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MISSION STATEMENT: To be a voice that will build and maintain a leadership position in the media for people with disabilities as we promote awareness, educate and inspire.
To build bridges between people with disabilities and people without, as well as entertain and break down the mental and physical barriers and to realize the unique gifts and talents each human being has.
Rolled up in a thick mat, just his head sticking out, Alexander Moshenko can't move his arms or legs. "I'm a hot dog, all nice and tight," he announces.
Though that position would feel confining to most people, Alex isn't like most people. The 6-year-old has Asperger's Syndrome, a form of autism that has been widely identified only in the last 10 years.
The condition is named for Hans Asperger, a Viennese pediatrician who more than 50 years ago identified a pattern of behavior that includes lack of empathy, little ability to form friendships, one-sided conversations, intense absorption in a special interest and clumsy movements.
For Alex the world is so baffling that it's not surprising he does baffling things in response. Try to imagine that your sensory system takes in every sound, every touch, every movement louder and stronger and more insistently.
That means that when Alex puts on a shirt, a clothing tag feels like it's digging into his skin. "I hate clothes," said Alex, who is playing video games in his Amherst apartment and who wants to drive a monster truck when he grows up. "I think I want to destroy them."
Fireworks send the young boy cowering and crying under a table. Even the sweet pleasure of an orange is denied because it tastes over-ripe and mushy. And then, think of what life would be like if you didn't understand social cues. You couldn't interpret the sarcasm, the body language, the tone of voice that come naturally to others. You never knew why your mother was yelling, your teacher was frowning, your classmates were laughing.
"Mom is there something missing in me?" Alex once asked him mother, Monica S. Moshenko.
"He was pushy, in your face," said Moshenko, a single mom who was 39 when Alex was born. "He'd fall to the ground. Or charge at me. Or hug me so hard he'd nearly knock me over."
Since he started getting therapy, Alex has calmed down, but he still makes popping noises, sings in a nonsensical way, doesn't stand still in line. "The things that he does at 6 won't be tolerated when he gets to be 10," his mother said.
What she didn't understand - until last year - was why he did these things. She eliminated a host of possibilities: ear infections (he's had a series of them) and allergies. She tried vitamins and the Feingold diet. And she didn't know what to think when observers said that Alex was "just too sensitive" or that she should discipline him.
It saddened her when he asked her every day if he was a bad boy. "He'd tell me that maybe I'd gotten the wrong son because he'd never get better."
As a toddler, Alex modeled for Fisher-Price and Tyco Toys and he appears on some of their toy boxes. "If you don't look disabled, that sometimes goes against you," said Moshenko. "People think what he's doing is willful."
Because children with Asperger's Syndrome can be relatively high functioning and their deficits are subtle, they often are misdiagnosed as behavioral problems, she said, but that didn't seem like Alex to her. "There were millions of disconnected puzzle pieces that I could never put together," said Moshenko, an administrative assistant for the Great Lakes Program.
When she started hearing suggestions of ADD or ADHD, she got scared, afraid that a Ritalin regimen was the next step and not at all convinced that "popping a pill" would solve any of Alex's problems.
Finally, after Alex was evaluated at Children's Hospital, and she recognized many of his symptoms and behaviors in the book, "The Out of Sync Child" by Carol Kranowitz, she had her answer.
As soon as she read the book, she knew what would later be confirmed by a developmental pediatrician. "I know Asperger's the best," she said. "No one, no doctor, no pediatrician, no psychiatrist knew he had it until last year." It was a relief to have a diagnosis and a challenge to find help.
"I can accept the disabilities. But it's about making sure he gets what he needs," she said. Moshenko, who has 20-year-old twins from her first marriage, knew nothing about this condition at first, but she has learned quickly.
She has books and stacks of printed material, some taken off the Internet, as well as reams of material on special education. In her research she didn't find many suggestions for parents, she said, but recently, a London publisher asked her to write an advice book and she's creating a Web site for parents of special education children.
"It's like walking through a new forest," she said. "But I couldn't rest until I knew the answers."
One thing she always does is to take a large photograph of Alex to meetings about Alex. "What do parents do when they are coming through the ranks and you have to trust 15 strangers with the life of your child? "This helps people focus on the fact that we're not talking about a piece of paper here," she said. "This is real life and it's mine."
Last year Alex was in a small special needs classroom with five other children, but now he's finishing the year in a regular first grade at Maple West Elementary School. Here he receives language and other therapy and also has a full-time aide who helps by cueing him about what's going on around him and how he should respond.
Four months ago, Moshenko hired ABC Therapeutics, a pediatric occupational therapy service run by Christopher J. and Caroline Alterio, to work with Alex two or three times a week to bolster the services he's getting in school.
They are the ones who roll him up hot-dog-like or sit him in a box of shredded paper to give him the tactile stimulation his body craves. It's to help him get a better sense of body awareness, to learn where his body begins and ends, to improve his coordination and balance.
"He's a kid who was crashing through life," said Christopher Alterio. "He's starting to understand his own boundaries and personal space a bit better." Which means this: Alex can walk over to his mother and give her a loving hug that doesn't almost knock her over. He can shake hands politely with a stranger and call out, unbidden: "I like you, News lady."
Moshenko says of Alex: "He's done so much for me. He keeps me grounded about what's important. "If I look at too many years, I can't do it," she said. "But, now, I can deal with tomorrow." http://www.mugsy.org/alex.htm
Moshenko works to change stereotype --
Autistic son inspiration for UB staffer's efforts to increase awareness of
disability
By DONNA LONGENECKER
Reporter Assistant Editor
Dustin Hoffman's performance in the movie "Rain Man" is the image that comes instantly comes to mind when most people think of autism, says Monica Moshenko. And she's determined to change that.
Nine-year-old Alex is the motivation for Monica Moshenko, an administrative assistant with the Great Lakes Program, in her efforts to help parents of children with autism.
Moshenko, administrative assistant for UB's Great Lakes Program, wants to destroy stereotypical views of people with autism and replace them with a multi-faceted awareness of the spectrum of disorders classified as pervasive developmental disorders (PDD). More than 500,000 people in the U.S. are estimated to have some form of autism, including Moshenko's 9-year-old son, Alex, who has Asperger's syndrome.
Four out of five children diagnosed with autism are boys and those diagnosed with the condition often exhibit common traits that vary only in the severity of their impairment of the ability to communicate and socialize. There is no cure for autism and no known biological markers for the disease.
"Autism is the third leading developmental disability in the country," says Moshenko, "but it only receives 5 percent of the total funding awarded for research."
Her commitment to finding a cure for autism includes organizing a 5K walkathon, to take place at 1 p.m. Sept. 29 in Delaware Park, to raise money for the National Alliance for Autism Research (NAAR). The organization is the largest non-governmental supporter of autism research in the U.S., committing $10 million in the past six years alone to more than 117 autism research projects and fellowships around the world. For more information about the walk or to register, contact www.autismwalk.org or call 522-9185.
Honorary chairmen for the event, which will take place regardless of the weather, are boxer Baby Joe Mesi and Assemblyman Sam Hoyt.
Moshenko has garnered support for the event from members of the entertainment world as well, including actor Jim Carey, who will film a movie in Western New York this fall, and Buffalo native Tom Fontana, award-winning writer/producer of such hit shows as "St. Elsewhere," "Homicide: Life on the Street" and "Oz."
In addition to her work on the walkathon and her duties at the Great Lakes Program, Moshenko last year organized a highly successful conference that attracted nationally recognized experts on autism. About 1,000 people attended the conference, which was co-sponsored by the UB Department of Counseling, School and Educational Psychology.
Moshenko's inspiration — and the motivation for her near single-minded focus in doing everything she can to educate parents of children with autism—is her son, Alex.
"Alex is very high functioning. He's been able to override a lot of the challenges — challenges that are often lifelong — due to really good services and support that I've really pushed for inside the school setting, as well as outside," says Moshenko.
In fact, Alex just finished five weeks of speech therapy at the UB Speech and Hearing Clinic, part of the Department of Communicative Disorders and Sciences in the College of Arts and Sciences.
"I would say it (the UB clinic) is one of the best in the country, with excellent evaluations and staff," says Moshenko.
Alex reads well above grade level, she says, and for someone so young, he appears to choose his words carefully.
In fact, while he is very articulate, conversation is work for Alex, his mother says. He works at making eye contact—something many children with autism have difficulty doing—and works at remembering what it is, exactly, he wants to say.
Yet, it's important to remember, Moshenko adds, that a brief encounter with
Alex doesn't give a true depiction of what is at stake for most children
who have autism but have yet to be diagnosed. They often are ostracized by
their peers and segregated from their classmates. Alex, in fact, was placed
in the most restrictive classroom environment, which is the worst environment
for someone with autism, says Moshenko, until he
finally was diagnosed with Asperger's syndrome and began intensive therapy.
Misunderstandings abound as to what really is going on in young children who begin to exhibit symptoms of an autistic disorder. Mental illness, mental retardation, labeling a child as a "problem child," and bad parenting have all been attributed to those who have the condition.
"Children with autism are often misdiagnosed as having attention deficit disorder because people don't know the specifics of what to look for," Moshenko says. "There aren't enough trained developmental pediatricians, psychologists and psychiatrists—people who have the expertise to know what differentiates different forms of PDD," she says.
The services Moshenko has often single-handedly sought out for Alex have been intense and extensive, including occupational, behavioral and sensory awareness therapy, and many visits to a physician in Rochester specializing in autism.
Just getting a diagnosis of autism was a circuitous journey for Moshenko and her son due to misunderstandings of Alex's behavior by school personnel and trying to find the right doctor who recognized the symptoms.
"Even though I was searching for answers for three years, there were people put in my path for the right reasons at the right time and I didn't give up the quest of looking—I didn't accept the status quo diagnosis from teachers and other people in that field," she says.
While UB is a sponsor of the walkathon, Moshenko hopes one day that the university's medical researchers will take an interest in autism.
"We've got a great medical school; we've got everything here to do autism research," she adds.
View this article online at: http://www.buffalo.edu/reporter/vol34/vol34n2/articles/Moshenko.html
2005 Accomplishments:
• 2005 Achievement Award for Public Awareness by the New York State Development
Disabilities Planning Council
• 2005 EP Maxwell J. Schliefer Distinguished Service Award by EP
Global Communications “Exceptional Parent” Magazine August 24,
2005 at Dunn Tire Park- Buffalo, NY
• Emceed the third annual "Arts Work " hosted by ASI on November
11, 2005. It was a cocktail reception and silent auction to benefit our art,
music and dance programs.
2004 Accomplishments:
• Host, "Disability News & Views" Radio Show - Live radio
talk show on disabilities (educational, inspirational and entertaining) Sunday's
5-6PM on WXRL Radio 1300 AM, reaching thousands of listeners from Pennsylvania,
Western New York and Toronto, Canada and online www.disabilitynewsradio.com.
• Facilitated one-day conference "Autism/Aspergers 2004" featuring
Dr. Tony Attwood, with Future Horizons, Inc. at Adams Mark Buffalo Niagara Hotel
(October 2004)
2003 Accomplishments:
• Top ten finalist for the "NFL Community Quarterback Award"
by the Buffalo Bills
• Appointed Public Member to Speech Language Board, NYS Office of Professions,
five year term.
• Co-Chair, Second Walk for Autism, September 14, 2003 "Buffalo-Niagara
Walk F.A.R. for NAAR" - over 2100 people attended raising $90K for autism
research for NAAR. Honorary Co-Chair, Linda Pellegrino and Dan Marino.
• Facilitated one-day conference "Autism 2003", Buffalo, New
York at Buffalo Convention Center, with Future Horizons, Inc., Arlington,
Texas - over 450 attendees.
2002 Accomplishments:
• Graduate, NYS Partners in Policymaking Group.
• Co-Chair, Inaugural Walk for Autism, September 29, 2002 "Buffalo
Walk F.A.R. for NAAR" - over 3,000 people attended raising $100,000 autism
research for National Alliance for Autism Research (NAAR). Honorary Co-Chairs
were "Baby" Joe Mesi and Dan Marino.
2001 Accomplishments:
• Facilitated two-day "Autism 2001" conference held at Buffalo
Convention Center, with Future Horizons, Inc. - over 1,000 attendees.
• Appointed Buffalo Ambassador, City of Buffalo.
• Parent Representative, Williamsville Central School District, Williamsville,
New York
• Parent Member Training, Williamsville CSE Training, January 26, 2001,
Daemen College.
• Successfully completed "Conflict Management and Mediation Training"
and "Custody/Visitation Mediation Training" by The Dispute Settlement
Center of Buffalo, New York.
• Awarded "Certificate of Appreciation" on July 2 by the Town
Board of Amherst, New York for recognition by the Greater Buffalo Convention
& Visitor's Bureau as a "Buffalo Ambassador" for facilitating
the "Autism 2001 Conference"
• Parent Member, SEPTSA (Special Education Parent Teacher Association)
Williamsville, NY.
• Educational Advocacy Training, Batavia, NY.
1999- 2001 Accomplishments:
• Individual advocacy, training to parents in WNY and across the country
through Power Advocates.
• Certified, Parent Advocacy Training, July 1999, UB Law School and
Erie 1 Boces, SETRC.
2004 TV and Radio Shows:
• LCTV-20 (Lockport Community TV) appeared on "Self Advocacy in
Action" - Radio Show/Advocacy.
• Adelphia Cable TV "Crossroads" - Radio Show/Advocacy.
• WKBW-TV "WNY Live" - Advocacy/Autism.
2003 TV and Radio Shows:
• WKBW-TV "AM Buffalo" - Autism awareness
• WKBW-TV "WNY Live" - Autism awareness
• Adelphia's "Crossroads" - Autism/advocacy
2002 TV and Radio Shows:
• WKBW - TV "AM Buffalo" and "WNY Live" - Autism/advocacy.
• Family Life Network -103.1 FM Radio with host Ted Miraglia - Autism/advocacy.
• WDCX Radio - 99.5 FM Radio with Dave McCleary - Autism/advocacy.
• Star 102.5 (Entercom) - live interview with Sue ONeil - Autism walk.
• WIVB-TV "By the People" hosted by Doug Smith with Assemblyman
Sam Hoyt and Alex - Autism/advocacy walk.
• Adelphia's "Crossroads" hosted by Sharon Hanson - Autism
walk.
2001 TV and Radio Shows:
• WKBW-TV "AM Buffalo" - Advocacy and Autism.
• WBEN Radio 930 AM - three-hour live radio show on Special Education
with host Clip Smith (appeared with guests Reed Martin, JD and Gary Mayerson,
JD).
The "Disability News and Views" radio show is a subsidiary of Power Advocates(opens in new window), and was founded by Monica Moshenko.
You can write to power advocates at:
Power Advocates
P.O. Box 1077
Williamsville, NY
14231-1077
716-522-9185
Or send and e-mail to: Monica Moshenko.
"To accomplish great things, we must not only act, but also dream; not
only plan, but also believe."
-Anatole France
Note: If you can NOT hear the show "live" then you may contact your local talk radio stations and ask for the show to be syndicated!
Sponsors:
•Lamar Advertising (opens in new window)- Baton Rouge, LA (800)235-2627
•Autistic
Services(opens in new window)- Williamsville, New York (716)631-5777
•People Inc. (opens
in new window)- Williamsville, New York 1-888-7PEOPLE
•Vanguard ADA
Systems of America (opens in new window)- Snohomish, WA (360)668-5700
•Tom Fontana Emmy Award Winning Writer and
Executive Producer on TV
For information on Sponsorship Opportunities call: (716) 514-8879.
To make on air comments call: (716) 514-8879. Host Monica Moshenko, Wednesdays 7pm ET and Sundays 9pm.
Contact Us:
Power Advocates • P.O. Box 1077 • Williamsville, NY 14231-1077
•(716) 514-8879 • monica@poweradvocates.org