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News- Page 18
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Various Articles : Parents realize autistic son is different but OK
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Posted by Sylvia on Sunday, May 08, 2005 (21:05:26)
PittsburghLive 01/04/05
By Cynthia Venturini
After son Jacob was born eight years ago, North Buffalo Township residents Matthew and Kimberly Motosicky thought they had the perfect child.
"He didn't cry," Matthew explained. "From the time he was four weeks old, he slept through the whole night. It was almost like having the perfect child. When he was an infant, we never had a problem with him."
Today the couple is learning to parent all over again with 19-month-old daughter Julia. "If she wants to come downstairs and you tell her no, she gets upset," he said. "Jacob didn't do stuff like that."
"He occupied himself all the time," he continued. "She wants you to be doing something with her all the time. When we put Jacob to bed, he never fussed. He'd go right to sleep. When we put her to bed, she'll lay there and fuss, and we'll have to go in four or five times to calm her down before she goes to sleep."
Although his early years were unusually calm, as Jacob approached school age problems with his behavior began to emerge. "When he started kindergarten in North Buffalo, we had a lot of problems with social behavior," Kimberly said. "The school was great at trying to help."
The problem had little to do with Jacob's intellect. His IQ was measured to be 127 at age 5.
At first Matthew thought his son might be hyperactive. "He was doing okay in kindergarten with the schoolwork," Matthew said, "but socially is where he was having a problem. He didn't know how to hold a conversation, didn't know how to act."
The concerned couple took their son to doctors who suggested his behavior might be due to Attention Deficit Disorder, Hyperactive Disorder, Obsessive-Compulsive Disorder, separation anxiety or Oppositional Defiance Disorder. They noticed a pervasive lack of social skills, Kimberly said, " a lack of appropriateness of what you say, the one-track mind."
"At age 5 it was trains," she explained. "He would come up to you and just talk about trains, wouldn't care what you were saying to him."
They were advised to take Jacob to Children's Community Pediatrics for counseling. After seeing Jacob for some time on a weekly basis, in February of 2004 the counselor assigned to his case told the couple their son had Asperger's Syndrome, one of the milder forms of autism which often goes undiagnosed.
"Jacob was diagnosed when he was 7 years old," Kimberly said. "I'll never forget it. (The counselor) told me she wanted to see my by myself, and I thought she was going to explain to me what was going on and everything was going to be okay."
When the counselor explained that Asperger's was just one of the disorders on the autism spectrum, Kim panicked. "I didn't know what autism was except for the child that does not speak, or Rainman in the movie -- the worst case scenario."
Staff at North Buffalo Elementary were very supportive and tried their best to help Jacob adjust, but the lack of social skills made it difficult. So the couple decided to try sending Jacob to Lenape Elementary, where he'd be in the school's emotional support class.
"The remainder of the school year was fine," Kimberly said. "Then this year, he started to get aggressive and flat out refuse to do things. We didn't know if it was boredom, because he is very intelligent."
When it became clear that Jacob no longer could attend classes at Lenape Elementary, the Motosickys were advised to try the Pittsburgh area Pace School for children with special needs. "They have autistic support classes," Kimberly said.
"Jacob never wanted to leave the house, because he liked to be alone," she explained. "He couldn't be around all of the family because he would have what we call meltdowns, meaning he would start screaming, kicking, biting, hitting, he would throw things. After that would stop, he would have no knowledge of what he did."
His high intelligence level made it a little more difficult to diagnose because some of his idiosyncrisies are common in exceptionally bright children.
"He got a book on WWII from my brother-in-law," Matthew said, "a real technical book, with specifics on things like airplanes and tanks."
"He read it in three weeks and anything that was in that book, he can tell you about it. He can tell you what they used, what kind of engines were in the tanks."
Julia used to shy away from him, because his meltdowns scared her. Now that he's more controlled, she's growing more attached to him.
He began classes at Pace Dec. 8, 2004, she said. "He now wants to go places, he wants to do things, he wants people to be around him. He's meeting his goals 80 percent of the time."
When they look back, they realize that Jacob isn't the only one who has changed. "At first, we placed a lot of blame," Kimberly said.
"We were in a denial," Matthew added.
"We were able to say, yes, our son has an autistic spectrum disorder," Kimberly explained, "but instead of really sitting down and dealing with it, we would say things like, 'You wouldn't let me reprimand him,' 'He was with this in-law too much.' Everybody placed blame everywhere."
Once the couple and other family members were able to go to autism seminars, the situation began to improve.
Through the seminars they came to a better understanding. "When we all realized that this is real, it's not because I didn't love him enough when he was an infant, or that Matt didn't love him enough, or because someone else loved him too much," Kimberly said. "It's just Jacob, and that's what he's going to be like, and that's okay because he's going to be all right."
"As parents, we know that we have to never give up," she said.
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Various Articles : Early diagnosis can help autistic children
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Posted by Sylvia on Friday, April 29, 2005 (17:40:05)
Macon Telegraph 02/03/05
By Cary Leider Vogrin
James Ruminski's bubbly babbles and giggles began fading when he was about a year old.
It was as if he were becoming a different baby.
"I saw aspects of James disappearing," said his mother, Nancy Ruminski. "We were noticing his personality changing."
Explosive tantrums set in a few months later, when he was about 15 months old. James would bang his head on the floor and scream for hours. He'd divert his eyes so as not to look directly at his parents or older sister, Faith.
"We just didn't know what happened to our happy little boy," his mother said.
Autism was snatching him away.
In February, the national Centers for Disease Control and Prevention launched a campaign to raise awareness about the importance of an early autism diagnosis, which can - as happened in James' case - lead to life changing therapies.
Although there is no cure, children identified early often respond to specialized education programs, speech and occupational therapies and even special diets.
"There's still a lot to be known, but the one thing we do know is the earlier and more intensely intervention is begun, the more progress children tend to make," said Catherine Rice, a behavioral scientist with the CDC who calls autism an "urgent public health concern."
"We do know it has an impact, especially when the brain is younger and still developing and more plastic in many ways," Rice said.
Most children with autism, however, aren't diagnosed until at least age 3, although it's possible to identify a child as early as 18 months, Rice said.
Little is known about the cause of autism, a developmental disorder that affects the ability to communicate and interact with others to varying degrees.
"It's still elusive at this point," Rice said. "There's probably not one single cause in that it's a very complicated disorder."
Diagnoses have exploded in recent years, although no one knows why. Some point to better awareness that has led to more diagnoses; others point to genetic factors triggered by something in the environment.
"We used to think that 4 or 5 in 10,000 children had autism spectrum disorders, and now we think it's 2 to 6 children per 1,000," Rice said.
It is the second most common serious developmental disability among children after conditions that cause mental retardation, Rice said.
While parents and physicians chart a child's physical milestones, often the social and communicative deficits are the red flags for autism.
A 1-year-old, for instance, might be in the appropriate weight and height ranges, but if the child isn't pointing out interesting objects or waving "bye-bye," it could signal a problem.
Rice said the hope is to change the "wait-and-see approach" that some physicians have when parents express concerns about their children's development.
Betty Lehman, executive director of the Autism Society of Colorado, said pediatricians are often wary of making premature suggestions that a child may have developmental problems.
She also said many are unaware of the potential benefits of early intervention, for the child and society.
"For every dollar spent in early intervention, you save $6 in special education costs," said Lehman, whose 16-year-old son, Eli, has autism. "This is information that not only all pediatricians should know but all taxpayers should know."
No one disagrees about the potential benefits of early intervention, but Rice cautioned that when it comes to autism, there are no guarantees.
"There really are a range of outcomes," she said.
Some kids progress rapidly when therapy starts - learning words, appropriate behaviors and integrating into regular classrooms. Others do not make much progress.
Mike and Christan Cole of Fountain say son Austin, 5, has changed "100 times" since starting therapies.
A year ago, at age 4, Austin didn't speak and wasn't potty trained.
He now uses the restroom and knows about 150 words. He can make requests, identify colors and point to parts of his body.
About two weeks ago, he said his first sentence: "I want more bubbles, please."
His parents wept.
They attribute most of his progress to a therapist who visits their home four days a week, but Austin also gets speech therapy, attends kindergarten and is on a specialized diet.
"I never would have believed it - that he could make the progress that he did," said Christan Cole, Austin's stepmother and one of his biggest advocates.
Not only is he speaking, but Austin is also happier than ever. Being able to communicate has diminished his frustrations and tantrums - and the family's stress level.
James Ruminski, now 4, has made huge strides.
Nancy Ruminski gives a lot of credit to her pediatrician, who took James' problems seriously and referred the family to a neurologist. Her son began therapies when he was 18 months old.
Today, James is in preschool. He has some motor and speech delays, but his mother wonders if that's because of autism or because he was born prematurely.
"Most people say when they meet James, `I would have never guessed this child is autistic.'"
James can read some words and tell you his favorite color is blue. He's interacting with classmates and getting invited to birthday parties - something a parent of any autistic child will tell you is huge.
He giggles and laughs.
"We've got our boy back," his mother said.
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Various Articles : Vodafone funds charity's Dell-powered directory
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Posted by Sylvia on Friday, April 29, 2005 (17:14:48)
Computer Weekly 01/03/05
By Arif Mohamed
The National Autistic Society and Vodafone launched an online directory last week detailing resources to help people with autism.
The directory runs on Dell Poweredge servers and is funded by Vodafone, which is donating £850,000 over three years.
The National Autistic Society said the Public Autism Resource and Information Service (Paris) is designed to help people with the development disability, including those with Asperger's Syndrome, their families and the people who work with them professionally.
The directory holds information about 4,000 local and national services and resources for professionals working with autistic people. It draws from a UK-wide database of diagnostic services, schools, support groups, training courses, residential and day services and other resources.
The system was developed using two Dell Poweredge 1850 servers - a database and a web server. The National Autistic Society website runs on a further Poweredge 1850 web server and Poweredge 2800 database server, running a Microsoft SQL Server 2000 Database.
The Paris deployment runs on a sister system - an additional three Poweredge 1850 load-balanced web servers, two clustered Poweredge 2850 database servers and a shared disc array to maximise up-time.
It also uses Microsoft ASP .net, developed using Visual Studio 2003, with Paris interfacing with the National Autistic Society website via XML feeds.
Phil Dimmocks, Paris project manager, said the National Autistic Society chose Microsoft .net rather than Java to develop the in-house Paris system in 2002 because it was easier to hire people with Visual Basic and SQL Server skills and .net complemented the society's Microsoft applications.
Vodafone entered into a three-year partnership with the National Autistic Society last March and aims to raise £6m for the charity through text message donations.
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Various Articles : YAI/NIPD 26th Annual International Conference
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Posted by Anonymous on Friday, April 01, 2005 (21:35:50)
YAI/NATIONAL INSTITUTE FOR PEOPLE WITH DISABILITIES NETWORK
ANNOUNCES 26th ANNUAL INTERNATIONAL CONFERENCE ON DEVELOPMENTAL AND LEARNING DISABILITIES: MAY 9-13, 2005
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NEW YORK, N.Y. (Jan. 4, 2005) -- YAI/National Institute for People with Disabilities Network will hold its 26th Annual International Conference “Building Brighter Futures for People with Developmental and Learning Disabilities†on May 9-13, 2005, at the Crowne Plaza Manhattan Hotel, 1605 Broadway, in New York City. A full-day post conference workshop focusing on critical issues in developmental and learning disabilities will be held on Friday, May 13.
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The five-day conference will feature more than 300 prominent speakers from throughout the United States and abroad. More than 150 seminars and workshops will focus on key issues, including:
* Advocacy/Self-Advocacy                         Â
* Psychopharmacology for Non-Medical Staff
* Aging and Dementia                                  Â
* Challenging Behaviors                             Â
* Recreation and Leisure
* Clinical Issues                                           Â
* Residential Services
* Day Services                                            Â
 * Sexuality and Social Skills
* Early Childhood                                        Â
* Special Education
* Employment Training and Placement   Â
 * Staff Training
* Family Support Services                         Â
* Technology
* Health Care                                   Â
* Transitional Services
* Management                                             Â
* Workforce Issues
                                                                                                          Â
A separate social work conference, focusing on research, practices and new developments in the field, also will be held at the Crowne Plaza from May 9-11.
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For more information about either conference or to request a brochure, please call Andrea Lafayette at 212-273-6193 or you can view both brochures and register for the conference at www.yai.org.
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YAI/National Institute for People with Disabilities Network is a family of not-for-profit health and human services agencies serving 20,000 people with developmental and learning disabilities daily in more than 400 community-based programs throughout the New York metropolitan area. YAI/NIPD is recognized nationally for its conferences, training seminars and publications.
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Various Articles : State disabilities program may be expanded
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Posted by sylvia on Wednesday, March 16, 2005 (20:15:11)
Macon Telegraph 11/02/2005
By Don Schanche Jr.
Ossie Mason doesn't want much.
She doesn't want to institutionalize her 24-year-old daughter Keisa, who still plays with dolls, clings to her mother and cannot safely cook by herself.
She doesn't want someone to watch her childlike daughter around the clock, a job that Ossie Mason patiently shoulders even though it means the widowed mother has no time for a life of her own.
All she wants is a place where Keisa, who has autism, can go in the daytime for some supervised activity and instruction in simple life skills.
Since 2003, when Keisa graduated from Northeast High School, Mason has been unable to find a place like that in Macon.
"There's not any programs for Keisa now that she's out of school," Mason said. "I really have to think about Keisa before doing anything. I really don't have a life. I'm not complaining about that. That's just the way the situation is."
But a provision in Gov. Sonny Perdue's proposed budget has created a cautious hope that hundreds of families who face challenges like the Masons may soon get some help.
Perdue recommended adding 925 slots in the "mental retardation waiver program," a Medicaid service administered by the Department of Human Resources. It provides support for families that want to care for a developmentally disabled member at home instead of placing them in an institution.
Nearly 7,200 Georgians are currently on the waiver program. But another 5,400 are on a waiting list for services, and sometimes they wait for years. An estimated 1,500 more people who are currently institutionalized could benefit from community-based services, even though they are not officially on the waiting list.
Under a Supreme Court ruling called the Olmstead Decision, states must provide community-based services for people who have disabilities and don't want to be institutionalized.
Perdue would spend $3.2 million to add the new waiver slots in fiscal 2006, which begins in July. Although some other programs for people with disabilities face cuts this year, the mental retardation waiver is one of a few programs that would see an increase. The proposal is now in the hands of the state Legislature. The 925 new slots would be the biggest increase in four years, according to a DHR spokeswoman.
Guarded optimism
"We are guardedly optimistic," said Dave Blanchard, director of public policy for the Atlanta Alliance for Developmental Disabilities and point man for a lobbying effort called Unlock the Waiting Lists.
"We feel the governor's proposal is a great first step to addressing the waiting list. It didn't happen overnight. So by no means do we expect the governor to erase it overnight. The 925 slots will do a lot of good for families throughout Georgia that are in desperate need."
For the Masons, that need is an everyday thing.
Ossie Mason, who retired from the Air Force in 1990, has been widowed since her husband died of leukemia in 1992. A few of her neighbors in the Lake Wildwood area sometimes help out with Keisa in an emergency, but otherwise Mason spends all day, every day, caring for her daughter.
Autism, which typically appears during the first three years of life, "impacts the normal development of the brain in the areas of social interaction and communication skills," according to the Autism Society of America's Web site. An estimated 1.5 million Americans have some form of autism. It is different from mental retardation, but both conditions are considered a developmental disability.
For Keisa, it means lingering on the edge of conversations, out of step with the flow, interjecting comments that fly off on tangents. She likes to draw - but obsessively draws the same figure of a girl over and over, then colors in her clothing, again and again.
"She'll color that little girl all day," her mother said.
Keisa is polite and helpful. Each day she likes to bring in the mail for a neighbor who was injured in a car accident.
"Keisa's a lovely child," Ossie Mason said. "I'm not looking to institutionalize Keisa. I keep hearing people say that's the only way I would get any help. I'm not trying to do that with her. I'm just looking for some outlet during the day."
A harrowing experience
For Catherine Harrington, living with an autistic relative has been a more harrowing experience.
The 68-year-old south Macon woman said she is at the end of her rope. Her 30-year-old grandson Corey - whom Harrington adopted as her own son - has autism as well as some other mental disabilities. Harrington said he grew hostile after she remarried several years ago. People with autism may not adapt well to change, and some can be aggressive, according to the Autism Society.
Harrington said Corey has hit her at times and threatened her husband. He spent part of January at Central State Hospital before being released. Harrington said state officials placed him with a family in Jones County and later in a Macon group home after he made more threats against her husband. But she said that is a temporary situation.
While she'd prefer to find residential treatment for him, she'd also like to get the kind of services and programs available through the mental retardation waiver program.
"I just need somewhere to place him," she said. But finding that place has been frustrating.
Harrington said she has tried River Edge Behavioral Health Center, the public mental health office in Macon, and even called the governor's office.
She said that after she spent months making calls, a group of state and local mental health officials met with her Thursday, and she now hopes that Corey will finally get help.
"They were looking for funds somewhere," Harrington said. "They are (treating) Corey as a crisis situation."
But she added, "I'm sure I'm not the only one out here that's having these problems. É We don't understand why children are born with these problems. I have cried until I'm about sick."
An underlying worry nags Harrington and Mason: Once the parents are gone, what will happen to their children?
"That's a big concern of mine," Harrington said. "I'm hoping if he can get on this Medicaid waiver, he will adjust to this well enough."
Mason said something similar.
"I just don't know what's going to happen," she said. "(Keisa) has to have somebody to take care of her. É There are many times people don't want to deal with our children."
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