Friday, June 29, 2012

Help for Colorado Wildfire Victims with Disabilities

Colorado Cross Disability Coalition (CCDC) is coordinating an anonymous donor's outreach to assist Colorado fire victims with disabilities. "We are not, yet, aware of the full extent of need because several of the fires are not contained," says CCDC executive director Julie Reiskin. “We are just beginning to get a better understanding of what has been lost.”
Tens of thousands of Colorado residents have been forced from their homes by raging wildfires finding many taking refuge with friends and family or in hotels and community shelters. However, for people with disabilities finding accessible emergency housing or replacing life saving medical equipment can be extremely hard due to both limited options and funds.

Show Siblings the Love

How parents of children with ADHD can save neurotypical siblings from getting lost in the special needs shuffle.
When their parents go to teachers' meetings or to Wal-Mart to do a quick shop, Jesse, 9, looks after his bigger brother, Jim, 10, who was diagnosed with ADHD. "I have things to do myself -- homework, chatting with friends, listening to music -- but I love Jim," says Jesse, "so I put those things on the back burner for later."
Karen's sister, Amy, has been diagnosed with inattentive ADHD and anxiety. Karen is thinking about her little sister, but she secretly wishes family life could be "normal." Instead of having pizza delivered because Amy gets nervous around crowds and noise, "I think it'd be fun to go out for dinner and see a movie as a family."
Madelyn finds it challenging to be around her six-year-old brother, who has autism. "He can't talk to you, play with you, or help you," she says. "It's hard to help him when I want to try." She gets angry with her brother sometimes, but she prefers to bottle it up because she doesn't want to put more pressure on her parents. 

Theatre Development Fund's Autism-Friendly Performance of The Lion King Sells Out

Theatre Development Fund's second Autism Theater Initiative performance of The Lion King, an autism-friendly night at the theatre that will be presented Sept. 30 at 1 PM, sold out in less than 24 hours.
"We're gratified to have tapped into this community of families who are hungry for access to the performing arts, which is evident in the speed in which the upcoming performance sold out," said Lisa Carling, TDF's director of accessibility programs, in a statement. "Not only does an autism-friendly performance introduce the world of theatre to the person on the autism spectrum, but it allows a family to experience it together in a supportive environment with no judgments."

PopCap Games Holds Zuma Blitz "Idols for Autism" Fundraiser for Autism Speaks

SEATTLE, Jun 29, 2012 (BUSINESS WIRE) -- PopCap Games, a division of EA and maker of some of the world's most popular video games, this morning announced a three-day promotion involving its popular Facebook game Zuma Blitz and benefitting the world's leading autism and science advocacy organization, Autism Speaks. For the next 72 hours only, Zuma Blitz players can purchase discounted "Idols" which provide access to powerful special abilities and effects to boost players' in-game performance, with proceeds from the Idols sale donated to Autism Speaks. The promotion comes on the heels of a recent record-setting marathon event in New York and London which featured PopCap's latest social game Solitaire Blitz and raised funds for charity: water.

Thursday, June 28, 2012

Athletics: 12 Facts for London 2012

Here’s a list of 12 interesting things you should know about Athletics at the London 2012 Paralympic Games.

There will be 1,100 athletes competing on the track and field in 170 medal events from 31 August – 9 September.
Athletes are grouped according to how much their impairment impacts their performance in their specific event.
• Classes 11-13: Athletes with a visual impairment.
• Class 20: Athletes with an intellectual impairment.
• Classes 31-38: Athletes with cerebral palsy, with classes 31-34 using a wheelchair to compete.
• Classes 40-46: Athletes with a loss of limb or limb deficiency.
• Classes 51-58: Wheelchair racers or field athletes who throw from a seated position.

Wednesday, June 27, 2012

Giving Children with Autism a Voice

Rose Mason, a graduate student,
helps a child communicate with an
One in 88 children is diagnosed with an autism spectrum disorder by age 8, according to a recent study by the U.S. Center for Disease Control and Prevention – a rate that has risen far above the 2006 estimate of one in 110.
Studies indicate that more than 60 percent of these children are unable to communicate their wants, needs and thoughts verbally.
“Delays in or lack of language development are a primary characteristic of autism,” said Jennifer Ganz, associate professor of special education at Texas A&M University. “Teachers, families and researchers face the challenge of determining which teaching strategies are most effective and efficient in addressing these communication deficits.”

The Damage Done By Special Ed Disaparities

From John Thompson on the Huff Post's Education Blog.

The recent GAO report, "Charter Schools: Additional Federal Attention Needed to Help Protect Access for Students with Disabilities," could help us understand why well-intentioned school "reforms" have done so much harm to the children that they were designed to help. The problem is not special education students. The problem is not charter schools. The problem is the refusal to acknowledge what would have been necessary to help schools with extreme concentrations of traumatized children as they had to serve even greater numbers of students with disabilities left behind in an age of choice.

Elvis Tunes May Be Key Understanding Disabilities

Elvis Presley’s sultry singing voice may hold the key to understanding the social deficits affecting some with developmental disabilities, new research suggests.
Using Presley’s “Love Me Tender” and a handful of other songs, scientists say they were able to obtain a better understanding of the biological triggers involved in Williams syndrome, a developmental disorder marked by extreme friendliness.
The findings could also have implications for those with conditions ranging from autism to anxiety and post-traumatic stress disorder, researchers said.

Tuesday, June 26, 2012

EEGs May Someday Be Able to Diagnose Autism

A readily available brain test could someday be used to diagnose autism in children as young as 2 years old, offering the potential for earlier intervention, according to a new study published online in the journal BMC Medicine.
Researchers at Boston Children's Hospital used electroencephalograms (EEGs), tests that measure electrical activity in the brain, to compare the brains of 430 children with autism and 554 normal children between the ages of 2 and 12.
Children with autism showed reduced connectivity among a number of areas of the brain, and these patterns were different than the patterns observed in normal children.

Our Story: D-Day

Came across an interesting post by Nicole Thibault, who has three sons -- two with special needs, and blogs about parenting.

Everyone loves to hear stories. Stories about how they met the love of their life. Stories from their childhood. Stories about their vacation.
For most parents of children with Special Needs, they have a different kind of story -- a story about when they knew something was not quite right with their child. Unless their baby was born with a condition and they knew about it from Day One, they have a story of their journey to understanding their child's disability.
This is the story of our family's journey.

Therapy in a Multisensory Environment

Six-year-old John Burks sits near a padded white mat in a white-walled room, waiting for it to be transformed into his own private party space.
Streams of red simultaneously gush through a pair of ceiling-to-floor vertical bubble tubes on each side of the room. A pile of fiber optic strands turn red and another cluster of green strands hang from the wall. Geometric patterns twirl and spin into endless kaleidoscope shapes. A silver disco ball glitters in the air as "Mr. Blue Sky" plays in the background.
John sits mesmerized as the room bursts into color. Initially oblivious to the music, he starts bobbing his head once the track switches to "Strange Magic," another song from the Electric Light Orchestra.
This is all part of therapy designed for children and adults with developmental and cognitive disabilities at the Milwaukee Center for Independence.

Opinion: An Illinois Letdown

BLOOMINGTON, Ill. -- Once again, Illinois has decided it is easier to shortchange those who can’t fight back rather than to make hard decisions with its checkbook.
The latest episode involves the Division of Developmental Disabilities that will delay payments at least a month to group homes and other agencies that help the developmentally disabled.

Monday, June 25, 2012

Thankful for the Golden Arches

Just an amazing story by Michael Bernick, former California Employment Development Department Director and Milken Institute Fellow.

This is an account of one recent job search in California. Or more. You be the judge.
The job seeker is a senior at one of the California State University (CSU) campuses in the Bay Area. He has nearly a 3.0 grade average.  Also, he is a person with autism, with significant cognitive gaps and sometimes unusual behaviors.
The job seeker was looking for a summer job and started in January of this year. He applied online to 5 internships from his University’s career center. These internships were with nonprofits in Oakland, San Leandro and Hayward.  He did not receive one call-back.

Families Struggle to Fill Gaps in Care

Jennifer enjoys a laugh with Rebel,
one of her family's dogs.
TOMS RIVER, N.J. -- Jennifer Jankowski of Toms River is a 14-year-old with Down syndrome. She is also autistic.Her mother, Elizabeth, works a late shift as a service clerk at Verizon, so she can get her daughter off to school in the morning. But that leaves a gap from when Jennifer gets home from school and when her father gets home from work around 4:30 p.m. If it weren’t for Jennifer’s older brother, Michael, 18, Elizabeth Jankowski says she doesn’t know who she would be able to get to watch Jennifer.

Raising the Bar on Expectations

Poor Blanche DuBois. Tennessee Williams' perpetually dependent anti- heroine's most renowned declaration, "I have always relied on the kindness of strangers," was employed in a column by political pundit George Will. Will, the loving father of an adult with Down syndrome, referenced this venerable line as an example of the form of eternal childlike dependence on others that many (including Will) still believe adults with intellectual disabilities must employ if they are to make their way in the world.
To say there is no kernel of truth to this is unrealistic; still, it is fascinating to hear him describe, without irony, the fluctuating adult-child duality his son signifies. Jon Will switches between adult and child roles, for example riding Washington's subway by himself to the Washington Nationals ballpark, where upon arrival he "enters the clubhouse ... and does a chore or two." George Will goes on to say, "People with Down syndrome must remain brave in order to navigate society's complexities. They have no choice but to be trusting because, with limited understanding ... ."

Read more here:

Opinion: Justice for All in New York

When Gov. Andrew Cuomo took office in 2011, he inherited a human services system riddled with problems. The people the state was charged with looking after — individuals with developmental disabilities, special needs and other vulnerabilities — were far too often facing abuse and mistreatment at the hands of the very workers who were responsible for their well-being. New York, which in the past had led the nation in its quality of care for this community, was clearly not living up to its responsibility to protect the vulnerable people in its care.
New York is hardly alone in wrestling with the problems of abuse and neglect in its human service systems. States all across the country are experiencing similar problems, and most are responding, if at all, with limited and specific fixes.

Sunday, June 24, 2012

Aces for Autism, a Big Hit

INDIAN HARBOUR BEACH, Fla. -- Joseph Mazzella doesn’t often like to try new things.
Volunteer Cindy Dickens works
with Cedrik Dunlap, left, and
Joseph Mazzella, right.
But the 14-year-old is very polite about it.
“No thank you. No thank you,” he’ll say, usually twice like that. But sometimes he’ll say it even when he doesn’t mean to say no, like Saturday afternoon volleying with a coach at the Kiwi Tennis Club.
“Do you want to play tennis again?” I asked him. “You seem pretty good at it.”
“No thank you. No thank you,” came his reply, despite the smile on his face.
Mazzella was one of 50 kids registered for the third annual Aces for Autism tennis clinic put on by Florida Tech’s Scott Center for Autism Treatment, a terrific time for kids with varying degrees of autism to play tennis, work on social skills, exercise a bit and get exposed to a sport that holds quite a bit of appeal for those with autism.

Saturday, June 23, 2012

Target Employee Celebrates 18 Years

Ellen Marshall on the job at Target.

COLORADO SPRINGS, COLO. -- On Friday, Ellen Marshall said goodbye to a job she has held for the past 18 years.
Marshall, who has a developmental disability, has overcome everyday challenges in order to be a cart attendant.
"I promised the organization when I came here that I would stay here as long as I was physically able." Marshall said.

Friday, June 22, 2012

'95 Percent Boy, 5 Percent Autism'

SHELBY, N.C. -- Dustin Parris adjusts the camouflage baseball cap perched on the side of his head – it must be cocked to the side just the way he likes it.
The 6-year-old’s cheeks and arms are coated with white lotion. It helps soothe the poison oak rash he got one day while exploring outdoors. He loves tractors, lawnmowers and swimming in the pool.
When he’s outside, he’s content.
He’s so fast, so smart,” Suzan Parris said of her son. “No fear.”

Celebrating Olmstead and Community Living

From the White House Blog, a post by Kathleen Sebelius is US Secretary of the Department of Health and Human Services.

As I travel the country and visit people in their homes, schools, workplaces and health centers, I am reminded just how much our lives are shaped by the places we occupy.  Oftentimes, our opportunities are defined by the homes and communities in which we live.  Thirteen years ago, on June 22, 1999, people with disabilities moved closer to choosing where they live when the Supreme Court handed down the Olmstead v LC decision. This ruling established that people with disabilities have the right to live in the community with the proper services and supports, rather than being unnecessarily institutionalized. 

Heartbreaking Results After Evaluation

Post by a blogger from PsychCentral.

At almost three years old he is so sweet. He is lovable, so full of hugs and kisses. He laughs, plays, jumps, dances and loves life. He is a very happy little boy.
I was certain prior to his most recent evaluation that he had grown by leaps and bounds. A small part of me hoped he had “outgrown” Autism, and the news would be wonderful. I see so much progress in him every day - doing new things and saying new words.  So when the evaluation concluded I was devastated to find he hadn’t grown as much as I had anticipated. Shame on me.

Getting Attention boosts Speech in Preschoolers with Autism

LOS ANGELES -- Having adults engage the attention of autistic preschool children by gesturing and pointing to toys increases children's language skills, U.S. researchers say.
First author Connie Kasari of the University of California, Los Angeles, and colleagues said the study involved 40 children diagnosed with an autism spectrum disorder at ages 3 and 4, who received the intensive therapy program or standard intervention. The children were evaluated at ages 8-9, and all of the children in the study had attended preschool for 30 hours each week, Kasari said.

Thursday, June 21, 2012

Seeking an Autism Diagnosis as an Adult

From The Washington Times' Jean Winegardner.

SILVER SPRING, Md. -- I have Asperger's syndrome. After years of hearing that parents were often diagnosed on the autism spectrum after their children were and reading accounts of autism that applied to me as much as they did to my autistic son, I finally chose to pursue and get an Asperger's diagnosis for myself this year.
As an adult who does not require services and who is pretty effectively indistinguishable from typical adults, some might wonder why I felt the need to get an official diagnosis. After all, such a thing requires a substantial investment of time, money and mental energy. Why bother?

Adults Facing Challenge to Find Work, Home

ST. LOUIS -- Sam Lyss is an ideal employee.
Sam Lyss at his volunteer
job in a library.
He never misses a day at work, has an eye for detail, loves what he does and is easy to train.

“He’s a whiz at mailings,” said his mother, Jane. “If you lay it out for him and show him one time, he watches you do it once and then just turns around and starts working.”
Then there’s his work ethic.
If you give him too much work, he actually won’t leave,” she said. “They have to take half of it and hide it.”

NJ Provider Awarded Grant to Expand Care Model

Developmental Disabilities Health Alliance (DDHA), a provider of primary medical care to people with disabilities, has been awarded a $3.7 million grant under the Affordable Care Act to expand its care model in New Jersey.
Dr. Ted Kastner, founder and president, said DDHA now serves about 500 patients in New Jersey. The grant from the Centers for Medicare and Medicaid Services will add 3,000 patients – 1,500 in New Jersey; and another 1,000 in New York and 500 in Arkansas, where the program will also be replicated.

Wednesday, June 20, 2012

First Responders Get a Lesson in Autism

NEW ROCHELLE, N.Y. -- Bill Cannata a Captain with the Westwood MA Fire Department conducted a training session for the New Rochelle Fire Department to teach New Rochelle's first responders how to to identify persons with Autism Spectrum Disorder (ASD) and how best to help them in an emergency. The session one of several he is providing this week to the different shifts. His fire/rescue autism program has educated more than 15,000 first responders.
Cannata explained how people with ASD may react to an emergency situation by getting out of control, acting aggressive, or simply shutting down -- they may walk back into a burning building, run away or assault rescue personnel. He provided examples including several based on his son Ted who is a 21-year old with autism.

Illinois Gives Agencies Funds to Maintain Services

The order from Illinois Comptroller Judy Baar Topinka came a day after group homes and other agencies for the developmentally disabled were notified by the state Department of Human Services that there wasn't enough money in the current budget to pay them for their services this year.

Tuesday, June 19, 2012

Feds Urge States to Meet Housing Obligations

As states work to boost community-based housing options for people with developmental disabilities, federal officials say stronger ties are needed between health and housing agencies.
Under the 1999 U.S. Supreme Court decision in Olmstead v. L.C., people with disabilities have the right to live in the community whenever possible. At the federal level, Medicaid and housing officials say they are increasingly working together to ensure that community options are in place.
Now, they’re urging states to establish similar collaborations.

Harlem Group Home to Open in Luxury Condo

NEW YORK -- Manhattan Community Board 10 has lost its fight to keep a group home for four developmentally disabled men out of a luxury Harlem condominium. The state’s Office for People With Developmental Disabilities approved the plan for Community Options to house the four men, aged 17 to 22, inside a unit at 555 Lenox Avenue at West 138th Street, DNAinfo reported.

Monday, June 18, 2012

Nurse's Creativity Helps Child Battle Obesity

The nurse practitioner at the health department handed me a new referral. "Evan’s a healthy 6-year-old with Down Syndrome," she said. "No cardiac problems. He’s short with a body mass index at the 90th percentile. Can you make a home visit?"
Two days later I was sitting in the family’s apartment talking with Leslie, Evan’s mother, a stocky middle-aged woman wearing khaki slacks and a white T-shirt.
Dressed in a navy sweatsuit, Evan sat in the corner of the room in an oversized children’s rocking chair watching Sesame Street on television. A box of Cheez-Its sat on the table beside him.
Piles of men and women’s clothes were stacked on top of a sewing machine by the back wall. "I alter people’s clothes," Leslie said. "I have to work. We need the extra money."
I smiled at her. "Let’s talk a bit."
"There’s nothing a nurse can help with," she said. "Evan’s doing OK. So what if he has a little baby fat?"
"He’s really not a baby anymore," I said.
Leslie swallowed hard. "You don’t know what it’s like. I’m here every afternoon with him. Mornings, too, when he doesn’t go to school." She sighed. "Evan sits watching television while I sew. He loves to rock and eat. I know it’s bad for him but … ." Tears filled her eyes.

New York Strikes Deal on Policing Abuse

ALBANY -- Gov. Andrew M. Cuomo and legislative leaders reached a deal Sunday night to create a new state agency to police abuse and neglect of more than one million New Yorkers with developmental disabilities, mental illnesses and other conditions that put them at risk, state officials said Sunday.
The governor also agreed to take some steps to bolster outside oversight of the state’s care, yielding to concerns raised by Assembly Democrats and some advocates for people with disabilities that state regulators have long failed to adequately respond to cases of abuse on their own. Lawmakers also agreed to expand the state’s public disclosure law, requiring thousands of nonprofit groups that provide services to disabled and mentally ill people to make records of abuse and neglect public.

In ER, Caregiver Key to Treating Autistic Patients

The bright lights and noise in an emergency department or examination room can disturb and upset a patient with an autism spectrum disorder; so can the exam itself if the doctor does not use the proper approach.
Unfortunately, caregivers of patients with autism frequently report that a trip to the hospital can turn into a distress-filled struggle, getting in the way of proper treatment, according to a recently published online article by five emergency physicians, including three from Allegheny General Hospital.

Sunday, June 17, 2012

Students Pay the Price of Special Ed Crisis

Stephanie Stile with her daughter Vera Appedu, 5.
STATEN ISLAND, N.Y. -- Across Staten Island and New York City, the number of students with special needs has swelled in the last decade.
But the number of school psychologists who evaluate those children clinically, determine if they are disabled, and place them in the right classes has actually declined.

Survey: Family Caregivers Fear Medicaid Cuts

In 2010 The Arc conducted a national internet survey to capture the perspectives of people with intellectual and or developmental disabilities (I/DD) and their family caregivers. Much of the data supports The Arc’s Don’t Cut Our Lifeline campaign.
The Family and Individual Needs for Disability Supports (FINDS) survey focused on issues including educational, housing, employment and support needs of people with ID/DD and their families. More than 5,287 family respondents participated in the survey; of these, three-quarters shared their home with a person with ID/DD. Overall, 95 percent of respondents were parents, siblings, children, grandparents or other relatives of a person with ID/DD.

Saturday, June 16, 2012

To Be or Not to Be: Nothing Stops These Actors

Actress Samantha Joy Pearlman, left
encourages Armanda Long
PHILADELPHIA — Shakespeare chose simple words for the most complicated of questions, words so powerful that they have resonated for four centuries.
When Heather Krause, a teaching artist with Walnut Street Theatre, saw how her students responded to those words, she had an outrageous idea: stage Hamlet with six high school-age actors with mental retardation and cerebral palsy, children so disabled that all are in wheelchairs and some cannot speak without the aid of machines.

Friday, June 15, 2012

Tim's Place Restaurant Takes Unique Approach Thanks to Special Owner

Just a great story from CBS Evening News. You must watch the segment.

Tim Harris, left, and his father Keith
embrace at Tim's Place, a restaurant
which Tim owns and runs.
ALBUQUERQUE, N.M. -- Sunday is Father's Day, which celebrates the special bond between a father and his son. We went "On the Road" to meet a father who couldn't be prouder, and a son who couldn't be more thankful.
When Keith Harris' son Tim was born, a half-hearted smile was all he could muster.
"Our pediatrician asked me if I knew what down syndrome was, and the world turned black at that moment," he told CBS News.

Class Rallies Around Student with Autism

FORT JACKSON, S.C. -- When Staff Sgt. Chad Miles, his wife, Chazia, and their four children moved from Fort McPherson, Ga., to Fort Jackson last summer, they did not know what to expect.
Although moving can be hard on any military family, the Miles family had an additional worry. Their 8-year old son, Chad, was diagnosed with autism in 2009 -- a developmental disorder that, for Chad, led to problems with verbal, cognitive and social skills.

Father's Day, with Autism: Rethinking the Cool Dad

In honor of Father's Day, a post from The New York Times' Motherlode parenting blog by Joel Yanofsky, a writer in Montreal, Canada. His latest book is Bad Animals: A Father’s Accidental Education in Autism. 

The cover story in the June issue of Wired magazine, celebrating geek dads, is ruining my Father’s Day. It’s got me thinking: should I be doing more?
Like building a hovercraft, dissecting a baseball, making gummy worms glow or instilling “an empowering worldview” in my child. These are just a few of the activities suggested in Wired’s “guide to being the coolest father on the planet.”
“Breathe,” my wife, Cynthia, says when I ask her what “an empowering worldview” might be. “Relax and breathe.”
This is old advice. In fact, the first time I failed to follow it was almost 14 years ago. Cynthia was pregnant with our son Jonah when I began hyperventilating, consumed with worry, thinking of all the things I’d need to learn to do for the child’s sake – ice skating? Break-dancing?
Now, there’s a different reason the do-it-yourself smugness of Wired is getting to me. Jonah has autism and I don’t have to go any farther than the basement storage closet to survey all the projects we’ve started and abandoned, often after only a day or two.

Mets Gear 'Quiet' Section Toward Autistic Kids

NEW YORK -- For some New York Mets fans, a designated quiet area without loud music or cheering in their home stadium of Citi Field would be nothing short of blasphemy.
But in an email to their fans Wednesday, the baseball team introduced the proposal, before revealing the section's motive: to accommodate autistic children.

Union: Center's Residents Rushed Out

JACKSONVILLE, Ill. -- The union representing Jacksonville Developmental Center employees issued a laundry list of complaints Thursday, calling into question the safety of residents being moved out.
Despite being fully funded for the coming fiscal year, Gov. Pat Quinn remains dedicated in his effort to shutter the facility as efforts to move residents into community settings continue.
But the American Federation of State, County and Municipal Employees, Council 31 claims in a letter addressed to the state Department of Health and Human Services that the consulting firm tasked with moving residents have ignored  their advice and have rushed residents out, leading to one injury.

Thursday, June 14, 2012

Life Unexpected

Came across this on family life blog from The Columbia Daily Tribune in Columbia, Mo. Just gives everyone a small glimpse at life for those who have a child with special needs.

None of us are immune to unexpected events - that's just a fact of life. One of the major things I have learned from having a special needs child is that things often do not go according to plan. I have really had to learn to be extremely flexible. If I need to get up extra early or need a good night's sleep for an important task the next day, that will be the night my son decides to wake up at 4:30 a.m. He often likes to have his own party in the middle of the night. It is so cute when he is kicking and making happy sounds but I just want to sleep. He just wants to be happy - he doesn't care that we should be sleeping. He has his own timetable. Time is all his, and he knows no bounds.

Sexual Assault Prevention Program Launched for People with Special Needs in St. Louis

ST. LOUIS -- Many parents feel they don’t know how to have "the talk" with their children. For Janet Bowen, whose son has cerebral palsy, the process took years as she struggled to explain the facts of life in a way he would understand.
“I was trying to find the right way to present the information to him so he could understand because he did have some language difficulties,” Bowen said. “A lot of times it was repetitive. It was a difficult thing.”
This is not the only difficulty that parents of children with developmental disabilities face. More than 90 percent of people with developmental disabilities will experience sexual abuse, according to a press release from YWCA Metro St. Louis.
Now, a new program seeks to address these issues in St. Louis.

Parents Realize Son on Spectrum Loves Travel

Morgen Kann Warten — German for Tomorrow Can Wait — is a Kickstarter project about traveling with an autistic child in Europe. Scott and Monika Knight (who live in Berlin) describe their travels all over Europe — Thessaloniki in Greece, Nice and Paris in France, Dublin and Connemara in Ireland, Stockholm and the south of Sweden, Prague in the Czech Republic, to name a few — with their now-11-year-old autistic son, John. As they write:
Severely autistic people aren’t primarily known as globetrotters. They like routines and familiar surroundings. Our son John, eleven years old, severely autistic and non-verbal, is no exception to this. But he also really likes to travel. As soon as we realized that, we were on the road and have traveled a lot throughout Europe since.

Frustrated By Autism, Father Turns to Photos

SAN FRANCISCO -- "I don't care about autism," says San Francisco-based photographer Timothy Archibald, who has a way of being refreshingly candid about kids who have it.
"They can frustrate you to no end," he says.
Archibald's son, Eli, is autistic. And really, he clarifies on the phone, he doesn't care about the diagnosis. What matters, he says, is his relationship to Eli, however complicated it may be.

Wednesday, June 13, 2012

Apple Lineup to Become More Disability Friendly

The iPhone and iPad will soon be even simpler to use for people with a wide range of disabilities thanks to a new software update, Apple Inc. officials said this week.
Changes designed to make the popular mobile devices more accessible are expected in a forthcoming update to Apple’s iOS software, the operating system that powers the iPhone, iPad and iPod touch.

Local Fire Dept. and Kennedy Krieger Institute, a Perfect Match

Justin Etherton, left, and
T. Cosgrove Jones of the
Rockville Volunteer Fire
Department firehouse.

When Mark Trexler, educational coordinator at Kennedy Krieger Institute, contacted the Rockville Volunteer Fire Department about sending some students with special needs to the station to complete a few helpful tasks, he reached the right person. T. Cosgrove Jones, president of the fire department, has a son with Down syndrome.
“They hit the right guy to come here and do this,” Jones said. “I know what these kids need.”

Music Therapy Makes a Difference

Stuart Rabin was 6 or 7 years old
when his mother, Anne, first
witnessed the positive effects
that music therapy could have on her son.
Stuart Rabin was 6 or 7 years old when his mother, Anne, first witnessed the positive effects that music therapy could have on her son. Stuart, who will soon turn 27, has a genetic disorder called Angelman Syndrome, which caused him to have significant developmental and cognitive disabilities. And 20 years ago, he was still having trouble sitting upright, Anne Rabin said.
Music therapy was introduced to Stuart back then as part of his early intervention care, and one of the first changes his parents noticed during their son’s therapy sessions was his ability to sit on a bench next to the music therapist.

Tuesday, June 12, 2012

Seeing Business Potential and Developing a Niche

Thorkil Sonne
Experts wrung their hands last month over a study published online in Pediatrics, which found that one in three young adults with an autism spectrum disorder (ASD) had not held a paying job or attended further education within six years of high school graduation.
It’s a growing problem: In the United States, one in 88 American children has autism, and prevalence is rapidly increasing. When they reach adulthood, these people are often left out of the labor market, where many companies dismiss them as “disabled” or unqualified.
But Danish social entrepreneur Thorkil Sonne knows better. In 2004, he saw something in the statistics that no one else could see — business potential.

In Praise of Misfits: Why Business Needs People with Asperger's, ADD and Dyslexia

In 1956 William Whyte argued in his bestseller, “The Organisation Man”, that companies were so in love with “well-rounded” executives that they fought a “fight against genius”. Today many suffer from the opposite prejudice. Software firms gobble up anti-social geeks. Hedge funds hoover up equally oddball quants. Hollywood bends over backwards to accommodate the whims of creatives. And policymakers look to rule-breaking entrepreneurs to create jobs. Unlike the school playground, the marketplace is kind to misfits.

Health Care Disparities for Children with ASD

Children with Autism Spectrum Disorders (ASD) require an array of specialized health care services. With these services come higher costs for parents and insurance providers. University of Missouri researchers compared costs and types of services for children with ASD to costs and services for children with other conditions like asthma or diabetes. The researchers found children with ASD paid more for health care than children with other conditions. In addition, children with ASD used more services yet had less access to specialized care"

What Parents Want for Their Children

From Huffington Post's Dafna Maor.

My son is lying in bed in his room now, sleeping. When he sleeps, he looks different, both younger and older than he really is, like many children do when they sleep. His hair is damp; he had a fever today, and I had to change his shirt after he had fallen asleep. Watching a beautiful child sleep, you realize that what you really want to do is to take him in your arms, hold him and carry him with you wherever you go. But you have to let go; he needs his rest. Tomorrow we'll go to the doctor.

'Friending' with Autism

From SFGate Blogger Laura Shumaker.

My husband and I went to a graduation party over the weekend, and while he went to get us something to drink, I was greeted by a very friendly man wearing white jeans and a Tommy Bahama shirt who acted like we were long lost friends. I had no idea who he was but played along for a bit (“Hey … you, how’s  the family?”) hoping that eventually a light would go on. Just as he was filling me in on  his shoulder surgery, it hit me. This man was a Facebook friend, one who I hadn’t actually talked to in person since were were chaperones on a kindergarten field trip two decades ago.
The encounter reminded me  of a recent conversation that I have had with Matthew about Facebook. He’d “friended” a guy-I’ll call him Joe-that he knew remotely in middle school. He noticed that Joe lived near him in Santa Cruz. “Do you want to hang out sometime?” Matthew wrote on Joe’s wall. “Yeah, we’ll have to do that one of these days,” Joe replied. Encouraged, Matthew tried to nail down a date, sent way too many messages until Joe defriended him. The incident was one of many disappointing interactions for Matthew on Facebook.

Medicaid Waiver Would Increase Community-Based Services in New Jersey

New Jersey’s application for a Medicaid waiver would change the way federal money is administered for people with developmental disabilities, allowing many to stay out of institutions by receiving more community-based support services.
If approved, the state is proposing to spend $90 million a year on support that includes day programs for the disabled as an alternative to living in one of the state's seven developmental centers.

Emotions Run High as Group Home Denied

Seems as if NIMBY is alive and well. Despite the slowing of group home development, the attitudes and fears continue at full speed.

HERRIN, Ill. -- More than 80 people — including about 20 who were standing — packed the Herrin City Council meeting Monday, the topic drawing high emotions.
The council had to decide whether to overrule the city’s zoning appeals board and grant a special use permit to The H Group to use a house it purchased as a group home for four developmentally disabled residents.
Speakers on behalf of the group home included Mayor Vic Ritter, Alderman Elizabeth Issler and even a resident of the subdivision where the home is located. She said she and most of her neighbors would not have signed petitions against the group home if a meeting had been held first so they would have known the facts.
A disabled veteran from Marion asked if he could be refused the right to live in his own subdivision because he suffers from service-related stress. His impassioned speech brought the crowd to its feet in tribute.
But in the end, only Issler and Alderman Robert Craig voted for the special use permit; the other six aldermen voted against allowing the home.

Monday, June 11, 2012

Miami Marlins Support Baseball League for Children with Speical Needs

MIAMI -- Summer is here which means baseball season is in full swing and as Neighbors 4 Neighbors discovered, there’s support to build a new kind of ballpark to serve some special players so that every child has a chance to play baseball.
The Miracle League of Miami-Dade County is working to build a baseball field for special needs children.

Autism at the School Carnival

From the Washington Times' Jean Winegardner. 

 SILVER SPRING, Md. -- Last week was my sons' elementary school end-of-the-year carnival. There were moonbounces and kids playing soccer and a DJ and a playground and food and about a million kids and everyone was having a great time.
Except for me. I felt as if I were having a nervous breakdown.
These events are always so stressful for me. As a parent to a child with autism who is, in the parlance of the times, an "eloper," it is excruciating to give him personal freedom but also try to keep my eye on him as he weaves in and out of crowds of people. Add two other children that I have to keep track of as well and it is no wonder that I spend the evening scanning the crowds and counting my children.

Foods for Children with Down Syndrome

From Jacqueline Banks, a certified holistic health counselor, on Fox News.
In today’s three part series on diets for special needs, we will be taking a look at Down syndrome. Children with Down syndrome are at a higher risk than the general population for certain health concerns.
Eating nourishing foods can help reduce some of the physical symptoms and increase overall health. Brain physiology and common health symptoms will be covered first, followed by important foods to include in their diets and which foods to avoid and why.

Freezer Failure at Brain Bank Hampers Autism Research

A freezer malfunction at Harvard-affiliated McLean Hospital has severely damaged one-third of the world’s largest collection of autism brain samples, potentially setting back research on the disorder by years, scientists say.
An official at the renowned brain bank in Belmont discovered that the freezer had shut down in late May, without triggering two alarms. Inside, they found 150 thawed brains that had turned dark from decay; about a third of them were part of a collection of autism brains.

Sunday, June 10, 2012

After Son's Death, Family Aids Autism Research

Christopher and Ivana LePoer
LePoer raced home to join the frantic search, which was soon expanded to include the police. His wife, Ivana, and their other children had already scoured the park, the streets in their Westborough apartment complex and the boy’s nearby school — all without success, leaving the initial impression that he might have been kidnapped.

Adoption Teaches Mom About Patience, Love

FAIRFIELD, Ohio – DJ McCollum leans his left ear -- his only one -- near his mother's mouth
"I love you," Pat McCollum says in a loud, clear tone.
DJ squeals and grunts and waves his arms in happiness. Then he pinches a grape with his left thumb and index finger, pops it into his mouth and leans in again.
"I love you," Pat McCollum says.
The pattern stops only when DJ's plate is empty of grapes.
"They tell me he's deaf," his mom said later. "I don't believe them."
The pair have been proving experts wrong for a long time. DJ wasn't supposed to live past 2, a year after an older child in his home dropped a match into DJ's crib, burning him over 85 percent of his body, leaving him disfigured without both feet and his right hand and ear or the ability to speak or hear or function intellectually beyond the level of an 18-month-old.

Saturday, June 9, 2012

Federal Judge OKs DOJ Settlement

RICHMOND -- A federal judge Friday said he would approve a $2 billion settlement between the Commonwealth and U.S. Justice Department designed to expand community-based services to people with intellectual and developmental disabilities.
But before Judge John A. Gibney enters the agreement into the court record, he wants a provision added that would give residents of state institutions the option to remain in a state-run facility.

Friday, June 8, 2012

Researchers Identify Possible Cause of Autism

POCATELLO, Idaho --  A team of Idaho State University researchers have discovered that fish show autism-like gene expression after exposure to water containing psychoactive pharmaceuticals, according to research published June 6 in the open access journal PLoS ONE.
The results may suggest an environmental trigger for autism, although this finding may only apply to genetically predisposed individuals.

Thursday, June 7, 2012

Because of Katie, Children with Severe Disabilities Are Living at Home

From The New York Times Motherlode blog, a post by Marie Myung-Ok Lee, a novelist and teaches creative writing at Brown University. 

Katie Beckett died last month at age 34. Most Americans don’t know who she is. But as a parent of a child with disabilities, her name is as familiar as my own child’s. Because of the legislation that bears her name, hundreds of thousands of children, including my own, are able to be at home with their families instead of being institutionalized.
At 5 months of age, encephalitis left Katie Beckett spending most of her early years in the hospital. When she was 3, doctors cleared her to go home with proper supports — she still needed to be on a respirator 12 hours a day. Her insurance had been exhausted, and Medicaid refused to pay for her care unless it was done in the hospital -- even though treatment could be administered at home at one-sixth the cost.

Children Thrive in Inclusionary School

There's a small school at the University of Washington where many kids with developmental disabilities first learn to talk, count and play. The kids learn these skills in classes with their typically-developing peers, from birth through kindergarten. KUOW's Ann Dornfeld reports from the EEU: the Experimental Education Unit.

Pat O'Kell is watching his son Finn's kindergarten class at the EEU from an observation booth with one–way glass.
O'Kell: "If you sit in these booths and watch for a little while, everyone's sort of struck by which ones are the typical kids, and which ones are the special needs kids. It gets kinda hard to tell. They all kinda blend together and they're all just kids to the teachers and to each other, which is the great thing about inclusion."
About half of the kindergarteners at the EEU have autism or other disabilities, half of the kids are typically–developing. The students have a wide variety of skill levels, but they learn side-by-side.

Wednesday, June 6, 2012

A Diagnosis and Starting Life Over

From Huffington Post's Dafna Maor, global business editor with Israeli Daily Newspaper.

It is one of those things that no one can forget. The words, the actions, the daily routines -- they blur and fade out of memory in time. But the feeling of that very first week in your life after you had been told that your beautiful child, your baby, is afflicted with something too horrible for any parent to imagine -- that bleak, despairing, consuming fear is a feeling one never forgets.

Study Links Less Folic Acid in Pregnancy to Autism

NEW YORK --  In a new study of California moms, women whose children had autism recalled getting less folic acid through food and supplements early in their pregnancies than those whose kids didn't develop the disorder.
Meeting recommendations for folic acid -- at least 600 micrograms per day -- in the first month of pregnancy was tied to a 38 percent lower chance of having a kid with autism or Asperger's, researchers reported last week in the American Journal of Clinical Nutrition.

Jenny McCarthy: Jim Carrey Turned His Back on Her Son with Autism

Jenny McCarthy doesn't joke around when it comes to her autistic son.
But the former Playboy model and current host of new dating series "Love in the Wild" recently revealed that her ex, actor Jim Carrey, isn't quite as serious about her young son Evan, 10.
"I've tried to ask (Jim) numerous times (to see Evan), because my son still asks," McCarthy told Howard Stern on his radio show Monday, adding that Evan told her he missed Carrey "almost weekly."

Arc of Baltimore Contract Draws Ire of Minority Business Leaders

BALTIMORE -- The state is set to award a $9.4 million contract to a Baltimore nonprofit to help clean local subway stations — a move that angers some minority business leaders.
The state Board of Public Works will vote June 6 on a five-year contract for the Arc Baltimore to provide janitorial services at Metro stations in Greater Baltimore. The Arc Baltimore is a nonprofit that provides jobs for people with developmental disabilities. The organization has held a contract with the state to provide janitorial services at area metro stations for nearly 10 years, said Stephen H. Morgan, executive director with the Arc Baltimore.

Tuesday, June 5, 2012

Life After High School and Other Challenges

MINNEAPOLIS -- Sam Hesla loves basketball, tennis and karate. He DJs at weddings and high school graduations. The 21-year-old hates the idea that his sister, who is two years younger than him, might move out of his mom’s house first.
Hesla has Down syndrome, and although he’s broken many of the stereotypes associated with the disability, he may never live entirely independently. Housing is just one of many details he and his family are grappling with as he graduates from Minneapolis Public Schools’ Transition Plus program, designed for 18- to 21-year-olds with disabilities.
Hesla is in the middle of what some experts call the “transition cliff,” a time in the life of a young person with a disability when they leave the hyper-structured universe of public special education and enter a much less supportive adult world.

Ohio Gets $10 Million for Medicaid Training

Ohio has secured $10 million in federal funds to train 1,000 health professionals to provide better medical care for the 2.1 million people statewide on Medicaid.
The money will go to six Ohio universities — including Wright State University — for the schools to prepare medical students, residents, fellows and professionals to work as a team for low-income families and disabled patients.
“It’s a very different way of approaching the issue,” said Ohio Medicaid Director John McCarthy.

Ready and Able to Do the Job

NEW TRIPOLI, Pa. -- Bronson Baer is ready to compete in the coveted job market.
He is a team player, he is motivated and he doesn't mind doing repetitive tasks. He graduated from high school with honors and is about to achieve perfect attendance as part of Project Search — a nine-month school-to-work program for students with special needs at Good Shepherd Rehabilitation Hospital in Allentown.
"Give me a job and, with a little instruction, I'm able to do the job," says the 21-year-old resident of New Tripoli. "The motivation that I have now is that I want a job. That's what keeps me going every day."

Tommy Hilfiger Opens Up on Daughter's Autism

Designer Tommy Hilfiger is featured
in a public service announcement
for Autism Speaks.
Tommy Hilfiger and his wife Dee have more in common than just design success -- they both have children affected with autism.
Hilfiger said that one of the reasons he chose to appear in a public service announcement for the philanthropy Autism Speaks was to honor his16 year-old daughter, Kathleen.
He said that she when was five years old, she was given the diagnosis of being “developmentally delayed.”

Monday, June 4, 2012

Doctors Can Learn from Neurodiversity Movement

A must-read from the American Medical Association's Virtual Mentor, an article by Christina Nicolaidis, MD, MPH, an associate professor in the Departments of Medicine and Public Health and Preventive Medicine at the Oregon Health and Science University (OHSU) in Portland. Dr. Nicolaidis co-directs the Academic Autism Spectrum Partnership in Research and Education (AASPIRE), directs the Samuel Wise Fellowship in General Internal Medicine at OHSU, and serves as a standing member of the NIH Mental Health Services study section. 

When, at age 3, my son received a medical diagnosis of autism, my husband and I received a list of intensive treatments that we needed to initiate as quickly as possible and a pep talk saying that if we did these things there was a good chance we could “fix him.” As a mother, I was terrified. Images of Rain Man filled my mind, quickly followed by painful memories of security officers trying to restrain my beloved 350-pound adult autistic patient during a violent meltdown. As a physician and researcher, I did what I was best trained to do — I quickly took charge of the situation, scheduled consultations with every type of therapist in the city, and immersed myself in the autism literature. But I soon realized that expert opinions clashed greatly, there were no easy answers, and the evidence in support of the various therapies was extremely limited.

Food Tips for Children with Autism

From a piece by Jacqueline Banks, a certified holistic health counselor and busy mama. Her focus is on helping other busy moms in all stages of motherhood keep themselves and their little ones healthy and happy. She uses natural and organic solutions to solve individual health problems and promote clean living.

As a certified holistic health counselor and a mother, I’ve had my share of experience helping children with disabilities. Over the next three weeks, I will be featuring three disabilities that are increasingly prevalent: Autism spectrum disorder (ASD), Down syndrome and cerebral palsy.
Dr. Manny Alvarez, senior managing health editor at, has asked that I offer suggestions on diets to support children with these special needs. We will be taking a look at brain physiology, common physical symptoms, nourishing foods and foods to avoid.

Her Goal: Preserve Medicaid's Safety Net

Marisa Murray helps her
mother, Nancy, prepare salad.
PITTSBURGH -- Those of us who have family members with developmental disabilities and the need for life-long support have a close relationship with Medicaid, perhaps more than many people realize.
From an early age, Medicaid is involved with our loved ones' health and well-being. During childhood years, Medicaid can pay for what private insurance does not cover for medical needs and therapies. When our children become adults, Medicaid can fund the services they need in their daily lives.
With one caveat: Medicaid provides this safety net only if it is adequately funded. At present, it is not. And with major changes proposed at the federal and state level this year, the safety net is expected to deteriorate further.

What's Different About the Autistic Brain?

From NPR's Health Blog.

Like a lot of people with autism, Jeff Hudale has a brain that's really good at some things.
Jeff Hudale demonstrates a face-
recognition test.
"I have an unusual aptitude for numbers, namely math computations," he says.
Hudale can do triple-digit multiplication in his head. That sort of ability helped him get a degree in engineering at the University of Pittsburgh. But he says his brain struggles with other subjects like literature and philosophy.

Medicaid Much More Than Medical Care

Georgia plans to revamp its Medicaid program, possibly by expanding the use of for-profit companies to manage care for more recipients. Sunday’s Atlanta Journal-Constitution reported on the potential advantages and risks to the poor and elderly for whom Medicaid is a lifeline. Today, the paper examines the effect on disabled Georgians who often get job training and other assistance through Medicaid to help them live independently.

Francel Kendrick, 23, works
restocking the nurse supply carts
in the cardiac ICU at Emory
University Hospital
ATLANTA -- People like Francel Kendrick once spent most of their lives locked inside state hospitals. Today, because of Georgia’s Medicaid program, Kendrick and thousands of disabled people like him can hold down a job and ride a city bus to their own homes after work.
Medicaid isn’t just a health plan for low-income people. These days, it’s a job training program, relief for a mom with an autistic son and crisis teams to help someone with schizophrenia live a stable life in the community.

Sunday, June 3, 2012

Texting and Parenting Harm Baby Development?

The latest issue of Brookings and Princeton’s “The Future of Children” adds to the growing number of studies documenting that childhood disability rates are not only unexplainably increasing, but also that the way disabilities manifest is significantly changing. Where the poster child of disability in the 1960s was on crutches, the new face is a child with autism, attention deficit hyperactivity disorder or other problems that affect the developing brain.
Growing rates and shifting patterns of childhood disability challenge notions that U.S. children are generally healthy and suggest substantial changes in the risks children encounter. While disabilities are more common in children from lower-income households, a lack of family resources, education or other forms of social deprivation don’t explain all of what’s going on.
Some risk-hunting epidemiologists are considering whether any of the thousands of new chemicals in our environment are to blame, while others are examining the role that toxic stresses may play in jolting developing nervous systems onto an aberrant path.

Georgia Reshaping Medicaid

Benjamin Lust, 21, putting away laundry
at his Acworth home, has autism
that requires care 24/7. 
ATLANTA -- Georgia is reshaping its Medicaid program, a complex lifeline for 1.7 million vulnerable people that consumes $21 million in state and federal dollars every single day.
The state is widely expected to announce a plan this summer that would dramatically expand the use of for-profit insurance companies in a new approach to managing Medicaid.
The hope: that the companies would help hold down burgeoning Medicaid costs by emphasizing prevention and better tracking and coordinating care. That should mean fewer poor, disabled and elderly Georgians end up in emergency rooms, that more psychiatric patients remain stable and that doctors share test results instead of ordering duplicates that taxpayers wind up funding.

Movie Buff Overcomes Hurdles of Autism

This is a story of how Michael Long II became a king.
There was a time when Long wouldn't look people in the eye or let anyone touch him.
Slowly the teenager became comfortable with giving some at Baldwin Middle Senior High a half embrace.
But now Michael is so confident, he'll shake a stranger's hand and even give a lucky few a full loving hug.
In fact, he has so successfully emerged from his shell, his peers crowned him Prom King.
Long, 19, has high-functioning autism and his early years at Baldwin were often difficult.

Read more here:

Friday, June 1, 2012

Elementary School Student Provides Inspiration

A colleague just shared this amazing video - definitely inspirational.

The young man who refuses to be beaten by his own limitations in the video above is Matt W. (last name unknown), who attends Worthington (Ohio) Colonial Hills Elementary School. Like most elementary schools in America, Colonial Hills has a once-a-year track and field day, and like most kids, Matt was clearly eager to take part.
However, unlike most of his peers, Matt suffers from spastic cerebral palsy, a debilitating condition that limits his ability to undergo rigorous physical exercise of any kind. Incredibly, despite knowing those limitations, Matt decided to run the 400-meter event (roughly quarter of a mile) on the school's 200-meter track.

R.I. House Adds $9.6 Million to Budget for Services

PROVIDENCE, R.I. -- Rhode Islanders with developmental disabilities would see funding for state programs and services they receive increased by about $9.6 million in the budget year that begins July 1, under a spending plan presented by the House Finance Committee Thursday night.
That $9.6 million includes some $4.7 million in state funding and a corresponding match of federal monies.
It comes a year after lawmakers voted to slash their funding by some $24 million.