer Vacation . . . Maybe

Came across an amazing website Autism After 16. Articles are writing by individuals with autism, family members and others in the field. Zosia Zaks, M.Ed., CRC, is an adult on the autism spectrum and the parent of two daughters on the spectrum. In addition to contributing to Autism After 16, Zaks is a Certified Rehabilitation Counselor. 

 The weather is warm and breezy. Kids are out of school. The pace of life seems to slow down, even just a little: It is summer.
Most people in American society can’t wait for a summer vacation. People dream all year of taking off to the beach, or hightailing it on some adventure. What if you are on the autism spectrum? Is summer vacation just as enticing?
Maybe. A stereotype about autistic adults is that we do not like traveling. In order to travel, don’t you have to leave the familiarity of home? Won’t it be too hard to cope with new environments, new routines, and new people? The reality is that some of us on the spectrum like to travel and some of us don’t. Whether you can’t wait for vacation—or you’re being dragged along on one—planning can help.

Study: Educators Can Effectively Screen for Autism

MOUNTAINSIDE, N.J. -- In a study with national implications, researchers at Children’s Specialized Hospital found that in underserved communities using teachers to screen for autism in preschools and day care centers is more effective than the current system that relies solely on parents and pediatricians to identify the disorder.
The research, which could fundamentally change the way disadvantaged children are screened for autism, will be presented this week at the International Meeting for Autism Research, or IMFAR, in Toronto.

Special Ed Using Arts in Everyday Academics

NEW YORK, N.Y. -- A professional development program for New York City special education teachers is reminding them of one basic principle: students like to have fun. And when students are having fun, chances are they will be more engaged with the lesson at hand.
With that in mind, the city’s Education Department and the Manhattan New Music Project, a nonprofit arts organization, are using a $4.6 million federal grant to implement EASE, Everyday Arts for Special Education.

A Bar Mitzvah, with Autism

Wonderful piece by Joel Yanofsky is a writer in Montreal, Canada, on The New York Times Motherlode blog, advertures in parenthood.

MONTREAL -- It should be interesting.
At least, that’s what I’ve been telling guests in advance of my son Jonah’s impending bar mitzvah. Sometimes, I wish we’d added this phrase — part disclaimer, part promo — to the invitations that went out a couple of months ago.
Anyone who’s organized a bar or bat mitzvah, a communion, a sweet 16, even a relatively big birthday party knows how much there is to prepare. But when your child has autism, as Jonah does, the preparations never seem to end; nor does the worrying about everything that might go wrong. So, yes, it’s even money that on the day of his bar mitzvah Jonah will do something interesting. I’m betting that just as the rabbi is briefing him on the significance of this time-honored ritual, Jonah will give a shout-out to his favorite animals, yaks and zebras.

Latino Families with Autistic Children Facing Major Hurdles

Few people take advantage of
Fiesta Educative meeting
in Spanish held in February.

LINCOLN HEIGHTS, Calif. -- Josefina Nieves is nervous. Her son Nestor is graduating from high school this semester and will soon be leaving for college. Nestor was diagnosed with autism at age two and half.
For Spanish-speakers, accessing information and resources is difficult and making time for therapies can be a challenge, yet Nieves, a single mother, is managing to raise not only one son diagnosed with autism, but two. Her teenage son Daniel also has the disability.

In France, Autism Treatment Debate Brews

LONDON - In most developed countries, children with autism are usually sent to school where they get special education classes. But in France, they are more often sent to a psychiatrist where they get talk therapy meant for people with psychological or emotional problems.
Things are slowly changing, but not without resistance. Last month, a report by France's top health authority concluded there was no agreement among scientists about whether psychotherapy works for autism, and it was not included in the list of recommended treatments

Searching for the Onset of Autism

Early behavioral intervention has shown some promise as a way to help children with autism. But it’s difficult to see the hallmarks of autism before two years of age with today’s diagnostic criteria. Could we find other methods?
Seeking to answer that question is Jed Elison at the California Institute of Technology, who is working with Ralph Adolphs at Caltech and Joe Piven at the University of North Carolina among other colleagues around the U.S. and Canada. Elison provided some preliminary findings at the Neuromagic 2012 conference held from May 7 to 10, 2012 on San Simón, the Island of Thought, near Vigo, Spain.

Baby's Poor Head and Neck Control Could Provide Autism Clue

Early research suggests that if a 6-month old baby has "head lag," or weak head and neck control, it may be an early sign of autism or another language/social developmental delay.

The test is simple – babies who are lying on the floor are pulled up into a sitting position. If the baby's head is not moving forward as you pull the baby up, it's a sign of weak head and neck control.
Researchers already know that head lag could be an early sign that a child's nervous system is not developing correctly. They've seen this in children with cerebral palsy and preterm infants, for example. But so far it had not been documented in children with autism.

Chicago Agencies Focus on Employment

CHICAGO -- Individuals across the nation and especially Illinois have suffered from continuing economic uncertainty and mass unemployment. The unemployment rate for persons with disabilities of all types exceeds 70%, and for individuals with intellectual disabilities the rate is even higher. To address this paramount issue, seven agencies that are part of Intersect for Ability Network have joined hands in establishing a major new project to secure employment for the people with disabilities they serve: the Jobs75 Initiative.

Group Home Memos Allege Neglect and Insubordination

HARTFORD, Conn. -- A series of internal memos allege additional problems at the Humanidad group homes for developmentally disabled people in Greater Hartford, ranging from staff insubordination to neglectful care.
In one instance, in October 2010, a supervisor arrived in the morning at a group home on Grandview Terrace in Hartford and found a third-shift worker entangled on a pull-out bed in the living room with her half-naked boyfriend, according to documents obtained by The Courant.
Finding the house dark, and knowing that the third-shift worker was required to stay awake, the supervisor called Hartford police. The officer, in his report, notes the supervisor's concern that clients "had not been put into fresh clothing after fouling themselves.''

An Ability to Inspire and So Much More

Alex Beckett

GUILFORD, Conn.  — Sometimes, sports are about more than just wins and losses, home runs and touchdowns, bounty programs and beanballs.
Sometimes, sports can reaffirm all that’s good about people, while also putting life in better perspective. Like when a group of high school athletes takes in and accepts a kid with learning disabilities as one of its own, makes him feel a part of something positive and forges a special bond that words, quite literally, can’t describe.

Families Fight for Northern Va. Training Center

HERNDON, Va. -- Susan Infeld, a registered nurse, remembers vividly the night she knew she had to get involved with the Northern Virginia Training Center. She was working as a hospice nurse at a local hospital when a patient from NVTC came in suffering from pneumonia in the middle of the night.

"We eventually had to put him on a ventilator, but he had a ‘Do Not Resuscitate,’" she said. "This man’s parents were elderly and not in the state, and we couldn’t get a hold of them. So we called the center to tell them the situation, and they said ‘wait.’ Soon a physician, social worker, nursing assistant and the director of nursing showed up at the hospital to be with him as he died," she said. "We all stood around this man, holding hands and praying as he died surrounded by the people who had cared for him over the past dozen years. In all my years in the medical profession, I’ve never seen that kind of compassion and concern so far above and beyond what anyone could expect."

Located in Fairfax on Braddock Road, the Northern Virginia Training Center houses residents with intellectual and other disabilities, but is currently in danger of being shut down.

Teens Produce Autism Film "Are You Aware?"

CUMMING, Ga. -- The number of kids with autism in Georgia's schools is rising so quickly, educators are trying to find ways to deal with it.
It's not just the students with autism they worry about, but the perceptions of the other students who go to school with them.
A new film is trying to change how teenagers, in particular, look at kids with autism. It debuted last October at the ReelAbilities ALT Disabilities Film Festival.

Program Aids Autistic Teens In Connecting

Part of Erron Gerstein's socialization
lesson includes learning polite
conversation.

VERNON HILLS, Ill. -- Making connections can be a challenge for many teens, but it has been especially tough for Erron Gerstein, an 18-year-old student with autism at Vernon Hills High School.
Although he wanted to socialize with other students, simply approaching them was often daunting.
But Erron has become more bold since he enrolled in "Tutorial: A Program for Independence," a new class offering this school year.

Making Gene Mapping Part of Everyday Care

The cost of mapping a person's full genetic profile has been dropping quickly. Now, doctors are struggling with a new question: how to use the information to improve people's health.
Genetic profiling, known as genome sequencing, already is helping researchers diagnose rare or mysterious illnesses. Other specialists use the process to tailor drug therapies for advanced cancer patients. The latest research focuses on how to use genome sequencing in basically healthy people, especially those who may have a family history of disease but no symptoms.
The price to get a full genetic map currently starts at about $3,000, and many experts predict this could quickly fall to $1,000, roughly equivalent to the cost of an MRI. Insurance is expected eventually to help cover the cost of doctor-ordered tests.

Taking the Fear Out of Health Care

Letitia Rooney, who has autism, has a filling
put in by dentist Dr. Michael Matthias.

BEAR, Del. -- Going to the dentist isn’t likely to top the list of fun ways to spend your time. But for people with cognitive, developmental and physical disabilities, the experience can be downright frightening, from the dental tools to the unfamiliar faces to the fingers poking around their mouth.
But with a little practice, a seat in the dentist’s chair doesn’t have to be a scary event. That’s the goal at Practice Without Pressure, a nonprofit organization in Bear that helps patients with disabilities and their families prepare for medical procedures.

Injury Prevention for Children with Special Needs

Interesting article by Susan Rzucidlo, R.N., whois coordinator of the Dauphin County Safe Kids Coalition and the pediatric trauma program nurse manager at Penn State Hershey Children’s Hospital.

Injuries are both predictable and preventable and the leading cause of death and disability for all children 1 to 14 years of age. All children and their families need information on keeping their children safe as they grow and wherever they are – for example at a babysitter’s home, school, a playground or staying with grandparents.
Injury prevention for children with special health care needs requires a thorough assessment of each child’s unique risks. There are medical and emotional conditions that can lead to challenges for keeping the child safe. The issues and strategies will change as the child grows.

1 in 3 Young Autistic Adults lack Jobs, Education

CHICAGO -- One in 3 young adults with autism have no paid job experience, college or technical school nearly seven years after high school graduation, a study finds. That's a poorer showing than those with other disabilities including those who are mentally disabled, the researchers said.
With roughly half a million autistic kids reaching adulthood in the next decade, experts say it's an issue policymakers urgently need to address.
The study was done well before unemployment peaked from the recession. The situation today is tough even for young adults who don't have such limitations.

Mom: Son's Progress Worth the Sacrifices

IOWA CITY, Iowa -- It has been a busy few weeks for Daniela Moga and her son, 10-year-old son Ionut.

Daniela Moga embraces her son
during graduation.

 

 

 

 

 

Ionut, a fourth-grader at Weber Elementary School in Iowa City, recently graduated out of his occupational and speech therapy services at Children’s Center for Therapy, complete with a diploma.
On Saturday, Moga, 38, donned her own cap and gown to receive her Ph.D. in epidemiology from the University of Iowa College of Public Health.
Her parents came from Romania for the celebration and to spend Mother’s Day with their daughter and grandson.
The Mogas moved to Iowa City five years ago so Moga could study at UI and Ionut could receive services such as occupational therapy and social skills for his autism.

The Amish All Over Again

From Dan Olmsted with the Age of Autism.

Back in the early days of USA Today 30 years ago, the paper’s founder, Al Neuharth, roamed the newsroom, micromanaging and demanding impossibly high standards. That was not necessarily a bad thing – the paper was his baby and he knew what he wanted – but it produced some classic moments. In one case, he rejected headline after headline on a particular story – as it was told to me, 24 times -- until the frustrated editor once again handed him the first headline that he had by now forgotten.
“Finally!” Neuharth exclaimed.
I’m about at that point when it comes to the Amish and their amazingly good health. There’s been story after story reporting the relative absence of Alzheimer’s, allergies, asthma – you know, the big chronic disorders that plague the people who live around them, namely the rest of us. Not to mention -- not ever -- the lack of autism.
Autism aside, the medical and media establishments still manage to evade the logical implications – something is protecting the overall health of this insular community whose rejection of many contemporary norms is legendary. You would think they would want to find out what that something is and try to clone it, stat, especially as the same disorders and diseases hit epidemic rates outside the Amish world and these same “experts” express complete bafflement about what’s going on.

When Your Child Is Not Welcome

It still makes my blood boil. It’s been two years since we were asked to leave a tumbling class at a local “family fitness center.” I will change the names to protect the not-so-sensitive.
Heart break is not new to me or other parents of special needs. I embrace the fact that I am part of a club I never intended to join. I have accepted a different path that has opened my mind and taught me to embrace beauty in expected places.
It is hurtful when you run into a person who runs a children’s program that is not welcoming to your own.
The most heartbreaking part is explaining to your child why you can’t return to a program they enjoyed.

Happy Day for People who Are Mothers, and How it Got to Be This Way

Can't say I necessarily agree with the writer, but have to say, I had the opportunity to meet Ari Ne’eman, co-founder of the Autistic Self-Advocacy Network, and the first openly autistic White House appointee, nominated by President Obama in 2009 to sit on the National Council on Disability. He explained to me that he does not follow the person-first language and the preference is autistic people. It's the autism that makes them who they are. Nonetheless, this is a good read, but take it with a grain of salt and sarcasm.

Happy Day for People Who are Mothers.
I almost wrote "Happy Mother's Day," but that would have been offensive, because I neglected to note that mothers are, first and foremost, people, just like you and me.
I have come to this realization thanks to a helpful reader who works at a public agency in another county.
The morning after I wrote a 2,500-word story about a dispute among board members at the Autism Family Foundation in Copley - an organization consisting of a family center and a school called "Kids First" - I listened to a voice mail from a woman who identified herself as Dr. Jan Manes.

Read more here: http://www.sacbee.com/2012/05/12/4485752/bob-dyer-happy-day-for-people.html#storylink=cpy

Blogger Writes From the Heart

The author writes Welcome to Aspie Land at blog.robertmoran.org 

 We are not all the same.
The belief that all autistics are the same is still one of the biggest misconceptions that autistics have to deal with.

Robert Moran

Now that the Centers for Disease Control has determined that the diagnosis rate of some level of autism is 1 in 88 people, the numbers may seem startling, but it just means that there are more accurate methods of diagnosing autism. Better and more accurate methods, in this case, are important because no two autistics exhibit the disorder in the same way. The new diagnosis rate has indirectly shown the world that autistics are all different.

Stop Electric Shocks, Ex-Teacher's Aide Says

CANTON, Mass. -- A former teacher’s aide who says he used electric shocks on teens with special needs to control behavior is demanding that state officials ban the practice at a Massachusetts school.

As of Friday afternoon, more than 228,000 people had joined an online campaign condemning the Judge Rotenberg Education Center in Canton, Mass., for administering electric shock treatments to its students with developmental disabilities.

Autism-friendly 'Guys and Dolls'

Live theater is something many people find enjoyable and stimulating, but for those with sensory defects it can be uncomfortable and even painful.

Now South Bay Musical Theatre is offering an autism-friendly performance during its upcoming run of Guys and Dolls. The performance takes place on May 31 at 7:30 p.m. and marks the first effort of a Bay Area theater company to offer an autism-friendly show.
In October 2011, Disney Theatrical Productions worked with the nonprofit Theatre Development Fund to stage an autism-friendly performance of The Lion King on Broadway in New York. It was so successful it is doing a second staging of the show in September; at the end of April it did a performance of Mary Poppins.

Evolution's Gift May Also be at the Root of a Form of Autism

A recently evolved pattern of gene activity in the language and decision-making centers of the human brain is missing in a disorder associated with autism and learning disabilities, a new study by Yale University researchers shows.
"This is the cost of being human," said Nenad Sestan, associate professor of neurobiology, researcher at Yale's Kavli Institute for Neuroscience, and senior author of the paper. "The same evolutionary mechanisms that may have gifted our species with amazing cognitive abilities have also made us more susceptible to psychiatric disorders such as autism."

XBox 360 Kinect Cameras Watch for Autism

THE noise level is rising at the Shirley G. Moore Laboratory School. Children are charging through the classroom shouting, playing, picking up toys and tossing them around. All the while, in the corners of the room, five Kinect motion sensors watch and record their every move.

The unusual set-up at the University of Minnesota's Institute of Child Development in Minneapolis is designed to look for signs of behavioural disorders. The plan is to find out if Microsoft's gaming sensor, combined with computer-vision algorithms trained to detect behavioural abnormalities, can be used to automate the early diagnosis of autism.

Adults With Disabilities Learn To Perform At College Of Their Own

Most educational services for disabled youths cease at age 22. The College of the Adaptive Arts hatched an idea so simple, it’s a wonder it has been elusive for so long. Using the arts, the college creates opportunities for continuous learning, achievement and progress for adults with developmental disabilities.
“We want to create lifelong collegiate experience through expression, exploration and friendship — delivering excellent services to adults of all disabilities,” said co-founder DeAnna Pursai.

Don't Be Easy On Me Just Because I'm Different

DAYTONA BEACH, Fla. – In the ultimate showcase of high school drill talent, Ariel Summerlin has been something of a celebrity at the May 4-6 national Junior ROTC meet.
Spectators huddled to watch her perform. Cadets she didn’t even know, so moved by her skill, mugged for photos with the 14-year-old from Airport High School.
“She’s inspirational,” said Joshua Sneed, of Murphy (Ala.) High School. “I had to get a photo with her.”

A Need for Care: Family Fears Medicaid Changes

SOMERSWORTH, N.H. -- To Somersworth parent Karen Salter, it's impossible to measure the benefit her son, Jeremiah, receives from the state's Medicaid system by the numbers alone.
Diagnosed with Angelman syndrome, a developmental disability, Jeremiah Salter is non-verbal and requires assistance with activities of daily living, such as dressing, eating and showering.
He currently qualifies for 30 hours per week of one-on-one assistance from a personal aide, which is reimbursed by the state Medicaid system and administered by a regional nonprofit called Community Partners.

In N.Y. and California, Different Approaches to Abuse

Wherever the developmentally disabled live, abuse is their neighbor.
It comes as deliberate assault by caregivers and sometimes relatives. It comes as acts of frustration, when people exhausted from the relentless difficulties of caring for patients with intellectual disabilities shove and hit the vulnerable.
Government agencies are often judged as much on their response to abuse as on their success at preventing attacks. By this measure, California and New York have repeatedly failed, as news reports over the past year have detailed numerous cases in which state officials overlooked evidence of attacks and suspicious deaths.
Both New York and California are working to overhaul their abuse response systems. However, the states are taking different approaches.

Creating Autism-Friendly Work Environments

Square One, a Los Angeles-based software and design firm, has started a small pilot program (with hree people) to design a software-testing training program for people on the autism spectrum. According to Business Week, company co-founder Chad Hahn and his wife, Shannon, who works with individuals with developmental disabilities, are trying to create a “work environment that would be friendly to those on the autism spectrum,” many of whom especially struggle with social interactions.
In the U.S., the unemployment rate for individuals Asperger’s Syndrome could be as high as 80%. While social situations and communicating with others may be difficult, some autistic individuals excel using computers and technology and, prior to Square One, some other companies have sought to draw on these abilities
.

Special Baby Sitters for Kids with Special Needs

DENVER -- Diagnosed with hydrocephalus at birth, Brian had fluid around his brain. When he was 3 weeks old, a shunt was inserted to direct the fluid to his abdomen. Later, he was diagnosed with spastic quadriplegic cerebral palsy with dystonia, a brain injury that happened before he was born. Brian isn't paralyzed, but his movements are uncoordinated, with involuntary twisting.
Today, at 5, he uses a wheelchair, has frequent seizures, uses a stomach tube to ingest some food and medications, and uses a communication device operated by a head switch.
"We had a sitter for 10 months who I had to train for a few weeks," says Quayle, 37. "Things like how to transfer Brian into a wheelchair, or how to communicate with him. There are so many things you have to train somebody to do."

Editorial: Support for Cuomo Oversight Plan

The stories of abuse, suffering and unexplained deaths among those sent to homes for the disabled in New York State are horrifying. A worker sits on an autistic boy and crushes him to death. Another worker sexually abuses a 54-year-old disabled woman. A quadriplegic drowns as an aide leaves him in a tub of water.
Gov. Andrew Cuomo has finally come up with a comprehensive plan to monitor thousands of New York’s private and public facilities. The legislative package he released this week would create a new agency to oversee homes for about a million people who are disabled or mentally ill. It is a sensible, straightforward proposal that legislators and unions should support.

Cuomo Proposes New Agency to Protect Disabled

ALBANY — Gov. Andrew M. Cuomo, seeking to strengthen the state’s chronically weak response to abuse of disabled people who live in publicly financed homes, plans this week to propose creating an agency dedicated to investigating problems with the care of nearly one million vulnerable New Yorkers.

The new law enforcement and oversight agency would monitor those in state or private care who have developmental disabilities like autism or cerebral palsy, mental illnesses including schizophrenia, and other conditions, among them traumatic brain injuries, that put them at risk. The agency would employ a special prosecutor and would be granted subpoena power and the authority to convene grand juries, according to a draft plan obtained by The New York Times.

Study Damps Fears on Autism Diagnosis

PHILADELPHIA -- Proposed new diagnostic criteria for autism don't appear to reduce the number of children diagnosed with that condition, according to preliminary data presented at the American Psychiatric Association annual meeting on Sunday.
Those findings could damp the controversy that has surrounded suggested changes to the main psychiatric diagnostic manual in the U.S., the Diagnostic and Statistical Manual of Mental Disorders, or DSM, about how autism and related disorders that are characterized by social impairments and repetitive behavior are categorized.

Mother Fights School for Son's Basic Rights

HOUSTON—It’s a story that made parents everywhere pretty angry; a New Jersey father who sent his autistic son to school with a hidden microphone. Several women who worked at the school were heard on tape yelling at the boy and calling him names.
Parents with autistic kids deal with these kind of legal issues often.
“When I got to middle school, I not only had a teacher who didn’t know anything about autism, but I had aides in that classroom that all did something different. When you have a child with autism, that is the hugest “No-No.”  It has to be structured, it has to be the same, it has to have a purpose,” says Michelle Guppy.

A New Rotation for Some Nursing Students

CRYSTAL LAKE, Ill. -- Every fall nursing students from McHenry County College’s Nursing Program participate in a rotation at Pioneer Center for Human Services.
Pioneer Center nurses mentor the students for the one-day rotation working with individuals with developmental disabilities. Throughout the day, staff nurses educate and guide students through a client’s health assessments to determine which treatments and services could be added to allow them to reach their full wellness potential.
“We foster the student’s communication and interaction with our individuals who may have deficits in verbal skills or social anxiety,” said Sarah Walker, Nurse Manager for Pioneer Center.

Opinion: Too Much Risk in Medicaid Contracts

From Betsy McNamara, a Concord resident, from the Concord Monitor.

CONCORD, N.H. -- In a February column I urged the governor and Executive Council to delay voting on the managed-care contracts for New Hampshire's Medicaid system. It was too fast, I argued. The contracts hadn't been made public yet, and we need time to see what's in them in order to make an educated decision.

These are, after all, the largest contracts in New Hampshire history. For $2.2 billion the state will outsource all of its management of Medicaid - the health insurance program for people who are low-income and for people who have a disability - to three different managed-care companies.
The Executive Council did delay its vote on the contracts, twice. We've now had a month to review the hundreds of pages that will dictate the kind of care my child with a disability can expect to receive as an adult.
The news is not good.

Sparks Fly Over Keegan Autism Center

AKRON, Ohio -- For the past year, friends and acquaintances of Barb Hudak have expressed shock when they discover she is no longer associated with the Robert J. Keegan Family Center for Autism.

The Copley organization was her passion, a way not only to connect with an autistic niece and nephew, but to make a lasting imprint on the city in which she has become a prominent Realtor and volunteer. It seems inconceivable to those who know her that she would have cut all ties.
After remaining mostly mum since her abrupt departure, she has decided to go public.

Student Overcomes Obstacles and Graduates

Craig Johnson at graduation.

SALEM, Ore. -- When Craig Johnson turned in his final paper this past week to Corban University psychology professor Laurie Smith, he made eye contact and gave her a high five.
“This,” Smith said, “from a young man who couldn’t look me in the eye four years ago.”
It was a moment of celebration for both. Johnson had just fulfilled his last requirement for graduation. Smith had just witnessed the culmination of a remarkable journey.

Settlement Provides Glimmer of Hope for Twins

CHATHAM, Va. -- The clock is ticking for Timothy and Joseph Dunkley, who are mentally disabled.

Joseph, left, and Timothy Dunkley.

The 23-year-old twins who live with their grandparents have been on a waiting list for 12 years, hoping to receive Medicaid waivers for funding so they can access what could become a community-based services system for Virginia’s mentally and developmentally disabled.

For now, they cannot afford to seek programs where they could learn life skills like job training or money management. They are aged out of school and soon to be too old for the Boy Scouts, in which they participate once a week. They spend much of their time watching TV and have little social interaction outside each other and their grandparents.

Autism and Ethic of Inclusion

Ari Ne'eman

BLOOMFIELD, N.J. -- When autism advocate Ari Ne'eman, Barack Obama's appointee to the National Council on DisAbility, recently spoke locally, the discussion was not about autism, per se, but about civil rights.
Specifically, Ne'eman discussed how the role of the disabled person relates to history and human rights, and what it means to be “different” in an America built on the tenents of equality and "justice for all.”
“Nobody should have to pretend to be something that they’re not, as a means of being included in their own society,” he said in an one-hour speech at Bloomfield High School on April 26.  “We are taught at a very young age that to be ‘different’ is to be ‘wrong.’  [For those who are different] that’s a horrendous way of living.”
Ne’eman, who is himself autistic, addressed a range of issues facing disabled Americans, specifically those with autism. The definition of ‘normalcy,’ he said, largely determines a school district’s attitude toward classroom inclusion, as well as host of other issues from social acceptance to employability.