News

Interactive Autism Network Launches Survey for Grandparents

2009-10-20T13:18:00.000-04:00

Date First Published: October 5, 2009

Take the Grandparents of Children with Autism Spectrum Disorders Survey.
http://www.iancommunity.org/cs/ian_research/grandparent_surveyThe Interactive Autism Network (IAN) -- the nation's largest online autism research project -- is pleased to announce the launch of the Grandparents of Children with Autism Spectrum Disorders Survey.
Grandparents of children with autism spectrum disorders (ASDs) have been contacting the IAN team to say how much they would like to participate in autism research since the IAN Project began in April, 2007. "We know so much about these children," they have told us. "Shouldn’t researchers know what we know?"

The IAN research team came to realize that little is known about the extent of grandparents' participation in supporting families of children with ASD, or about the impact that having a grandchild with an ASD has on the grandparents themselves. With the kind assistance of Bonnie Gillman, Director of the Grandparent Autism Network, the IAN team developed a pilot grandparent survey. Forty volunteer grandparents tested this, submitting insightful feedback that permitted us to make improvements. The survey, which addresses many aspects of having a grandchild on the spectrum and asks grandparents to share their experiences, is now ready!
We invite grandparents residing in the United States and its territories to complete this anonymous internet survey. Grandparents can have a biological, adoptive, or step-relationship with their grandchild on the autism spectrum, and the grandchild can be of any age. The grandchild's family does not have to be participating in the IAN Research project in order for the grandparent to take the survey.

We would appreciate it very much if our readers would spread the word about the Grandparents of Children with Autism Spectrum Disorder Survey to everyone they know in the autism community. It is our hope that the results of this survey will help researchers, policymakers, and advocates learn about the role grandparents play in the lives of children with ASD, and about how grandparents experience the joys and challenges of helping raise a child on the autism spectrum.

If you have any questions, please contact IAN at ian@ianproject.org or phone toll-free at 1-866-348-3440. Learn More About the IAN Project. (www.iancommunity.org)

Self-Advocacy for Teens with Special Needs, Free Seminar

2009-10-15T13:21:00.002-04:00

Please be sure to mark your calendars!

October 22 Self Advocacy for Teens with Special Needs Presented by: Valerie Gaus, PhD

Self-advocacy is an extremely important tool that students/adults with learning disabilities must have to ensure continued success when going off to college, entering the workforce, etc. Dr. Gaus' presentation will allow parents to help their children develop the necessary skills for communication, self-advocacy, autonomy, and the ability to access needed services and support.

Teens with learning differences grow up to be adults with learning differences. Once students know how they learn, they are then able to facilitate their own learning and advocate for themselves. Research supports the fact that less than 10% of students with special needs who go on to college, remain in college after the first year. Those who have the strongest self-advocacy skills are among that 10% who are most successful. Dr. Gaus' presentation provides tangible ways for parents to help their children become strong self advocates.

* Dr. Gaus has been a practicing cognitive-behavioral therapist serving adults and adolescents with dual diagnosis (intellectual disability with co-morbid psychiatric disorder), autism spectrum disorders, mood disorders, and anxiety disorders since she received her doctorate in clinical psychology from Stony Brook University in 1992. Dr. Gaus is on the advisory board of the Asperger Syndrome and High Functioning Autism Association, the grant review committee of the Organization for Autism Research, and an adjunct faculty at Long Island University/C.W. Post. She was also a founding board member of the New York Metro chapter of the National Association for the Dually Diagnosed. Dr. Gaus has written numerous articles and book chapters on mental health issues in developmental disabilities and has lectured extensively on these topics across the United States and abroad. Dr. Gaus has been applauded on the release of her book Cognitive-Behavioral Therapy for Adult Asperger Syndrome.

These informative free seminars are intended for all those interested in hearing about topics related to developmental disabilities. Each of these presentations will feature a different expert providing valuable tips and information on a wide array of topics pertaining to the field of autism and developmental disabilities. All of these seminars will be held from 7-9 p.m. in the Lecture Hall at DDI's Hollywood Drive Campus, 99 Hollywood Drive, Smithtown, NY. Space is limited for free lectures; anyone interested should call 631-366-5875 to register.

If you are interested in attending, please RSVP to Michael Romas at 631-366-5875 or via e-mail to mromas@ddiinfo.org Developmental Disabilities Institute 99 Hollywood Drive Smithtown, NY 11787 631-366-2900 From Eastern Long Island: LIE to Exit 55, make right on Motor Parkway. Continue about 200 ft and bare right onto Old Willets Path. Continue on Old Willets Path for approximately 2 miles, then cross over Jericho Turnpike. Old Willets Path now changes to Plymouth Blvd. Go to the first stop sign and make a left onto Parnell Drive. Make the next left onto Hollywood Drive. The campus is at the end of the block. From Western Long Island: LIE to Exit 55, make left onto Motor Parkway. Go over LIE bridge and proceed about 200 ft and bare right onto Old Willets Path. Follow directions above. *Presentation in DDI's Public Education (Lecture) Series does not in and of itself constitute or imply DDI's recommendation or endorsement. DDI's Public Education Series is intended only to provide the public with presentations related to the larger issue of Developmental Disability that are thought provoking , interesting and timely

Op-Ed: Fight to overcome autism gets major boost, higher priority

2009-10-13T13:08:00.001-04:00

Mon Oct 5, 2:29 am ET
By Health and Human Services Secretary Kathleen Sebelius

Washington, DC — Last Wednesday, President Obama visited the National Institutes of Health (NIH) to announce the single biggest investment in biomedical research in American history. Among the $5 billion in grants he announced are new explorations of longtime research targets from cancer to heart disease. But the grants also include the largest-ever investment in an Obama administration priority that has so far gone mostly unnoticed: autism research.President Obama has made autism a focus from the first days of his presidency. Less than a week after he was sworn in, my department’s Interagency Autism Coordinating Committee released its first-ever strategic plan for government autism research. And President Obama has backed this plan by adding $1 billion to his budget for autism over the next eight years. Altogether, the federal government will provide nearly twice as much funding for autism research in the upcoming fiscal year as we had just three years ago.We needed a new focus and new resources because autism has emerged as an urgent public health challenge. As recently as the 1990s, scientists thought autism was a rare disorder that affected 1 in every 2000 kids. Earlier this decade, we revised that estimate to say that 1 in every 150 kids was somewhere on the autism spectrum. Our most recent data suggest that autism may be even more common than that. Almost every American I talk to about this issue knows at least one family that is affected by autism. Autism has created new challenges for families, schools, and health care providers. When parents discover that their child has autism today, they’re left with a lot of questions, but few answers. What causes autism? How can it be prevented? Which treatments can help? Where can I get needed services? These questions aren’t new. And the government has tried to address them in the past, most notably with the Combating Autism Act, which passed in 2006. But there has never been a comprehensive, well-funded effort across government to overcome autism – until now.As Secretary of Health and Human Services, I oversee many of the agencies that are participating in this effort. At the NIH, new research funds are being used to address every aspect of autism from testing innovative treatments to exploring the unique needs of the growing number of adults with autism to searching for the genes underlying the disorder. At the Health Resources and Services Administration, they’re helping train health professionals to recognize autism early when we know treatments can be more effective. They’ve also created two national autism research networks that will allow researchers to gather data from different sites in order to identify the most promising treatments for autism. These networks will also create channels for these best practices to flow back to parents and providers around the country, so that Americans can have the latest evidence on which treatments work and which don’t.The Center for Medicare & Medicaid Services is working with states to provide targeted case management that helps kids with autism get the support they need at home and at school. And for the first time ever, they’re supporting medical home models that can help children with autism get the kind of coordinated, family-centered care that helps them thrive.President Obama is also taking steps to make sure health insurance reform will address the needs of families with autism. Under the plan he has proposed, private insurance companies would no longer be able to deny you coverage just because you or someone in your family has a condition like autism. And in order to participate in new health insurance exchanges, insurance companies will have to agree to offer mental health services that help families with autism on par with other benefits.Like public health challenges such as polio in the 1950s and HIV/AIDS in the 1980s, we must address the rising prevalence and complex needs of people with autism. We still have more questions than answers. But with additional funding and a new coordinated national strategy, we are working harder and more closely together to find those answers than ever before.
Kathleen Sebelius is the Secretary of Health and Human Services in President Barack Obama's Cabinet. She was the Democratic governor of the state of Kansas from 2003 to 2009.

Kulanu Workshop - Understanding the Pediatrician’s Role with Children with Special Needs

2009-10-01T15:18:00.000-04:00

Wednesday workshops

o Do you suspect your child has special needs?
o If your child does have special needs, is your doctor helpful?
o How can you advocate with medical professionals?

Understanding the Pediatrician’s Role with Children with Special Needs

Jack Levine, M.D.

Wednesday, October 21, 2009
7:30 p.m. to 9:00 p.m.
Kulanu Center for Special Services
620 Central Avenue
Cedarhurst, New York

Free of charge with Kulanu family membership. $5.00 for nonmembers.

Dr. Levine will speak about how parents of children with special needs can effectively partner and advocate for their child with their pediatrician and other health professionals. Dr. Levine will also speak about health conditions common to children with autism and what families can do to address these health concerns. Dr. Levine is a developmental pediatrician with a private practice in Queens and Nassau. He is the Medical Director of the Henry Viscardi School in Albertson, Chair of the American Academy of Pediatrics section on children with special needs and an active member of Nassau County Executive Tom Suozzi’s Task Force on Autism.

Pre-registration is requested by contacting Mark Hoffacker at (516) 569-3083 x136 or mark@kulanukids.org.

Next workshop – Wednesday, November 11, 2009
Parent Advocacy : How to tell your story effectively
Maggie Hoffman, Project DOCC (Delivery of Chronic Care)

P.A.R.C. is a division of Kulanu

Sunday, Oct. 18 workshops exploring post-secondary opportunities for young adults with learning differences

2009-10-01T13:45:00.000-04:00

Please join us!
Get Ready, Get Set, GO!
Sunday, Oct. 18, 9am - 1pm

Hillwood CommonsC.W. Post Campus Long Island University in BrookvilleGet Ready, Get Set, Go is the Compass Project's half-day series of workshops exploring post-secondary opportunities for young adults with learning differences.

Co-sponsored by The Center for Learning Differences, the program includes presentations by faculty from universities, colleges, and technical schools. FREE for students, $40 per parent or professional ($60 for two parents). Click here to download the brochure and registration form.
JCCA's Compass Project serves the special needs of high school and college-aged teens, ranging from youth with learning disabilities to youth on the autism spectrum. Compass provides counseling, educational direction, and social support to young people making the transition to an independent future.

Let All The Children Play - Ground Breaking

2009-09-30T16:31:00.001-04:00

Dear Friends,

Shouldn’t Playgrounds Be For Everyone?
We have great news about our Universally Accessible playground
project being built at Nassau County’s Eisenhower Park!

We cordially invite you to join us at our official groundbreaking on
October 9, 2009 at Eisenhower Park, East Meadow, NY at 10:30 am.
(adjacent to parking lot #4)

Warmly,

David Weingarten

Important Survey

2009-09-30T13:12:00.000-04:00

The New York State Interagency Task Force on Autism is seeking input on the needs of individuals with autism spectrum disorders (ASD) and their families. As a member of the Task Force, the New York State Office of Mental Retardation and Developmental Disabilities encourages individuals with ASD, parents, other family members, non-profit providers, professionals, advocates, and other interested parties to complete the survey. This brief online survey seeks your opinions regarding which services are most important for meeting the needs of individuals with ASD and their families and which activities related to autism New York State should make a priority.

You may access the survey at

https://app.expressemailmarketing.com/takesurvey.aspx?id=16666

The due date for surveys is October 9, 2009.

An open letter to the Jewish community from a 16-year-old who has Aspergers.

2009-09-21T13:17:00.000-04:00

An open letter to the Jewish community from a 16-year-old who has Aspergers.
by Nathan Weissler

I am a 16-year-old with Asperger Syndrome (AS), a complex of autistic spectrum disorders living in Chevy Chase, Maryland in the United States. The most rewarding aspect of having AS is the strong sense of morality and honesty that is part of the deal, so to speak. However, on the negative side, the most frustrating aspect is the sense of social isolation that comes along with it. The community has supported me a great deal. However, there is a lot more that must and can be done.

For instance, the community should overall be more trusting of those with disabilities. For instance, it is wrong to assume that someone on the autism spectrum (or with any disability) cannot do anything simply because of the way God made them. Delving a bit more “beneath the iceberg” it is wrong to let buried prejudices and biases lead you to the conclusion that a Special Needs individual is incapable simply because he\she has Special Needs. In other words, the concept of b’tzelem elokhim (“All people are created in the image of God”), which is central to Jewish thought, is a vital outlet for Special Needs individuals.

This is the biggest mistake people have made in treating me and many others like me. Everyone can improve on this point: parents, teachers, even other kids.

On the positive side, however, many different people have made me feel trusted. For instance, my parents permit me to take long-distance train and bus trips alone to visit family. At my shul I have been permitted me to teach classes; give Divrei Torah etc.

Finally, three changes within the community I would like to see include:

1. Making a greater effort to include kids\ teens with Special Needs whenever possible.
2. Never assume that kids\teens can’t participate in a certain activity simply because they have Special Needs. If you are truly concerned about their ability to handle a certain situation, talk to them privately so as not to embarrass them.
3. Lastly and most importantly -- take kids\teens with AS and other Special Needs seriously. Listen to them. This will go a long way towards improving things for everyone!
Of course, it is not really so simple that these changes alone will improve everything for Special Needs individuals. But this is an extraordinary start! We must take these and similar approaches in improving life for Special Needs individuals and in our long-term struggle for B’tzelem Elokhim and Tikkun Olam (Repairing the World).

Published: Monday, September 21, 2009

KULANU CATCHES A WAVE WITH SURFER'S HEALING

2009-09-16T16:36:00.003-04:00

On Wednesday, September 16th, children and teens with special needs from Kulanu’s recreational program traveled to Long Beach for a unique and exhilarating experience with Surfer’s Healing. Surfer’s Healing enriches the lives of children with Autism Spectrum Disorder (ASD) and their families by exposing them to the unique experience of surfing. Surfer’s Healing turns the ocean surf into apositive and therapeutic activity for these children. In our work with children with special needs, Kulanu joins with many new and innovative programs to provide activities that are inclusive, social, and fun for children and their families. For more information about this and other Kulanu programs, contact Leiby Brill at 516 569-6664 ext.138.

The Long Island Family Support Consumer Council presents Seventeenth Annual Legislative Breakfast

2009-09-13T12:59:00.001-04:00

The Long Island Family Support Consumer Council
in collaboration with
The Long Island Developmental Disabilities Service Office
presents its

Seventeenth Annual Legislative Breakfast
Friday, October 30, 2009
Hard Times – Hard Choices

Featured Speakers
Assemblyman James D. Conte
New York State 10th Assembly District

Diana Jones Ritter
Commissioner, Office of Mental Retardation and Developmental Disabilities

Sign in and networking - 8:30 am. Program begins - 9:30 am.
Long Island Hilton Hotel, 598 Broadhollow Rd (Route 110), Melville, NY

The Legislative Breakfast provides an opportunity to inform legislators about the needs and accomplishments of our family members with a disability.

Consumers, parents and other family members of people with developmental disabilities
are invited without charge.
PRE-REGISTRATION is required and must be received no later than 10/19/09.
You may register online at www.lifscc.com or e-mail the first and last name of all
attending to lifscc@yahoo.com or mail completed form to the address below.
If you have any questions regarding registration, call LIFSCC at 631 434-6073.

-----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------Consumers, Parents Family & Members Registration Form.
17th Annual Legislative Breakfast, Friday, October 30, 2009
Names
1.
2.
3.
4.
5.

Mail to: LIFSCC c/o Cathy Aziz, 2475 Lefferts Place, Bellmore, NY 11710

Adult Transition Program...accepting applicants!

2009-09-10T15:15:00.000-04:00

New York and Connecticut residents, please note this special opportunity to have access to the Stamford Campus of the University of Connecticut.Contact: Dr. Sue IzemanAdmissions/Informationchapelhaven@abilis.us(203) 629-1880, ext. 304NEW TRANSITION PROGRAM TAKES YOUNG ADULTS FROM HIGH SCHOOL TO REAL WORLDChapel Haven Abilis , a transition to independent living day program for young adults with autism and related disorders, is scheduled to open in January 2010 on the UConn/Stamford campus. The program is a collaboration between Abilis, lower Fairfield County's nonprofit service provider for children and adults with developmental disabilities, and Chapel Haven of New Haven, a nationally recognized provider of transition programs. Both agencies are well respected for providing high-quality services for children and adults in Connecticut. Program Overview Chapel Haven Abilis will serve young adults age 18 to 24 who are on the Autism Spectrum or have a related disorder. This unique initiative unites the strengths and experience of each agency to help students on the Autism Spectrum and with related disorders reach their highest level of independence and optimize opportunities for employment. The Chapel Haven Abilis program is built around a social-communicative core. The program will focus on education, career exploration, independent living skills, community access and recreation. The University of Connecticut campus in downtown Stamford will be the main site for the program, with access to classrooms, media center, fitness center, café and other areas. Community-based experiences will be an integral part of the program. The campus is within walking distance of a variety of community options, such as the Ferguson Library, large retail outlets, movie theaters, restaurants and recreational facilities. Chapel Haven Abilis will be a year-round, five-day program but can be tailored to meet individual needs. Abilis may be a resource for families needing assistance with residential options. The curriculum is built around a two-year time frame, with an optional third year as needed to enhance independence for each student. Using the Chapel Haven curriculum, the first year emphasizes functional academics, vocational skills and community independence. The second year provides opportunities for the student to increase his or her independence and to begin application of vocational skills in real-world work environments. Admission to Chapel Haven Abilis begins with a phone call to Dr. Susan Izeman, director of the Abilis Autism Program. After the initial contact, application materials will be sent to the student and family. Dr. Izeman and Chapel Haven's VP of Admissions will review intake materials, including current IEPs, psychological and educational evaluations, functional adaptive assessments and vocational assessments. Next, prospective students and their parents will be invited for an interview and campus tour. Admission is based on the applicant's skills and interest to participate in the program. Chapel Haven Abilis will successfully serve young adults with:· A diagnosis of Autism, ASD, PDD or a related language or social disability;· Intellectual functioning in the mild to low average range;· No serious behavioral or mental health concerns;· An ability to work in small- to medium-sized groups with minimal assistance; and · A motivation for increased independence. For more information about Chapel Haven Abilis or to begin the application process, please contact: Susan Izeman, PhD, BCBA, Director, Chapel Haven Abilis Phone: 203-629-1880, x304Email: chapelhaven@abilis.us About Chapel Haven: Based in New Haven, Conn., Chapel Haven, Inc. has been a leader in transition programming since 1972. Chapel Haven has maintained a strong local and national reputation for successfully teaching adults with cognitive disabilities to live independently in the community. Chapel Haven has strategically aligned itself with internationally recognized experts in the field of Autism Spectrum Disorders, creating a unique curriculum specifically to meet the needs of this population. About Abilis: Since 1951, Abilis has set the standard in Fairfield County for person-centered, community-based supports and services for individuals with developmental disabilities. Abilis has developed strong relationships with area school districts, community agencies and families throughout Fairfield County. In 2000, Abilis created the Abilis Autism Program in response to increasing needs of children and teens on the Autism Spectrum and their families.

Growing Up With Undiagnosed Asperger’s

2009-09-08T15:14:00.000-04:00

PARALLEL PLAY

Growing Up With Undiagnosed Asperger’s
By Tim Page
Illustrated. 197 pages. Doubleday. $26.
Related

‘Parallel Play’ (September 3, 2009)
The first prediction came true, and then some: Mr. Page won a Pulitzer Prize for his music criticism at The Washington Post (he was also a critic at The New York Times). He has written such a superbly incisive biography of the once-forgotten novelist Dawn Powell that she is now well remembered, and edited volumes of Powell’s diaries and letters. Now, in his mid-50s, he has written an improbably lovely memoir about the loneliness that has made him feel throughout his life that he is “not quite a mammal.”
“In the years since the phrase became a cliché, I have received any number of compliments for my supposed ability to ‘think outside the box,’ ” Mr. Page writes in “Parallel Play” (an expanded version of material published in The New Yorker). But for him thinking inside the box is at best a mechanical exercise based on mimicry; at worst it’s an impossibility.
In fascinatingly precise detail and often to pricelessly funny effect, he describes ways in which his efforts to feign normalcy have backfired. Recalling an adolescent clinch with a young woman who asked if he’d still care about her the next day, he says he pondered the question, then told her truthfully that he had no idea. “Wrong answer,” he wryly recalls.
When he was 45, Mr. Page learned that he had the autistic disorder called Asperger’s syndrome. He was relieved to know that his condition was quantifiable and that others share the same general symptoms. But he was also much too smart and self-aware to feel true kinship with other Aspies, as he calls them.
“We are not always natural companions,” he writes. “If, say, you introduce an Aspie devotee of antique piano recordings to one whose passion is vacuum cleaners, chances are that the meeting will result in two uncomprehending and increasingly agitated monologues.”
As for his own social skills, he has been married twice and is the father of three sons. Yet he still writes that “it would be easier for me to improvise an epic poem before a sellout crowd at Madison Square Garden than to approach an attractive stranger across the room and strike up a conversation.” About his professional abilities, he acknowledges that he was lucky to find work like teaching and writing music criticism. He would have fared horribly with a job in sales.
Mr. Page’s devotion to music first manifested itself when he was very young. He named a stuffed animal after the tenor and film actor Mario Lanza. (Among this book’s many pleasures are Mr. Page’s wildly eclectic tastes and his fondness for the endearingly second rate.)
He loved records. When given an elementary school assignment to “write about something we had at home,” he reeled off from memory the precise selections, composers, singers and dates of each band on an opera anthology ranging from 1909 to 1932. He also loved relics of bygone time, ingested horehound drops as snack food and was using the world “talkie” about movies in 1965.
Among Mr. Page’s extremely colorful examples of his obsessive, controlling boyhood behavior is his having gotten hold of — and then re-edited, following a scene-by-scene description of the original from a library book — an eight-millimeter print of the 12-minute silent film “The Great Train Robbery” because he knew that a distributor had tampered with the original. And there’s more: in 1967 he was directing his own films and became the subject of a prizewinning documentary called “A Day With Timmy Page.” Mr. Page’s wing-nut film fanaticism led him to discover Bob Dylan’s “Bringing It All Back Home” not for the obvious reasons but because Louella Parsons’s biography of Jean Harlow appears amid the coffee-table clutter on the album’s cover.
With seemingly effortless grace this book moves back and forth between Mr. Page’s very private idiosyncrasies and those of the wider culture in which he came of age. The fear and rigid conventionality of the 1950s were relatively easy for him. The ’60s took more effort, but he worked hard to adapt. He was sufficiently well assimilated to go with the flow, grow long hair and get a job in a record store, “where I became the very model of the snide know-it-all counterperson we have all met and loathed.”
“Parallel Play” is illustrated by a series of expertly chosen photos of the author that amount to a kind of time-lapse photography: from a little boy making an open-mouthed goldfish grimace (“Try as I might, I couldn’t remember how to smile”) to a beret-wearing, contented-looking, broadly smiling professor. He is on a park bench in Baltimore. Thanks to the candid, companionable voice of his memoir, the implied invitation to sit down and discuss, oh, maybe the later Beach Boys records (which he marvelously describes as “vaporous, ethereal, elaborately ornamented musical clockworks, distinguished by a blossoming tenderness and sheer sonic splendor”) is all but irresistible.
But there is also a strain of mournfulness running through this book. It’s not about Asperger’s, but it is intensified by the peculiar nature of Mr. Page’s Asperger-governed perceptions. Tirelessly logical, sometimes agonizingly so, he lives life in an extra dimension, with a sense of time that irrevocably links past and present, living and dead, ardent love affairs and broken ones.
The people who left him — and it seems to have happened a lot — are still with him. The schoolmate who died in his teens has become, in Mr. Page’s imagination, his aging contemporary. The music heard at a long-ago party is still playing. And the hardest job of Mr. Page’s life, as “Parallel Play” conveys even in its brightest moments, has been to struggle for a way to make peace with it all.
http://www.nytimes.com/2009/09/03/books/03maslin.html?_r=1&scp=1&sq=parelell%20play%20book%20review&st=cse

Kulanu's camp within a camp and Camp Outlook 2009

2009-08-25T15:58:00.002-04:00

Kulanu’s eight weeks of summer camp will come to a close this week on August 25th Thirty children with special needs were served by Kulanu’s unique camp experience known as a “camp within a camp”. Kulanu shares facilities and activities with Camp Hillel at the Hebrew Academy of the Five Towns and Rockaway. Several Kulanu campers were “mainstreamed” into Camp Hillel being supported by a trained shadow.

This year’s camp added a new group for older campers, dubbed Camp Outlook. Campers were afforded a variety of challenging activities to help with team building and socialization. Kayaking, hikes in local nature preserves, harvesting eggs from chickens, planting vegetables, rocketry lessons, and trips were some of the “out of the box” activities for the teens.

In cooperation with the Rockaway Waterfront Alliance , our group participated in a community service project that involved cleaning up beach and dune areas in Far Rockaway. Jonathan Cooper, Kulanu’s Director of Community and Inclusion Services praised the campers stating, “I am proud that our campers donated their time and energy to improvements in the Rockaway community. They worked hard as a group and felt good about their accomplishments”.

Read a parent letter to Jonathan about her son’s summer experience at Camp KULANU!

The program you have there is truly amazing, and the kids, especially my XXXXX, woke up in the morning and was so excited to go each day!! This was the first experience he has had going on the same bus with my other boys and it was very special for him. He didn't feel "different". He loved seeing my kids during the day at camp and being in an environment with other typical children.

Your staff at Kulanu/Hillel was also amazing. Highly experienced professionals, wanting only the best for each child.. going out of their way to make that happen. And of course all your staff so loving and caring and making each child feel special.

It’s so hard with a special needs child and what Kulanu does, the amazing program you run does so much for the kids. I can’t thank you enough for everything you do, for caring when most people don’t, and putting so much time and effort to help enrich the lives of those kids who need that special attention and care. That one week at Kulanu/Hillel was a week filled with fun and games and playing but also helped XXXXX with his independence, self esteem and feeling "normal" like everyone else. And for that we will always be grateful.

Thanks again
XXXXX XXXXX
Parent

If you would like to learn more about Kulanu’s “camp within a camp” program we invite you to visit the camp blog at http://www.kulanucamp.blogspot.com/

Autistic Teens Master Social Cues, Find Friends

2009-08-24T13:36:00.000-04:00

By THE ASSOCIATED PRESS
Published: August 21, 2009

LOS ANGELES (AP) -- Thirteen-year-old Andrea Levy ticked off a mental list of rules to follow when her guest arrived: Greet her at the door. Introduce her to the family. Offer a cold drink.
Above all, make her feel welcome by letting her choose what to do.
''Do you want to make pizza now or do you want to make it later?'' the lanky, raven-haired teen rehearsed in the kitchen, as her mother spread out dough and toppings.
This was a pivotal moment for Andrea, a girl who invited just one acquaintance to her bat mitzvah.
Andrea has autism, and socializing doesn't come naturally. For the past several weeks, she's gone to classes that teach the delicate ins and outs of making friends -- an Emily Post rules of etiquette for autistic teens.
For Andrea, this pizza date is the ultimate test.
The bell rings. The door opens. Can she remember what she needs to do?
More important, will she make a friend?
Even for socially adept kids, the teen years, full of angst and peer pressure, can be a challenge. It's an especially difficult time for kids with autism spectrum disorders, a catchall term for a range of poorly understood brain conditions -- from the milder Asperger's syndrome to more severe autism marked by lack of eye contact, poor communication and repetitive behavior such as head-banging.
An estimated 1 in 150 American children has some form of autism. There's no known cure. Some research suggests autistic kids who get help early can overcome some of their deficits. But the social skills they learn as a toddler may not be so useful to a teen.
''A lot of our kids need a tune-up. They need new skills to help them survive in their new social world,'' said clinical psychologist Elizabeth Laugeson of the University of California, Los Angeles, who runs a 3 1/2-month friendship program for high-functioning autistic teens like Andrea.
Growing up, Andrea hardly had friends at all. They either moved away or grew tired by her inability to emotionally connect.
When she was 18 months old, her parents noticed something was amiss. Instead of babbling, she would cry or scream to get attention. She had no desire to play, even with her older brother.
Some doctors said not to worry; others thought she had a speech impairment.
None of the answers made sense to Andrea's parents until two medical experts, including a pediatrician who specialized in developmental disorders, diagnosed her as autistic.
The family soon enrolled Andrea in special play therapy.
''We try and help her make friends, but she's always a step behind her peers,'' said her mother, Gina Levy.
In some respects, Andrea is a typical teenage girl who is crazed about celebrity gossip magazines, romance novels, drama and chorus. But she can be withdrawn and doesn't always get the subtleties of body language and other nonverbal signs.
Whenever she gets stuck in a conversation, she tends to stare, making people around her uncomfortable. She doesn't mean to be impolite -- it's just her way of watching and learning.
''I know I'm weird and I know I'm not normal,'' said Andrea, who looks like a young Anne Hathaway with braces. ''I've always known I'm not normal.''
Andrea found company from nine other high-functioning autistic teens who enrolled in a 14-week friendship boot camp earlier this year. More than 100 teens have graduated from the UCLA Program for the Education and Enrichment of Relational Skills, or PEERS for short, which costs $100 a session and is covered by many insurers.
Unlike other autism interventions, parents also must participate. They learn to become social coaches for their children so that their new skills can be retained when the program is over.
Every week, Laugeson, a peppy clinical psychologist known as ''Dr. Liz,'' leads the students through a maze of social survival skills: how to have a two-way conversation, how to trade information to find common interests, how to gracefully enter a conversation and how to be a good host. In class, the teens role-play with one another and also must practice what they've learned outside of class in weekly homework assignments.
Laugeson peppers the lessons with friendly reminders about proper etiquette:
''Don't be a conversation hog.''
''Give a cover story for why you are calling.''
''Don't be an interviewer.''
''Say you're sorry when you make someone angry, sad or upset.''
''You need to trade information at least 50 percent of the time during the get-togethers.''
Earlier this year, Laugeson published a study in the Journal of Autism and Developmental Disorders on how the parent-involved training has worked so far. In a study of 33 autistic teens, those who went through the program had more friends come to their houses than those who did not.
''There isn't much research on social group training that incorporates parents. That's a key factor for success,'' said Barbara Becker-Cottrill, who heads the West Virginia Autism Training Center at Marshall University. She has no connection with PEERS, but has reviewed Laugeson's research. ''Parents are children's first and probably best teachers.''
Despite the gains, Laugeson said the program is not a cure-all. Parents know this and don't expect their children to blossom into social butterflies overnight.
Andrea's mother has two goals: ''I hope she becomes a better conversationalist and feels more comfortable around her peers.''
Andrea's journey through an unfamiliar social world has been filled with some stumbles.
During a role-playing exercise, she was paired with a classmate to talk about their favorite book. Andrea was so eager to share her love of ''Gone with the Wind'' that she lapsed into a two-minute monologue about the plot. A counselor stepped in and reminded her not to be a ''conversation hog.''
One of Andrea's early attempts to inject herself into an existing conversation revealed some awkwardness. As a group of classmates chatted away about an animated movie, Andrea stood aloof, avoiding eye contact and unsure of what to do. Laugeson pulled her aside, advised her to listen and find a pause.
By the time Andrea rejoined the group, the discussion had switched to macadamia nuts. Andrea saw an opening and chimed in: ''Well, I've tried macadamia nuts and they're pretty good. When I was little, I would eat a lot.''
As time went on, Andrea's confidence improved. Through practice, she has let go of her tendency to be an interviewer during phone calls. On her own, she came up with the idea of asking the kids who were signing her yearbook to jot down their phone numbers too, a ploy that won her praise from the counselors and gave her a pool of potential friends to call.
Other teens in the class also progressed, but at a slower pace.
A fellow 13-year-old, Elias Cazares Jr., was diagnosed with autism two years ago. He displays more outward signs of the disorder -- rocking back and forth, constantly blinking, fidgeting with his face. Elias is obsessed with video games and talks of nothing else.
Unlike Andrea who got therapy growing up, this is the first time Elias has had professional help.
At times the pressure is too much. One day after class, Elias had a meltdown and refused to do the following week's homework -- calling someone outside of the group. Elias confided to Laugeson that he was teased at school and did not want to befriend the bullies. She calmed him down and said he could dial a cousin instead.
Despite the struggles, Elias' father is proud of the small steps he's taken: He recently called his neighbor to schedule a get-together. He also started making small talk with a younger kid in his hip-hop class, but he's been too afraid to ask for his phone number.
''What I want for him is a more normal life, to have at least one or two friends,'' said Elias Cazares Sr.
As the teens hone their bonding skills, parents gather separately for their own lesson.
UCLA postdoctoral fellow Alex Gantman, ''Dr. Alex,'' runs the parent session. It is a chance for them to talk about their kids' problems and progress and for Gantman to give pointers on helping the teens navigate their social surroundings.
One hard truth to face: There's a 50-50 chance that a kid will be rejected by peers, Gantman said, and it's OK to let them know that.
He points out that follow-up phone calls are critical in a budding friendship.
''Teens move on really quickly. Somebody else gets their attention and boom, they're gone unless you really develop a strong friendship bond,'' he said.
Gantman is working to expand the training to young autistic adults. They often struggle with dating skills as portrayed in the summer romance movie, ''Adam,'' about a young man with Asperger's who falls in love with his neighbor.
The PEERS program deals only with friendships, and teens must use the skills they learn in class in the real world. As part of their homework during the last month of the training, they had to play host to potential friends outside of the group.
Andrea invited over a fellow drama classmate with something in common. Both had a digestive problem that meant they couldn't eat foods containing wheat. So the two girls were going to make a gluten-free pizza.
Before the guest arrived, Andrea, dressed in a denim skirt and blouse, went over the steps of being a good host. The door bell buzzed. Her ponytailed guest was five minutes early and wearing a shy smile.
After exchanging pleasantries, the two gathered in the kitchen. Andrea got off to a slow start, standing at times with her arms crossed in front while her mother chatted away.
Then, she remembered her hosting duties and asked if the classmate wanted to add the pizza toppings first.
The guest deferred. ''You can go first.''
Andrea demonstrated: ''So you put a little bit of sauce ... and sprinkle on the cheese.''
''Perfect,'' the classmate replied.
After pizza, Andrea, with some prompting from her mother, asked what to do next.
The guest was indifferent so the two migrated to Andrea's room to watch a movie. After they got bored, they headed to the living room to play video games where Andrea got a chance to practice good sportsmanship.
Despite beating her guest in almost every round, Andrea threw out words of praise: ''Good job'' and ''Come on. You can do this.''
''You did well,'' Andrea said after winning the last round.
The two haven't hung out since the culinary experience. It's been an up-and-down time. But Andrea managed to have four get-togethers with a girl she met in chorus. And she's felt those familiar teen pangs of loss when she was stood up by another girl.
The older, wiser Andrea shook it off. She focused on a new set of possible friends she met while awaiting her turn to dive at the local swimming pool.
After overhearing that her schoolmates were on Facebook, she persuaded her mother to let her create a profile. She sent out ''a gazillion friend requests'' hoping a few will bite.
She has 33 friends and counting.

New York State Access Pass

2009-07-29T13:58:00.001-04:00

An Access Pass permits a resident of New York State with a permanentdisability (partially defined below) free use of parks, historic sites andrecreational facilities operated by the New York State Office of Parks,Recreation and Historic Preservation and the NYS Department of EnvironmentalConservation. The pass holder may have free use of facilities operated bythese offices, for which there is normally a charge for example, parking,camping, greens fees, swimming. The Pass, however, is not valid at anyfacility within a park operated by a private concern under contract to theState, or for a waiver of fees such as those for seasonal marina dockage,for a group camp, for reservation of a picnic shelter, for performing artsprograms, for consumables (i.e. firewood, electric, or gas) forcampsite/cabin amenities, or for fees related to campsite/cabin reservationsand registrations.To qualify for an Access Pass, an applicant must be a resident ofNew York State and must provide proof of disability, in the form ofcertification for an appropriate agency (defined in the application) or by aphysician. A disability includes: Blindness, Developmental Disability,Physical Disability requiring physical assistance, wheelchair confinement,prosthetic devices. Refer to the Access Pass application for more completeinformation.To request an application, contact NYS Office of Parks andRecreation and Historic Preservation, Access Pass, Albany, NY 12238 or call518-474-2324.

Restrictive Diets May Not Be Appropriate for Children With Autism

2009-07-28T15:29:00.000-04:00

July 28, 2009

Restrictive Diets May Not Be Appropriate for Children With Autism
By RONI CARYN RABIN

Many parents of autistic children have put their children on strict gluten-free or dairy-free diets, convinced that gastrointestinal problems are an underlying cause of the disorder. But a new study suggests the complicated food regimens may not be warranted.
Researchers at the Mayo Clinic reviewed the medical records of over 100 autistic children over an 18-year period and compared them to more than 200 children without the disorder. The scientists found no differences in the overall frequency of gastrointestinal problems reported by the two groups, though the autistic children suffered more frequently from bouts of constipation and were more likely to be picky eaters who had difficulty gaining weight.
The study, published on Monday in the journal Pediatrics, is the first to look at the incidence of gastrointestinal problems in an autistic population, according to the paper’s first author, Dr. Samar H. Ibrahim, a pediatric gastroenterologist at the Mayo Clinic. She suggested that autistic children should only be put on restrictive wheat-free or dairy-free diets after having appropriate diagnostic tests done.
“There is actually no trial that has proven so far that a gluten-free and casein-free diet improves autism,” she said. “The diets are not easy to follow and can sometimes cause nutritional deficiencies.”
The study found that the vast majority of both autistic and non-autistic children suffered from bouts of common gastrointestinal problems like constipation, diarrhea, abdominal bloating, reflux or vomitin.g Feeding issues and picky eating were also common. Some 77 percent of autistic children and 72 percent of non-autistic children were affected by one or more of these complaints over the 18-year period.
About 34 percent of the autistic children were affected by constipation, compared to 17.6 percent of the comparison group, while 24.5 percent of the autistic children had feeding issues and were selective in their eating, compared with only 16 percent of the non-autistic group.
But very few of the autistic children had a specific diagnosis of a gastrointestinal disease. Only one autistic child had Crohn’s disease, and one had intestinal disaccharidase deficiency and lacked enzymes necessary to digest certain carbohydrates. None suffered from celiac disease, which some reports have linked to autism.
Two of the non-autistic children in the comparison group suffered from lactose intolerance, and one had a milk allergy.
Dr. Ibrahim suggested that the loss of appetite and difficulty gaining weight in autistic children may be related to the use of stimulant medications, which are often prescribed for the condition, and that the constipation may be due to children not consuming enough fiber or drinking enough water.

Celexa May Not Help Kids With Autism

2009-07-20T14:00:00.000-04:00

Celexa May Not Help Kids With Autism
06.01.09, 04:00 PM EDT
Study finds no benefit, and more side effects, but not all agree

MONDAY, June 1 (HealthDay News) -- In contrast to the assumptions of some doctors, new research suggests that the antidepressant Celexa does not help relieve repetitive behaviors often seen in children and teens with autism.
But the findings still need to be confirmed by other studies, and at least one autism specialist said the drug has worked well in his patients of preschool age, who are younger than those in the study.
"The jury is still out on how autism should be treated," said the specialist, Dr. Andrew Zimmerman, a pediatric neurologist and director of medical autism research at the Kennedy Krieger Institute in Baltimore.
Antidepressants known as selective serotonin reuptake inhibitors, or SSRIs, are a common treatment for autism and given to perhaps 30 percent of children with the condition, said Dr. Bryan King, lead author of the study. Other common treatments, he said, include antipsychotic drugs, which calm people who use them, and stimulants such as Ritalin, which reduce hyperactivity and impulsive behaviors.
Celexa, also known by the generic name citalopram, is lesser known than similar antidepressants such as Prozac and Paxil. But it's easier to prescribe to autistic children because it comes in a liquid form, meaning that parents don't have to force their children to take pills, said King, a researcher and director of psychiatry and behavioral medicine at Seattle Children's Hospital and the University of Washington.
Also, the drug spends less time in the body before being flushed out, making it easier for doctors to quickly adjust the dosage, he said.
King's research team assumed that Celexa reduces symptoms of autism in children, such as repetitive motions, but they wanted to understand more about its powers.
"We didn't expect it to work for everyone, but we were hoping that we'd be able to drill down into the population for whom it was very helpful and begin to identify the predictor of what a positive response would be," he said.
They randomly gave either 16.5 milligrams, on average, of Celexa or a placebo to 149 children with autism who were 5 to 17 years old. The children took the drug or fake drug for three months, and 123 of them finished the study.
The number of children who improved -- defined as not engaging in as many repetitive behaviors -- was about a third in both groups.
In other words, Celexa appeared to make no difference compared with a placebo. And children on Celexa were more likely to suffer from apparent side effects such as diarrhea, insomnia, hyperactivity and repetition of movements, the study found.
In a statement, Forest Laboratories, the maker of Celexa, said that it "was not involved in this study and therefore cannot provide comment."
The results are in the June issue of Archives of General Psychiatry.
The finding raises questions about whether similar antidepressants are also not providing benefit, or as much benefit as doctors had assumed, King said.
Zimmerman, the Baltimore autism specialist, said he's successfully treated younger autistic children, ages 3 to 5, with the drug. He added that he uses smaller doses, which appear to not create as many side effects.
"If you start at a very low dose and build it up slowly, you see improvements in mood and decreases in repetitive behaviors," he said. "The kids are more attentive."
More information
The U.S. National Institute of Neurological Disorders and Stroke has more on autism.

News from Disability Scoop

2009-07-13T14:49:00.002-04:00

Disability Scoop Email News: Friday, July 10 , 2009

To check out these headlines and more, visit DisabilityScoop.com everyday for the latest in developmental disability news. Like what you see here? Feel free to forward this email to your friends and colleagues. And, if you haven't already, click here to register with Disability Scoop, it's free!
Latest Headlines:
Long-Term Care Enters Health Reform DebateJuly 10, 2009White House officials tell Disability Scoop the president supports the Community Choice Act, but are mum on including it in health care reform.
Children Often Age 3 Or More Before Fragile X ConfirmedJuly 9, 2009Despite increased awareness, there’s been practically no change in the age of diagnosis over the last seven years, a study finds.
Beware Of Free Drug Samples, Consumer Group SaysJuly 9, 2009Think twice before accepting free samples of drugs like Adderall XR, Concerta and Strattera, Consumer Reports is warning.
Push For Autism Insurance Mandate Shifts Into High GearJuly 8, 2009An ad campaign launched Wednesday by Autism Speaks urges Congress to include autism insurance coverage in its health care reform efforts.
Autism Brings Moms A Whole New Level Of Stress, Study SaysJuly 8, 2009Mothers of children with autism experience more stress than mothers of kids with other types of developmental delay.
Man With Down Syndrome To Be Honored At All-Star GameJuly 8, 2009A man with Down syndrome will be one of 30 heroes honored by People Magazine and Major League Baseball at the league’s All-Star Game.
Disability Groups Unite Behind Sotomayor ConfirmationJuly 8, 2009More than two dozen national disability organizations are asking the Senate to confirm Sonia Sotomayor’s nomination to the Supreme Court.

The Scoop:
Scoop Essentials: Preventing Violence, Abuse And NeglectJuly 7, 2009People with developmental disabilities can be seen as easy prey. Learn how to avoid being victimized from Nancy Fitzsimons, an associate professor of social work at Minnesota State University, Mankato who specializes in abuse prevention for people with disabilities. Check out what Fitzsimons has to say and then click here to submit your own questions to her.
Advertise With Disability ScoopLooking to get noticed ? Our new advertising program for companies, organizations and professionals offers targeted solutions for any budget. To learn more click here.

Announcements & Reminders...
Announcing Scoop Group, The Disability Scoop Discussion ForumBe among the first to post on Disability Scoop's discussion forum. Ask for advice, advocate for your cause, share ideas. It's up to you. You came for the news. Now, stay for the community on Scoop Group, your new way to connect to the developmental disability community.
Also, Now Available: Video "The IEP And You" (View In English Or Spanish)Accepting Questions About IEPsRecently we brought you Sc oop Essentials: IEPs Inside Out, a frank discussion of IEPs with the head of one of the nation's largest special education programs, Donnalyn Jaque-Antón. She is responding to reader questions. Click here to submit your own questions and check back soon to read her responses.Accepting Questions About Disclosing A DisabilityRecently we published Scoop Essentials: Disclosing Disability, Tackling A Dicey Proposition, a conversation about talking about disability with therapist Diane Smith. She is responding to reader questions. Click here to submit your own questions and check back soon to read her responses.
Disability Scoop Is On Twitter!Follow Disability Scoop on Twitter where you can sign up to receive news alerts on your mobile phone as text messages. Click here to check it out and don't forget to become a follower.
Become A Fan On FacebookClick here to check out the Disability Scoop page on Facebook and be sure to become a fan.

About Disability ScoopDisability Scoop is the first and only nationally focused online news organization serving the developmental disability community including autism, cerebral palsy, Down syndrome, fragile X and intellectual disability, among others. Launched in 2008, Disability Scoop is the premier source for developmental disability news. Learn more at http://www.disabilityscoop.com.

They Taught Him to Fish, Then Let Go

2009-06-29T21:45:00.000-04:00

By PETER APPLEBOME
FREEPORT, N.Y.
The invitation for Dan Mulvaney’s graduation Sunday showed a burly young man with a hipster’s goatee wearing a graduation cap (courtesy of Photoshop) and holding a real striped bass he caught in the bay behind Long Beach High School.
It read: “ ’Twas said that by teaching a man to fish you feed him for a lifetime.
“Dan Mulvaney has learned to fish, learned to cook and accomplished many things. Dan is ready to take on the world. Join us in celebration of his graduation, with honor, from Long Beach High School.”
It concluded: “Casual cuisine, beach-friendly dress code, indescribable pride.”
You could sense that indescribable pride Friday as his father, Jim Mulvaney, watched his son at work at the recreation center in this Long Island suburb just across the bay from their home.
After all, Dan holds down two jobs, at the recreation center here and the Lakewood Stables in West Hempstead. He’s getting ready to move into a house with three friends. He cooks — mostly pasta — and picks up after himself and does his chores at home better than most of his peers. His mother, Barbara Fischkin, says when they walk on the boardwalk in this unpretentious seaside town, more people greet him than her. Dan often accompanies his father to a local bar like Geri’s or John Henry’s, nursing a Sprite and picking the olive out of his father’s martini.
At 21, he has even managed to learn to say a few words — hi, mom, dad, more, food, bathroom and a few others. He may indeed be ready to take on the world, but at the very low end of the autism developmental scale, he’ll take it on with very limited tools. He’ll almost certainly need a full-time caregiver for the rest of his life.
Every graduation has its own history and conflicting story lines — pride, nostalgia, joy, achievement, regret, separation. It’s hard to know who’s in for more change and who’s better prepared for it, the graduate or the parents.
But this is a graduation that seemed unlikely to happen, so you can multiply all the emotions by 2, 3 or 10. Dan seemed on a normal developmental track for his first three and a half years until things went haywire. His speech suddenly stopped. He sat in a corner gnawing on his shirt. His parents first thought it would pass, then that it was a hearing issue, and finall y the cold, terrifying diagnosis came.
In the early years, the school district had no idea what to do with him and said he was better off at home or a “special school.”
As a middle school student he was isolated from other children and placed in the corner of a foyer where the solution was to let him bounce on a trampoline, ride an exercise bike and nap as frequently as possible. His parents were told that at least one teacher referred to him as “an animal” from whom other students needed protection.
The school district insisted that Dan be sent to an institutional setting, an idea his parents balked at even before a state official had warned them that a school recommended by the district had problems with pedophilia.
And for all the expense and havoc, the $50,000 yearly baby-sitting bills, the disruption he created to careers and relationships, they didn’t want their son in an institution. They wanted him in a local school and in his own house.
“Parenthood is not something you can abdicate,” Mr. Mulvaney said. “No one is going to look after your child better than you, especially a hard child.”
SO instead, with the assistance of the district’s head of special education, Mary Tatem, they pushed and prodded, became total pests, made themselves and the district crazy but ended up with the best education Dan could hope for, one where he ate with other kids and became part of their world — good for him, good for them. And along the way Long Beach transformed itself from a district that barely knew how to deal with special-needs kids into one of the best in the region.
None of it is perfect. How could it be? But Sunday, Dan was coaxed into putting on his graduation gown and, after halting for a moment as if pleased and surprised by the enormous burst of applause, received his diploma. About 60 people came to his house to celebrate — parents, teachers, advocates for the autistic, his pediatrician, the friends who greet him on the boardwalk.
On Monday, he goes off to a summer camp, and then he’ll begin his new life at a group home. And he and his parents, like so many this time of year, will start anew with both a new set of possibilities and unalterable ties to the life they’ve somehow suddenly, miraculously outgrown.
E-mail: peappl@nytimes.com

Wide World of Adaptive Sports

2009-06-29T21:39:00.002-04:00

On Sunday June 14th, 2009 Kulanu, together with the Five Towns JCC, CAHAL, and TOVA, held its first Wide World of Adaptive Sports symposium for parents and their children with special needs at HAFTR Elementary school. Coaching parents in the techniques of breaking down sports to adaptive skills for their children, parents and children spent the morning at karate, yoga, basketball, soccer and aerobics workshops run by Kulanu specialists and visiting professionals. Information tables for other adaptive sporting events such as golf, baseball, horseback riding, Special Olympics, and track and field events were on hand. As an added perk, the first fifty participants were given free bike helmets.
The highlight of the day featured an inclusion baseball game played by Kulanu members and special guests from the Young Israel of Woodmere’s little league team. Parents burst with pride as their children hit, ran and fielded during the game. One parent commented that she’d like to someday see “kids with special needs integrated into community little league teams.”
Steven Cuomo, founder of Rolling Thunder, a Track and Field team that includes individuals with disabilities running side-by-side with “typical” runners, enthused about the importance of getting all kids involved in sports.
“In the classroom you can tell the difference between a child with autism and the others. Put the same group of teens on a track field and they all are same. It’s time we stated focusing on peoples abilities and help them build on their strengths instead of looking at what they can’t do.”
All participants were given a take-home guide to special needs sports that Kulanu compiled. If you would like a copy of the guide and further information about the many programs available to families with children with disabilities, please contact Leiby Brill at 516-569-6664 or e-mail to leiby@kulanukids.org.

SUMMER 2009 programs and camps for Special Needs families

2009-06-29T21:37:00.000-04:00

Here's a quick outline of all the summer programs and special needs camps for SUMMER 2009! Attachments and listing will also be posted on our website, www.ManhassetSEPTA.org throughout the summer for your convenience-hope you find them helpful and wishes for a fun, healthy summer for all!
Events:
Special Day for Special Kids Event-Sat July 25 and Sun July 26, 11am-4pm. Summer Festival for children with developmental disabilities (including Autism Spectrum, ADHD, OCD, Tourette's, and related neurobiological disorders) and their families! Wall climbing, EuroBungee, mini golf, bouncy castle, giant slide, swimming pool and water slide, baseball, basketball, toddler and big kid playgrounds, paddle boat and MORE! West Hills Day Camp in Huntington $12/adult-$6 for kids 12-3y/o (free for 3y/o and under) Bring lunch-or buy it there. www.specialdayforspecilakids.com (See attached flyer.)

Learn to ride a two-wheel bike-ALL kids welcomed! Log on to www.bikeny.org and sign up for the free class. This group also helps fits helmets (can provide one also!) and size handlebars and seats to child's body and more! It's a 2 hrs workshop FREE--typical and special needs kids.

Free Summer Family Film Festival-Westbury Stadium 12 theaters at Brush Hollow Road is hosting free family movies every Tues and Weds at 10am all summer long! Space Chimps, Kung Fu Panda, Curious George, Barnyard and lots of family films your kids might have missed in the past years-or would love to see on the big screen again. Visit the Regal movies website for the complete listing (festival is nationwide!) http://www.regmovies.com/nowshowing/familyfilmfestivalschedule.aspx?state=NY

Surfer's Way will be having three special needs tandem surfing experiences this summer at Long Beach, NY. Everything is supplied and free including individual tandem surfing instructor, wetsuit, life vests and boards-just bring a towel and sunscreen! Check out their site for details and dates http://surfersway.org

Hooves for Hope at the Sand's Point Preserve is now accepting enrollment for their Equine assisted program for special needs children and their families. Check out their website for more information and an application http://www.hoovesforhope.org/ .
Programs:

The Mosaic School Summer Program for children 7-16 y/o with Autism offers a behavioral school program in Wantagh with 6 or 8 week program that includes recreational activities that support social skills, behavior management, and academics over the summer. Call 516-765-3696 for more details.

St. Mary's Kids at Roslyn now offers programs for k-3 and 4-8 grades including therapeutic listening, Wii exercise program, handwriting without tears, and more programs this summer. Call 516-621-2681 or email Sharon Pardo at spardo@stmaryskids.org for information on programs.

Power Pals' Afternoon Recreation Program-This program in Glen Cove is open to special needs and typically developing children ages 6-10 y/o from 1pm-4pm from June 29th to Aug 14th. Daily program includes bike riding lessons, sports snack and water play headed by "Skills-n-Drill Bootcamp's" own Coach Chris Speziali! Call 516-359-7734 or register online at www.power-pals.com. (See attached file)

For Teens and College Students with ASDs: Summer Organization and Academics Readiness at the Fay J. Lindner Center for Autism and Developmental Disabilities' Advantage Care Diagnostic and Treatment Center. This short term "coaching" therapy program focuses on self-awareness, organizational skills and executive functioning over 8weeks with a 1:1 skill building program (45 minutes per session). Bring a blank planner and get ready to get organized! If you are interested, please contact Laurie Perlis, Psy.D., program coordinator for more information at 516-686-4440.

Kehilla Vocation Experience at Sid Jacobson JCC is a 6 week summer vacation and work experience rolled into one for 16-21 y/o special needs young adults. Program includes two vocational sites throughout the summer and one day a week for fun-filled day trips, with fitness, art therapy and drama included as daily activities. (See attached flyer.) Contact Lisa Warren at lwarren@sjjcc.org or call 516-484-1545 ext 786.

Camps:
Ramapo Camp:
Footholds for the Future, a prep program for young adults with special needs who require supportive services on the road to independence. This program is designed to provide an inclusive group living experience focused on building healthy relationships, learning essential life skills, and practicing job-related competencies. Ramapo will operate two 12-week sessions in 2009 and three 12-week sessions in 2010 at Ramapo's Rhinebeck, NY campus. Participants may enroll in multiple sessions. 2009 Program Dates for summer; June-September 2009 (start and end dates are flexible) and fall; September 2-November 24, 2009 For more information and to apply, contact Mike Fleet at footholds@ramapoforchildren.org

Get Your Feet Wet for children is a new one-week camp program now available in August for first timers to sleep-away camp. Swimming, crafts, hikes, cookouts, and sing-alongs--all the best activities of the summer along with a wide range of special events will be offered during Ramapo's inaugural "Get Your Feet Wet" program, set for Saturday, August 22 through Saturday, August 29, 2009. For more information, please call us at (845) 876-8423 or e-mail mkunin@ramapoforchildren.org .
Camp Ramapo for 5-10y/o for one to six week programs. See attached flyer for details.

Mid Island Y JCC Afternoon Day Camp for Special Needs Children 3-10 y/o-The perfect compliment to CPSE or CSE morning programs, with a 2-to-1 child/counselor ratio to enjoy the summer camp experience. Program runs from June 30th to Aug 19th and includes swimming in their Olympic sized pool, sports, outside playground, music, snack and more. Contact Doreen McIlwaine at 516-822-3535 or via email at dmcilwaine@miyjcc.org for more info and prices.

Great website to help your summer routine and travel:
An online resource that helps walk parents through outlining and creating an ABA program to use at home, camp, and during summer happenings. www.rethinkautism.com

An online guide of gluten free eating for all of Long Island--www.GlutenfreeLI.com

And last..
NYS PTA's June Advocacy Newsletter and Legislative Briefs
Available on the website, www.nyspta.org, The Advocacy Newsletter reports information on education; environment; special education; health and wellness; parenting and family life; family, school and community engagement; and cyber/media safety. The Legislative Briefs... reports the latest information on both State and Federal legislative activity from the Legislation chairman.

Membership Connections
To help network and share information, SEPTA offers personal recommendations to explore and judge for yourself. Please email us with any recommendations or networking requests you may have!

Remember, KNOWLEDGE IS POWER-Please forward this on, and send us info to share! It is Manhasset SEPTA's mission to empower with knowledge, supporting parents and staff to give every child excellence in education and quality of life.

Many thanks, Manhasset SEPTA

Another Mother’s Musings

2009-06-24T13:00:00.000-04:00

New Beginnings
By Phyllis Lubin
Published on Thursday, June 18, 2009

A beautiful dress was chosen. The hair was cut and styled perfectly. Everyone involved knew the date and time to be there. The excitement was building all day. The babysitter was due to arrive in time for us to get good seats (neither Yussie nor Lea would be able to stay awake so late). Rochel needed to be there an hour early, so her dad was available, of course, to get her there on time. And everything worked out perfectly.

In the one day that has passed since Rochel’s graduation, many thoughts have gone through my head. Somehow, after all these years, I can still remember my junior-high-school graduation. (We called it “junior high school” then, not “middle school.” I’m not sure why the change was made, but perhaps somehow “middle” is now deemed more appropriate.) My junior-high-school graduation stands out in my mind more so than my college graduation. I never had a high-school graduation, since the “fad” at the time was to go to college on early admissions; and I missed my law-school graduation, since I gave birth to my eldest son, Naftali, the day before that big day. College graduation day was shared with hundreds of other graduates that I didn’t know, listening to speeches from people I had never met, and the attendance was so huge that there was no way I could spot my parents or any familiar smiling faces.

Graduation from junior high school was much more intimate. It was conducted in the school gym on Washington Avenue in Lawrence. My graduating class comprised about 30 students (compared to almost 100 in Rochel’s graduating class). Everyone knew everyone else’s name, and I certainly got to see the smiling faces of my parents, grandparents, uncle, and brother as I received my diploma.

Fast-forward a few decades, to June 14, 2009. My 13-year-old daughter, Rochel Raiza Lubin, has reached this milestone. Too big a crowd to meet in the school gym where I graduated, we gathered at Congregation Beth Sholom (next door to the school). The shul was filled to capacity. Hundreds of smiling faces watched their loved ones. A new tradition began this year, as alumni of the school were invited to personally present the diploma to their loved ones. As my husband and I are both alumni of this fine institution, we were both called to the front to present Rochel’s diploma personally. I had my moment again, as I had so many years before, to see my mother’s smiling face before me, although this time with an added ingredient—my amazing daughter Rochel.

I cannot complete this column without shepping a little nachas. My daughter Rochel is indeed special. She has blossomed into the mature young high-school woman she is today. Her kindness and caring towards her grandparents, siblings, parents, and friends is known by all. Specifically, her patience with her younger siblings is remarkable. Her dedication to helping out at the Kulanu Sunday program is truly commendable. She actually began her “work” at Kulanu eight years ago, before Yussie was old enough to attend, as a “friend” to other children with disabilities at Kulanu.

For the past month, since my dad’s injury, Rochel has been by my side on countless trips to the hospital, and now, thankfully, to visit him at home. She knows just the right things to say and do to cheer him up. In fact, she enjoys helping him with the laptop computer to enable him to use e-mail and stay in contact with life outside his house. Rochel knows just the right way to cheer anyone up when they are down. Her enthusiasm is contagious!

According to the dictionary, graduation is the “conferral or receipt of an academic degree or diploma marking completion of studies.” I think I would like to add another facet to this definition: “Conferral or receipt of an academic degree or diploma marking a new beginning in life.” A promotion, if you will, to another level in the course of a lifetime. As a high-school student, even more will be expected from our graduates, and I have the faith, along with Rochel’s entire family, that she will use the skills that she has acquired to succeed at anything she wants in life! Mazel tov!

Phyllis Joy Lubin is an attorney with Rosenfeld & Maidenbaum, LLP, who resides in Cedarhurst with her husband Leonard and six children: Naftali, Shoshana, Rivka, Rochel, Yosef, and Lea. She welcomes your questions and comments at MothersMusings@gmail.com.

Opportunities for in-home respite in Queens

2009-06-22T13:24:00.001-04:00

Ohel Bais Ezra has opportunities for families that live in Queens to

receive in-home respite services. In-home respite provides temporary

relief to families for several hours per week. While providing this

respite, trained counselors work with these children and adults with

developmental disabilities on a 1:1 basis, providing socialization

and skill building activities. For more information please call

Intake at (718) 686-3471 or email BEintake@ohelfamily.org

Kumu; The Second Annual Kulanu Musical

2009-06-11T13:41:00.001-04:00

On May 17th, 2009 Kulanu’s Sunday Recreation Program “musical production” KUMU, showcased the music and movement that has been enjoyed all year by our participants and volunteers. The name of the musical, “Kumu” (stand up) was Kulanu’s way of reminding everyone to “stand up and make a difference”.

This years’ production took its inspiration from the Off Broadway hit STOMP. The production, conducted in front of parents of participants and volunteers was filled with music and beats created by garbage cans and handmade instruments.

For the past 10 years hundreds of children from our communities have been getting up early on Sundays to attend our program. As a result, Kulanu’s Sunday Morning Activity Inclusion Program has impacted the lives of children with disabilities and community volunteers simply by spending dedicated time to have fun together by attending movement classes, adaptive sports, therapeutic music, arts and crafts, and learning about Jewish holidays and heritage. To find out more about the Sunday Program or are interested in volunteering, please call Leiby Brill at 516-569-6664. We look forward to seeing you there!

Kulanu senior receives “The Baco Boys Award”

2009-06-08T17:28:00.001-04:00

Kulanu senior, Yigal Rosengarten was among the 15 individuals given Awards for Devotion and Commitment in Action at a ceremony at Temple Hillel on Thursday night, May 14th, 2009. What has been termed “The Baco Boys Award” was established by the Five Towns Jewish Council in the memory of four teenage Camp Baco counselors: David Altschuler, Adam Cohen, Jonah Richman, and Jordan Satin, who drowned while heroically attempting to save each other in the rain-swollen Boquet River.

The Five Towns Jewish Council acknowledges their untimely passing and promotes the qualities of selfless service to humanity by annually presenting The Award for Devotion and Commitment in Action to local students.

In nominating Yigal, the Kulanu faculty noted his participation in Tomchei Shabbos, delivering food to the needy before Shabbos and his participation in the Kulanu Fair where he is instrumental during early morning set-up, working a full day and assisting in clean up at the end of this annual event. Mr. Michael Trotta, the school coordinator and Mrs. Melissa Sornik, social worker, noted that Yigal’s demonstration of chesed on a daily basis was the over-riding reason for his nomination. During the school day, Yigal is known to intercede in classmates interactions, ensuring that the “under-dog” is fairly represented.

The administrators and faculty members of Kulanu are proud to acknowledge Yigal’s accomplishments and wish him a hearty Yasher Koach.

Applied Behavior Analysis and Social Thinking

2009-06-08T14:12:00.000-04:00

Newsletter
Michelle Garcia Winner's Update on Social Thinking

In This Issue
Social Thinking Providers Conference

Early Reg. Ends June 11!

Michelle's Blogs: "I Don't Care!"

Gifted at Home But Not in School?

Free Book Offer through June 15!

Seattle-Area Workshops

Dallas - with Carol Gray

So. San Francisco Workshops

Need More Intensive Training?

Quick Links

Up to 20% off Workshops

Superflex, Social Detective & More Books

Michelle's Blog

Social Thinking Providers Conference!
June 27-28
Santa Clara, CA
This two-day workshop will focus on the emerging concept of combining Applied Behavior Analysis (ABA) and Social Thinking. Our speakers will present creative strategies related to teaching Social Thinking in schools and private practices, including those related to refining social behavior mapping, using more visual strategies to teach Social Thinking and learning a concrete way to teach friend files. We will have details of a creative summer program, a school that blends behaviorism with social teachings and more! Go to the website for the agenda and speaker summaries.

Read more

A Politically Incorrect Look at Evidence-based Practices

By Michelle Garcia Winner

"A must read for all regular and special educators!"

- Kari Dunn Buron, autism specialist and author of the "5-Point Scale" books
Read more

Superflex!

"Teachers and parents will be amazed by the power of this cartoon character."
- kindergarten teacher

Read more

Michelle's Other Presentations
Hollywood, Florida
June 10-11, 2009

Tallahassee, Florida
June 18-19, 2009

St. Charles, Illinois
July 23-26, 2009
Autism Society of America National Conference

All Workshops Schedule

Our Social Thinking Providers Conference is right around the corner and therapists and teachers are coming from all over to present their unique spin on how to apply Social Thinking in real time. Check out the schedule! Registration is still open, but the early and group registration discounts end June 11. We are also finalizing our new, anime-illustrated book for teens and college-aged students, which will be released very soon. I've posted new blogs, including one on how to approach the dreaded "I Don't Care!" attitude that many of our kids have. The school year may be ending, but the learning continues!

Early Registration Deadline: June 11
Romance and its complexities, teaching self-regulation, motor activities and Social Thinking... these are just a few of the topics clinicians will address at this year's expanded Social Thinking Providers Conference! The conference, on June 27 and 28 in Santa Clara, CA, will focus on bridging Applied Behavior Analysis (ABA) and Social Thinking. Breakout sessions will go deeper into specific age groups. The latest research on Social Thinking will also be presented.

Read more

"I Don't Care!"
How many times have you heard that! From elementary school to high school, our students seem to say it a lot. In my new blog, I offer you ways to approach the thinking behind it and the teaching needed to help these kids along. Listening, and not taking it personally, are key.

Read more

Gifted at Home But Not in School?
So many of our students can be self-directed, active learners at home, but hit the skids at school. While understandable, the social complexities of school must be faced. I've posted a blog exploring this topic.

Read more

Free Book Offer!
Through June 15, buy Playtime with Zeebu, a DVD and puppet combination for ages 3 and up that makes social learning fun, and receive the new 40-page Zeebu activity book, EYEPOWER: Learning to Use the Power of Your Eyes, for free (regularly $6.99)! The new Zeebu program can help to start building Social Thinking "early and often!"

Read more

Seattle-Area Workshops
I'm excited to return to Seattle on October 6 and 7! The workshops this year are intended for parents, professionals and other caregivers who are new to Social Thinking and want to learn the practical strategies and core information. We'll explore the ILAUGH Model of Social Cognition that shows how social-processing difficulties affect a range of academic tasks, how to make IEP goals work, why standardized tests are inadequate, an "eye-opening" informal assessment procedure and much more. Please let people know this is a great chance to get introduced to the core Social Thinking ideas! More details and registration discounts are now on our website.

Read more

Dallas Workshops with Carol Gray
Carol Gray and I always have a lot of fun teaming up to present these two workshops coming to the Dal las-Fort Worth area on November 5 and 6. Her Social Stories and related insights work brilliantly with Social Thinking. We will examine how our students need to learn their own new paths to thinking socially, as well as how our thinking as parents and teachers can help to encourage our students' abilities to learn. This is a popular workshop series so sign up early! Early, online and group registration discounts are now active on our website!

Read more

South San Francisco Workshops
We have taken your advice and opened up registration and discounts now for our Bay Area workshops on December 2 and 3! I will present the practical and dynamic assessment and treatment strategies that I continue to develop through my clinical work. These workshops offer a great introduction to Social Thinking.

Read More

Need More Intensive Training?
Our mentor-training sessions fill up quickly! Folks from all over the world participate, learning intermediate-to-advanced level treatment concepts of Social Thinking and observing students. Dates and applications for 2009-2010 mentor-training are now posted on our website under the Professionals tab.

Read more

Summer offers us a time to refresh. But that doesn't mean it's all lazy days! Think about how much learning goes on during a vacation, or just spending more time with your kids and family. Social Thinking happens everywhere--on the beach, in a crowded airplane. Take this time to observe. Maybe a new insight into one of your students will emerge, or even the beginnings of a treatment approach. Put your sunglasses on, but not your blinders. And don't work too hard :)

Best regards,

Michelle Garcia Winner
Social Thinking

You are receiving this email from Michelle Garcia Winner and her Social Thinking organization because you purchased a product/service or subscribed on our website.

To ensure that you continue to receive emails from us, please add news@socialthinking.com to your address book and/or "Safe Senders List" today.

If you have a change in email address or wish to unsubscribe, please use the links below. Please do not reply to this email.

Free workshop series for parents of children with ASD ages 3-8 at Lindner Center

2009-06-08T14:04:00.000-04:00

Fay J Lindner Center for Autism is offering a free workshop series for parents of children with ASDs ages 3-8 this summer in conjunction with a research project. Workshop dates are 6/22, 7/13, and 8/10.

This free workshop series has been designed especially for parents of children with an Autism Spectrum Disorder between the ages of 3 and 8 years. This 3 part series covers topics which parents frequently ask us about. Parents will benefit by learning how to extend programming to the home environment.

These workshops are being offered as part of a research project through the SUNY Stony Brook Department of Psychology in collaboration with AHRC Nassau and the Fay J. Lindner Center. The project is looking at family barriers to effective interventions in young children with ASDs. At the end of each workshop participants will be invited to sign up for the research study. Participation in the study is voluntary and is not required to attend the workshops.

Please see attachment for more information or contact stetenbaum@ahrc.org

Your Young Child with ASD Workshop Series

Workshop #1 June 22nd 7-8:30pm
What to do when yelling doesn’t work:
Why don’t children just listen? What is the best way to decrease unwanted behaviors? This workshop will focus on the use of positive behavior support strategies at home. Positive behavior support techniques will be highlighted that allow parents to decrease problem behaviors so they can focus on increasing learning and improve family life. The workshop will highlight how these strategies can be used with young children with autism spectrum disorders.

Workshop #2 July 13th 7-8:30pm
Teaching Life Skills to Young Children with ASDs: “It’s just easier to brush his teeth myself than wait for him to do it.” Ever find yourself frustrated teaching everyday skills? Life skills and self-care can seem like hard work for children with ASDs and their parents. However, early childhood is a good time to work on skills such as toileting, teeth brushing, hand washing, dressing, and feeding. This workshop will highlight strategies to ease the frustration of teaching early life skills and address behavior analytic strategies that will lay a framework for future skill development.

Workshop #3 August 10th 7-8:30pm
Family Barriers to Effective Interventions: Sometimes life gets in the way of teaching. This workshop acknowledges that intervention does not occur in a bubble and that sometimes family difficulties prevent optimal interventions. This workshop will highlight research about the experiences of families of children with ASDs. Additionally, suggestions for additional supports and strategies to alleviate these barriers will be discussed.

The Fay J. Lindner Center
The Fay J. Lindner Center for Autism & Developmental Disabilities, an affiliate of AHRC Nassau and the NSLIJ Health System, provides services for children and adults with autism and related developmental disabilities. The Center provides a range of treatment programs in both individual and group settings including: cognitive and behavioral programming, social skills and communication training, counseling, psychological, social work and speech language services, psychopharmacology and research participation, in addition to comprehensive interdisciplinary assessments and school consultation. The Center was recently relocated to a new state-of-the-art facility on AHRC Nassau’s Brookville campus on Wheatley Road. The center is adjacent to the Pearl & Jack Ain Advantage Care Diagnostic & Treatment Center. The workshops will be held at the AHRC Mansion (white building across from Center).

Speaker Biography
Samara Pulver Tetenbaum is currently a doctoral candidate in clinical psychology at SUNY Stony Brook and a behavior specialist at the Fay J. Lindner Center for Autism. She has been working in the field of ASDs for 6 years and has extensive expertise in cognitive behavioral therapy, behavior plans, and family work. She has provided both home and clinic-based therapy services and has offered behavioral and social skills consultation in the schools. Samara has presented locally and nationally on positive behavioral supports and family work for individuals with ASDs

Please send completed
registration form to:

Fay J. Lindner Center for Autism & Developmental Disabilities
189 Wheatley Road
Brookville, NY 11545
Attention: Samara P. Tetenbaum

Phone: (516) 686-4440
Fax: (516) 686-4439
E-mail: stetenbaum@ahrc.org
Sign-up Form (You may sign up for 1, 2, or 3 of the workshops)

Sign up for:
Date
Time
 What to do when yelling doesn’t work 6/22 7pm
 Teaching Life Skills to Young Children with ASDs 7/13 7pm
 Family Barriers to Effective Interventions 8/10 7pm

Name
Address

Phone
E-mail

How did you hear about the workshop series?

How old is your child?

Children's Use Of Psychiatric Drugs Begins To Decelerate

2009-05-27T16:11:00.000-04:00

May 18, 2009
Wall Street Journal

By DAVID ARMSTRONG

The growth in antipsychotic-drug prescriptions for children is slowing as state Medicaid agencies heighten their scrutiny of usage and doctors grow more wary of the powerful medications.
The softening in sales for children is the first sign that litigation, reaction to improper marketing tactics, and concern about side effects may be affecting what had been a fast-growing children's drug segment.
The six so-called atypical antipsychotics that dominate the market have limited approval from the FDA to treat patients under 18 years of age. Only one is cleared for children under age 10 -- risperidone, branded by Johnson & Johnson as Risperdal -- to treat irritability associated with autism.
But doctors can prescribe drugs as they see fit, and many have turned to the atypicals to treat serious mental conditions in children, including schizophrenia and bipolar disorder. Use of Risperidone by those 18 and under accounts for about 25% of the drug's sales, while SDI Health, a medical market-research company that gathers sales information from drugstores, estimates that sales of all antipsychotics to that age group account for 15% of the drugs' sales, or $2.18 billion.
Data on use among children are hard to come by, but SDI's figures show that antipsychotic prescriptions for children under 18 rose 5.2% between 2007 and 2008, compared with an increase of 8.73% in the year-earlier period.
The slowdown is more pronounced among younger children. The nation's second largest pharmacy-benefits manager, Medco Health Solutions Inc., which handles 586 million prescriptions a year, estimates that prescriptions for antipsychotics for patients under 10 fell 4% last year. From 2001 through 2007, use in that age group increased 85%, Medco says.
SDI Health estimates that prescriptions for psychiatric drugs for children under 10 increased 3.5% last year. In contrast, between 2002 and 2007, such prescriptions rose 44.6%, it says. SDI also says it saw a 1% drop in prescriptions for those under seven last year.
"I was never a big prescriber to begin with, but I have definitely been more careful as information has come to light about the serious side effects being downplayed in the marketing of these drugs," says Michael Houston, a child psychiatrist in Chevy Chase, Md.
Others who treat children with serious and dangerous behavioral problems worry that misconceptions about the drugs will prompt some parents or doctors to balk at their use.
"For those children who are seriously mentally ill, although these side effects can be potentially significant, the benefits far outweigh the side effects," says Louis Kraus, the chief of child psychiatry at Rush University Medical Center in Chicago.
Antipsychotics have faced heightened scrutiny and investigation over the past year. In November, a Food and Drug Administration advisory committee asked the FDA to research children's use of the drugs and expressed concern about possible side effects such as weight gain and increased diabetes risk. And 11 state attorneys general are investigating alleged marketing of Eli Lilly & Co.'s antipsychotic Zyprexa for uses the FDA hasn't approved.
In January, Eli Lilly agreed to pay $1.4 billion to settle allegations it improperly marketed Zyprexa. The company also agreed to plead guilty to a criminal charge of promoting the drug for unapproved uses.
A Lilly spokesman declined to comment on ongoing litigation and said the company doesn't track the drug's use in children.
Bristol-Myers Squibb Co. agreed to pay $515 million in September 2007 to settle allegations it promoted Abilify for use in children. The FDA didn't approve of the use of the drug in children older than 10 until 2008.
State Medicaid agencies began to question "off label" use of antipsychotics after the December 2006 death of Rebecca Riley, a four-year-old Massachusetts girl whose family received Medicaid benefits. After being diagnosed with bipolar disorder at age two, she was prescribed a cocktail of drugs, includingan antipsychotic, court records show.
Some states began moving to require special approval before they would cover a claim for an antipsychotic. A group of 16 states started studying the use of psychiatric medication in children in 2007 in an effort they dubbed "too many, too much, too young," says Jeffrey Thompson, the medical director of the Washington state Medicaid program.
In California, the number of children six and under using psychiatric medications has fallen to 4,200 from 5,686 since a 2006 prior-authorization plan was put in place, the state's top Medicaid official says.
Florida's state Medicaid agency says the number of prescriptions for atypical antipsychotics written for children under age six in the second half of last year dropped to 1,137 from 3,167 a year earlier.
The agency says the decline was the result of a state program started last year under which prescriptions for children under six are reviewed for appropriateness by state-hired psychiatric consultants before Medicaid will cover them.
Washington has created a system to flag the use of psychiatric drugs that may contain too high a dose for young children or have side effects that it regards as particularly dangerous. From May 2006 to April 2008, the system flagged 1,032 cases for review by outside consultants.
Write to David Armstrong at david.armstrong@wsj.com
Printed in The Wall Street Journal, page B1

Growing Old With Autism

2009-05-26T13:22:00.000-04:00

Op-Ed Contributor (the New York Times )

Growing Old With Autism

By KARL TARO GREENFELD
Published: May 23, 2009

IN mid-2007, I set off to meet with geneticists, epidemiologists and doctors who specialize in researching and treating autism. I was seeking a novel therapy for my 42-year-old autistic younger brother Noah. I was also looking to discover how heightened awareness of autism — it is now among the most financially successful and mediagenic diseases ever, with hundreds of millions of dollars a year going to research, and regular press coverage — might have resulted in new and innovative programs for adult autistics like Noah.
Autism was already widely being described as an epidemic, affecting as many as 1 in 150 8-year-olds, according to the Centers for Disease Control and Prevention. We had come a long way since Noah got his diagnosis in the late ’60s, the so-called dark ages of autism, when many pediatricians believed they had never seen a case, and so-called refrigerator mothers were mistakenly blamed for their children’s withdrawn, antisocial condition.
But now, with autism described to me as “the disease of the decade” by Peter Bell, the executive vice president of programs and services for the advocacy group Autism Speaks, I thought perhaps there was hope, even for low-functioning adult autistics like Noah.
Noah has been my family’s focus for decades. As a baby, he had been very slow to turn over, crawl or walk, and each subsequent developmental milestone was even more delayed as he grew into adulthood. My parents did everything they could for him, moving us from New York to Los Angeles in the early 1970s to be closer to a pioneering autism program at the University of California at Los Angeles, opening their own day care center for the developmentally disabled, even creating a one-on-one assisted-living situation for Noah — years before this became common — so that they could delay institutionalizing him.
I toured those state hospital systems with my parents when we started looking for a place for a growing-up Noah. Those were terrifying visits: adult patients wearing helmets and restraints, howling and hitting themselves. This was during the ’70s when the scandals at state psychiatric hospitals like Letchworth Village in New York and Camarillo in California were making terrifying headlines. Clients at Camarillo were dying from neglect and improperly administered medications. We had to keep Noah out of that system for as long as we could.
Eventually, when he was 22, Noah had to leave home. He graduated from his special needs school on a bright, sunny Orange County day; he was beaming, handsome in his bright blue cap and gown.
But for the profoundly autistic, graduation is perhaps the saddest day in their lives. For those who cannot enter the work force, continue on to more education or find some sheltered workshop environment with adequate staffing, there are few options. Far too few programs and resources are allocated for adults with autism.
Noah has been in and out of sheltered workshops, but these are always under threat because of state budget deficits. Noah has been asked to leave some programs because he was too low-functioning. For several years, we have been trying to find a day program where he might interact with others and perhaps perform some simple, menial job. We have long since given up any hope that he might continue in adulthood the behavioral therapies that are now considered standard for autistics; unless the family is willing to pay the bulk of the cost, there is very little out there for men and women like Noah.
For purposes of fund-raising and awareness-raising, autism has been portrayed as a childhood disease. The federal Department of Health and Human Services has characterized it as a “disorder of childhood.” There are practical reasons for this: early intervention has been shown to be the most effective therapy. The trend in autism treatment has been to steadily lower the age at which intensive intervention commences — as early as five months, according to some experts. Yet autism is not a degenerative condition; the vast majority of those 1 in 150 children who are afflicted will survive to adulthood.
As I spoke with the experts, I began to see that the focus on children had influenced not only the marketing of autism, but also research and treatment. It seemed the majority were interested in children only, the younger the better.
“The best time to look is at the early ages, when autism is developing,” Sophia Calimaro, vice president of research at Autism Speaks, told me a few months ago, explaining that was also where there had been the most treatment success. “I’m not making excuses, but that’s really why more research into adults with autism hasn’t been done.”
Low-functioning adult autistics are viewed with sympathy but not much scientific inquiry. No one has broken down how many dollars are actually flowing to adult autistics, but at the International Meeting for Autism Research in Seattle in May 2007, I counted more than 450 papers and presentations and three dozen talks on autism given by academics and specialists; of those, only two dealt with low-functioning adults, and neither included a cohort large enough to be statistically relevant.
The careful measurements of brain function, or dysfunction, were almost all done on children. A few cognitive and emotional development studies dealt with adults, but these were overwhelmingly focused on high-functioning autistics and people with Asperger’s syndrome.
Autism Speaks, the major sponsor of autism research projects, has not broken down the proportion of funds that go to adult-oriented research, but Mr. Bell, whose teenage son is autistic, laments that “it’s low, too low. ... We have to change the paradigm for those of us who have kids who are going to grow up and need more and better services.”
That change can’t come soon enough. Even with state-of-the-art early intervention — eight hours a day, seven days a week — many autistics will need support throughout their lives. The reality is that very few, perhaps only 10 percent, of those as severely autistic as Noah benefit from the current interventions to the point where they become functioning members of society.
If the current C.D.C. estimation of prevalence is correct, then there will be an awful lot of adult autistics who need lifetime support and care. Noah’s life has been a grim study in how scarce those resources are. Without them, his behavior has regressed.
A recent “psychological and psychopharmacological” report by the California Department of Developmental Services said Noah exhibited a “failure to develop peer relationships, a lack of social or emotional reciprocity,” and it described some of his “maladaptive behaviors” like “banging his head against solid surfaces, pinching himself and grabbing others.”
“Noah may also,” it noted, “intentionally spit at others, pinch or scratch others, dig his fingernails into others, and/or pull others’ hair. He may bite, head-butt and hit others; throw objects at others, and hit/slap his head when he is highly agitated.” He is a handful.
Now, imagine a few hundred thousand Noahs.
Karl Taro Greenfeld is the author, most recently, of “Boy Alone: A Brother’s Memoir.”

Google Lime Scholarship for Students with Disabilities

2009-05-04T16:40:00.000-04:00

Introducing the Google Lime Scholarship

We're pleased to announce the most recent addition to our scholarship programs, the Google Lime Scholarship for Students with Disabilities. We're partnering with Lime to offer scholarships to students with disabilities who are pursuing university degrees in the field of computer science in Canada or the U.S. Lime is a not-for-profit organization that brings together global corporations and people with disabilities, bringing to light an untapped source of talent. Scholarships will be granted for the 2009–2010 academic year, and recipients will be invited to attend an all-expenses-paid retreat at the Googleplex in Mountain View in 2010.

W e hope that this program will increase opportunities for students with disabilities and encourage them to pursue careers in computer science. We also hope to foster long-lasting relationships through which these students can support each other over the course of their academic studies.

The deadline to apply for this year's Lime Scholarship is June 1, 2009. For complete details, visit www.google.com/jobs/scholarships.

Posted by Meghan O'Farrell, Talent and Outreach Programs Specialist

Details at:
Google Lime Scholarship for Students with Disabilities
http://www.limeconnect.com/google.html
http://www.google.com/support/jobs/bin/static.py?page=students.html&sid=scholarships&src=scholarships

A great hike for Kulanu teens

2009-04-30T14:52:00.001-04:00

This past Sunday Kulanu’s SNAP, teen activity program , enjoyed the first beautiful day of the season with a fun hike through Sands Point Nature Preserve. Jonathan Cooper lead the group through many trails and pointed out the flora, fauna, and wild animal indigenous to that are of Long Island. SNAP members were able to get up close and personal with the horses at the local stable and hiked along the beach. A beautiful picnic lunch rounded out a wonderful day. A very special thanks to all the volunteers who helped make this day fun for everyone.

If you are interested in participating in future SNAP events, or know someone who is, please contact Leiby at 516-569-3083 or via e-mail Leiby@kulanukids.org

COMMUNITY RESOURCE FAIR SUNDAY, MAY 3, 2009

2009-04-29T15:30:00.000-04:00

Kulanu presents a free

COMMUNITY RESOURCE FAIR

SUNDAY, MAY 3, 2009

For parents of children and young adults with special needs
9:00 a.m. to 12:00 p.m.
Hebrew Academy of the Five Towns and Rockaway
33 Washington Avenue
Lawrence, New York 11559

Featuring speakers and information on the following topics:
Early intervention - School programs – Recreation – Socialization – Counseling –
Support Groups – Health

Keynote Speaker
Becoming an empowered parent – let your voices be heard
Maggie Hoffman
Director, Project DOCC (Delivery of Chronic Care)

Ms. Hoffman is the parent of a child with special needs with extensive experience in advocating for her child and helping prepare other parents to learn how to tell their story and access community resources.
Join us for the opportunity to learn about agencies and meet professionals providing resources to children and young adults with special needs. This resource fair will also give you the opportunity to meet and share stories with other parents. The keynote address is scheduled for 10:15 a.m.

For more information contact Mark Hoffacker, P.A.R.C. Coordinator at 516 569-3083 or mark@kulanukids.org. Pre-registration is not required. Call if you need child care.
__________________________________________________________________

College Coaching: Helping Students on the Autism Spectrum

2009-04-29T14:57:00.000-04:00

Save the date: May 18-22, 2009, 9:00 AM-2:30 PM

College Coaching: Helping Students on the Autism Spectrum
Asperger Syndrome - Autism Spectrum Disorders Institute

Transition to Post-Secondary Education
Presented by Lynda Geller , PH.D., National Expert on Asperger Syndrome
Adolescents with Asperger Syndrome and Autism Spectrum Disorders often have superior intellectual ability but struggle with social and organizational aspects of life in college. This unique training program will prepare individuals to support students with AS and ASL in making a successful transition to higher education. Contact Sherisse Alvarez (salvarez@bankstreet.edu; 212-875-4461) to reserve a space. Institute Fee: $875

News Source for Developmental Disability Issues

2009-04-29T14:39:00.002-04:00

Check out this website for a variety of news links regarding issues related to Developmental Disabilities.

DisabilityScoop www.DisabilityScoop.com

Learn to Ride a Bike - Special Needs and Neuro-Typ.

2009-04-28T13:39:00.001-04:00

Fyi

Thanks to Julia for this one. . .

If you know anyone in need of learning to ride a two-wheel bike, please go to www.bikeny.org and sign up for the free class. They will give children beautiful, professional helmets if they need one and size it for them, fix their handlebars and seat to match their body and more................

You can stay for the full 2 hrs if you like and even s ign up for more free workshops, if needed. We took our son today and he DID learn to ride on two wheels!!! Please pass this on to anyone who needs this. It's for typical and special needs kids.

(no Long Island locations but many locations in Queens – upcoming dates for kids below) http://www.bikenewyork.org/education/classes/learn_to_ride.html

http://bikenewyork.org/

Why Retain? Retention and Reading Problems

2009-04-21T13:17:00.000-04:00

The Real Issue: Reading
If your child could have learned to read with the type and level of instruction he is currently receiving, he would have already learned to read.

The principal, who says retention is beneficial, is just attempting to take the focus off the real issue. Your child has not learned to read even after several tiers of increased intensity of instruction.
1. You should copy the National Association of School Psychologist's (NASP) position statement on grade retention to clarify the retention discussion.
2. Write a letter requesting a complete evaluation to determine if your child has a disability.

Go to this Parent Information Center website to find sample letter requesting an evaluation. On the left hand column, click on "Special Education" and then click on "Sample Letters."
Read Sue Whitney's article Why Retain? It Didn't Work the First Time.
Co-author of Wrightslaw: No Child Left Behind, Sue Whitney writes Doing Your Homework, a series of articles about reading, research based instruction, school improvement, and creative advocacy strategies.
back to the top

________________________________________
The Definition of Reading
The term 'reading' means a complex system of deriving meaning from print that requires all of the following:
(A) The skills and knowledge to understand how phonemes, or speech sounds, are connected to print.
(B) The ability to decode unfamiliar words.
(C) The ability to read fluently.
(D) Sufficient background information and vocabulary to foster reading comprehension.
(E) The development of appropriate active strategies to construct meaning from print.
(F) The development and maintenance of a motivation to read.
20 U.S.C. § 6368 (5) Wrightslaw: No Child Left Behind, p. 241.
Reading Resources
Florida Center for Reading Research
http://www.fcrr.org/

This is information on what an appropriate reading evaluation should contain.

The National Center for Learning Disabilities has an excellent checklist to use to refine your concerns and to help you ask the referral team to investigate all areas of concern.

The American Federation of Teachers website has an excellent article about the need to avoid delay in getting appropriate instruction, Preventing Early Reading Failure.

Framework for Informed Reading and Language Instruction: Matrix of Multisensory Structured Language Programs. This publication from the International Dyslexia Association explains different reading programs and what they cover. These programs, when properly implemented, have been successful in teaching students to read, write, and use language.
4 Great Definitions of Reading in No Child Left Behind
Reading at Wrightslaw

back to the top

________________________________________
Don't Allow the School to Retain Your Child
The principal is incorrect. Research does not indicate there are benefits to retention.
Retention is not an appropriate intervention. There is clear evidence that retention does not work - and that it damages children.
Review the article "Waiting to fail" Instead of Teaching a Child to Read.
Insist that the school use a research based reading program that is implemented by a highly skilled, trained reading teacher.
If you are dealing with a retention problem, you must educate yourself before you can advocate for the child. Download and read these articles at Retention and Social Promotion.

back to the top

________________________________________
Sample Letter to Request the School NOT Retain Your Child
This sample letter describes a parents' concerns about the school's proposal to retain their child.
The tone of the letter is polite and businesslike. The letter does not blame school personnel or criticize. Instead, the parents describe their concerns about their child's lack of progress, their concerns about the school's proposal to retain her, and propose a solution to the child's problems.
It is an example of how you can use story-telling in letters that document events and describe your concerns. The parents sent this letter after the school proposed to retain their child.
From the sample letter:
"I am unaware of any research that states children with reading disabilities benefit from grade repetition."
"The decision of Placement is a “team” decision, not the decision of one person. It is my understanding that one person cannot make a unilateral decision outside of the team process."
"Although I am opposed to retaining Emma in first grade, I welcome the opportunity to meet with the special education team to learn how the District proposes to provide Emma more intensive services to remediate her reading deficits and/or the possibility of an alternative educational setting which would enable Emma to progress and master the general educational curriculum while receiving intensive instruction to close the gap between her and her nondisabled peers...."
Download a copy of the Sample Retention Letter.
More about advocacy through Writing Letters.

Tug of War Over Costs to Educate the Autistic

2009-04-21T13:16:00.000-04:00

April 19, 2009

Tug of War Over Costs to Educate the Autistic

By AMANDA M. FAIRBANKS

The eight children, ages 5 to 11, who attend the Brooklyn Autism Center Academy need intensive individual instruction to cope with a neurological disorder that can make achieving academic progress slow and grueling.
During the course of the day, one teacher is paired with each child. After successfully completing a task, students are rewarded with a spoonful of vanilla pudding, time on a piano or a few minutes in a bouncy castle. The system repeats itself, interspersing work with small breaks.
“Every child with autism can learn,” said Jaime Nicklas, 32, the school’s educational director. “If they are not learning, it is our responsibility to change our teaching procedure, so they can make the progress they are capable of.”
But this type of focused instruction comes with a high price: The academy’s annual tuition is $85,000. The parents of one of the students, Ruby Kassimir, 5, the only girl in the school, took out a home equity line of credit on their home in Queens to help pay the tuition. “There just aren’t that many options available,” explained Ruby’s mother, Sue Laizik, a project coordinator at Columbia University.
As the number of autism diagnoses has risen, the extraordinary cost of educating the children has become a growing point of contention. In 2001, the city’s Department of Education listed 3,278 students with autism; by 2008, that figure had more than doubled to 6,877.
The public school system is required by law to provide an appropriate education for such children, even if it means paying for private school tuition if there is no public school option (although, as Ruby’s parents found, getting the school system to pay is not always easy).
“The crux of the matter is that we need to have a public debate about how much are we willing to invest in making individuals who are disabled, and sometimes profoundly disabled, have a meaningful level of membership in society,” said Gil Eyal, a sociologist at Columbia University who has done research on autism.
Of the more than 6,800 children with autism recorded by the city’s public schools, 4,200 are enrolled in special education classes with a small student-to-teacher to ratio, 285 students are part of a program where children with autism are taught alongside regular education students and 28 are in a charter school with a one-to-one ratio between teachers and students. That school, the New York Center for Autism Charter School, is the only public school in New York City offering intensive one-on-one instruction.
Other autistic students attend private schools from a list of those approved by the state, and their tuition, which ranges from $30,800 to $48,100, is paid by the city’s Education Department. Finally, if parents are dissatisfied with any of the options offered by the public schools, they can choose another private school, one not on the list, at their own expense and seek to have the cost reimbursed by the city.
For all special education students, the department paid $88.9 million for private school tuition last year, compared with $57.6 million in 2007. “Private school tuition claims are a growing burden for us,” said Michael Best, the Education Department’s general counsel.
Ms. Laizik, Ruby’s mother, entered her daughter in the lottery for the New York Center for Autism, and said she broke into tears when she learned that Ruby had not gotten one of the spots on the waiting list. “That’s when it really hit me, how hard it’s going to be,” Ms. Laizik said.
Three separate evaluations of Ruby, between the ages of 2 and 5, emphasized the need for one-to-one instruction.
So when she was not able to enroll Ruby in the public charter school, Ms. Laizik sent her to the private Brooklyn Autism Center Academy and filed a claim with the Education Department seeking tuition reimbursement.
After a hearing, a departmental judge ruled in March that Ruby’s parents were entitled to a 30 percent tuition reimbursement because the city had failed to offer Ruby appropriate placement. They are now appealing to the New York State Education Department’s Office of State Review for the remainder of the tuition.
For the parents of autistic and other special-needs children, springtime is usually when they hear back from the city’s Education Department about their claims for private school tuition reimbursement.
During the 2007-8 school year, there were 4,375 reimbursement hearing requests for special education students, 462 of them for children with autism.
“We are concerned that some parents see this as a way for us to pay for private school,” Mr. Best said. “It’s not supposed to be a vehicle to get private school tuition if there’s something appropriate available in the public schools.”
But parents of autistic children and their advocates argue that any hope for progress requires the kind of concentrated intervention that the public schools cannot always provide.
“The giant elephant in the room, if one in 150 children are being diagnosed with autism, is that they have the same life expectancy,” said Gary S. Mayerson, a lawyer who has represented more than 1,000 families, including Ruby’s, making claims for tuition reimbursement. “Either invest the money now for effective programming or find that your efforts are inadequate.
“At some point you may be staring at the prospect of an even more expensive residential placement — and the state will be footing the bill.”
Despite the onerous financial burden they are confronting, Ruby’s parents are pleased with their decision, having seen that their daughter has made significant progress since she started at the school in September.
Ultimately, the goal is for Ruby to be able to learn in a mainstream classroom.
“The thing that stays with me the most is what kind of life she will be able to have,” said Ruby’s father, Ron Kassimir, 51, an associate provost at the New School.
His wife, Ms. Laizik, added, “When you have a child like Ruby, you realize how much of a role you have to play in that outcome, how involved you have to be to affect that outcome — especially early on, when the stakes are so very high.”

The New York Times

ADHD AND AUTISM SPECTRUM DISORDER LECTURE Wednesday, May 6th: 8pm

2009-04-20T13:30:00.000-04:00

CHADD OF SUFFOLK COUNTY

PRESENTS

ADHD AND AUTISM SPECTRUM DISORDER

Wednesday, May 6th: 8pm

John Pomeroy, M.D. Clinical Director, The Cody Center,
and Carla DeVincent, Ph.D.,
Presenting the latest genetic research regarding ADHD and Autism
Followed by a question and answer session

Location: Courtyard by Marriott
5000 Express Drive South
Ronkonkoma, NY 631 612-5000
( Exit 60 L.I.E., service road )
Open to the Public !!

Support Groups: 7:00 PM
Lecture: 8:00PM

Requested $5.00 Lecture donation
for non-members, Please

Please visit our website for more info
www.chadd.net/160
Questions? Email: LTibett@polyrnd.com

Building a Future: Self-Determination for People with Developmental Disabilities - Full Day Conference

2009-03-30T13:44:00.000-04:00

Building a Future: Self-Determination for People with Developmental Disabilities

Friday, May 8, 2009, from 8:30am to 3:00pm.
Molloy College, Suffolk Center
7180 Republic Airport
East Farmingdale, NY (off of Route 110)
Fee is $5 (will be collected at the door)

Are you worried about what your child with developmental disabilities will be doing after high school?

Learn about self-determination, an alternative to traditional agency-based programs. Self-determination allows participants, family, friends, and chosen staff to design and implement a completely individualized plan, based on the person’s interests, abilities, and support needs.

Come to a full day conference featuring self-advocates, parents, and professionals who are currently involved with self-determination. Register by sending an email to liselfd@gmail.com, or call 631-418-7991 for more information or to register. Please bring a bag lunch; we will supply drinks and a mid-morning snack.

Charting a Course After High School

2009-03-30T13:41:00.002-04:00

The Individuals With Disabilities Education Act calls for schools to help students develop a plan that will carry them to college or the workplace, but the requirement remains a challenge for families and educators alike.
By Christina A. Samuels

Kathy Eckert-Mason doesn’t think she's an unrealistic mom.
Yet as she worked with school officials on a plan that would provide a smooth path from high school to college for her son, Rick, she wondered if teachers saw her that way.
Rick Mason, now 20, has autism. He had always been included in regular classes, but with an aide providing support to him and other classmates with special needs. His mother wanted his high school to help him attain the self-sufficiency to handle classes at an out-of-state university.
His teachers, she believes, saw his prospects as less expansive. They suggested he could attend community college in their hometown of Corvallis, Ore., while living at home.

Kathy Eckert-Mason and her son Rick, who has autism, worked with his high school to help him go to college. Federal special education law requires that students with disabilities have transition plans, a challenge for schools and families.
—Chris Landsberger for Education Week
For students with disabilities, planning for life after high school is regulated by the Individuals with Disabilities Education Act, just like other aspects of special education. But despite tweaks to the federal law over its 34-year history—including a relatively recent change that requires schools to give students a summary of their strengths, skills, and needs when they graduate—developing a solid transition plan remains one of the most challenging parts of the IDEA to carry out.
Ms. Eckert-Mason said that in her situation, "I walked away kind of disillusioned by it all."
Through her own professional contacts as a vocational-rehabilitation counselor for the state of Oregon, Ms. Eckert-Mason arranged job-shadowing opportunities for her son, assisted him during college visits, and now offers support as he attends the University of Utah, in Salt Lake City, where he is a sophomore majoring in health education.
Ms. Eckert-Mason said she thinks high school administrators "have this one mold, and this is what you do. Sometimes, the special education staff gets stuck in that."
Moving Into Adulthood
The U.S. Department of Education is funding an extensive study of students who were ages 13 to 16 in 2000, as they moved into adult roles. In 2004, researchers released a report that focused specifically on students with disabilities. Among the findings:
• School staff members reported that about 70 percent of students with transition plans participated actively by providing input into the plans. Twelve percent of those students took a “leadership role.”
• About 6 percent of secondary school students with disabilities reportedly did not attend their individualized-education-program meetings that dealt with transition planning, and about 15 percent had parents who did not attend.
• Overall, about half of students with disabilities planned to go to college, but that intention varied from 10 percent of students with mental retardation to more than 70 percent of students with visual impairments.
• Students from upper-income households were more likely than those from lower-income families to plan on attending a college or university, and to have schools make contacts with colleges and universities on their behalf.
• Low-income and African-American students were more likely to have vocational training, placement, or support identified as post-school needs.
SOURCE: “Transition Planning for Students with Disabilities: A Special Topic Report of Findings From the National Longitudinal Transition Study-2”
As the IDEA has moved from mainly ensuring compliance by school officials to promoting positive outcomes for students with disabilities, lawmakers have added rules that require schools and students to look to the future.
For example, the law says postsecondary goals should be a part of students' individualized education programs, by at least the time they turn 16, along with measurable steps to achieve those goals. Students are to be involved in creating their own IEPs as much as possible, and community organizations should be part of the planning if a student will need continuing help after leaving school. The IDEA allows students to remain in school until at least age 21.
There is evidence that the changes have created better postsecondary outcomes for students with disabilities. A federally financed long-term study of such students, released in 2004, showed that almost 90 percent had started transition planning as outlined by the IDEA. School personnel reported that about three-quarters of students with disabilities were following a course of study that would help them achieve their goals.
But the very nature of the IDEA requires students, parents, and teachers to make a significant mental shift as students near the end of their time in high school. When students are covered by the IDEA, they can be relatively passive recipients of federally mandated services. Students will not lose out on services for not showing up to an IEP meeting, for example, even if they’re invited to come.
But all that changes when high school ends. Students have to actively pursue the accommodations they need for success at work and in higher education, and without the ability to advocate for themselves, pushing for those accommodations could be a struggle. Teachers and parents, who have spent years supporting a student, also have to learn to take a hands-off role, particularly if a student plans to go to college.
"Colleges and universities don’t want to hear from Mommy," said Stan Shaw, a professor at the University of Connecticut, in Storrs, and the co-director of the university’s Center on Postsecondary Education and Disability.
What the Law Requires
For precollegiate students with disabilities, transition planning is governed by the federal Individuals With Disabilities Education Act. Among the provisions:
• Individualized education programs are to include “appropriate measurable postsecondary goals based upon age-appropriate transition assessments related to training, education, employment, and, where appropriate, independent living skills.”
• Transition planning is to begin no later than the first individualized education program in effect when the student turns 16.
• The school must invite the student to participate in any IEP meeting that includes discussion of postsecondary goals.
• Districts must complete a “summary of performance” for a student leaving school that “includes recommendations on how to assist the child in meeting the child’s postsecondary goals.” The summary should include “academic achievement and functional performance,” but otherwise the law does not make requirements on the states.
NOTES: The IDEA does not apply to students who are attending college or other postsecondary institutions. Those institutions are governed by Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act. Generally, those laws do not require institutions to modify their curricula, though they are required to offer accommodations, which could include extended testing time, sign-language interpreters, or a reduced course load.
Students are also not required to inform their postsecondary schools of their disabilities, and colleges are not required to assess students for their special needs. SOURCE: U.S. Department of Education
Another complication is that the IEP—which is the key documentation of a disability for a precollegiate student—has no sway over postsecondary institutions. Instead, colleges and universities often require an independent evaluation of a disability, and the IDEA has made clear that local school districts are not required to provide testing for that purpose, said Larry J. Kortering, a co-principal investigator with the National Secondary Transition Technical Assistance Center and a professor of special education at Appalachian State University in Boone, N.C.
A 2004 addition to the IDEA requires that students receive a "summary of performance" from their school that outlines the students’ strengths, weaknesses, and need for accommodations. Those who backed the creation of such a document said the information would help students be active advocates on their own behalf. At its most useful, the document could also serve as the proof of a student’s need to receive accommodations from a college or university, if the postsecondary institution chose to accept it.
But districts have not used the potentially powerful document to its fullest, said Mr. Shaw, the University of Connecticut professor.
Because the IDEA and its accompanying regulations do not clearly define what has to be in a summary of performance, Mr. Shaw organized a task force of representatives of national professional organizations and disability advocacy groups to develop a model template. The template includes a clear identification of a student’s disability, a list of postsecondary goals, a description of the student’s current performance along with any accommodations or modifications to the curriculum used by the school, and a set of recommendations for how to achieve success after leaving high school. Depending on the student, the recommendations could be for adaptive devices, assistive services, or compensatory strategies.
"The attempt was to make something useful and practical and not difficult to fill out," Mr. Shaw said. However, some states have responded to the requirement "with something that can be filled out on a postcard."
Mr. Shaw and his colleagues at the university’s center on postsecondary education and disability tracked the adoption of the model template in states. Of 43 states surveyed, 90 percent had created state forms that included all the elements required by the federal special education law. Nine states had adopted the model template directly.
Seventeen states required attaching test scores to the document, which is not recommended under the federal law, but is included in the model template because colleges typically want such information. But only 12 states require students to complete any part of the document, which Mr. Shaw said is an important element.
"The law, unfortunately, was not very prescriptive. But everything we know says that self-determination is critical for these students," he said.
________________________________________
Even without a summary of performance, some problems could be improved by better communication between school districts and colleges, experts say. Unfortunately, the two aren’t always used to talking to each other, said Mr. Kortering, with the national transition center.

ALISON THOMAS, with sons Christopher, 16, Andrew, 14, and Zackary, 17, whose disabilities include Asperger’s syndrome and 'mood disorders': "Here’s what I’ve learned: It’s all about networking. You have to tap every avenue you can possibly identify."
—Jessica Rinaldi for Education Week
"Higher ed has got to quit being this ivory tower where we say we have all the answers. We've got to say, 'What do we need to do to help these kids be successful?'" he said. By the same token, he added, "public school folks have got to do a better job of talking."
Transition planning doesn’t pose a challenge just for the college-bound. For students who will rely on community support after they end school, the depth of transition planning can end up being dependent on where they live.
Elsie May Gladding, a retired minister with the United Methodist Church, ran into the issue when looking for services for her daughter, Emily Thompson, 20, who has autism.
Ms. Gladding said she was happy with the services available to Emily when the family lived in Frederick, Md., located about 50 miles from Washington and Baltimore. The program she was enrolled in spent half of a school day training students in "life skills," and Emily, then 18, worked as a volunteer assistant in a medical center for the rest of the day. The transition coordinator for the program was plugged in to the community, and could direct students to the different vocational options available.
The students involved in the program were thriving, Ms. Gladding said. "We didn’t know anybody who was sitting on the couch."
A move two years ago to rural Alton, Va., just north of the North Carolina border, was a shock for her. The community “had nothing of substance for these kids,” she said.
"The high school worked really hard at trying to put together something that would work, just trying to give her things to keep busy," Ms. Gladding added. Eventually, the high school modified Emily’s IEP to include a private school placement that provides job and life-skills training similar to the program Emily attended in Maryland.
"We've been able to receive services, but we had to work very hard for it," Ms. Gladding said. “It’s totally inconsistent across the state. The local school districts just do what they can.”
While the IDEA offered parents of college-bound students a helpful document through the summary of performance, the 2004 re-authorization of the law took away a requirement that schools follow up multiple times with outside community-support agencies.
The U.S. Department of Education, in explaining the change, said dropping that requirement would ease the paperwork burden on schools and allow them to focus on "active strategic partnerships" with agencies that provide support to people with disabilities. The change also saves districts money, the department said.
Transition planning for students with disabilities continues to be the focus of several initiatives. For example, the National Association of State Directors of Special Education, in Alexandria Va., heads a "community of practice" around the issue that links several states that are working to improve their planning for students with disabilities. Ten states, more than a dozen national organizations, students, and federal agencies like the U.S. Departments of Labor and Justice are involved in that effort.
The federal Education Department also funds technical-assistance centers nationwide to help districts on the topic. One of the newest, the Transition Education Network, will provide professional development to districts in Florida. The network, with headquarters at the University of South Florida’s campus in St. Petersburg, will also work with preservice and current teachers, said Lyman Dukes III, the principal investigator and an associate professor of special education at the university.
Transition "is a challenge and it remains a challenge. There are so many pieces of the puzzle that it is very easy to drop one," Mr. Dukes said.
Parents are also seeking out their own sources of information. Alison Thomas has six sons, two of whom—Zackary, a 17-year-old junior and Christopher, a 16-year-old sophomore—are in the beginning process of planning for life after high school. Their disabilities include Asperger's syndrome.
Ms. Thomas, who lives in Allen, Texas, and is the director of communications for a church, worries that the academic bar has been set too low for her children. She recently attended a transition conference in Austin and came back armed with ideas, including pushing for a student-led IEP process. Through that process, she hopes the school will learn more about her sons’ hopes for their lives after they leave high school.
"Here's what I've learned: It's all about networking," Ms. Thomas said. "You have to tap every avenue you can possibly identify."
Coverage of pathways to colleges and careers is underwritten in part by a grant from the Carnegie Corporation of New York.© 2009 Editorial Projects in Education

UJA-Federation Autism Symposium Monday, May 11, 2009

2009-03-24T13:36:00.002-04:00

UJA-Federation Autism Symposium
Promoting Inclusion: Best Practices for Education, Vocation,
and Socialization Across the Age Continuum
A symposium for agency executives, program directors, school administrators, and parents.
Organized in Collaboration With The Hilibrand Foundation
Monday, May 11, 2009
8:30 a.m. – 4:00 p.m.
UJA-Federation of New York
Seventh-Floor Conference Center
130 East 59th Street
New York City
Through a keynote presentation, panel discussion, afternoon lecture, and breakout sessions, this symposium will explore best practices to promote inclusion for children and young adults with autism. In the morning, we will discuss models for vocation and independent living for young adults; and in the afternoon, we will focus on social-skills development across the age continuum.
Keynote, Peter F. Gerhardt, Ed.D., President and Chair of
Scientific Council at the Organization for Autism Research (9:15 –10:15 a.m.)
Today, families and learners with an autism spectrum disorder (ASD) are beginning to redefine the outcomes of the transition process beyond employment to include such measures of quality of life as personal satisfaction, choice, control, and happiness. This presentation will provide an overview and practical suggestions for supporting adults with an ASD label to lives of competence and quality. Particular attention will be paid to understanding social challenges that can limit individual opportunities, positive behavior support, and personal independence across multiple environments.
Q&A With Keynote (10:15 – 10:45 a.m.)

Break (10:45 – 11:00 a.m.)

Panel: Promoting Independence: Best Practices to Achieve Success in the Workforce, Institutions of higher education, and Independent Living (11:00 a.m. – 12:00 noon)
This panel will address multiple strategies to promote a successful transition toward vocation, higher education, and independent living for young adults spanning the autism spectrum. The panelists will discuss the range of skills necessary to obtain employment, higher education, and live independently, as well as the additional roles of job coaches, professional advocates, and parents in assisting with the transition process and offering ongoing support. Panelists will further provide insight as to best supporting host agencies to ensure a mutually successful experience for both the employee and employer.
Panel will feature:
• Michael Storz, M.B.A., Director of Asperger’s Syndrome Adult Transition Program and Executive Vice President of Chapel Haven, Inc.
• James Rein, President of B&R Resources, Inc
• New York State Vocational and Educational Services for Individuals With Disabilities (VESID)
 Debbie Gross, Senior Vocational Rehabilitation Counselor at VESID
 Paola Nappo, Senior Vocational Rehabilitation Counselor at VESID

Q&A With Panelists (12:00 noon – 12:30 p.m.)

Lunch (12:30 – 1:15 p.m.)

Afternoon Lecture: No More Meltdowns: Positive behavioral supports to manage and prevent challenging behaviors.: Jed Baker (1:15 – 2:00 p.m.)
Students on the autism spectrum often present with difficulty regulating their feelings and interacting socially. This presentation will describe how to handle meltdowns and design effective behavior plans to prevent these moments and reduce frustration and anxiety.
Q&A With Jed Baker (2:00 – 2:30 p.m.)

Break (2:30 – 2:45 p.m.)

Afternoon Breakout Session (2:45 p.m. – 3:45 p.m.)
Title: Social Skills across the age continuum
Presenter: Jed Baker, Ph.D., Director of the Social Skills Training Project
Description: This breakout session will address social skills and positive behavioral supports for students with Autism, Aspergers and other Social-Communication Problems. We will review strategies to motivate students to learn, ways to teach social skills, how to generalize skills into the natural setting and increase acceptance and tolerance from peers.
Title: Social Groups with LST – Language/Sensory/Technology
Presenter: Phoebe Tucker, Speech/Language Pathologist, Augmentative/Alternative Communication Specialist, and Director of the Montano Assistive Technology Center — A Division of United Cerebral Palsy Association of Southern Connecticut
Description: Learn the role of the three senses and how they effect communication outcomes. Preview software and voice-output devices that solidify concepts. Discover a pioneer intervention — virtual reality — as it relates to social interaction. Learn strategies for intervention that include the nuances of communication, critical for an older person’s success with peers and prospective employers. Win Point for Technology prizes based on your interaction during presentation
Title: Best Practices for Inclusion in the School Environment: A Case Study of an Elementary School
Presenters: Julie Cohen, Ph.D., Private Practice With Children and Families in Stamford, Connecticut, and Former School Psychologist at Parkway School Greenwich, Connecticut; and Sandra Mond, Ph.D., Educational Consultant
Description: This presentation will offer the discussion of an effective inclusion model in a school community, including techniques to support classroom and special-education teachers, paraprofessionals, parents, special needs and typical students, as well as other members of the school community, such as cafeteria workers, custodians, and bus drivers. Some of these practices are modifications in programming and curriculum, parent support groups and workshops, sibling groups, a "circle of friends," and inclusive social-skills groups. Both positive and negative experiences will be explored, and presenters will welcome input and questions.
Title: Social-Skills Instruction for Transition-Age Youth With ASDs
Presenter: Daniel Baker, Assistant Professor of Pediatrics at the Elizabeth M. Boggs Center on Developmental Disabilities, UMDNJ-Robert Wood Johnson Medical School, Department of Pediatrics in New Brunswick, New Jersey
Description: Social-skills problems are a significant barrier for many people with ASDs. This interactive breakout session will lead attendees through a process for understanding why social-skills problems are likely and then provide a “menu” of common-sense, easy ways to improve social skills. This presentation will focus on transition-age youth.
Conclusion and Evaluations (3:45 – 4:00 p.m.)

Register online
http://www.ujafedny.org/site/c.ggLUI0OzGpF/b.5030589/k.FA0A/Autism_51109_Landing.htm
For more information, please contact Alex Roth-Kahn at 1.212.836.1762 or
roth-kahna@ujafedny.org.

$25* registration fee.
For more information or to request an assisted listening device, please contact Alex Roth-Kahn at 1.212.836.1762 or roth-kahna@ujafedny.org.
This symposium is intended as an educational tool for participants. UJA-Federation neither warrants nor represents that the symposium will provide all relevant information concerning autism, or that the information provided will apply to or be appropriate for all participants. UJA-Federation assumes no liability for the information, which is being provided to you solely for your personal evaluation and general information. UJA-Federation urges each participant to consult with appropriate professionals to determine the applicability of the information to your personal and medical needs.

*The cost represents the value of the event and is not tax deductible.

130 East 59th Street, New York, NY 10022 | 1-866-UJA-FED1

Make a Difference! Come to First Ever Autism Advocacy and Lobbying Day in Albany, Tuesday, 3/24

2009-03-23T14:06:00.000-04:00

New Yorkers, come to the first ever autism advocacy and lobbying day in Albany on Tuesday, March 24th. If we don't speak up we can't be heard. Albany needs to hear your voice.

The threat to our children posed by the Governor's budget is real, but the opportunities created by our advocacy are real too.

Stop the sweeping budget cuts proposed for early invention, special education pre-school, and special education

Pass real health insurance reform for people with autism. We pay our premiums and it is long overdue for our children to receive the healthcare they need.

Pass vaccine rights legislation. Three bills are pending that would assure informed consent rights and give vaccine choice to the people of New York, including a philosophical exemption to vaccine mandates.

Make a difference and come to the first autism advocacy day in Albany!

Bus leaving from Roosevelt Field 6:30 am and returning at approximately 6:30 pm. Click Here to register, only $30.

Make appointments with your State Senator and Assemblymember before hand. If you need help contact John Gilmore at jgilmore@autismunited.org or call (516) 933-4050.

RSVP to Lisa Rudley at lisarudley@yahoo.com

Schedule:

10:30 Gather at the East Steps of the Capitol for a rally, information, speeches from friends in the legislator, including Assemblymembers Harvey Weisenberg and Mark Schroeder.

12:00 Meet with legislators

This event has been endorsed by the following organizations, Autism Action Network, Autism One, Autism Society of America-Albany Chapter, Autism Society of America-Bronx Chapter, Autism Society of America-Nassau/Suffolk Chapter, Autism Speaks, Autism United, Autism United-Westchester, Foundation for Autism Research and Media, Generation Rescue, National Autism Association NYC Chapter, SAFEMINDS, Schafer Autism Report, Talk About Curing Autism, Unlocking Autism.

Kitchen Keepsakes: A Treasury Of Recipes By Kulanu

2009-03-16T16:50:00.001-04:00

Kitchen Keepsakes:
A Treasury Of Recipes By Kulanu

By Rochelle Maruch Miller
Published on Thursday, March 12, 2009

Whoever coined the adage “You can’t judge a book by its cover” certainly did not have Kitchen Keepsakes in mind. A collection of delicious culinary creations, the book’s charming cover beckons you to peruse its pages, and features recipes shared by some of the most creative cooks in the Kulanu family... as well as by outstanding cooks of different communities. Kitchen Keepsakes represents the collaborative efforts of a team of dedicated individuals, every one of whom volunteered their talents, time, and efforts.

Working in tandem with her Kulanu Cookbook Committee and volunteers, and with the help of Mark Honigsfeld and Allysa Sterba, Chairperson Ellyn Weinstein has brought this fundraising endeavor to beautiful—and delicious—fruition. Although three of the four committee members are not parents of children in the Kulanu program, they are committed to Kulanu’s vision of blending families with children of varying abilities. That its first printing is almost sold out, by word-of-mouth alone, is not surprising.

Compact enough to be an integral and valued part of every kitchen, Kitchen Keepsakes features over 450 treasured recipes, every one tested and approved by volunteers. Because no one was paid in the creation of this book, all of the proceeds go directly to benefit Kulanu’s precious children. Designed to be durable, Kitchen Keepsakes will afford every cook years of culinary ar tistry. It is a three-ring binder “go-to” book, packed with valuable information on the inside covers. As well, it features 16 pages of food facts, helpful hints on the back of every tabbed category divider, and a recipe pocket on the back in which to store your papers, with a reminder on how to properly set a table.

“Our objective was to make a book of recipes from some of the best cooks and help create new family favorites.” Ellyn Weinstein told the 5TJT. “We tried to make the recipes family-friendly, so that even a beginner cook could follow the recipe directions, or parents and children could cook together. Kitchen Keepsakes has something for everyone: vegan, sugar-free, lactose-free, and nut-free.”

We found the recipes absolutely delicious, and the directions to be beginner-friendly, child-friendly, and allergen-avoiding. Of special interest is the book’s “This and That” section, which tells the readers how to make their own herb blends, flavored oils, and vinegars and is a treasure trove of valuable information.

From appetizers and beverages and soups to salads and entrees, vegetables and side dishes to breads and desserts, Kitchen Keepsakes has the perfect recipe for every occasion. Elegantly presented, yet unpretentious, the directions are clear-cut and easy to follow. Even a novice cook will be able to prepare Herbed Rack of Lamb, Stuffed Veal with Meat, Duck in Orange Sauce, and any of the 450 other fabulous menu choices to=2 0perfection.

Kitchen Keepsakes is dedicated by Ellyn and Jay Weinstein and their daughters, Beth and Dana, in loving memory of their father and grandfather, Sidney Feld, z’l. By dedicating the book to her father, Ellyn wanted to share his love of having his family around, especially at the kitchen- and dining-room tables. “What better way to honor his memory than by doing a chesed project where Kulanu families and their children benefit and all families can make their own great memories with favorite recipes? You can give tzedakah, support Kulanu, and get a Kulanu kitchen keepsake, just by purchasing the book.”

Kulanu (“All of Us”) works together to make a difference in the lives of children with special needs. The trials and tribulations in parenting a child with special needs are stressful on the family unit. These parents are inundated with social, emotional, medical, and religious worries. Kulanu’s state-of-the-art programs and services respond to these needs and are a testament to the organization’s vision, determination, and triumph.

In 2000, a group of mothers of children with special needs helped to found Kulanu. Two years later, Kulanu took a giant step forward by launching its educational program, a unique “school within a school.” Today, Kulanu’s educational programs provide individualized education in both general and Judaic studies, along with valuable therapies and vocational and life-skills training.. Kulanu students benefit from interaction with school peers through participation in various classes and activities at the organization’s host school, HAFTR.

Presently, over 300 children with special needs participate—in Shabbat groups, Sunday-morning social activities such as art, music movement, and cooking with mainstream peers, Talmud Torah classes, social-skills groups, parent-support groups, community classes, and more. The entire community benefits, by recognizing the lessons all our children have to offer: patience, love, acceptance, and a celebration of each and every individual’s place in our vibrant community.

Whether you are purchasing a copy of Kitchen Keepsakes for yourself or as a gift, this cookbook will be appreciated by everyone, including children who are spending the year in Israel or are away at college. Kulanu’s Cookbook Committee is seeking sponsorships for the second printing of Kitchen Keepsakes, which will be published and available for purchase at the Kulanu Carnival in May. Sponsorships are available for $36, $54, and $100, the latter including a complimentary copy of the book. To learn more, please visit the website at www.kulanukids.org.

Sunday Program Bat Mitzvah Carnival

2009-03-16T15:43:00.003-04:00

This past Sunday Shoshi Gross, a long-time volunteer at the Kulanu Sunday Program, choose to celebrate her Bat Mitzvah by sponsoring a Purim Carnival for all the Sunday Program children. The Carnival was held in the HAFTR school building and included a catered breakfast, music, booths, activities, prizes and much more. All the Kulanu children got into the Purim spirit, coming in costume and dashing from game to game. It is especially noteworthy that a volunteer who already gives so much of her personal time to helping others chose to celebrate her Bat Mitzvah this way. The relationships Kulanu children make with her and the other volunteers are priceless.

For information about how your child can do a Bar/Bat Mitzvah project with Kulanu call 516-569-3083 and ask to speak with Leiby.

SNAP Purim Carnival

2009-03-16T14:50:00.001-04:00

This past Sunday Kulanu’s SNAP program for teens was hosted by the Atlantic Beach Jewish Center for a fun filled Purim Carnival. This carnival was another amazing event where over thirty Kulanu participants gathered together for a day of excitement and hijinks. The carnival included laser tag, Guitar Revolution, T-Shirt making and much more. The highlight of the day was the opportunity the teens had to socialize with the many wonderful volunteers from the Jewish Center's youth program. Kulanu would like to thank everyone involved who helped make the event such a success.

New Site Uses Comics to Teach

2009-03-16T13:47:00.000-04:00

New Site Uses Comics to Teach

MakeBeliefsComix.com

At MakeBeliefsComix.com, parents and children can create their own comic strips online and practice writing, reading and storytelling. Parents and teachers of autistic children are using the site to communicate more effectively with their children by creating comic strips to teach and convey information to them. The comic strips created provide a finite world with images and text that can be easier for youngsters with autism to grasp.

This free educational resource allows users to select from 15 different characters, each showing four different emotions, fill-in blank talk and thought balloons with text, and assistance from story prompts. Google and UNESCO selected MakeBeliefsComix.com as one of the world's most innovative sites to encourage literacy and reading.

Learn more at http://www.makebeliefscomix.com/

March 18 Special Needs Resource Fair

2009-03-12T16:18:00.001-04:00

2nd Annual Special Needs Resource Fair

An event for parents to learn about camps, schools, agencies and services for their child, teen or adult with special needs.

Wednesday, March 18 6:00–10:00pm

At Sid Jacobson JCC
300 Forest Drive
East Hills, NY 11548

Some vendors include:

AHEADD
Autism Speaks
AHA Association
Camp HorseAbility, Inc.
Custom Education Foundation, Inc.
East Meadow Little League Challenger Division
Elaine Lerner, MSW, CSW-ADHD Parent Trainer
F.E.G.S.
Gymboree Play and Music
Jewish Childcare Association Compass Project
MetDesk
North Shore Vocational Rehabilitation Center
Northwestern Mutual
Opti Healthcare Diagnostic and Treatment Center/DDI
Parent-to-Parent of NYS
Sharon Kovacs Gruer, P.C.
Special Olympics New York, Long Island Region
Suffolk Y JCC
Sulam-Li School
The Brittany Maier & Friends
Music Foundation
The K.I.S.S. Center— Mid Island
The Rebecca Center
Vincent Smith School
Sponsored by UJA Federation of NY
For more information, please contact
Sharon Denison, MSW, Director of Weekday Special Needs Programs & Camp Kehilla
516-484-1545, ext. 148
sdenison@sjjcc.org

March 23, 2009 Video Conference Guide for Families to Understanding Supports & Services Administered by OMRDD

2009-03-12T16:16:00.001-04:00

Video Conference Presented by Parent to Parent of NYS
V/C A Guide for Families to Understanding Supports & Services
Administered by OMRDD (G1024V)

March 23, 2009
10 AM – 12 Noon

A video conference on Understanding Supports and Services
Administered by OMRDD is being offered at a number of Developmental
Disabilities Services Office (DDSO) locations across New York State
on 3/23/09. (See below for course description and video conference
locations.)

You may register by using the Online Registration Form link below or
calling OMRDD's Talent Development and Training Office at: 518-473-1190.

For questions regarding course content, please call Mary Jo Hebert at
the Capital District Office of Parent to Parent of NYS at: 1-800-305-8 817.

Hope to see you on March 23!
The purpose of this training is to introduce families to the language
of service delivery systems and to define and clarify information
about services and supports. Participants will gain an increased
awareness and understanding of eligibility criteria and the
eligibility determination process. The training includes an overview
of Medicaid Service Coordination (MSC), Home and Community Based
Services Waiver, and Family Support Services.

VC A Guide For Families to Understanding Supports & Services
Administered by OMRDD (G1024V)
Online Registration Form

SESSION
DATE
TIME
NOTES
LOCATION

11757
03/23/2009
10:00 am to 12:00 pm

Metro NY - New York

11758
03/23/2009
10:00 am to 12:00 pm

Staten Island - Staten Island

11752
03/23/2009
10:00 am to 12:00 pm

Bernard Fineson - Queens Village

11765
06/01/2009
10:00 am to 12:00 pm

Long Island - Hauppauge

11766
06/01/2009
10:00 am to 12:00 pm

Metro NY - New York

11761
06/01/2009
10:00 am to 12:00 pm

Brooklyn - Brooklyn

Mary Jo Hebert

Regional Coordinator

Capital District Office

Parent to Parent of NYS

500 Balltown Rd.

Schenectady, NY 12304

518-381-4350

800-305-8817

cdp2p@verizon.net

www.parenttoparentnys.org

“Bringing the Birds and the Bees Down to Earth: Sexuality Education for Children and Adults with Autism Spectrum and Related Disabilities”

2009-02-24T10:45:00.001-05:00

LAWRENCE PUBLIC SCHOOLS
and HEWLETT-WOODMERE SEPTA
are hosting a workshop on…

“Bringing the Birds and the Bees Down to Earth: Sexuality Education for Children and Adults with Autism Spectrum and Related Disabilities”

Presenter : Lisa Mitchell. LCSW, CODY CENTER

This workshop is for parents, caregivers and professionals. Lisa Mitchell will focus on puberty, relationships, abuse prevention, promotion of appropriate behavior and teaching communication about sexuality.

Date: Wednesday, March 4, 2009
Time: 7:30 – 9:00 PM
Location: Lawrence Middle School

**To RSVP by phone, please contact Rosanne Bogard (516) 812-7505 or
Michelle Kinhackl (516) 374-4662

Please mail RSVP form to: Rosanne Bogard – Lawrence Middle School
Pupil Personnel Services
195 Broadway
Lawrence, NY 11559

Parent’s name: ______________________________________________________________
Student’s name:_____________________________________________________________
School: ___________________________________________________________________
Home Address: _____________________________________________________________
Phone: _____________________ Email:__________________________________________

FW: Multiple Genes Implicated In Autism; Discovery Could Lead To Drugs Targeting Gene Interactions

2009-02-12T10:33:00.003-05:00

http://www.sciencedaily.com/releases/2009/02/090209205049.htm

Multiple Genes Implicated In Autism; Discovery Could Lead To Drugs Targeting Gene Interactions

ScienceDaily (Feb. 10, 2009) — By pinpointing two genes that cause autism-like symptoms in mice, researchers at MIT's Picower Institute for Learning and Memory have shown for the first time that multiple, interacting genet ic risk factors may influence the severity of autistic symptoms.

The study, reported in the Feb. 9 advance online edition of the Proceedings of the National Academy of Sciences (PNAS), lends support to researchers' long-suspected belief that in individuals whose autism is genetic in origin, more than one gene is implicated.

The work could lead to drugs targeting signaling mechanisms between the two interacting genes responsible for some autism spectrum disorders (ASDs) symptoms. The molecular intersection of the two genes' pathways in the brain may also serve as a diagnostic target or biomarker for a subset of individuals with ASDs.
"We found that two genetic risk factors for ASDs act cooperatively in mice to influence brain size and social behavior, both of which are altered in ASDs," said Damon T. Page, a Picower Institute postdoctoral fellow and lead investigator of the study.

Approximately 24 percent of humans with autism have macrocephaly — head circumference above the 98th percentile — and increased brain size. Studies in ASDs patients have shown that brain size is correlated with the severity of behavioral problems.

Individuals with ASDs show deficits in social interaction, impaired communication and repetitive behaviors. According to the Centers for Disease Control, ASDs are the second most common serious developmental disability after mental retardation.
"Our results provide evidence that the severity of autistic symptoms may be the product of variations in DNA in multiple locations in the genome," Page added.
"An important implication is that because the majority of instances of autism appear to involve multiple genes, specific gene combinations may worsen effects. New therapeutics may one day be developed that influence particular signaling mechanisms in the disorder," said Mriganka Sur, the Newton Professor of Neuroscience and head of the MIT Department of Brain and Cognitive Sciences.

Page and colleagues found that mice carrying mutations in two different candidate autism susceptibility genes have more severe symptoms than those with only a single mutation.

The researchers studied the effects on mouse brain development and behavior of mutations in the PTEN gene, which encodes the phosphatase and tensin homolog protein, and the serotonin transporter gene.

Double whammy of symptoms

The researchers found that mice with a mutation in PTEN alone or in the serotonin transporter gene alone had brains that were larger than normal, while mice with simultaneous mutations in PTEN and serotonin transporter genes had even larger brains.

In female mice, a mutation in PTEN impaired sociability, while those that also had a mutation in serotonin transporter had worse symptoms.
The authors concluded that interaction between the two genes influences brain growth and sociability in mice, noting that mutations in serotonin transporter may be one of multiple risk factors that could modify the severity of autistic symptoms in individuals who previously developed mutations in PTEN. Future work will be aimed at characterizing how genetic, environmental and pharmacological manipulations impact these animals' autism-related traits.

This work was supported by the Nancy Lurie Marks Family Foundation, the Simons Foundation and the Autism Consortium.
________________________________________
Adapted from materials provided by Massachusetts Institute of Technology. Original article written=2 0by Deborah Halber.
Email or share this story:
Need to cite this story in your essay, paper, or report? Use one of the following formats:
APA

MLA
Massachusetts Institute of Technology (2009, February 10). Multiple Genes Implicated In Autism; Discovery Could Lead To Drugs

Dine at Off the Grill and Support Kulanu

2009-02-12T10:31:00.001-05:00

Off the Grill in collaboration with Kulanu,
is excited to announce an opportunity for a truly
rewarding and satisfying meal.

Come in and dine from February 23-28 and 10% of
your bill will go to Kulanu

Enjoy a meal with your family knowing that you’re
helping others in need

600 Central Ave
Cedarhurst, NY 11516
(516) 569-4140

P.A.R.C. , Keren Eliana Parent Advocacy & Resource Center presents -- 2e The Paradox of the Gifted and Learning Disabled Student

2009-02-12T10:22:00.002-05:00

On Tuesday, February 24th at 7:30 pm Kulanu’s PARC Coordinator, Melissa Sornik, LMSW will present a workshop on reaching and teaching the “twice exceptional” (2e) student.

The guidelines of No Child Left Behind leave little room for the divergent learning styles of some of our most gifted students. Among those are 2e students; those who possess superior strengths and abilities combined with areas of deficit. They can be among the most challenging students, both academically and behaviorally. As a result, these high potential students remain largely unidentified and underserved, and are at risk of failure.

This workshop is designed for parents, educators and related service providers. It will present a view of the Twice Exceptional (2e) student through a positive lens, promoting a shift in focus from disability to ability.

Key strategies and accommodations will be presented to help uniquely gifted learners reach their potential.

Melissa Sornik is the co-founder and past president of TECA, Long Island Twice Exceptional Children’s Advocacy.

This workshop is free and will be held at Temple Beth El -- 46 Locust Avenue, Cedarhurst

Space is limited. RSVP by Thursday, February 19th by phone at (516) 569-3083, or by e-mail to melissa@kulanukids.org.

NIDA STUDY SHOWS THAT METHYLPHENIDATE (RITALIN) CAUSES NEURONAL CHANGES IN BRAIN REWARD AREAS

2009-02-05T11:31:00.001-05:00

-----Original Message-----
From: NIH news releases and news items [mailto:NIHPRESS@LIST.NIH.GOV] On Behalf Of NIH OLIB (NIH/OD)
Sent: Tuesday, February 03, 2009 9:21 AM
To: NIHPRESS@LIST.NIH.GOV
Subject: NIDA STUDY SHOWS THAT METHYLPHENIDATE (RITALIN) CAUSES NEURONAL CHANGES IN BRAIN REWARD AREAS

U.S. Department of Health and Human Services
NATIONAL INSTITUTES OF HEALTH NIH News
National Institute on Drug Abuse (NIDA)
Embargoed for Release: Monday, February 2, 2009, 5:00 p.m. EST

CONTACT: Stephanie Older, 301-443-6245,

NIDA STUDY SHOWS THAT METHYLPHENIDATE (RITALIN) CAUSES NEURONAL CHANGES IN BRAIN REWARD AREAS
Similarities and Differences Compared to Cocaine were Found

Investigators funded by the National Institute on Drug Abuse have shown that the medication methylphenidate (Ritalin), which is commonly prescribed to treat attention-deficit hyperactivity disorder (ADHD), can cause physical changes in neurons in reward regions of mouse brains-in some cases, these effects overlapped with those of cocaine. Both methylphenidate and cocaine are in the class of drugs known as psychostimulants. While methylphenidate is widely prescribed, this study highlights the need for more research into its long-term effects on the brain. These research findings will be published Feb. 3 in Proceedings of the National Academy of Sciences.

"Studies to date suggest that prescribed use of methylphenidate in patients with ADHD does not increase their risk for subsequent addiction. However non-medical use of methylphenidate and other stimulant medications, can lead to addiction as well as a variety of other health consequences," said NIDA Director Dr. Nora Volkow. "This study highlights the fact that we know very little about how methylphenidate affects the structure of and communication between brain cells."

The researchers exposed mice to two weeks of daily injections of cocaine or methylphenidate, after which reward areas of the brain were examined for changes in dendritic spine formation -- related to the formation of synapses and the communication between nerve cells; and the expression of a protein (delta Fos B) which has been implicated in the long term actions of addictive drugs. Both drugs increased dendritic spine formation, and the expression of delta Fos B; however the precise pattern of their effects was distinct. It differed in the types of spines affected, the cells that were affected, and the brain regions. In some cases there was overlap between the two drugs, and in some cases, methylphenidate produced greater effects than cocaine -- for example, on protein expression in certain regions.

"Methylphenidate, which is thought to be a fairly innocuous compound, can have structural and biochemical effects in some regions of the brain that can be even greater than those of cocaine," stated Dr.Yong Kim, lead author of the study. "Further studies are needed to determine the behavioral implications of these changes and to understand the mechanisms by which these drugs affect synapse formation" he added.

Previous studies, including two reported by NIDA on April 1, 2008 (NIH Research Suggests Stimulant Treatment for ADHD Does Not Contribute to Substance Abuse Later in Life) have shown that children treated with stimulants for ADHD early in life have no greater risk of drug addiction as adults.

The National Institute on Drug Abuse is a component of the National Institutes of Health, U.S. Department of Health and Human Services. NIDA supports most of the world's research on the health aspects of drug abuse and addiction. The Institute carries out a large variety of programs to inform policy and improve practice. Fact sheets on the health effects of drugs of abuse and information on NIDA research and other activities can be found on the NIDA home page at . To order publications in English or Spanish, call NIDA's new DrugPubs research dissemination center at 1-877-NIDA-NIH or 240-645-0228 (TDD) or fax or email requests to 240-645-0227 or .

The National Institutes of Health (NIH) -- The Nation's Medical Research Agency -- includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit ;.

City Signs Contract to Track Special Education Data

2009-01-26T10:16:00.001-05:00

http://www.nytimes.com/2009/01/14/education/14special.html?_r=1

City Signs Contract to Track Special Education Data

By ELISSA GOOTMAN
Published: January 13, 2009
The New York City Department of Education, long criticized for a haphazard approach to20special education, has signed a $55 million contract with a Virginia company to overhaul the way it tracks information about 190,000 students with disabilities.

Advocates say that the new system is desperately needed, and that it will replace an antiquated computer system, which is supplemented by roomfuls of paper documents. The combination, they say, too often results in children being denied services they need and are required by law to receive.

“We know that these problems happen all the time in terms of delays in service or deprivation of service, but what we don’t know accurately is exactly how widespread they are and where they occur,” said Kim Sweet, the executive director of Advocates for Children, which monitors the school system and has sued it on behalf of students with disabilities. “Whenever advocates or researchers ask for data to assess how the Department of Education is doing in terms of compliance with special education law, the D.O.E. will say, ‘Well, we’ll give you our data, but we can’t rely on it because it’s not accurate.’ And that’s a major problem in terms of accountability.”

The contract with the company, Maximus, is for five years. The Education Department estimated that, in addition, it would=2 0spend $23 million over the next five years on related costs, including training and equipment.
The contract, signed Jan. 5 and expected to be publicly announced on Wednesday, comes as parents and principals throughout the city are bracing for cuts of up to $1.5 billion in the department’s $20 billion budget next year.

Leonie Haimson, executive director of Class Size Matters, an advocacy group that has been critical of the school system’s $80 million project for tracking information like test scores, says she believes that “more attention and better record-keeping are absolutely necessary to ensure that special education students get the services that they need.”

But, she added, “I would want to make sure that the data is accurate, because in the past the data has been severely flawed that they’ve entered into these massive systems.”

Ms. Haimson said there should also be “really strict oversight and the ability of parents to access the information for their own children, to make sure that it’s not arbitrarily changed by people at D.O.E. without their knowledge.”
Maximus, a company with more than 6,000 employees that does consulting and provides services to government agencies, ran into some controversy in a previous venture with New York City.

During the Giuliani administration, the city comptroller tried to block the company from receiving welfare-to-work contracts, arguing that the company had improperly used connections with city officials. After City Council hearings and lawsuits, the contracts went forward, but the Bloomberg administration did not renew them.
In a separate case unrelated to New York City, Maximus agreed in 2007 to pay the federal government $30.5 million to settle an investigation into its work preparing Medicaid claims on behalf of the District of Columbia.
Education Department officials said they had included a provision in the special education contract that would prevent employees involved in the Medicaid case from working on the city contract. They expressed confidence in the company, which was selected after the city issued a request for proposals a year ago.

“T his is something that people have been asking for for a very long time,” said Linda Wernikoff, the Education Department official in charge of special education.
Referring to Individualized Education Programs, the federally mandated documents that outline which services special education students need, she said: “If you develop an I.E.P. online and that child is in the system, he can’t fall between the cracks, he’s right there.” When the I.E.P.’s are on paper, and someone has to enter the data in a computer program, she said, “there’s a lot of chance for human error.”
In addition to 157,305 students who attend city public schools, the Maximus system will be used to track 33,084 others — mostly New York City residents — who attend private or parochial schools but receive services like physical and occupational therapy through the department. Ms. Wernikoff said she expected that a small group of about 30 schools would be able to use the system by fall, and that the entire system would be up and running by the spring of 2011.

While Ms. Sweet, of Advocates for Children, welcomed the new system, she said, “Absolutely, this should have been done sooner.”

DISABILITIES

2009-01-26T10:04:00.000-05:00

http://www.whitehouse.gov/agenda/disabilities/
DISABILITIES
"We must build a world free of unnecessary barriers, stereotypes, and discrimination.... policies must be developed, attitudes must be shaped, and buildings and organizations must be designed to ensure that everyone has a chance to get the education they need and live independently as full citizens in their communities."
-- Barack Obama, April 11, 2008

Barack Obama and Joe Biden have a comprehensive agenda to empower individuals with disabilities in order to equalize opportunities for all Americans.
In addition to reclaiming America's global leadership on this issue by becoming a signatory to -- and having the Senate ratify -- the UN Convention on the Rights of Persons with Disabilities, the plan has four parts, designed to provide lifelong support and resources to Americans with disabilities. They are as follows:
First, provide Americans with disabilities with the educational opportunities they need to succeed by funding the Individuals with Disabilities Education Act, supporting early intervention for children with disabilities and universal screening, improving college opportunities for high school graduates with disabilities, and making college more affordable. Obama and Biden will also authorize a comprehensive study of students with disabilities and issues relating to transition to work and higher education.

Second, end discrimination and promote equal opportunity by restoring the Americans with Disabilities Act, increasing funding for enforcement, supporting the Genetic Information Nondiscrimination Act, ensuring affordable, accessible health care for all and improving mental health care.

Third, increase the employment rate of workers with disabilities by effectively implementing regulations that require the federal government and its contractors to employ people with disabilities, providing private-sector employers with resources to accommodate employees with disabilities, and encouraging those employers to use existing tax benefits to hire more workers with disabilities and supporting small businesses owned by people with disabilities.

And fourth, support independent, community-based living for Americans with disabilities by enforcing the Community Choice Act, which would allow Americans with significant disabilities the choice of living in their community rather than having to live in a nursing home or other institution, creating a voluntary, budget-neutral national insurance program to help adults who have or develop functional disabilities to remain independent and in their communities, and streamline the Social Security approval process .

Autism

President Obama and Vice President Biden are committed to supporting Americans with Autism Spectrum Disorders (“ASD”), their families, and their communities. There are a few key elements to their support, which are as follows:

• First, President Obama and Vice President Biden support increased funding for autism research, treatment, screenings, public awareness, and support services. There must be research of the treatments for, and the causes of, ASD.

• Second, President Obama and Vice President Biden support improving life-long services for people with ASD for treatments, interventions and services for both children and adults with ASD.

• Third, President Obama and Vice President Biden support funding the Combating Autism Act and working with Congress, parents and ASD experts to determine how to further improve federal and state programs for ASD.

• Fourth, President Obama and Vice President Biden support universal screening of all infants and re-screening for all two-year-olds, the age at which some conditions, including ASD, begin to appear. These screenings will be safe and secure, and available for every American that wants them. Screening is essential so that disabilities can be identified early enough for those children and families to get the supports and services they need.

YAI National Institute for People with Disabilities Network PARENT SUPPORT SERIES for Caregivers of People with Autism Spectrum Disorders (ASD)

2009-01-09T11:47:00.004-05:00

Location: 460 West 34th Street 11th Floor
New York, NY 10001

Structure: 1st Half Presentation, 2nd Half Support

Fee: None!

MUST call YAI LINK to register at
212-273-6182
or toll free at 1-866-2-YAILINK

PARENTS AND CAREGIVERS ONLY,
NO CHILDREN PLEASE

Please check www.yai.org/autismsupport often as we are adding groups regularly!

Supported in part by grants from NYS OMRDD and The New York City Council’s “1 in 150 Autism Awareness Initiative”

Date Time Presenter(s) Topic
Jan. 21st
Wednesday 10 am – 12:30 pm Bernice Polinsky, BA, Parent and Board Member of AHA Association Living with Autism: What Every Parent Should Know

Feb. 4th
Wednesday 10 am – 12:30 pm Charles Cartwright, MD Autism Diagnosis: Do I Need an ADOS?

Feb. 10th
Tuesday 10 am – 12:00 pm Iris Varela, MSW General Support/Open Topics

Mar. 5th
Thursday 6:00 – 8:00 pm Katie DeFoe, MS Ed Understanding the DD Service System for People with Autism

Mar. 11th
Wednesday 10 am – 12:30 pm Peter Dellabella, MD The Overlap Between Autism and ADHD

Mar. 19th
Thursday 10 am – 12:30 pm Michael Boardman, MA, BCBA;
Anisha Foster, MA, BCBA; and
Maureen Dormody-Shields
MS Sp Ed ABA and Structuring Play in the Home During Early Childhood

Mar. 24th
Tuesday 10 am – 12:30 pm Kevin Travers, LCSW Independence and Dependence: Learning to Let Go

April 1st
Wednesday 10 am – 12:30 pm Brigida Hernandez, PhD and Nicole LePera, MA Making Sense of Research

Supported in part by grants from NYS OMRDD and The New
York City Council’s “1 in 150 Autism Awareness Initiative”

Scientists on Staten Island at forefront of war on autism

2009-01-05T12:50:00.001-05:00

by Stephanie Slepian / Staten Island Advance

Saturday January 03, 2009, 11:15 AM

Advance photo/Michael McWeeneyDr. Jerzy Wegiel holds up a cross section of human brain tissue that is used in research at the New York State Institute for Basic Research in Developmental Disabilities (IBR) in Willowbrook.

How early can autism be detected?

It's a question the world's leading scientists are seeking to answer -- and many of those scientists can be found on Staten Island in the labs of the New York State Institute for Basic Research in Developmental Disabilities (IBR) in Willowbrook.
IBR's findings routinely put it at the scientific community's international forefront. On the Island, however, it exists in a quiet anonymity.
Its four low-slung buildings are nearly obscured by a row of trees on Forest Hill Road and the backside of the sprawling campus of the College of Staten Island.
But inside those buildings, scientists in seven research departments and 45 labs are pushing the limits of what is already known about autism and other developmental disabilities.

Simply put: Their research can help families who are living with autism by uncovering more effective means to diagnose, treat and determine the cause of the disorder that affects one in every 150 children to varying degrees.
"Some of our studies could potentially suggest autism in the first months of life versus a diagnosis that is usually made between 2 to 3 years of age," said Dr. W. Ted Brown, IBR's director. "It would be really helpful to know which children are at risk at one month of age.

"The earlier we diagnose it, the earlier we can treat it. With intensive behavioral therapies at a very young age, [children] can be mainstreamed in school."
IBR, the research arm of the state Office of Mental Retardation and Developmental Disabilities (OMRDD), has been making scientific headlines since it was founded in 1967, as the first facility to study mental retardation.
Work done there has led to the first pre-natal screenings for Fragile X syndrome -- the most common known cause of inherited developmental disabilities and the most common known single-gene cause for autism -- and the discovery of PKU, the only form of mental retardation that can be treated at birth.

BREAKTHROUGHS MADE
Over the years, they've made breakthroughs in Down Syndrome, Alzheimer's disease, Batten disease and fetal alcohol syndrome. An outpatient clinic offers sophisticated diagnostic tests to catch things routinely missed on a pediatrician's exam. Among IBR's educational programs is the Center for Developmental Neuroscience and Developmental Disabilities, run jointly with the College of Staten Island.
The institute's commitment to finding the causes of all developmental disabilities continues today, although there has been a shift in IBR's research.

"I've been focusing more and more on autism because it is being recognized as very prevalent in the community," said Dr. Brown, an internationally recognized expert on Fragile X and progeria, a premature aging disease.
In IBR's Department of Developmental Neurobiology, Dr. Jerzy Wegiel catalogues slides that contain life's most delicate matter: Cross sections of human brain tissue.

The postmortem tissue -- which is age-matched from donors both with and without autism -- allows scientists to see directly into the brain's most remote regions in search of structural and chemical abnormalities.
"The nerve cells are smaller and very compact," said Dr. Wegiel, department chairman, pointing to images on a computer screen brought up when the violet-stained sections of an autistic brain are placed under a microscope's lens.
The smaller neurons, he said, may reduce the capacity of different regions of the brain to communicate with each other.

"As we learn what the structural changes are, we can start working on treatments. We can translate the basic research into practical application."
IBR scientists have also identified a gene that may determine the severity of autism, are analyzing the DNA of autistic siblings and their parents and are studying the use of an experimental drug that has increased development of new brain cells and improved cognitive function in a small sampling of patients.
They have also found that infants admitted into neonatal intensive-care units are at an increased risk to develop autism -- about 2.5 times the population norm.
Much of this research will be shared among scientists as part of the New York State Autism Consortium, a partnership of the state's leading research and clinical centers that will be coordinated by IBR.

A TROUBLED PAST
But for all its successes, IBR's history has hardly been trouble-free. Throughout the 1990s and earlier in this decade, the state and IBR maintained an adversarial relationship. Tensions peaked in 2003 when then-Gov. George Pataki threatened to close the facility for good.

Even the previous commissioner of its parent agency was ready to lock the doors.
But elected officials and the community passionately argued that IBR was a lifeline for thousands of families who have loved ones with developmental disabilities.
Because of the public rallies and bipartisan support for IBR's continuance, the state Legislature passed a budget over Pataki's head that spared the facility.
"From my perspective, what's changed, is we have looked very carefully to understand what the value of IBR is and how it absolutely adds to our mission," said Diana Jones Ritter, commissioner of the state Office of Mental Retardation and Developmental Disabilities, whose tenure began after IBR was spared.
"We are expecting extra results from our Autism Consortium and the research we're doing on all developmental disabilities. We are just continuing on our journey."
But IBR faces a new crisis in that journey: Cutting costs as the state's fiscal resources shrink.

IBR, which employs 307, including more than 100 Ph.D.-level scientists, receives $24 million from OMRDD, and another $7 million in grant money.
"Every operation within my organization, and IBR is not exempt, is being challenged to and required to come up with really good cost savings to contribute," Ms. Ritter said.

For IBR, that means more aggressively pursuing grant dollars.
"I believe IBR is one of the best-kept secrets and we don't do enough to make sure people understand the real exciting groundbreaking research being done there, especially with autism," said Gary Lind, OMRDD's deputy commissioner of policy and enterprise solutions.

"We're very much encouraged that good science will lead to other good science and that it will be recognized by the grant and funding community."
It's a hope IBR scientists, like Dr. Janusz Frackowiak, more accustomed to geek-speak than money matters, cling to as they work every day. Still, as he looks for research dollars, Dr. Frackowiak never loses sight of why he is doing what he is doing.

As he prepared to dissect the peanut-sized brain of a genetically altered mouse, which exhibited the memory and learning deficits associated with developmental disabilities, he could speak only of the possibilities.
"Does the mouse remember where its food is?" asked Dr. Frackowiak, the head of the Laboratory of Cellular Biology, describing the changes he looks for in the mice. "Did it go from finding its platform in six seconds to finding its platform in 30 seconds?

"It's impossible to do this on patients, but if we can fix it in mice," he said, "who knows what we can do someday?"

In Defense of Teasing

2008-12-09T09:15:00.001-05:00

December 7, 2008

By DACHER KELTNER

A FEW YEARS AGO my daughters and I were searching for sand crabs on a white-sand beach near Monterey. A group of sixth graders descended on us, clad in the blue trousers and pressed white shirts of their parochial school. Once lost in the sounds of the surf, away from their teacher’s gaze, they called one another by nicknames and mocked the way one laughed, another walked. Noogies and rib pokes, headlocks and bear hugs caught the unsuspecting off guard. Two boys dangled a girl over the waves. Three girls tugged a boy’s sagging pants down. Dog piles broke out. In a surprise attack, one girl nearly dropped a dead crab down a boy’s pants.

As they departed in sex-segregated lines, my daughters stood transfixed. Serafina asked me, “Why did that girl try to put the crab in the boy’s pants?” “Because she likes him,” I responded. This was an explanation Serafina and her older sister, Natalie, only partly understood. What I witnessed might be called “the teasing gap.”
Today teasing has been all but banished from the lives of many children. In recent years, high-profile school shootings and teenage suicides have inspired a wave of “zero tolerance” movements in our schools. Accused teasers are now made to utter their teases in front of the class, under the stern eye of teachers. Children are given detention for sarcastic comments on the playground. Schools are decreed “teasing free.”

And we are phasing out teasing in many other corners of social life as well. Sexual-harassment courses advise work colleagues not to tease or joke. Marriage counselors encourage direct criticism over playful provocation. No-taunting rules have even arisen in the N.B.A. and the N.F.L. to discourage “trash talking.”
The reason teasing is viewed as inherently damaging is that it is too often confused with bullying. But bullying is something different; it’s aggression, pure and simple. Bullies steal, punch, kick, harass and humiliate. Sexual harassers grope, leer and make crude, often threatening passes. They’re pretty ineffectual flirts. By contrast, teasing is a mode of play, no doubt with a sharp edge, in which we provoke to negotiate life’s ambiguities and conflicts. And it is essential to making us fully human.

The centrality of teasing in our social evolution is suggested by just how pervasive teasing is in the animal world. Younger monkeys pull the tails of older monkeys. African hunting dogs jump all over one another, much like pad-slapping, joking football players moments before kickoff. In every corner of the world, human adults play peekaboo games to stir a sulking child, children (as early as age 1) mimic nearby adults and teenagers prod one another to gauge romantic interest. In rejecting teasing, we may be losing something vital and necessary to our identity as the most playful of species.
THE LANGUAGE OF TEASING

A few hundred years ago, teasing was anything but taboo. Jesters and fools enjoyed high status. With their sharp-tongued mockery, outlandish garb and entertaining pranks, they highlighted the absurdities of all that was held sacred, from newborns and newlyweds to kings, queens and leaders of the church. In the tradition of the jester or the fool lies the essence of what a tease is — a playfully provocative mode of commentary.

But attempts to define the nature of that commentary can be difficult, not least because language itself gets in the way. We may use “teasing” to refer to the affectionate banter of middle-school friends, to the offensive passes of impulsive bosses and to the language of heart-palpitating flirtation, to humiliation that scars psyches (harsh teasing about obesity can damage a child’s sense of self for years) and to the repartee that creates a peaceful space between siblings. It is necessary to look at how we use language — especially at how we deliver our spoken words — to get at what teasing actually is.

The answer can be found, paradoxically, in a classic study of politeness by Penelope Brown, a linguistics anthropologist, and Stephen Levinson, a cognitive anthropologist, which differentiates between “on-record” communication” and “off-record” communication. On-record communication is to be taken literally and follows the rules of what the philosopher Paul Grice described as “cooperative, direct speech”: what is said should be truthful, appropriately informative, on topic and clear. When doctors deliver prognoses about terminal illnesses or financial advisers announce the loss of family fortunes, they adhere to these rules like priests following Scripture.

Very often, though, we do not want our words to be taken too literally. When we speak in ways that risk offense, for example when we criticize a friend, we may add intentional vagueness or unnecessary circumlocutions. Say a friend proves to be too confrontational at a dinner party. To encourage greater civility, we might resort to indirect hints (“Say, did you read the latest by the Dalai Lama?”) or metaphor (“I guess sometimes you just need to blow off some steam”). These linguistic acts establish a new channel of communication — off-record communication — signaling that what is being said has an alternate meaning.

Teasing is just such an act of off-record communication: provocative commentary is shrouded in linguistic acts called “off-record markers” that suggest the commentary should not be taken literally. At the same time, teasing isn’t just goofing around. We tease to test bonds, and also to create them. To make it clear when we’re teasing, we use fleeting linguistic acts like alliteration, repetition, rhyming and, above all, exaggeration to signal that we don’t mean precisely what we’re saying. (“Playing the dozens,” a kind of ritualized teasing common in the inner city that is considered a precursor to rap, involves just this sort of rhyming: “Don’t talk about my mother ’cause you’ll make me mad/Don’t forget how many your mother had.”) We also often indicate we are teasing by going off-record with nonverbal gestures: elongated vowels and exaggerated pitch, mock expressions and the iconic wink, well-timed laughs and expressive caricatures. A whiny friend might be teased with a high-pitched imitation or a daughter might mock her obtuse father by mimicking his low-pitched voice. Preteens, sharp-tongued jesters that they are, tease their parents with exaggerated facial expressions of anger, disgust or fear, to satirize their guardians’ outdated moral indignation. Similarly, deadpan deliveries and asymmetrically raised eyebrows (Stephen Colbert), satirical smiles and edgy laughs (Jon Stewart) all signal that we don’t entirely mean what we say.

THE BENEFITS OF TEASING
The language of teasing is intimately linked to the language of social behavior. Because teasing allows us to send messages in indirect, masked ways, it is an essential means of navigating our often-fraught social environments. In teasing, we become actors, taking on playful identities to manage the inevitable conflicts of living in social groups.

Placed into groups, children as young as 2 will soon form a hierarchy — it will be clear even among toddlers who is in charge and who is not. Hierarchies have many benefits — the smooth division of labor and resources, protecting weaker members of the group — but they can be deadly to negotiate. Male fig wasps chop their rivals in half with their large mandibles. Narwhal males loll about with tusk tips embedded in their jaws — vestiges of their status contests. Coyotes engage in heavily coded bouts of play; those who don’t live shorter, ostracized lives.
Given the perils of negotiating rank, many species have evolved dramatized status contests, relying on symbolic displays of physical size and force to peacefully sort out who’s on top. Stags roar. Frogs croak. Chimps throw branches around. Hippos open their jaws as wide as possible to impress competitors.
And humans tease. Teasing can be thought of as a status contest with a twist. As humans evolved the ability to form complex alliances, the power of a single individual came increasingly to depend on the ability to build strong bonds. Power became a matter of social intelligence (the good of the group) rather than of survival of the fittest (raw strength). As a status contest, teasing must walk a fine line, designating status while enhancing social connection.
Take nicknames. One of the most common forms of teasing, they also serve to assign status and enhance or create social bonds. They commonly emerge in marriages, between friends, among co-workers and between the public and its leaders. Artful nicknames involve such off-record markers as exaggeration, alliteration and metaphor, which comment upon the individual’s excesses. Muhammad Ali was the Louisville Lip; Richard Nixon, Tricky Dick; and George W. Bush, Uncurious George. During my fifth-grade trip to the Mendocino tide pools, I became Dacher Kelp Crab to all, a fitting riff on my name, our coastal locale and my sullen temperament. Nicknames are relationship-specific placeholders. They allow us to escape to the world of play, where we mock in affectionate fashion and critique the powerful in safety.

To examine the role nicknames play in helping a community to function, Erin Heerey, now a professor at Bangor University in Wales, and I invited members of a University of Wisconsin fraternityto the laboratory one October, just after what is known as rush week, when pledges angle to gain acceptance at the frat of their choice. We divided the fraternity brothers into groups of four — two high-status “actives,” or established members of the group, and two new low-status “pledges.” We gave each participant two randomly generated initials — “A. D.” or “T. J.” or “H. F.” or “L. I.” — and asked them to generate a nickname and story for each of the other three.
Our participants came up with nicknames like “human fly,” “another drunk,” “turkey jerk,” “little impotent,” “anal duck” and “heffer fetcher.” Each tease turned out to be a 30-second morality play. One low-status pledge was known as Taco John. The story behind the nickname was this: The pledge had gotten drunk on 18 shots of Bacardi during a late-night feast at Taco John’s; he then disappeared and was found passed out on the toilet, with his pants around his ankles, holding his genitals. Among other things, the fraternity members were notifying one another about moral boundaries: don’t get too drunk, and keep your private parts to yourself.

In the content and tones of the teases, we uncovered a familiar status dynamic. High-status “actives” teased the “pledges” in sharper, more provocative fashion, putting them in their place. Each “pledge” went after the other low-status pledges with edgy provocations, no doubt jousting for an edge. But when it came to their new high-status brothers, the pledges used teasing to praise. The most popular “pledges” proved to be the more playful teasers and were themselves teased in more flattering fashion: within a couple of weeks of the group’s formation, 30-second teases were demarcating rank.

For all the put-downs, the teasing among frat brothers and pledges did not appear to do any lasting damage. In studying transcripts of these teasing contests, you might expect to find a thrown punch or two. Instead, the fraternity members became better friends after their playful humiliations. Frame-by-frame analyses of the videos of these status contests revealed how this happened. At the punch line of a particular tease, the four brothers would actually burst into laughter (the target, not surprisingly, more quietly). Thanks to the scientific study of laughter, we know that when friends laugh, they laugh in unison, their fight-flight response (e.g., increased blood pressure) is calmed and mirror neurons fire; shared laughter becomes a collective experience, one of coordinated action, cooperative physiology and the establishing of common ground.

Perhaps surprisingly, the momentary pain of being teased can lead to pleasure. During their 15 seconds of humiliation, the targets of teasing displayed common signs of embarrassment — gaze aversion; a coy, nervous smile; a hand touching the face; a head bowed submissively so as to expose the neck; and blushing. These gestures are ancient signs of appeasement that trigger a reconciliation response in most mammals, as they did in our study. The more targets showed these evanescent signs of embarrassment, the more the teasers liked them.

Still, it’s hard not to remember why teasing has a bad name when it results in what sounds an awful lot like humiliation. In situations where power asymmetries exist, as they do in a frat house, how do we separate a productive tease from a damaging one? In part it’s the nature of the provocation. Productive teasing is rarely physically hurtful and doesn’t expose deep vulnerabilities — like a romantic failure or a physical handicap. Off-record markers — funny facial expressions, exaggeration and repetition — also help mark the tease as playful rather than hostile. And social context means a lot. Where teasing provides an arena to safely explore conflict, it can join people in a common cause. Especially when they’re allowed to tease back.

THE ROMANCE OF TEASING
I still remember that day, as clear as a bell. Off to the side of the seventh-grade four-square game, Lynn, future high-school mascot, valedictorian, and my first love, approached me with hands coyly behind her back. She stopped unusually close, and with a mischievous smile framed by her cascading hair, asked, “Hey Dacher, wanna screw?” As I was in the midst of mumbling an earnest and affirmative reply, she held her hand open in front of me, a screw lying flat on her palm. “Just teasing” I heard amid the screeching laughter of the cabal of finger-pointing girls.
Had I trained my ear to discern the off-record markers of teasing, I would have detected subtle deviations from sincere speech in the artfully elongated vowels of Lynn’s enunciation (“Hey Daaaacher, wanna screeeuuw?”). Had I read my Shakespeare I would have known to counter with my own provocation, and my chances for requited love would have risen. Here is a first expression of love between two of literature’s great lovers, Beatrice and Benedick, from Shakespeare’s “Much Ado About Nothing”:
BEATRICE: For which of my good parts did you first suffer love for me?
BENEDICK: Suffer love! A good epithet! I do suffer love indeed, for I love thee against my will.
BEATRICE: In spite of your heart, I think. Alas, poor heart, if you spite it for my sake, I will spite it for yours, for I will never love that which my friend hates.
BENEDICK: Thou and I are too wise to woo peaceably.
To tease is to woo wisely.

Monica Moore, a psychologist at Webster University, surreptitiously observed teenage girls at a mall and found their packlike meanderings to be punctuated by bursts of teasing. These young Beatrices would veer into the orbits of young Benedicks (and vice versa) to tickle, poke, nudge and squeeze, creating opportunities for physical contact. Touch is registered in specialized receptors under the surface of the skin, our largest sensory organ. Touch calms stress-related physiology; it helps to activate reward regions of the brain and the release of oxytocin, a chemical that promotes feelings of devotion. Snails shoot dartlike appendages into potential sexual partners, to stimulate their paramour’s sexual organs. We tease. And when we do, we look for traces of the telltale signs of desire — the lip pucker, the lip lick, the mutual gaze that lasts beyond the 0.20-second eye contact that defines more formal exchange. Teasing is the stage for the drama of flirtation, where suitors provoke in order to look for the sure signs of enduring commitment.
Long-term partners develop their own teasing idiom that weaves its way into their quotidian rhythms. This teasing typically focuses on sexual proclivities, bodily functions, sleep habits, eating habits and anachronistic fashion choices (my wife, Mollie, calls me “bison” when my hair begins to flip upward in nostalgic 1970s style). Such teasing marks partners’ quirks as deviant but endearing foibles, uniquely appreciated by the partner. Studies find that married couples with a rich vocabulary of teasing nicknames and formulaic insults are happier and more satisfied.
Romantic teasing provides a way of negotiating the conflicts that send many couples to the therapist’s couch. To explore how playful teasing shores up marital bonds, I asked couples to tease each other using the same nickname paradigm used in the fraternity study. The nicknames they invented drew on the metaphors of love documented by the Berkeley linguistics professor George Lakoff: they made references to each other as food objects (“apple dumpling”) or small animals (“adorable duckling”). The more satisfied the couple, the more the teasing was filled with off-record markers. And in a separate study, partners who managed to tease each other during a conflict — for example, over money or an infidelity — felt more connected after the conflict than those couples who resorted to the earnest criticism many therapists recommend. Teasing actually serves as an antidote to toxic criticism that might otherwise dissolve an intimate bond. Teasing is a battle plan for what Shakespeare called “the merry war.”

THE GOOD TEASE
Our rush to banish teasing from social life has its origins in legitimate concerns about bullies on the playground and at work. We must remember, though, that teasing, like so many things, gets better with age. Starting at around 11 or 12, children become much more sophisticated in their ability to hold contradictory propositions about the world — they move from Manichaean either-or, black-or-white reasoning to a more ironic, complex understanding. As a result, as any chagrined parent will tell you, they add irony and sarcasm to their social repertory. And it is at this age that you begin to see a precipitous drop in the reported incidences of bullying. As children learn the subtleties of teasing, their teasing is less often experienced as damaging.

In seeking to protect our children from bullying and aggression, we risk depriving them of a most remarkable form of social exchange. In teasing, we learn to use our voices, bodies and faces, and to read those of others — the raw materials of emotional intelligence and the moral imagination. We learn the wisdom of laughing at ourselves, and not taking the self too seriously. We learn boundaries between danger and safety, right and wrong, friend and foe, male and female, what is serious and what is not. We transform the many conflicts of social living into entertaining dramas. No kidding.

Dacher Keltner is a professor of psychology at the University of California, Berkeley, and an editor of the magazine Greater Good. His latest book, “Born to Be Good: The Science of a Meaningful Life,” from which this essay is adapted, will be published next month by Norton.

Brain waves show sound processing abnormalities in autistic children

2008-12-03T11:42:00.001-05:00

CHICAGO – Abnormalities in auditory and language processing may be evaluated in children with autism spectrum disorder by using magnetoencephalography (MEG), according to a study presented today at the annual meeting of the Radiological Society of North America (RSNA).
"Using MEG, we can record the tiny magnetic fields associated with electrical brain activity," said Timothy Roberts, Ph.D., vice chair of research in the Department of Radiology at Children's Hospital of Philadelphia. "Recorded brain waves change with every sensation, thought and activity. It's like watching a movie of the brain in real time."
Typically used for epilepsy evaluation, MEG can also be used to identify timing abnormalities in the brains of patients with autism.
"We found that signatures of autism are revealed in the timing of brain activity," Dr. Roberts said. "We see a fraction of a second delay in autistic patients."
Autism is a complex developmental disability that affects approximately one in every 150 American children, mostly boys, according to the Autism Society of America. Autism inhibits the brain functions that govern the development of social and communication skills.
For a MEG exam, a helmet that houses magnetic detectors and looks similar to an old-fashioned hair dryer is lowered over the patient's head while the patient remains in a seated position. The helmet analyzes electrical currents from the brain.
For the study, 64 patients, age six to 15, with a diagnosis of autism spectrum disorder were evaluated with MEG. Audio stimulation was introduced to the children in the form of beeps, tones in pairs, vowels or sentences. Sounds were presented at different frequencies and tone pairs in rapid succession, including unusual streams of incongruous tones and vowels. The results were analyzed and compared with the results from a control group of age-matched non-autistic children.
The findings showed that in the children with autism there was a fraction of a second delay in the brain's response while processing the rapid succession sounds and the unusual streams, giving researchers an insight into the dysfunction of the auditory processing system in autistic children.
"This delay in processing certain types and streams of sound may underpin the subsequent language processing and communication impairment seen in autistic children," Dr. Roberts said.
Dr. Roberts predicts that the signatures of autism found in brain activity will become biomarkers to improve classification of the disorder and aid in treatment and therapy planning.
"We hope that in the future these signatures will also be revealed in the infant brain to help diagnose autism and allow earlier intervention," he said.
###
Co-authors are J. Christopher Edgar, Ph.D., Deborah M. Zarnow, M.D., and Susan E. Levy, M.D.
Disclosure: This study was funded by the National Institutes of Health and by the Nancy Lurie Marks Family Foundation.
Note: Copies of RSNA 2008 news releases and electronic images will be available online at RSNA.org/press08 beginning Monday, Dec. 1.
RSNA is an association of more than 42,000 radiologists, radiation oncologists, medical physicists and related scientists committed to excellence in patient care through education and research. The Society is based in Oak Brook, Ill. (RSNA.org)
Editor's note: The data in these releases may differ from those in the printed abstract and those actually presented at the meeting, as researchers continue to update their data right up until the meeting. To ensure you are using the most up-to-date information, please call the RSNA Newsroom at 1-312-949-3233.
For patient-friendly information on imaging technologies and procedures, visit RadiologyInfo.org.

Demonstration lets you get 'inside' autism

2008-12-03T11:32:00.000-05:00

Dan Berrett
By Dan Berrett
Pocono Record Writer
November 17, 2008

EAST STROUDSBURG — Imagine playing a game of Simon Says for an entire day while, all around you, lights flicker on and off and the drone of static blasts at odd times.

William Stillman asked about 50 parents, aide workers and teachers to attempt that exercise briefly during an all-day lecture, "Demystifying Autism," at First Baptist Church on Nov. 6.

Stillman, an author, speaker and person with autism, was invited to Monroe County by Youth Advocate Programs. It is a national organization, with an office in Kresgeville, that works with young people with different needs, from avoiding the criminal justice system to needing behavioral health services.
Stillman asked the audience members how they felt when the one-minute, Simon Says exercise was finished.

Confused, overstimulated and hopeless, they said.

"You know people who are experiencing and feeling that every day," he said. People with autism spectrum disorders tend to be more sensitive to sounds and sights than others. The hum of fluorescent bulbs, the squeak of high-pitched voices, or the clicking of high heels on a hard floor can overstimulate to the point of distraction.

Stillman said he has Asperger's Syndrome, which is a milder version of autism. As a child, he said his diagnosis was that he was "weird." He said he was seen as antisocial, arrogant, aloof and quirky. "Among my typical peers, I was harassed and abused," he said.

Throughout the day, he tried to show what it's like to see the world through autistic eyes. He also tried to reframe how people think about autism. For him, demystifying autism is less about altering how people on the spectrum behave, which is the focus of most therapies. Instead, Stillman wants to change the perceptions of those who live and work with people with autism.

While people with autism may be unable to speak or have very little affect, they can think, feel and understand far more than they let on, Stillman said.

Instead of behaving in ways that are conventionally familiar, an autistic person's responses may be caught in a web of neural blips and misfires. Stillman argues that it's similar to what happens w hen someone's hand goes dead when they fall asleep on it.

"What if your inability to use that limb defined you?" he asked.

The trouble communicating extends in both directions — from the autistic person to wider society, and vice versa.

The subtleties of human communication — figurative language, facial and body language, and eye-contact — can prove daunting to people with autism.

"Those of you who are neurotypical, or average, are privy to a code," Stillman said.

He related a story of a young boy with autism ordering a birthday cake. When the person working at the counter asked him what he wanted his cake to say, the boy laughed, explaining that cakes can't talk.

It can be equally puzzling for autistic people to express themselves to other people. Their thoughts and feelings may come out differently — in the form of rocking back and forth, hand-flapping and repeatedly opening and closing doors. Stillman calls these "autistic hieroglyphics" that must be decoded to be understood.

Many educators view these repetitive actions as habits to be avoided because they allow those on the spectrum to duck human contact.

Stillman views it differently.

"This is a strength because it has a purpose and allow s them to create control," he said. "You do it, too."

He described gum-popping, twirling a lock of hair or fidgeting with an earring as ways that neurotypicals achieve the same end. "We're all more alike than we20are different," he said.

And when people with autism bang their head, bite their hand or other people, run away or throw desks, it's a function of other issues, Stillman said. They should be seen less as problem behaviors, and more as efforts to communicate.

"It's important that we listen to what people with autism are telling us," he said.

Stillman also takes issue with the conventional vocabulary of autism. He balks at calling it a disorder and at describing "behaviors," such as hand-flapping, as things that must be corrected.

He also chafes at language suggesting people with autism are not mentally capable. Some organizations distribute cards with tips cautioning that those with autism may "not understand what you say" or "act upset for no apparent reason."

Stillman believes that people with autism understand far more than they let on. And he is adamant that they should be treated with the presumption that they have an intellect — even if its expression is subtle and easy to miss.

Stillman's message of empathy runs through many of his books, including "The Soul of Autism," "Autism and the God Connection" and "The Autism Answer Book."

He prodded his audience to spread his message. People increasingly will come into contact with those who are autistic.

Current estimates from the Centers for Disease Control and Prevention are that one in 150 8-year-old children are diagnosed with autism.

At that rate, about 300 children in Monroe Co unty would have received that diagnosis.

"Every year we'll have more and more little people coming into our schools," he said. "We have to gear up."

Gifted and challenged: When enlightening has to strike twice

2008-11-26T12:14:00.002-05:00

By SARAH LEMAGIE, Star Tribune

November 23, 2008

Tyler Lehmann could read "Harry Potter" books before he started first grade, yet an anxiety disorder left him unable to speak to his teacher and all but one of his classmates in Woodbury. Simon Fink attends a school for gifted students in St. Paul, but Asperger's syndrome can make it hard for him to interact with peers and focus on lessons.

School can be tough for kids with challenges ranging from emotional disorders to ADHD or dyslexia. For gifted students, too, it's not always a cakewalk, between boredom and the sense of isolation that can result from being a "brainiac."
Then there are students such as Tyler and Simon, who fall into both categories.
Raising children with learning barriers is a task in itself, "but when they're bright and gifted and have a high IQ, it's even more frustrating, because the teachers just don't understand how to work with these kids," said Bloomington parent Chelle Woolley, whose 17-year-old son, Matt, was in fifth grade when he tested out for both giftedness and attention deficit disorder.

A growing awareness of so-called "twice-exceptional" or "2X" students, many of whom qualify for both gifted and special education services, is prompting some researchers to take a closer look at their needs. This fall, educators at the University of St. Thomas and four metro-area school districts are using a $490,000 federal grant to launch a five-year project aimed at developing better ways to teach 2X children, helping schools identify them and training teachers to work with them.
The project came out of talk this spring between educators at several schools for gifted students, including Dimensions Academy in Bloomington, Capitol Hill Magnet School in St. Paul, the Atheneum program in Inver Grove Heights and the Gateway program in Woodbury.

Some of them said they'd been noticing more gifted students with disabilities.
"We were kind of bemoaning that we had all this great curriculum and these wonderful teachers and we had this headful of knowledge about education, but we weren't meeting the needs of these twice-exceptional kids," said Dimensions director Richard Cash.

Though they're often happier in gifted classes, 2X kids often struggle in school despite their intelligence. Processing lessons can be hard, or homework can disappear.

"We had documentation, data that proved that these kids are really bright, really smart, but then we had performance that was the exact opposite," Cash said.
For Simon, a seventh-grader at Capitol Hill, an organized teacher can make a big difference in his schoolwork and cut down on the frustrations that come with having Asperger's, a type of autism. "He needs a schedule," said his mother, Pemly Fink. "He needs to know what's expected of him."
Educators also worry because they don't know how many kids they're missing.
In 2004, about 7 percent of U.S. public school students were identified as gifted and talented, while about 14 percent received services under federal disability law, according to the U.S. Department of Education.

At Dimensions Academy, 6 percent of 130 gifted students have been identified as 2X, Cash said. But numbers vary by school, and pinning down how many gifted students have an impairment is tricky. Some gifted kids go unidentified for years because of a problem that keeps them from showing the full extent of their intelligence. In other cases, giftedness can mask a disorder.

That's not to say there are scads of apparently average kids who belong in gifted programs but are held back by a hidden condition. "If you look at the general curriculum you offer in schools, it really does satisfy the needs of the majority of our children," said project director Karen Rogers, a St. Thomas professor of gifted studies.

But experts say it's crucial to find the 2X students. Gifted students with a hidden disability can give the impression that they're merely slacking or muddle along until a crisis hits. And if teachers don't find and challenge gifted kids, they can check out mentally and become rebellious or depressed.
"It's really easy ... to think that gifted kids sort of have it made," said Erin Boltik, able learner coordinator for the Inver Grove Heights schools. But if they don't get the attention they need, she said, "They won't grow."
As for 2X kids, "When we've gotten them into our program, they've done a lot better, but it's still not a perfect fit."

The grant will allow the group to develop an identification method and adapted reading and math lessons for 2X children, as well as a certificate program at St. Thomas to train teachers.

'These kids feel so different'

Some 2X students do better in classes with other gifted kids not only because they're challenged more, but because they feel less isolated. Take Ben Starfeldt, a sixth-grader at Dimensions who has a disorder that makes it hard for him to keep his feelings in check. Ben's family knew early that he was gifted -- he scored 146 on an IQ test when he was 8 -- but his elementary years in mainstream classes were marked by blow-ups that could make his teachers hesitant even to let him go to the library alone.

"He was an easy kid to pick on: the smart kid," said his father, Ross. "That just made the emotional disorder worse."
"I think in a regular classroom, these kids feel so different," said Tyler's mom, Lisa Rau Lehmann. "He used to refer to himself in kindergarten as a freak, because he could read chapter books."

Tyler, now a sixth-grader in the South Washington County School District's Gateway program for gifted students, was a talkative, funny toddler who was good with his brothers at home. But in public, he fell silent and couldn't do group activities or tell people his name.

Tyler is selectively mute, a disorder that can render him unable to talk. He still has rough spots in school, like the time he froze up during a science lab last year and his teacher nearly gave him a failing grade. But years of work with experts have helped Tyler, who now speaks very well, his mother said.
Not all 2X students are doing as well. Cash said some have struggled so much academically that they've had to leave Dimensions, even though the school tried "thing after thing after thing" to help. Older students at the school must maintain a B- average. Not all the students who have fallen short are 2X, Cash said, but those "were the ones that were the most disheartening, because we ran out of strategies."
Sarah Lemagie • 952-882-9016

NIH Report: ADHD Medications Do Not Cause Genetic Damage in Children

2008-11-20T15:24:00.000-05:00

U.S. Department of Health and Human Services
NATIONAL INSTITUTES OF HEALTH NIH News
National Institute of Environmental Health Sciences (NIEHS)
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
For Immediate Release: Wednesday, November 19, 2008

CONTACTS: Robin Mackar, 919-541-0073,
Robert Bock or Marianne Glass Miller, 301-496-5133,

ADHD MEDICATIONS DO NOT CAUSE GENETIC DAMAGE IN CHILDREN

In contrast to recent findings, two of the most common medications used to treat attention deficit hyperactivity disorder (ADHD) do not appear to cause genetic damage in children who take them as prescribed, according to a new study by researchers at the National Institutes of Health (NIH) and Duke University Medical Center.

The study published online this month in the Journal of the American Academy of Child and Adolescent Psychiatry (JAACAP) provides new evidence that therapeutic doses of stimulant medications, such as methylphenidate and amphetamine, do not cause cytogenetic (chromosomal) damage in humans. The researchers looked at three measures of cytogenetic damage in white blood cells of each child participating in the study and found no evidence of any changes after three months of continuous treatment.

"This is good news for parents," said Kristine L. Witt, M.Sc., a genetic toxicologist at the National Institute of Environmental Health Sciences (NIEHS) and co-author on the study, which was funded through the Best Pharmaceuticals for Children Act by NIEHS and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), both parts of NIH. "Our results indicate that methylphenidate- and amphetamine-based products do not induce cytogenetic damage in children."

The researchers involved emphasize that the findings should not be interpreted as final proof of the long-term safety of stimulant drugs for the treatment of ADHD. "More research and close monitoring of children taking these medications for extended periods of time is needed to fully evaluate the physical and behavioral effects of prolonged treatment with stimulants," noted Scott H. Kollins, Ph.D., director of the Duke ADHD Program, where the study was conducted and a co-author of the paper.

ADHD is a disorder characterized by attention problems, impulsivity, and hyperactivity. About 3 to 5 percent of children in the United States have been diagnosed with the disorder, although several studies suggest 7 to 12 percent of children may be affected.

The current study included 63 children, ranging from 6-12 years of age, who met full criteria for ADHD but who had not previously been treated with stimulant medications. Children in the study were divided into two groups and treated by a board-certified child psychiatrist with either methylphenidate (commercially available as Ritalin LA and Concerta) or with mixed amphetamine salts (Adderall and Adderall XR). Blood samples were taken before the medication was started to establish baseline values for the cytogenetic measures that were analyzed in the study, and a second sample was collected after three months of continuous treatment. Forty-seven children completed the full three-month treatment schedule.

The researchers found no significant differences between the two groups of children with regard to age, gender, race, body weight, height, or ADHD subtype. The groups also showed very similar ADHD symptom levels at initial screening and children in both groups responded equally well to the medication.

The researchers looked at three standard indicators of chromosomal damage: structural chromosomal aberrations (breaks in chromosomes), micronuclei (small nuclei consisting of chromosome fragments produced by breakage or whole chromosomes lost from the main nucleus after the cell divides), and sister chromatid exchanges (exchanges of genetic material between a pair of identical chromosomes). "We did not see any significant treatment-related increases in any of these three endpoints," said Donald R. Mattison, M.D., senior advisor to the director at NICHD. "These results add to a growing body of evidence that therapeutic levels of these medications do not damage chromosomes," he said.

The study was designed to determine the reproducibility of findings from a previously published paper that reported methylphenidate-induced chromosomal changes in children with ADHD. That paper raised concern for the medical community and parents, given that some of the changes have been associated with an increased risk of cancer. The current study was not able to replicate the findings from the previous study. The new JAACAP paper extends the literature by using a larger sample size than previous studies, investigating more than one commonly prescribed medication, and providing well-characterized results that can be generalized to other ADHD populations.

"One way scientists evaluate each other's work is by attempting to reproduce the original experiment or study," said Witt. "We designed a study with specific modifications to address issues raised with the original study. Thus, our results are based on a significantly larger number of children who were carefully evaluated using rigorous, accepted standards, which allowed us to produce high-confidence data at the end of our study."

This study was supported by the NIH/NICHD Best Pharmaceuticals for Children Act pediatric drug development program and the Intramural Research Program of the National Toxicology Program at the National Institute of Environmental Health Sciences. NIH Clinical Trial NCT00341029: .

The National Toxicology Program (NTP) is an interagency program established in 1978. The program was created as a cooperative effort to coordinate toxicology testing programs within the federal government, strengthen the science base in toxicology, develop and validate improved testing methods, and provide information about potentially toxic chemicals to health, regulatory, and research agencies, scientific and medical communities, and the public. The NTP is headquartered at the NIEHS. For more information about the NTP, visit .

The NIEHS supports research to understand the effects of the environment on human health and is part of NIH. For more information on environmental health topics, please visit our website at .

The NICHD sponsors research on development, before and after birth; maternal, child, and family health; reproductive biology and population issues; and medical rehabilitation. For more information, visit the Institute's Web site at .

The National Institutes of Health (NIH) -- The Nation's Medical Research Agency -- includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit .

##

This NIH News Release is available online at:
.

To subscribe (or unsubscribe) from this list, go to
.

THE MIND More Than Just 'Quirky'

2008-11-20T15:18:00.001-05:00

By Jeneen Interlandi | Newsweek Web Exclusive
Nov 13, 2008
Liane Willey watched from behind a two-way mirror as doctors at the University of Kansas performed a series of psychological tests on her 5-year-old daughter. From the day the girl was born, Liane had worried about the child's behavior: as an infant, she would not suckle. As a toddler, she bit other children and refused to let anyone hug her. Doctors had continually assured the young mother that her daughter was normal, if a bit quirky. But with each passing year, 'quirky' had become less apt a description. By the age of 5, she had no friends and a profound obsession with monkeys. "If another kid came to school with a toy monkey or something with a monkey picture on it, she would freak out," Liane says. "She would try to take it away from the other kid, because she didn't get that not everything 'monkey' was hers." Liane had been a quirky child herself, and knew the difficult path that lay ahead for her daughter. "Growing up, I tried everything—psychotherapy, group therapy, antidepressants—none of them gave me a better sense of the world or my place in it," she recalls. "For her, I wanted something that would actually work, and I wanted them to put a name to the angst once and for all." Doctors were hoping the psychological tests would yield-up some clues.
The "Sally-Anne" test involved a simple skit: 'Sally' put a marble in the basket and then walked away. Once she was gone, 'Anne' took the marble out of the basket and put it in a box. When 'Sally' returned, the doctors asked where she would look for her marble. Anyone over the age of 5 is expected to know that Sally would look in the basket first, because she doesn't know that her marble has been moved. Expecting Sally to look in the box first suggests that the test-taker doesn't understand that other people don't know everything they know, and vice versa. Psychologists refer to this as a "theory of mind," and people who fail the Sally-Anne test are said to lack one, meaning they can't anticipate other people's thoughts and feelings. Liane's daughter failed the Sally-Anne test, along with every other assessment meant to screen for Asperger's syndrome, a high-functioning autism spectrum disorder, which the doctors promptly diagnosed her with. The good news was that they had caught it early.
It's not uncommon for girls with Asperger's to go undiagnosed well into adulthood. Like heart disease, this high-functioning autism spectrum disorder is 10 times more prevalent in males, so doctors often don't think to look for it in females. But some experts have begun to suspect that unlike heart disease, Asperger's manifests differently, less obviously in girls, and that factor is also causing them to slip through the diagnostic cracks. This gender gap may have implications for the health and well-being of girls on the spectrum, and some specialists predict that as we diagnose more girls, our profile of the disorder as a whole will change. Anecdotally, they report that girls with Asperger's seem to have less motor impairment, a broader range of obsessive interests, and a stronger desire to connect with others, despite their social impairment.
But much more research is needed before those anecdotes can be marshaled into a coherent picture. "Ultimately, we might want to look for different symptoms in girls," says Katherine Loveland, a psychiatry professor and autism researcher at the University of Texas in Houston. "But we have a lot more questions than answers at this point." Answering those questions has proven a tricky proposition: to draw any real conclusions, many more girls will have to be studied. And that means more of them will have to be diagnosed in the first place.
Anyone who knows a boy with Asperger's syndrome might tell you that the disorder (characterized by obsessive interests and an inability to connect with others) is impossible to miss. For starters, the things most boys get obsessed with are difficult to shrug off as quirky. Imagine, for example, a 7-year-old boy with encyclopedic knowledge of vacuum cleaners or oscillating fans but almost no friends or playmates.
Now, replace oscillating fans with something more conventional - say horses or books - and imagine a girl instead of a boy. A horse obsession, even one of frightening intensity, might fly under the radar. "Girls tend to get obsessed with things that are a little less strange," says Elizabeth Roberts, a psychologist at New York University's Asperger's Institute. "That makes it harder to distinguish normal from abnormal." That observation is consistent with a 2007 study of 700 children on the spectrum, which found that girls' obsessive interests reflected the interests of girls in the general population; the same was not true for boys.
In addition to more socially acceptable obsessions, Roberts says, the Aspie girls she sees are more adept at copying the behaviors, mannerisms and dress codes of those around them, than Aspie boys tend to be. "From my personal experience, they seem to have a greater drive to fit in than boys with Asperger's do," she says. "So they spend a lot of time studying other girls and trying to copy them." When social settings change, this can spell disaster. "As you move from high school to college, or from one group of friends to another, you have a whole new set of rules to learn," said one Aspie woman who asked not to be named. "Not only do you lose your own identity, but if you end up surrounded by the wrong people—mimicking their behavior without understanding the motivations behind it can lead to big trouble."
Of course, it's not just different symptoms that stymie diagnosis—cultural conditioning may also play a role. What looks like pathological social awkwardness in a little boy can seem like mere bashfulness or just good old-fashioned manners in a little girl. "We tend to notice shyness in boys as 'off,'" says Loveland. "In girls, we can almost see it as a good trait." And while boys are often diagnosed when they begin expressing their frustration as aggression and find themselves in trouble at school, girls —even Aspie girls—learn to internalize their feelings, not to act out, which can make them more anxious and less noticeable at the same time.
But even as they effectively mask Asperger's in girls, social mores might also make the disorder more harrowing for them. As they approach adolescence, girls face greater pressure to be sympathetic and empathetic than boys do. "By the time girls reach junior high, their social networks have become extraordinarily complex, and Aspie girls can't keep up with all the nuances," says Janet Lainhart, a doctor at the University of Utah's Brain Institute. "Boys struggle socially as well, but their peers mature much slower so their inability to empathize is seen as more forgivable."
Not everyone is persuaded that the symptoms of Asperger's differ between boys and girls. Ami Klin, director of Yale's autism research group cautions that no Asperger's trait can be defined as gender-specific quite yet. "It's a possibility," he says. "But I don't know anyone who has tested it and I can think of many exceptions to any rule you come up with about what narrow interests or other traits each gender has."
What everyone does seem to agree on is that without diagnosis, girls are unlikely to get the support—including special education and behavioral therapy—that has proven so helpful to boys with Asperger's. Even worse, their desperation for human interaction—combined with their inability to gauge the intentions of those around them—can make girls with Asperger's easy prey for sexual predators. "That is a real distinction and my real concern for girls on the spectrum," says Klin. "That they will be more susceptible to rape, abuse and drug addiction because of their social deficiencies and because they aren't getting the right guidance."
Despite the urgent need for more research, Klin says that scientists who study ASDs have effectively orphaned this population. Because there are so few of them, girls are often yanked from studies altogether so that they don't muddy up the data. As a result, only a very small body of work addresses the Asperger's gender gap, even though such studies could lead to better diagnosis of both autism and Asperger's.
Preliminary genetic analyses suggest that autism may be caused by different genes in each gender; and at least one MRI study has found differences in the brain anatomy of boys and girls on the spectrum. Simon Baron-Cohen, a renowned autism researcher, has shown that high levels of fetal testosterone may also play a role. But that work has yet to be replicated, mainly, say Loveland and others, due to a lack of funding or interest. "A lot of people see Baron-Cohen's work as 'politically incorrect,'" says Loveland. "Any time you start talking about a biological basis of sex differences, you are looking at controversy."
Meanwhile, many schools and clinics that work with children on the spectrum have begun forming girls-only clubs in an effort to build better support systems for girls with Asperger's. Lainhart has created a group at her Utah practice. The first things her girls, who range in age from early teens to late 20s, wanted to know: how to plan a dinner party and how to hold a dance. "They really want to understand how to do these very-female things, they just need the guidance to get there," she says.
Of course, getting that guidance depends on getting the right diagnosis early on. And it turned out that Liane's daughter wasn't the only one to fail the Sally-Anne test that afternoon. Liane herself had not been able to distinguish between what she knew and what Sally knew. Doctors diagnosed her right alongside her daughter. Liane says that diagnosis changed everything for her. "It was like a light bulb went off," she says. "I was able to seek out the right kind of treatment, and after a lifetime of mimicking others, finally find my own identity." And early diagnosis has helped her daughter (now a healthy teenager) avoid many of the pitfalls that Liane herself fell prey to. "Her experience has been totally different from mine," she says. "She's had special education and behavioral therapy from the time she was a young girl, and if I introduced you to my three daughters today, you wouldn't be able to tell which one has Asperger's."

The Special Needs Advisory & Preventive Family Support Services November Monthly Newsletter

2008-10-29T21:14:00.000-04:00

CALENDAR
Wed:11/12 @ 6 pm Garden City, NY Guardianship in NYS. An overview workshop for parents and caregivers. For location and detailed information RSVP to (516) 521 1099
Thursday 11/20 @ 12 pm Garden City, NY. Our core workshop: Addressing the long term legal, financial and quality of life issues families with special needs children and adults face. For location and detailed information RSVP to (516) 521 1100.
Thursday 11/27
HAPPY
THANKSGIVING

Tues 12/2 @ 5 PM Garden City, NY. Protecting benefit eligibility: A focus on special needs trusts, wills and legal family planning. For location and detailed information RSVP to (516) 521 1100.

PFSS Parent Training & Provider Training Courses
The Preventive Family Support Services is a 501c3, Not-for-profit division of the Special Needs Advisory Partners and is dedicated to bringing free, educational parent and provider trainings to schools, support groups, lectures,PTA's and our local community. If you would like to schedule a workshop, please call our main office to set up a meeting to discuss the group ypu'd like us to present to.
WORKSHOP SERIES
“Securing the long term quality of life for disabled individuals” Our core workshop and critical first step introduction to families addressing many areas of concern. Topics include information on understanding federal government benefits, navigating the SSI maze, addressing the legal and financial concerns of families with special needs children and adults, the importance of a properly drafted last will and testament, creating a letter of intent, aging out of the school system, finding support groups and lay advocates and the HIPA Act and it’s impact on the health care decisions of disabled individuals. Workshop runs approx 1:30 min

“Understanding benefit eligibility guidelines-Applying for OMRDD services in NY”

A workshop designed to introduce families to the benefits and entitlements that are offered to individuals with a formal diagnosis through OMRDD, The Office Of Mentally Retarded and Developmentally Delayed Persons in NYS. This workshop explains who and hat DDSO’s are and how they help, it defines the role of an MSC and advocates. It covers misconceptions of the “Medicaid” and “Medicaid Waiver” programs and helps families understand that benefit eligibility is NOT always based on income, but can be based on diagnosis. We address the importance of obtaining and securing eligibility, keeping eligibility and how even for families earning an above average income, there are services and programs that money can’t buy that loved ones must remain eligible for. Workshop runs approx 1 hr.

“An overview of Guardianship in NYS” this workshop explains the concept of becoming guardian of your own child with a disability at age of majority. We discuss the pro’s and con’s while we remain neutral and supportive of a families choice. We discuss how to choose a proper guardian, considerations when living as an elderly disabled individual, alternative housing opportunities, and the actual filing and surrogates court process entailed when acquiring guardianship. Workshop runs approx 1:30 min

"A Helping Hand For MSC's" Introducing Medicaid Service Coordinators and their agencies to PFSS and the resources we can provide to their consumers. This brief introduction helps MSC's identify specific needs of consumers that PFSS and SNAP can train and assist them with. MSC's who would like to participate in our helping hands program get weekly updates with articles, information, events, and training materials as another resource to provide their consumers. Workshop runs approx. 45 minutes

“Creating Your Letter of Intent" This workshop is by invitation only and is offered to families who have come through the process of securing their legal documents. Having the Letter of intent without securing legally the security of lived ones is offering false security. Our workshop is an interactive exercise where we help our families create their special needs loved ones' handbook. Topics include, transfer of critical and vital information, future planning for your loved ones' quality of life, on boarding a guardian to the real day to day care your loved one needs, documenting ideals for your loved ones' as they age, feelings on health, dating opportunities, religion, sex life, housing opportunities, finances and more. Workshop takes place over 2 days for 4 hours each session.

"Legacy Giving" Doing well by doing good. The basics behind tax favorable and philanthropic giving. Leveraging your assets and estate plan as a way to create a lifetime of care and consideration for a person, organization, or foundation. This workshop is done for individuals and families as part of their estate planning process. It has also been presented to philanthropic benefactors invited by non profit organizations as part of aligning their vision for continued support, and creative legacy gifting opportunities. Presentation time varies.

“The ABC’s of IEP’s”, The Americans With Disabilities Education Act Allows disabled individuals access to a free, fair public education. Our workshop addresses the importance and distinction between private vs in district evaluations, What to look for in an IEP (Individualized Education Plan), understanding the diagnosis and it’s prescribed care in a educational facility, what to do if your childs Individualized Education Plan is being “broken”, a parents rights to mediation and advocacy in the school districts, legal intervention methods, private placement schools and educational/living facilities. Workshop runs approx 45 min

"Planning For Today’s Alternative Lifestyle Families" When it comes to family matters, many of the legal, financial and quality of life considerations that apply to same sex couples can be confusing. Understanding how to protect your loved ones in this special needs situation can be confusing and complex. Addressing concerns now and in the future concerning children and their safety along with ensuring their emotional and physical well being is important for every family. Topics include guardianship of children, purchasing real estate and owning joint assets, the importance of wills and trusts, Health Information Privacy Act and allowing life partners to make critical health and legal decisions on their partners behalf, pension protection strategies, employer benefits, and retirement planning for same sex couples. Workshop runs approx 1:30 min.

For more information on any of these topics please call our main office and schedule a consultation. All workshops are copywrighted and presented by trained staff members of the Preventive Family Support Services.
xxx The Special Needs Advisory & Preventive Family Support Services November Monthly Newsletter

________________________________________
GUARDIANSHIP
For many parents, making decisions for children with special needs is a lifelong commitment. A Parents goal is always to take actions toward ensuring their loved ones health, well being, safety and ability to be cared for and age with dignity and respect. In order for parents to maintain their decision making authority in the lives if their loved ones, some may have to obtain legal guardianship of their own children as they reach the age of majority.

This can be a foreign concept to many, since caring for their children have become second nature to them. Many find out the hard way that they are legally locked out of the decision making process when they try to act in a situation and are denied information or other privlileges they once easily accessed. Some examples of these situations are when making health care decisions, advocating at school for their children, making legal decisions, and in all financial matters.
Parents may find their once willing doctors, not so willing to share information on a patient who has turned the age of majority, or their childs school unwilling to discuss her report card or IEP with mom and dad becuase the student is 19 and an adult.

There are different forms of guardianship and not all children with special needs should have guardians, but a good majority should and as parents who care for their children seek solutions to this dilemma, they should be aware of their rights,or lack there of , and their childrens rights, which are ever increasing with age, regardless of a diagnosis.

For help understanding more about Guardianship proceedings where you live and to discuss the pros and cons of guardianship for your loved one, attend on of our upcoming workshops or call our main office to schedule an orientation.

FOCUS ON FAMILY
Each month we look to bring you inspirational stories from our families. Each of them have unique, wonderful and loving children with special needs. This month we bring you our interview with Peter, a single dad raising his son MarcAnthony on his own since MarcAnthony was a baby. Peter is an amazing dad, hard working father, and is dedicated to providing the best care and every opportunity available to his son. Peter is an EMT for the NY Fire Dep't. His son MarcAnthony was diagnosed at birth with Cerebral Palsy, developmental delays, Asthma and is legally blind. We knew his story would serve as an inspiration to single parents raising special needs children everywhere. Thanks Peter!

Peter &
MarcAnthony

Question: Tell us about the people in MarcAnthony’s Life:

Peter: I get a lot of help from my mother, sister and my nephew. They are very supportive of me and Marc and love us very much. They have been there through it all and if anything ever happened to me, I know they would be there for him 100%. When I want to get away for the weekend to refresh my mind and have some down time they will stay with Marc and I feel comfortable with the level of care they can provide him and it gives me peace of mind.

Question: What are some of the pressures you feel as a single parent?
Peter: At times I feel overwhelmed but I can’t let those feelings take over. What I do every day is for Marc's best and as long as I take good care of him, we will be all right. Since he was a small baby his mother has had no contact with him and takes no part in the joy of sharing his life. She has left this responsibility up to me, and I do all I can to fend for Marc's rights as a special needs child. At this point I really feel that Marc is better off with me instead of with his mother because she should naturally want to be a part of his life, yet, she chooses not to be there for him.
Question: Tell us about a typical day at your house
Peter: A normal day starts at 5 am with me getting up for work and then getting Marc ready starting at 5:30 am . I have to get him cleaned up and dressed with his backbrace, and then I have to put him into his wheelchair. My mom comes to make breakfast and I feed him and spend time with him before school so by 6am I'm feeding him breakfast and between 6:20-6:30am I'm out the door to be at work by 7:30 am . Every morning before I go I make sure that Marc has all his school stuff in his school bag and has his jacket on and he is ready. By 7:15 am my mother takes him down on the elevator (if it is working) to meet the school bus by 7:30am . Then Marc is at school until 3pm and usually by 4:15 pm Marc is home and I'm home shortly after. We go over what went on at school and then it’s time for dinner.

Question: What do you and MarcAnthony do at home? What things does he like to get into?

Peter: When he is home from school Marc is playing, watching tv and being a little kid. He does not get any home work but I reinforce the things he learned during the day to make sure he spends time studying and so I know what’s going on at school. Marc loves interactive toys, games, tv, music .going outside, swimming in the pool. He is very smart for a child with special needs.
Question: What are some of the challenges raising your son who is growing into a young man?
Peter: Giving Marc a bath is very hard since I live in an apartment I do not have room for special equipment to lift him. I have to lift him myself and put him in the tub to bathe him and lift him out to dry him in the bedroom. To stay on track, I try to do this every night between 7:00 to 7:30 pm . As he gets older and heavier it is tuff, but I am strong and he need me to do this for him. When Marc gets sick his cold triggers his Asthma which takes a lot out of him. If he is getting sick he needs me and I would have to stay home and treat him with his asthma meds. Usually after a few treatments, time with me and some rest my mother can stay with until he is 100% so I don't have to miss work a lot. Needless to say I do not get a lot of chances to take vacations because most of my vacation time is used on Marc when he gets sick. I do enjoy scuba diving and have a time share I try and get to. I have friends I am close to who know me and Marc and enjoy spending time with is and really support me as a dad.
Question: What are some of the challenges you have faced as a parent that other parents might be going through?
Peter: I think hardest thing I had to deal with over the year is the not knowing. Where to find the information needed to help me and my son has never easy. There are not many support groups where we live and the ones we have found are at times that I can not make.
Any advice for single parents and parents in general raising special needs children?
Get informed! I think the best thing to do is to ask your child school about programs, get a social worker to help you and talk to as many resources as you can. Get connected to other parents and find ways to be involved with networks of information.

10 Myths About Autism

2008-10-27T22:52:00.000-04:00

Experts Examine Misconceptions About Autism
By LARA SALAHI and RADHA CHITALE
ABC News Medical Unit
Oct. 23, 2008 —
As the number of Americans diagnosed with autism spectrum disorders climbs, so, too, does the number of questions surrounding this disorder. Namely, what is autism, and what is causing a rise in autism diagnoses among adults and children nationwide?
Click here to go to ABC News' On Call+ Autism page.
You will find many interesting articles: (http://abcnews.go.com/health/autism)
Amid these questions, television shows and magazines feature a barrage of stories and imagery -- families rallying for and against vaccines, debates between medical experts pointing to both genetic and environmental causes, and images of individuals diagnosed with autism who struggle to speak and function independently, while others can interact with others and are able to hold jobs. For many, these competing messages may make this already complex condition even more confusing.
Fortunately, doctors and researchers are learning more about the causes and characteristics of autism.
The following are answers to 10 common myths, that may help us better recognize the range of symptoms we call autism spectrum disorders.
Myth: Autism is an emotional or mental health disorder.
While physical or social behaviors of individuals with autism may suggest that they have a psychological disorder, autism is actually a biological illness that affects the brain's growth and development.
"In the case of autism, the parts of the brain that are most affected seem to impact three areas of functioning," said Michael Alessandri, executive director of the University of Miami's Center for Autism and Related Disabilities. "Social behavior, communication and restricted and repetitive rituals and routines are ways that the child or the adult with autism interact with the environment."
Although autism is now understood to be a neurodevelopmental disorder, Alessandri, an expert for ABCNews.com's OnCall+ Autism section, said autism can still be considered a complex disorder because its range of symptoms is so diverse.
"Scientists and clinicians now understand that autism is not a singular entity, but rather, a variety of syndromes that ... create the autism spectrum disorders," said Alessandri.
Myth: There is an autism epidemic.
The word "epidemic" often implies a sudden burst in the number of individuals within a fixed time who have, in this case, autism.
Visit the OnCall+ Autism Center
Although the CDC reports that one out of 150 children born have an autism spectrum disorder, some experts are quick to question whether a surge in autism cases is actually occurring. Some are more likely to link the upshot of numbers to the combination of a broader definition of autism, a wider spectrum, and an earlier diagnosis.
"The condition has not become more widespread, but there is more diagnosis of autism," said Dr. Bob Marion, director of Children's Evaluation and Rehabilitation Center at Albert Einstein College of Medicine in New York.
Sheila Wagner, assistant director of the Autism Center at Emory University in Atlanta, added that more awareness of symptoms has allowed more people to identify individuals who have autism.
"There's a lot of media exposure to autism, in television and movies," said Wagner. "This has made [autism] more recognizable in the lay population."
Myth: Autism can be cured.
Some parents may allude to a certain diet, medicine, or set of behavioral treatments that have cured their autistic children, where other parents may try the same mode of treatment and see no results. While there are treatments created to improve an autistic child's ability, there is no known cure for autism.
"We do know that with early intervention with younger children and Applied Behavioral Analysis, we can improve a child's functioning," said Marion.
Applied Behavior Analysis, or ABA, is one form of therapy for newly diagnosed children. It includes repeating behavioral activities to improve a child's social and physical functions.
According to Marion, there is no blanket treatment for autism, and it is up to the individual's doctor to assess what treatment will offer the best benefit for each autistic child.
In some cases, Marion said, behaviors, including eye contact, interaction with others and development of language skills, will significantly improve -- but the underlying biological disorder will not change.
"And that is definitely not a cure," he said.
Myth: Autism is the result of cold and unemotional parents.
In the 1940s, Austrian doctor Bruno Bettelheim theorized that autism was a result of parents, especially mothers, who did not love their children. Children in such situations would withdraw and become autistic, Bettelheim believed.
However, researchers have thawed the "refrigerator mother" theory. According to medical experts, a child's autism diagnosis has nothing to do with how the child is raised.
"We don't know if there are any things that a parent can do or not do, conclusively, will determine whether their child gets autism or not," said Dr. Daniel Geshwind, director of UCLA's neurogenetics program and center for autism research. "Most of the evidence right now points to there being a very strong genetic predisposition in most cases of autism, but not all."
Myth: Individuals with autism always have hidden or exceptional talents.
Stephen Wiltshire, 34, is best known as the human camera. He can replicate architectural designs and landscapes down to each blade of grass -- even if he is only given one opportunity to observe the area he is drawing. Wiltshire has reproduced panoramic scenes of Tokyo, Rome and London by memory after one short helicopter ride over each of the cities.
Wiltshire is an autistic savant. That is, he has extraordinary cognitive skills that allow him to recall details of designs, numbers and measurements that are normally considered too difficult to remember.
The concept of an autistic individual as a savant may have been popularized by Dustin Hoffman's character in the movie "Rain Man."
But while Marion acknowledges that there is a minority group of individuals with autism who have unusual islets of skills, savants are an unrealistic portrayal of the majority of individuals on the spectrum. He said most do not have talents or skills that distinguish themselves by extraordinary talents.
"There are strengths and weaknesses in every child," said Marion. "It's important for every child with autism to have a multidisciplinary evaluation by health professionals who have experience in assessing a child's skills and deficits, to come up with an educational plan that will benefit the child the most."
Myth: Repetitive or ritualistic behaviors should be stopped.
One of the classic indicators of autism is repetitive and ritualistic behaviors, according to the Diagnostic and Statistical Manual of Mental Disorders (DSM IV), a physician's tool to diagnose autism.
While these behaviors -- which can include hand flapping, banging on walls or rocking back and forth -- may seem odd, they do have a purpose: they can be calming; they can feel good; and they may help the individual communicate with others, said Wagner.
Repetitive behaviors may only pose a problem if they begin interfering in family life or if they prevent those with autism from functioning independently, Wagner added.
However, according to Dr. Pauline Filipek, associate professor of pediatrics and neurology at the University of California, Irvine, a child may learn to outgrow repetitive behaviors.
"Often, as an individual gets older, they learn that such behaviors make them stand out in society, and they learn to miniaturize those behaviors," said Filipek.
Myth: Individuals with autism are unable to build social relationships.
"This is a generalization and needs to be individualized because the spectrum is so wide," said Marion.
In short, social relationships are possible for some individuals on the autism spectrum, but not for others on the most severe end of the spectrum, Marion said.
The DSM IV, which includes diagnosing guidelines for autism, lists "impairment in social interaction" as one indication that an individual can have an autism spectrum disorder. But not every child on the autism spectrum will have the same degree of difficulty connecting with others.
"At the most severe end of the spectrum, yes, that's true," said Marion. "But there is a multitude of children who have friends, and even some who do have close relationships."
Myth: Autistic individuals are a danger to society.
"It is a disservice to think that all people with autism are dangerous," said Wagner.
The idea rises from numerous news stories of individuals diagnosed with Asperger's syndrome, a high form of autism, who have been accused of burglary and, at times, murder.
However, if you look at the entire population of people on the autism spectrum, the number of people involved in crime is small, said Wagner. If someone with autism were to act out, it may be due to frustration or perhaps physical or emotional overstimulation, not necessarily malice, she said.

REFERENCE POINTS: Health Resources for Transitioning Youth

2008-10-27T22:51:00.000-04:00

THE 2008 FACT SHEET ON HEALTH CARE ACCESS AND UTILIZATION: ADOLESCENTS AND YOUTH ADULTS This fact sheet contains the most recent available data on health insurance coverage, preventive and other health services, and unmet need among adolescents and young adults ages 12-24, including those with special health care needs. The fact sheet, produced by the National Adolescent Health Information Center at the University of California, San Francisco, with support from the Maternal and Child Health Bureau, highlights trends and presents data by age, gender, income level, and race and ethnicity. . The fact sheet is available at . http://nahic.ucsf.edu//downloads/HCAU2008.pdf A list of other NAHIC-produced briefs and fact sheets is available at http://nahic.ucsf.edu/index.php/data/article/briefs_fact_sheets
From: Monday Morning in Washington, DC

HEALTH COVERAGE IN COMMUNITIES OF COLOR: TALKING ABOUT THE CENSUS NUMBERS From Families USA, this 4-page document provides context to recent Census data. Although the numbers of uninsured declined between 2006 and 2007, the numbers are still considerably higher than in 2000. People and children of color remain more likely to lack health insurance than their non-Hispanic White peers. http://www.familiesusa.org/assets/pdfs/minority-health-and-the-census-numbers.pdf

TALKING WITH YOUR DOCTOR AND OTHER HEALTH CARE PROFESSIONALS
This 18 minute video is designed to teach adolescents and young adults (AYAs) how to communicate more effectively with health care providers so that professionals understand their concerns, answer their questions and provide the information and supports they need to be more in charge of their own health. This video was developed by the Institute for Child Health Policy. The video can be viewed at http://video.ichp.ufl.edu/twyd.php

THIS IS HEALTH CARE TRANSITION
Developed by the Institute for Child Health Policy at the University of FL, this video is intended to help youth and young adults with chronic health conditions and their families be better prepared for adulthood, especially the move from pediatric to adult-oriented health care. This video is available on the web at: http://video.ichp.ufl.edu/tihct.php ICHP has developed an online brochure that describes and provides access to all of their health care transition product and is available at: http://hctransitions.ichp.ufl.edu/hct-promo/

MY HEALTH, MY CHOICE, MY RESPONSIBILITY: A TRAINING PROGRAM ON HEALTH SELF-ADVOCACY
My Health, My Choice, My Responsibility is an 8-week training program written to promote health advocacy among adults with developmental disabilities. Each of its eight sessions covers a health area and focuses on making healthy decisions on a daily basis. The program also includes three tools designed to help participants take control of their health, including a tool for preparing for a medical appointment, record keeping of health needs and medical history, and a plan containing health goals that are developed over the course of the seminar. For more information go to http://www.wihd.org/matpub/matpub_index.html
From: the October 2008 NCPAD Monthly Newsletter

SINCE YOU'RE NOT A KID ANYMORE: IT'S TIME TO BE MORE IN CHARGE OF YOUR HEALTH CARE This 31 page booklet, also developed with funding from CMS, is a health care transition guide for teens in middle school. It includes information and activities designed to help young teens with special health care needs take a more active role in their own health care. It is available for download as a full color PDF document. The booklet is available, as a PDF at:
http://hctransitions.ichp.ufl.edu/pdfs/cms_synaka_lowres_07.pdf
From: Health Care Transition for Youth with Special Needs Digest [transition@mchenet.ichp.ufl.edu]

IT'S TIME TO TRANSITION! A WORKBOOK FOR YOUNG ADULTS, THEIR FAMILIES, AND THEIR MEDICAL PROVIDERS This workbook was developed to help organize the medical transition process into a smooth and successful move from pediatric focused to adult focused health care. The workbook is available on the web as a PDF at:http://www.cdphe.state.co.us/ps/hcp/transition/workbook.pdf

BUILD YOUR OWN CARE NOTEBOOK WEB SITE
A major role of a care notebook is to help parents/caregivers maintain an ongoing record of their child's care, services, providers, and notes. This notebook is a great tool in empowering families to become the experts on their child's care. It is also a way to maintain the lines of communication between the many providers and services that help care for a child and their family and can serve as a helpful tool for transitioning youth. For more information, go to http://www.medicalhomeinfo.org/tools/care_notebook.html

Reaching an Autistic Teenager

2008-10-24T12:51:00.000-04:00

Reaching an Autistic Teenager
By MELISSA FAY GREENE
Published: October 17, 2008
On a typical Monday morning at an atypical high school, teenage boys yanked open the glass doors to the First Baptist Church of Decatur, Ga. Half-awake, iPod wires curling from their ears, their backpacks unbuckled and their jeans baggy, the guys headed for the elevator. Arriving at Morning Meeting in the third-floor conference room, Stephen, his face hidden under long black bangs, dropped into a chair, sprawled across the table and went back to sleep. The Community School, or T.C.S., is a small private school for teenage boys with autism or related disorders. Sleep disturbances are common in this student body of 10, so a boy’s staggering need for sleep is respected. Nick Boswell, a tall fellow with thick sideburns, arrived and began his usual pacing along the windows that overlook the church parking lot and baseball diamond. Edwick, with spiky brown hair and a few black whiskers, tumbled backward with a splat into a beanbag chair on the floor.
“O.K., guys, let’s talk about your spring schedules,” said Dave Nelson, the 45-year-old founding director. He wore a green polo shirt, cargo shorts and sneakers and had a buzz haircut and an open, suntanned face. After his son Graham, 19, was given a diagnosis of autism spectrum disorder (A.S.D.) as a young child, Nelson left the business world and went into teaching and clinical and counseling work. On that Monday, he was instantly interrupted.
“I had a very bad night!” Edwick yelled from the floor. “Nightmares all night!”
“What was disturbing you, Edwick?” Nelson asked.
“What do you think?” Edwick cried in exasperation. “It’s St. Patrick’s Day!”
“What’s upsetting about that?” Nelson asked.
Edwick dropped his shoulders to relay how tiring it was to have to explain every little thing. “Leprechauns,” he yelled.
“Oh,” Nelson said. “I thought maybe it was the tornado that hit downtown on Friday night.”
“No, not the tornado!” Edwick yelled.
Nick stopped pacing to comment: “Edwick’s not scared of tornados; he’s scared of leprechauns.” I burst out laughing and so did the faculty members, while Nelson seemed to relish the interruption rather than find it a hindrance to the morning routine. His hidden agenda was precisely to entertain outbursts like Edwick’s, while making room for a sardonic intelligence like Nick’s. No matter the stated purpose of Morning Meeting, the true purposes were always the same: conversation, debate, negotiation, compromise and the building of relationships. T.C.S.’s only serious admissions requirements are that a boy should have at least some functional language and that there’s a good chance he can become part of the “community” of the school name.
The group turned to registering for spring classes. In addition to biology, algebra 2/trigonometry, English literature and U.S. history, there were the electives: Dragon Lore, Comic Books, How to Shop for Bargains and the History of Snack Food. Past electives included All About Pirates, Spy Technology, Ping-Pong, Dog Obedience, Breaking World Records, Unusual Foods and Taking Things Apart. (“I just wish they’d come up with a second-quarter class, Putting the Things Back Together,” Nelson told me.)
“I knew it!” Edwick complained, mashing about on the beanbag chair. He was disappointed because no one picked the elective he’d proposed: the History of Meat.
What makes the Community School unusual is not its student body — plenty of schools around the country enroll teenagers with an autism spectrum disorder. But, like about only two dozen schools in the country, it employs a relatively new, creative and highly interactive teaching method known as D.I.R./Floortime, which is producing striking results among T.C.S.’s student body. (D.I.R. stands for developmental, individual differences, relationship-based approach.) The method is derived from the work of Stanley Greenspan, a child psychiatrist and professor of psychiatry, behavioral science and pediatrics at George Washington University, and his colleague Dr. Serena Wieder. D.I.R./Floortime can be effective with all kinds of children, whether they have developmental challenges or not. As applied by T.C.S., it is an approach that encourages students to develop their strengths and interests by working closely with one another and with their teachers. The goal for students is neurological progress through real-world engagement.
With the skyrocketing diagnoses of A.S.D.’s in recent years, parents and school systems are challenged as never before to find techniques to keep these teenagers engaged, productive and nondespairing. Boys with A.S.D. (they outnumber girls four to one) who were difficult to console, to teach, to restrain at age 4 or 8 can be nearly impossible for parents and teachers to manage and to steer at 14 and 18. While a 25-pound toddler’s tantrum is wearying, a 150-pound teenager’s tantrum is dangerous. Puberty and young adulthood take many of these young people unawares.
How best to serve this population remains a subject of debate, because autism is a “final common pathway” diagnosis, meaning children arrive here from different points of origin, are troubled by a wide variety of issues and respond to different strategies. “You meet one child with autism and, well, you’ve met one child with autism,” says Linda Brandenburg, the director of school autism services at the Kennedy Krieger Institute in Maryland. Given the wide range of expression in autism and related disorders, there is no one-size-fits-all intervention. “We now know that there are several different models that seem to work — some more behavioral, some more developmental, some more eclectic,” Dr. Fred R. Volkmar, director of the Yale Child Study Center, told me. “What we really need to be doing, what the law says, is design programs around the kids rather than force kids into a program.”
The vast majority of programs for autistic youth in the U.S. use an approach called Applied Behavior Analysis, in which teachers and therapists use well-established techniques of reward and punishment to shape a student’s actions toward goals like toilet training, learning vocabulary or completing a puzzle. A typical A.B.A. lesson rewards memorized responses, specific behaviors and compliance to external directives — “Pick up the fork, Jared.” An instructor may move the child’s arm, hand and fingers to model the desired behavior. The child is then rewarded — with praise, with hugs, with a treat — when he performs the act correctly. As the first method to work with profoundly self-absorbed children and to demonstrate that progress could be made, A.B.A. — which came to national prominence in the late 1980s — has been a lifesaver for countless families. Critics worry that the method focuses on modifying the symptoms rather than addressing the underlying disabilities, and many say they fear that A.B.A.-trained children often do not “generalize,” that is, take a behavior learned in one setting and apply it in another. A child may learn to make eye contact in response to “How are you?” and to reply, “Fine, how are you?” But such rote memorization does not give the child the intuition to know when a stranger is to be greeted warmly and when to be avoided, and it does not enable him to meet his grandmother with greater warmth than the grocer.
“All teachers and therapists use elements of behaviorism,” Nelson told me. “As an intervention for autism, the A.B.A. movement was one of the first to suggest how intensive the intervention has to be — maybe 40 hours a week — to see results. This notion of intensity has been valuable to everyone that followed.”
The Community School — with a teaching staff of 12 and a $25,000 tuition — employs the intensity but not the methodology of A.B.A. Rather than spend time on a student’s mastery of a skill preselected for him by an adult, the idea is to harness a student’s energy and desire to learn. As a student interacts with peers and teachers, solves problems and expresses his ideas, his behavior should naturally begin to lose its rough edges. The essence of Floortime is that a person learns best when self-motivated, when an inner drive sparks the acquisition of skills and knowledge.
As with A.B.A., achieving D.I.R./Floortime’s far-reaching goals for students requires intense interaction — a wooing of a child from his or her remove — for as many hours of the day as parents and teachers can physically sustain. Dr. Greenspan would like to see an autistic child productively interacting with an adult for most of his waking time, seven days a week. Those drained parents who have the means hire therapists and trained baby sitters to help them approximate that schedule, during either home-schooling days or out-of-school hours.
Because the goal of D.I.R./Floortime is the kindling of a student’s curiosity, intelligence, playfulness and energy, the lessons can take on a spontaneous, electric quality. I have seen sessions with young children during which the child and his or her therapist or parent tumbled across the house, behind the sofa, into closets or onto the porch, picking up balls, puppets, costumes, books and snacks along the way. At T.C.S., classes can look like debates between equals; school days can include board games, sports, plays, science experiments, music, art, ropes courses or rafting trips in which all students and teachers playfully compete, contribute and perform. All the boys at the school probably have average or better intelligence. Onlookers might call a few “high functioning” (though that adjective has no clinical meaning), and T.C.S. is an accredited high school and middle school, offering college prep and high-school courses to students able to complete a conventionally rigorous course of study. (Other students pursue less-demanding tracks oriented toward getting a G.E.D., attaining job skills or developing independent-living skills.) So it’s not all fun and social time. But rote learning is never the goal; the goal is that the students should be able to think, to feel, to communicate and to learn. Most of the kids are making the first friends of their lives here.
T.C.S. does not promise miracles. It does not promise to be a perfect fit for every teenager with an A.S.D. Dave Nelson does not invest great faith in the possibility of leaving the autism spectrum behind, no matter how much parents (like himself) would love to believe it. The breakthroughs at T.C.S. are subtle rather than headline-grabbing, noticeable at first only to the adults closest to the kids and to the students themselves. But for these families, any forward motion can inspire a moment of real hope and happiness, and quite remarkable progress happens every day.
Stephen, 17, a solidly built boy with a sweet face under a heavy thatch of bangs, entered T.C.S. in 2005 prone to blowups of alarming power. His parents adore their son and have been whipped about like sailboats by his furies. His first year at school, during group construction of an outdoor marble-run, a boy fumbled and a marble dropped. “I am going to assassinate him,” Stephen exploded. “I. Will. Behead. Him.” Stephen’s academics are top-notch, but the stance of the Community School is not to ignore a student’s psychological deficits while skipping ahead to schoolwork or life skills. It doesn’t matter that Stephen is at home with algebraic theorems if he is going to react like a toddler when ambushed by a mad or sad feeling.
Ty Martin, 14, is a cute and curly-haired guy who lives in terror of loud or strange noises. The faux thunderstorm in the produce aisles at the grocery store makes it difficult to take him shopping. A classmate’s coughing or a siren in the distance distracts him from schoolwork. His mother often was obliged to retreat to a windowless basement room at home, hugging and soothing her son when the outside world — especially lawn crews next door with leaf-blowers — overwhelmed him. “He doesn’t like crows,” Judy Martin told me last spring. “If crows are at a park, he’ll go from happy to berserk in five seconds. If we go to a restaurant, we’re all on edge, praying the bartender doesn’t turn on the blender.”
Sam Gross visited San Francisco with his mother two years ago at age 15. During a tour of Alcatraz, the handsome olive-skinned boy climbed a nearby fence and prepared to dive. Had his mother not spotted him and screamed, Sam would have been injured or killed by falling onto the rocks. But he was not trying to kill himself. He planned, as he explained in his monotone voice, to turn into a merman and swim back to the mainland.
Then he began to deteriorate. For two years, he spent every day in a ball under his blankets, rising only to pound either side of his head with such ferocity that two bald spots bloomed under his fists, then dangerously swelled. He had to be sedated to stop the self-battery. By the time Sam reached the Community School, he was nearly incommunicative. Whenever he began using his head like a punching bag, the teachers asked him to stop, and he did, but otherwise showed no sign that he heard them.
Students arrive at T.C.S. trailing long histories of school failure and humiliation, suspension, expulsion, truncated transcripts, social isolation, victimization, self-loathing, suicidal ideation or years of home-schooling patched together by mothers forced to leave their jobs. “On our first visit with Dave Nelson, Ty started screaming: ‘I hate this place! I want to leave right now!’ ” Judy Martin says. “Most principals don’t want to work with a kid like that. But what I saw on Dave Nelson’s face was ‘I can work with a kid like this.’ ”
Many prospective parents begin to weep during their intake interviews with Nelson. For them and their children, this place represents something of a last chance.
While there is no direct relationship between Dr. Stanley Greenspan and the nation’s D.I.R./Floortime schools, other than one of mutual respect, the theoretical underpinning of these schools relies on his argument that human intelligence itself is constructed out of the warm back-and-forth signaling between child and parent, beginning at birth. Jean Piaget located a child’s investigation of causality in the material world, for example, with experiments like pulling a string attached to a bell, but Greenspan and his colleague Serena Wieder see these insights occurring in the emotional realm, when a baby learns that his or her smile brings the parent’s smile. Brain development is not a solo pursuit but a rich and complex flowering that occurs only in the hothouse of human relationships.
What does this have to do with autism? A child born at risk of an A.S.D. has cognitive and sensitivity issues that inhibit engagement. Pleasures enjoyed by a typical baby can upset him: a mother’s face seems too close, so the infant cranes away; the father’s tickles may produce fear reflexes rather than laughter. Meanwhile the sunlight is burning his eyes, the diaper scrapes his skin and the baby begins avoiding interaction with people at the cost of normal brain development.
I begin to picture the brain metaphorically as a tangled ball of Christmas lights. When you plug it in, there are strands that light up perfectly and there are dark zones where a single burned-out bulb has caused a line to go out. If the bulb for Exchanging-Smiles-With-Mother doesn’t light up, then Empathy won’t be kindled farther along the strand, or Playfulness, or Theory of Mind (the insight that other people have different thoughts from yours). The electrical current won’t reach the social-skill set, the communication skills, creativity, humor or abstract thinking.
According to the D.I.R. perspective, emotion is the power source that lights up the neural switchboard. D.I.R./Floortime’s goal is to connect autistic students with other people as a way of fueling their cognitive potential and giving them access to their own feelings, desires and insights. The latest findings in the field of neuroplasticity support D.I.R.’s faith in the capacity of the human brain to recoup and to compensate for injury and illness. “Early intervention is optimal,” Dr. Greenspan told me, “but it’s never too late. The areas of the brain that regulate emotions, that sequence ideas and actions and that influence abstract thinking keep growing into a person’s 50s and 60s.”
T.C.S. students are masters of withdrawal, and for the D.I.R. model to work, each student must be an active partner in his own education. But how do you ignite the enthusiasm of an autistic teenager who has long since walled himself off from the outside world; who uses little language or who screeches in random yelps or vulgarities; who flips out when pried away from his computer game; who speaks to you, if at all, in long monologues on arcane subjects with zero interest in your response? What do you use as a staging ground for a relationship with an increasingly furious and despairing adolescent?
The Floortime technique might be summed up as: “Follow the child’s lead and challenge the child.” It is most easily visible on the videotapes documenting Dr. Greenspan’s 25 years of clinical work with younger children. In each video, the gangly psychiatrist crouches on the floor of his comfortably shabby home office in Bethesda, calling instructions to parents about how to catch the attention of and interact with their remote-seeming children. “I treat everything the child does as having a reason — to feel calmer, for example, or to feel excited,” Dr. Greenspan told me. “Often the parents have notions of what the child should be doing, so they’re trying to control the child rather than build on the child’s natural interests.”
In my favorite video, a 30-something husband and wife flank their 4-year-old daughter; the husband, in round horn-rim glasses, sits forward on the sofa; his wife curls up on the floor nearby. Their daughter, with chopped-off blond hair and a doughy face, looks to me like Helen Keller, pre-Anne Sullivan. Seeming almost blind, deaf, mute and mentally retarded, she bounces from sofa to table to wall. She is without affect, her movements ungainly and her eyes unfocused. She makes slurping sounds, as if she has reached the bottom of a drink with a straw. “We’re going to try to get a continuous flow of back-and-forth going here,” Dr. Greenspan says.
The mother smiles sadly, knowingly. “That would be nice,” she says.
“We’re going to build on what she does,” the doctor says.
The girl is flapping a plastic toy in her hand. “Will she give it to Daddy?” Dr. Greenspan asks.
“Can I see that?” the father asks as the child roams the room. The child seems not to hear him. But then the girl, traveling by, indifferently drops the toy into his outstretched hand. Delighted, the father says: “There’s a star on it! And there’s a triangle!”
“Here you’re losing her, Daddy,” Dr. Greenspan says, and sure enough, the girl escapes and heads for a wall. “If you’re trying to educate her with complicated language that she’s not processing, then you’re going to lose her. You want to change your orientation from educating her to interacting with her.”
The child picks up a bright plastic flowered eyeglass case off a table and twiddles it. “See if she’ll give it to you,” the doctor prompts.
“Can you give it to Mommy?” the mother asks, and surprising everyone, the girl hands it over. “Thank you!” the mother says.
The mother hides the eyeglass case behind her on the floor. The girl treads in place for a moment, swinging her arms and slurping. She begins to laugh a strange, heaving laugh. “Huh-huh-huh!” The mother moves a little to show that she’s sitting on the eyeglass case, and the child dives for it.
“Good, good!” Dr. Greenspan cheers.
“Can I have it back?” the mother asks. The mother hides it inside her own sweater, half-exposed.
“Let her get it! Let her get it! Let her get it!” Dr. Greenspan says in excitement. It is of paramount importance to him that the child initiates her own ideas and motor plans. Every time her parents start to physically turn or steer her, he stops them, crying: “Let her do it! Let her do it!”
The mother next slips the eyeglass case into the bib of her daughter’s pink overalls, and the girl stops in her tracks. Dr. Greenspan is prepared to leap over furniture to block the parents from giving her a clue. Suddenly, slowly, the girl’s gaze drops. . . . She finds the eyeglass case! In her own pants! “Ooh! Ooh! Ooh! Ooh!” she says.
“Make it more complicated!” the psychiatrist pleads.
“Can we go give it to Daddy?” the mother asks.
The mother walks over to the father, who hides the eyeglass case in his shirt. The girl freezes in confusion. The psychiatrist loves a moment like this and tries to prolong it. He sees momentary frustration as a vitally creative occasion. He urges parents to be “playfully obstructive.” He’s not after results; he wants to see a child thinking. “She can do this,” he advises them.
The girl slowly looks down, plucking at her overalls. For a moment it seems they have lost her. But — no — she’s looking inside the bib, where she last found the eyeglass case. It’s not there. Again she freezes. She must be thinking, “Mommy went to Daddy. . . . ” Slowly she turns toward her father.
The expression on the father’s face, when his daughter plucks the eyeglass case from his shirt, is of heartbreaking gratitude. A moment later, he pitches the eyeglass case over her head to his wife. The girl turns and beholds her beaming mother holding the eyeglass case. “Ooh! Ooh! Ooh!” she says. Mom pitches the case back to Dad, and when the child turns to run to her father, she skips in her delight, her face radiant, making a hoarse sound of laughter.
Children with autism — especially Asperger’s — are famous for all-consuming interests in Matchbox cars, bus maps, train schedules, oscillating fans, Civil War battles, baseball statistics, black holes, dinosaurs, chess or Star Wars. While most programs try to discourage these obsessions, D.I.R./Floortime argues that they can offer openings into relationships. Does this work? Parents of T.C.S. students say that it does. Most speak in glowing terms about the school’s lifesaving impact on their families. Outside experts are more cautious, reluctant to give any one approach a gold medal when there are so many variables, including the profiles of the students admitted to T.C.S. in the first place. “Stanley Greenspan is an engaged and enthusiastic clinician,” Dr. Volkmar says. “People are attracted to Floortime because it is respectful of the child and the child’s wishes. He wants to follow the child’s lead. I would imagine that more able children do produce leads that are worth following — I’ve seen kids with Asperger’s do well in Montessori programs too — but what if the child isn’t doing much that you’d want to follow? I wonder if following the lead of a child who’s doing nothing but body rocking results in a roomful of people all body rocking with him.”
Dave Nelson says: “T.C.S. is a school, so I’d argue that our success should be measured by how well we educate our students. The boys have far better attendance rates than at their previous schools. They have far better emotional regulation — many could not attend school before due to their outbursts; while here, emotional regulation is core curriculum. Many were depressed to the point of suicidal ideation at their previous schools; that’s not happening here. Some were victims of bullying, some were aggressors at their previous schools; not here. All our parents report that their children are functioning better, are happier and are better communicators, thinkers and learners.”
Judy Martin says: “My son Ty’s progress has been monumental. He doesn’t cry in dark basements anymore. He isn’t entirely focused on himself; he is learning real empathy. He never liked school, and now he loves it. Every day this past summer he asked me when he could be with Dave Nelson. This is a child who never cared about teachers or friends. Now he tells me he loves them. I chatted with Stephen the other day by the vending machine as his money got stuck. He was problem-solving rather than blowing up. We rode the elevator together, chatting about the problem, while he decided to go find a teacher to help him.”
One morning at school, the fire alarm went off. My first thought — like everyone’s — was, Oh, my God —Ty! We descended the stairs to the parking lot. Ty was within a circle of T.C.S. teachers. “It was Elana!” he yelled to everyone about one of the teachers, who had been trying to prepare a snack for her class. “Elana burnt the popcorn in the microwave!” Poor Elana Himmelfarb, covering her face, not knowing whether to laugh or cry, said again and again, “I am just so, so, so, so sorry, Ty.”
He was trying to forgive her, but he kept asking, “Elana, why did you make the fire alarm go off?” His face was red, his curls were plastered back with perspiration and he was rocking a bit, long after the alarm had been silenced. Back upstairs, when the smoke cleared, Ty huddled in a beanbag chair with Rebecca Richter, one of the teachers, beside him.
“I hate that noise,” Ty said. “That’s a bad noise. That has a witch’s voice.”
“You really didn’t like that noise,” she agreed.
“This can NEVER HAPPEN AGAIN,” he sobbed, demanding that Rebecca promise him. “This will never happen again, will it? This can never happen!
“I need you to call my mom,” he said, weeping. “I’m having a very bad day. Will you call my mom? I need her to come get me.” I imagine a region of Ty’s brain blinking hard, a fistful of tiny red lights setting one another off: Panic! Panic!
“If we can keep Ty engaged with us, it means that he is harnessing and organizing his energies in order to interact,” Nelson told me later. “By keeping him connected, we won’t let him be kidnapped by random fragmented thoughts. If you aren’t engaged with other people, then you are completely at the mercy of your own regulatory system. Think about a situation where you were overcome with distress and how being able to tell someone helped you avoid becoming uncontrollably distraught.”
Gently Richter moved Ty from unreality (“the witch’s voice”) onto solid ground (“I’m having a bad day”). Given the tools to hang on, Ty survived until the end of the school day. And the breakthroughs continued. “When Ty came home that day, we talked through the events, as the school has trained me to lovingly do,” Judy Martin told me recently, “and Ty said, ‘Mom, I feel bad for Elana, because she didn’t mean to do it.’
“ ‘Do you think she felt embarrassed?’ I asked him, and he said yes. This moment was huge: Ty has always struggled with seeing the viewpoint of others, and here he was able to take a moment that frightened him and look at it from Elana’s viewpoint. We go to restaurants all the time now, and Ty couldn’t care less about the blenders. Lawn crews arrive next door, and they don’t faze him.”
When Sam Gross, now 17, arrived at T.C.S., he tripped along down the hall on the balls of his feet, rolling his head, thrumming on his chest with his fingers, humming to himself, lost in other worlds. The only points of entry he offered were during serious flights of fancy. “What this school needs,” he murmured in his low, resonant voice one day to a teacher, Lucie Canfield, “is a magic cabinet.”
“What would it do, Sam?” Lucie asked, delighted.
After a long pause he said, “Turn Sam into Samantha.” Sam wanted to travel back in time, he explained, to when he was a little girl; then he changed his mind and wanted to use it for teleporting.
Sam’s parents and his psychiatrist were initially less than enthusiastic about the magic cabinet: “Let’s not get started with this stuff here,” they said. But Lucie had already asked Sam, “What would a magic cabinet look like?”
Sam had replied: “Cow-colored.”
Lucie pushed poster board and colored pencils at Sam and said, “Show me.”
Dave Nelson agreed. This was the clearest opening they’d had from Sam Gross. Everything Nelson knew about Floortime told him to follow the boy’s lead. “Let’s see where this goes,” he told Sam’s parents.
Sam finished several quite beautiful drawings of a tall, rectangular closet. It would have a blue curtain and a bell stand on top, with a chain he would pull when he was finished transforming or teleporting. Nelson brought in a refrigerator box, and Lucie and Sam painted it in a nice Holstein pattern of black on white. “We made a point of always saying to Sam not that we were building a magic cabinet, but that we would pretend with him,” Lucie tells me. “I explained that magicians used tricks to make people think they disappeared.” T.C.S. would facilitate this exploration, with Sam, of the frontier of fantasy, with the expectation that he would encounter some reality along the way.
The special day arrived, and Sam stepped into the cabinet and drew the curtain. Dave waved a magic wand and read words Sam had written: “Abracadabra-a-whirl. Let Sam turn into a girl.”
There was silence inside the box. Then Sam called, “Do it again!” Dave chanted the words again. Silence. Then: “Let Lucie do it!” The teacher took the wand and gave it a try.
Sam peeked out, still male. “This is not the right cabinet for turning into a girl,” he said in consternation. “This is the cabinet that turns you into Paul McCartney.” He exited. At home that night, Sam looked up magicians in the Yellow Pages and booked one to come to school the next day. Dave Nelson canceled. It was time for reality to intervene.
Back at school, Sam spent the week focusing on how to teleport out of the cabinet to surprise folks in the cafeteria on the ground floor. Then one day he made an unusual request of Lucie Canfield: he needed help cutting a back door in the box that would allow him to slip away like a stage magician. It was a striking and brave acknowledgment of the material world.
Sam never staged his trick, as it was real magic that excited him. And he muttered, over the next few weeks, seditious thoughts along the lines of, What kind of school is this that doesn’t provide a real magician? The Magic Cabinet still stands in the art room, bell-towered and cow-colored. Many of the students enjoy stepping behind the blue curtain now and then for a moment of quiet remove from the world or to prepare to burst back upon the room in an assumed role. “It’s expanded from a product of Sam’s fantastic imagination to something of real purpose,” Judy Martin told me. “Kids peek out their heads as characters from books they’ve been reading, changing their voices and facial expressions.” The Magic Cabinet has come to stand for what the Community School offers these students: the possibility of transformation.
Melissa Fay Greene is the author of “There Is No Me Without You: One Woman’s Odyssey to Rescue Her Country’s Children.”
A version of this article appears in print on October 19, 2008, on page MM32 of the New York edition.

EMPATHY IN THE CLASSROOM

2008-10-02T13:19:00.000-04:00

EMPATHY IN THE CLASSROOM

By Dan Coulter

Let me tell you about the worst "teacher" I ever had.

He was a salesman standing in for a trainer who'd gotten ill. He'd come to our company's location to teach a roomful of us to use a complicated, computer controlled, multi-projector slide show system. This salesman made a classic teaching mistake. He assumed that because something he worked with every day was easy for him to understand, it should be easy for others to pick up. He rattled off information about the system in machine-gun fashion. When he repeatedly asked us if we understood something and various class members said, "No," he impatiently snapped his fingers at us and barked, "Keep up, keep up!"

Some students got disgusted and left the class at the break. Others stuck it out, but learned little.

The salesman's failure was based on his inability to put himself in someone else's place, understand things from that person's point of view, and communicate information in a way, and at a pace, the person can absorb it.

Successful teachers either know these steps instinctively or learn them from experience.

Now it's time to throw you a curve. This article is not about teachers.
It's about classmates of students who have Asperger Syndrome, High Functioning Autism or similar Autism Spectrum Disorders (ASDs).

Classmates can't be expected to have the instincts or experience of teachers. Many classmates are impatient with or dismissive of students who exhibit different or difficult behaviors due to ASDs, without ever knowing the reasons for those behaviors. It doesn't seem fair to simply get angry with these classmates, if they've never been given an explanation or been instructed how to interact with students who think and act differently.

There are no guarantees that educating students about ASDs is going to make all classmates more empathetic. But time after time, we've seen classmates who get that information become more understanding, accommodating and supportive. Especially if they're given the opportunity to mentally put themselves in the place of a student with an ASD and see things from his or her point of view. This helps them understand the reasons for impulsive behaviors, or seemingly tactless remarks, or sensitivities to light or sound or touch. Also, an important part of any such presentation is helping classmates become aware of students' strengths as well as their challenges.

And you don't have to single out a child on the spectrum or disclose a specific disability to hold a class lesson or school assembly about understanding students who think and act differently. While we've generally found that disclosing specific ASDs to classmates is helpful, that's a decision to be made by an individual student and his or her family.

If you're a teacher who has a student with an ASD in your class, consulting with parents and school staff and holding an education session about autism spectrum conditions can help integrate that student into your class and teach classmates valuable life lessons about tolerance, empathy and communication at the same time.

You don't want your students growing up to be the salesman who doesn't bother to read his audience and fails miserably to communicate.

Imagine your students looking back on your class gratefully as they succeed in business and life using the approach to understanding and reaching people
that you've fostered.

As they enter an increasingly complex, multi-cultural, global workplace, yours could be a class they'll never forget. I hope someday you get letters, telling you just that.

ABOUT THE AUTHOR: Dan Coulter is the producer of the Intricate Minds series of DVDs that help classmates understand Asperger Syndrome and other Autism Spectrum Disorders. You can find more information on his website at:
www.coultervideo.com.

Copyright 2008 Dan Coulter All Rights Reserved.

ADAAA Becomes Law, Strengthens 504 & ADA

2008-10-02T13:17:00.000-04:00

Today, the ADA Amendments Act (ADAAA), S.3406, was signed into law. The ADAAA overturns a decade of jurisprudence that has barred the door to ADA eligibility for many people with disabilities, including epilepsy, diabetes, intellectual and developmental disabilities, muscular dystrophy, and cancer, among many others. The reforms in the law will apply to both the ADA and Section 504 of the Rehabilitation Act. The reforms will restore the intent of the bipartisan Congress that passed the ADA in 1990. At the same time, the bill is a compromise, as much legislation is. As you know, COPAA has worked in support of this important bill. The ADAAA will take effect in January 2009. COPAA will be providing more information about the ADAAA and its impact on Section 504 in the near future. We thank Senators Harkin and Hatch, and HELP Chair Senator Kennedy and Ranking Member Senator Enzi for their leadership. We also thank the many members of Congress who supported the bill, and the broad coalition of disability and employer groups who worked so hard for its passage.

Below are more details on the ADAAA for those who are interested.

It is important to understand that the ADA and Section 504 define disability in a similar way, and therefore, ADA case law is applicable to 504 cases. Because the harmful ADA cases were also applicable to 504, the reforms apply to both laws. These reforms include the following highlights.

First, the ADAAA overturns in large part the Supreme Court's decision in Sutton v. United Airlines, which held that people with disabilities were not eligible under the ADA if their conditions could be mitigated by medication, assistive technology and equipment, or learned behavioral adaptations. The law also overturns Sutton's holding that a disability must limit more than one major life activity. Moreover, the bill will clarify that major life activities include working, communicating, concentrating, thinking, reading, and other activities of central importance. Although Sutton arose in the ADA context, its holding was equally applicable to 504 cases, and thus, the override is made applicable to 504..

When Congress passed the ADA in 1990, it intended to protect people whose disabilities 'substantially' limit them from performing major life activities. But the Supreme Court in Toyota v. Williams interpreted this term very narrowly and turned into a barrier to ADA eligibility, requiring that the person be severely restricted in his/her ability to perform major life activities. The Equal Employment Opportunity Commission similarly defined the term as 'significantly restricted.' Again, although Toyota was an ADA case, its holding was also applicable to 504. The ADAAA overrides Toyota for both the ADA and 504. It states in its findings that the Supreme Court in Toyota, and the EEOC in its regulations, set the standard too high by defining 'substantially limited' to require that the restriction be 'significant,' or 'severe.' The Senate bill will thus restore the standard Congress intendedhat the impairment simply be a substantial limitation. This finding is particularly important and we will be giving more guidance about it in the future. The ADAAA further states that the ADA must be interpreted to give full force and effect to these findings.

The ADAAA Statement of Senate Managers explains what 'substantially limited' means, emphasizing the same language that Congress used in 1990:
A person is considered an individual with a disability for purposes of the first prong of the definition when [one or more of] the individual's important life activities are restricted as to the conditions, manner, or duration under which they can be performed in comparison to most people. A person who can walk for 10 miles continuously is not substantially limited in walking merely because on the eleventh mile, he or she begins to experience pain because most people would not be able to walk eleven miles without experiencing some discomfort.

In addition to these reforms, the ADAAA removes from ADA's 'regarded as' prong of the disability definition the requirement that an individual demonstrate that he or she has, or is perceived to have, an impairment that substantially limits a major life activity. There are other reforms in the bill, as well.

Like the House legislative history, the Senate legislative history makes clear merely because someone with a specific learning disability can perform well academically does not mean that he/she may not also be substantially limited in the major life activities of learning, reading, writing, thinking, and speaking. Of course, the person would still need to establish that he/she was substantially limited in this manner and that he/she needed reasonable accommodations. The legislative history also makes clear that the 11th Circuit in Littleton v. Wal-Mart Stores, Inc. was incorrect to decide that a person with mental retardation was not disabled because he could drive a car and communicate with words.

Importantly for children with disabilities, the ADAAA applies equally to 504. Unlike the situation with employment, most school districts appropriately applied the law to 504 eligibility questions, and accommodated a range of students with disabilities. Thus, the ADAAA will not make any substantial changes in what most districts already do. But the law provides an important remedy for those children who have inappropriately been denied 504 eligibility. COPAA had received reports of some school districts denying 504 eligiblity to children with diabetes, life-threatening food allergies, learning disabilities, ADHD, Aspergers Syndrome, and other disabilities. For example, one school district argued that because a 6yo with a life-threatening nut allergy could care for himself about as well as other 6yos, and because he could breathe just fine when not suffering from anaphylaxis, he wasn't substantially limited and didn't have a disability under 504. Other 504 situations involved children with disabilities who are unable to obtain 504 plans with appropriate behavioral supports and access to appropriately challenging school work.

In the ADAAA, Congress made clear that no child should have the door to 504 shut because of old, outdated ADA case law that a bipartisan consensus agreed should be changed. The ADA aspects of the ADAAA are also increasingly relevant as youth with disabilities transition from school into the world of employment. The ADAAA is a bipartisan law that represents a significant achievement in protecting the rights of children and adults with disabilities. Again, it will be effective in January 2009. Thus, if in January 2009, a child would be entitled to reasonable accommodations under 504, even though he previously was not because of a mitigating measure or he was not considered 'substantially limited,' the law will protect him. Further information about the law will be provided later and we are sure many organizations will be providing information.

Council of Parent Attorneys and Advocates, Inc. (COPAA), 2008.

The Special-Needs Kindergarten Crunch

2008-09-25T14:28:00.000-04:00

New York Times
Tue Sep 23, 2008
The Special-Needs Kindergarten Crunch
By Christine Gralow

It’s the third week of pre-school. Kids are still settling in, and many are still crying when their parents drop them off in the morning. During these first weeks of school, pre-school teachers do a lot of waiting and wondering — waiting patiently for the separation tears to end and wondering what fascinating young characters will begin to emerge in this year’s class. My students’ parents, however, are already thinking about next year — they’re worried about getting their kids into kindergarten.
As a pre-school special needs teacher in New York, I’ve learned that the city’s culture of cut-throat competition extends to kindergarten admissions. And from that, an unexpected part of my job has evolved — providing psychological and emotional support to parents as they undertake the daunting task of finding an appropriate placement for their child. Securing a good spot in an oversubscribed New York City kindergarten, whether public or private, is difficult enough for most parents. But for the parents of children with special needs, it is especially challenging.
Last weekend, I had a long conversation with one mom who is already very worried about finding a placement for her child, who has an autism spectrum disorder. Like many Manhattan parents, she’s already calculating what connections she might be able to use and what strings she might be able to pull. She is considering the possibility of either mainstreaming him with some level of special-education support or enrolling him in one of the city’s private, special-needs schools (for which admissions competition is also very tough). It’s frustrating that she has to begin making the call at this point in the pre-K school year, when it’s far too early to tell which kindergarten option will be best for her son. But since many kindergartens have pre-Thanksgiving application deadlines, she has to begin the process now.
I wish I could tell her not to worry, that everything will be O.K. But I can’t. I’ve seen parents of children with autism go through particularly trying battles with school directors and the city’s Department of Education (D.O.E.) officials, often without a good result.
When I first began going through this process with parents, I was shocked. I’ll never forget what David — one of the first autistic pre-school students I taught — and his parents went through. At the time, David was a mild-mannered 5-year-old. I was his pre-K special-ed itinerant teacher (SEIT). David was an early reader, and he was good with numbers and music, but he had a speech delay, displayed overly repetitive play skills and had trouble focusing on one activity at a time. He exhibited few behavioral problems in the classroom, though, thanks to the intensive early intervention behavioral therapy he received. In fact, many of his mainstream peers had bigger behavioral issues. All of David’s teachers found him a pleasure to work with, and we all recommended that he be placed in a mainstream kindergarten class with special education support — or what is known in the special ed field as a team-teaching class. David’s speech skills had thrived in a class with mainstream pre-K peers, and it was vital to his language development that he continue his education in that environment.
After meeting with their local Committee on Special Education David’s parents were given the option of placing him in a public, team-teaching kindergarten class. The class would have one regular teacher and one special education teacher. Sounded good. Until we found out that the kindergarten class would have 31 students — far too many to allow the type of support David would need. It was the best his district had to offer him, but it wasn’t remotely good enough.
David’s dad then stepped up his efforts to get his son into a new, highly-touted Department of Education program designed specifically to mainstream high-functioning autistic students. This program seemed perfect for David. The application and evaluation process was lengthy, but David’s dad navigated it well. A school psychologist observed David in pre-K and determined that he was right for the program. David’s head pre-K teacher and I then spent significant time out of the classroom completing reports for his final application. David’s parents also spent significant time sending letters and patiently rescheduling canceled D.O.E. meetings. David made it to the final interview — a one-on-one evaluation with the program director. He did well. But after all this, the director informed David’s parents that the program did not accept students with speech delays.
Huh? This program had been touted for being an innovative program for autism spectrum students, like David, who should be mainstreamed. But despite all his reading, math and musical talents, and his significant speech progress in pre-K, David was not considered high-functioning enough for the program.
In the end, there was no appropriate public kindergarten option for David. Even the head of his Committee on Special Education acknowledged this. David’s parents made a last minute decision to move out of the city. Had they stayed, the D.O.E. would have been legally required to pay for a private school placement, since they failed to offer David a free, appropriate public education. However, getting the D.O.E. to fulfill such legal obligations requires having the financial means and the legal savvy to hire the right attorney. And so the kids who need services the most — the poor and disavantaged — get them the least. (I directly experienced this when working with a single mom and her autistic son in their East Harlem studio apartment. It’s a story that I’m still too upset about to tell.)
All this is not to say that there are no good public kindergartens in New York City, or no good public kindergarten programs for special needs children. They do exist, and some parents of special-needs kids — those enough lucky to live in one of the city’s coveted public education districts — do find good placements for their kids in well-run team-teaching classrooms, or, when appropriate, in well-run self-contained classrooms. But such placements are few and far between. Even in the coveted districts, I’ve rarely seen an appropriate special-needs kindergarten placement come without a parent struggle.
There are, of course, also several private schools in New York City for autistic children, such as the McCarton School. But at $90,000 per year, clearly, the kid from East Harlem isn’t going to make it. The city’s handful of public and non-profit charter programs for children with autism, such as the P.S. 255 schools in Queens and the New York Center for Autism Charter School, clearly need to be expanded and replicated, and those working to make such programs succeed should be applauded.
As for David, luckily, he ended up in a good kindergarten class in another town. He has just begun first grade, and he’s doing well. But needless to say, parents of children with autism should not have to move out of the city at the last minute to enroll their kids in a decent program. I really hope the mom I’m working with now has an easier time.

Free training to families of children with developmental disabilities

2008-09-23T19:33:00.000-04:00

The Long Island Developmental Disabilities Service Office has awarded our Foundation funds to provide training to families of children with developmental disabilities residing in Nassau and Suffolk County. Each interested family will be provided with six hours of individual training to address challenges they face within home and community settings.

The training will be either provided by or overseen by a Board Certified Behavior Analyst. The training can take place either in the home or at a place within the family’s community.

If you know of a family that could benefit from this service, please forward to them our contact information. We have several openings for this fall.

We have resources for a limited number of families. Families will be accepted into the program on a first come first serve basis.

Thank you,
Cathy Hoffman
Administrator
Down Syndrome Advocacy Foundation
516-983-7008
dsaf2@optonline.net

KULANU CATCHES A WAVE WITH SURFER'S HEALING

2008-09-15T17:40:00.002-04:00

On Wednesday, September 10th, children with
special needs from Kulanu’s recreational program
traveled to Long Beach for a unique and exhilarating
experience with Surfer’s Healing.
Surfer’s Healing enriches the lives of children with
Autism Spectrum Disorder (ASD)and their families by
exposing them to the unique experience of surfing.
Surfer’s Healing turns the ocean surf into a
positive and therapeutic activity for these children.
In our work with children with special needs, Kulanu
joins with many new and innovative programs to provide
activities that are inclusive, social, and fun for children
and their families.
For more information about this and other Kulanu
programs, contact Melissa Sornik at 516 569-6664.

Bypassing the Roadblocks of Autism

2008-09-15T17:24:00.000-04:00

By JANE MARGOLIES
Published: September 14, 2008

WHEN Victoria Berrey took a cruise with her mother and sister three years ago, she returned to her home in Santa Clarita, Calif., with one regret: She’d never be able to do a trip like it with her own children, both of whom have autism. “I worried about the confined quarters and the need for the boys to sit still in the dining room,” said Mrs. Berrey, whose older son, Miles, now 12, is on a restricted diet, and whose younger boy, Mathew, 8, has difficulty with any disruptions in routine. “Where would I take Mathew if something happened and he started yelling? What if one of them fell overboard?”
But last March Mrs. Berrey and her sons did enjoy a cruise, a three-day sail on a Royal Caribbean liner with special arrangements for people who have autism. At boarding, the 11 families who had booked the Autism on the Seas package through Alumni Cruises didn’t have to wait in line, and they were able to do the muster call in a private conference room rather than crowd on deck with the thousands of other passengers.
The group sat together at meals, so when one of the kids got antsy or let out a holler, there were no stares or glares or why-can’t-you-control-your-child lectures. Mrs. Berrey was even able to drop off her boys at the kids’ club where the staff had been specially prepped. “I got to experience what other parents experience all the time,” she said.
For most people, family vacations amount to almost a right. But for those grappling with autism — a brain disorder that affects one in 150 children and is four times more likely to afflict boys than girls, according to the Centers for Disease Control and Prevention — travel is a trickier proposition.
The 1.5 million Americans diagnosed with autism, also known as autism spectrum disorder or pervasive developmental disorder, have impaired abilities to communicate and interact socially, with cases ranging from those who cannot speak and live largely cut off from the world around them to highly functioning individuals who can express themselves extremely well, though they might have trouble with back-and-forth conversation; many have narrowly focused interests (an obsession with fans or train timetables, for example), or display unusual behaviors like the repetition of just-heard words, or the avoidance of eye contact or of being touched.
Yet for every parent who decides they’re better off staying at home with a child who might have a meltdown if someone accidentally brushes against him at a hotel breakfast buffet, there are others who are determined to hit the road, particularly if there are nonautistic siblings in the equation. And with Americans who have disabilities spending $13.6 billion annually on travel in the United States (not including the caregivers and family members who often accompany such individuals), according to a 2005 Harris Interactive poll for the Open Doors Organization, a small but growing number of tour operators, travel agents and resorts are offering specially geared getaways.
The Autism on the Seas trips from Alumni Cruises, a booking agency in Shelton, Conn., have tripled the last two years, far outpacing the company’s beading- and home school-themed voyages and now accounting for almost half its revenue. Adam’s Camp, a Colorado organization that provides camp-style sessions at Snow Mountain Ranch, in Granby, for children with disabilities and their families, added a fifth week this year and is considering a sixth because of the increased demand from the families of children with autism. It has also begun a program on Nantucket and hopes to add additional sites.
At Smugglers’ Notch Resort in Vermont, three-quarters of the participants in a program for people with special needs are autistic, and that number increases every year, according to Kris Connolly, manager of adaptive programs at the resort, who will provide one-on-one care if required, or steer a child with autism to a group of kids who are the same developmental, as opposed to chronological, age. “We might spend an extra 20 minutes at the pool if the water is calming to a child, or he enjoys the feeling of buoyancy,” she said. “If we see real enjoyment at the swing set, that’s where we’ll take extra time.”
And while hotels and resorts have focused on accommodating guests with physical handicaps since the enactment of the Americans With Disabilities Act in 1990, according to Scott Berman, a hospitality and leisure analyst at PricewaterhouseCoopers, the 300-hotel chain Microtel Inns & Suites, which has won awards from disability-rights organizations for going above and beyond the requirements of the law to welcome guests with physical differences, includes discussions of hidden disabilities like autism in staff training.
“There’s been a sea change in terms of awareness,” said Marguerite Colston, spokeswomen for the Autism Society of America, who credits celebrities like the former Miami Dolphins quarterback Dan Marino and the actress Jenny McCarthy, who have spoken out on behalf of their own children and those like them, with helping spread the word. “It used to be that when people heard the word autism, they thought ‘Rain Man,’ ” Ms. Colston said, referring to the 1988 movie in which Dustin Hoffman plays an institutionalized autistic savant. “Now they realize there’s a broader range.” And with more and more children being diagnosed with autism — now the fastest-growing developmental disability in America, according to the society — “it’s much more likely that any given person will know someone with autism,” she said.
All of which is not to suggest that vacations with an autistic child are easy. The very idea of travel — the chance to see new places, try new foods, experience new cultures — is directly at odds with the needs of many people with autism, who require well-established, strictly observed routines to feel secure.
And while the airport experience since 9/11 has become much more trying to all of us, it can be extremely challenging for someone who has inherent difficulty waiting or standing in line, not to mention answering questions posed by a security guard. “If a guard asks, ‘Did you pack your own bag?’ someone with autism might repeat the question, or just repeat the word, ‘bag,’ ” said Dr. Melissa Nishawala, director of the Autism Spectrum Disorders Service at the New York University Child Study Center. “The child might read ‘dangerous explosives’ on a sign somewhere in the airport and start repeating those words. Loudly. In line.”
Then there is the plane ride itself. “By the time they get on the plane, the parents and the child are stressed out,” said Dr. Ron Balamuth, a New York psychologist who specializes in working with children who have developmental disorders. “For a kid who needs constant stimulation, that’s like putting him in a flotation tank.”
In June, a mother and her young autistic son were kicked off an American Eagle flight departing from Raleigh-Durham in part because of the child’s behavior. An item about the incident on the Chicago Tribune’s blog drew 221 posts by the end of the day — almost twice as many in support of the airline as sympathetic to the family.
Parents who travel with autistic offspring employ many strategies. They pick destinations that will appeal: a resort with a pool if the child loves water, or Disney World if he has a fixation with “The Lion King.” They role play with their child before departure to prepare for the experience. “I had a family with a child who had tremendous difficulty waiting in lines, waiting for anything,” said Dr. Balamuth. “They turned their house into a flight gate. The family lined up with suitcases, they took off their shoes, they play acted the whole thing.”
Itineraries, even daily schedules, reviewed in advance help autistic travelers know what is going to take place, and when. “If a child can read, it’s words on a page; if not, it’s pictures,” said Lisa Goring, director of family services for Autism Speaks, an advocacy group. With her own son, Andrew, 12, Mrs. Goring ticks off activities as they occur. “He’s anxious if he doesn’t know when an activity will end,” she said.
Parents carry a letter from their child’s doctor explaining the condition (to whip out at the airport or to present at guest relations at Disney World, where it can secure a pass to circumvent long lines). They take along familiar toys and a DVD player so favorite movies can be watched en route. And if the child is on a gluten-free, casein-free diet (thought to relieve allergies and other medical ailments that might be distracting to someone with autism), they cart along a lot of food, too.
If parents find a destination that works for their child, they often return. Anthony and Felicia Cerabone of Staten Island bought a timeshare at Smugglers’ Notch, where their son, Anthony, 15, has participated in the resort’s SNAP program for people with special needs for 10 years. “He knows that every July we go,” said Mrs. Cerabone. “He knows that every day he goes to the camp. By now it’s routine.”
Gina Delgiudice-Asch, a rheumatologist, and her husband, Will, a high-school math teacher, from Princeton, N.J., have managed to range farther afield with their two children, even though their son, Andrew, 16, has autism, Dr. Delgiudice-Asch said from Avalon, N.J., where the family rented a house at the shore for a week at the end of June.
Sometimes she or her husband will take a one-on-one trip with their 13-year-old daughter, Samantha, a nationally ranked junior tennis player — on a recent jaunt to Los Angeles, mother and daughter visited the set for “Ocean’s Thirteen” and ducked in and out of shops on Rodeo Drive. “With Andrew, everything has to be more planned,” said Mrs. Delgiudice-Asch.
But often the family travels as a pack, taking along a familiar babysitter or a teacher from Andrew’s school to help. They have vacationed everywhere from Winter Park, Colo., where instructors at the National Sports Center for the Disabled had Andrew on skis four hours a day, to Costa Rica. “It was hard when we got to the resort, and they didn’t have a grilled cheese for him right away,” Dr. Delgiudice-Asch acknowledged. “But he got the hang of it.”
They go to family-oriented resorts rather than exclusive places where “we might be impinging on other people’s vacation,” she said. And they stick to coach after a bad experience flying first class from California to Cabo San Lucas, Mexico, when Andrew, who was 6 at the time, started crying and a passenger complained to the flight attendant.
Though they’d like to see Europe, they haven’t gone as a family. That’s not because Andrew, by now a seasoned traveler, couldn’t handle the flight, but because he would have too much difficulty with the time difference, his mother said. “But we’re still doing fun things on vacation as a family,” she said. “We’re not letting autism back us into a corner.”