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)
Tuesday, October 20, 2009
Thursday, October 15, 2009
Self-Advocacy for Teens with Special Needs, Free Seminar
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
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
Tuesday, October 13, 2009
Op-Ed: Fight to overcome autism gets major boost, higher priority
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.
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.
Thursday, October 1, 2009
Kulanu Workshop - Understanding the Pediatrician’s Role with Children with Special Needs
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
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
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.
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.
Wednesday, September 30, 2009
Let All The Children Play - Ground Breaking
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
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
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.
You may access the survey at
https://app.expressemailmarketing.com/takesurvey.aspx?id=16666
The due date for surveys is October 9, 2009.
Monday, September 21, 2009
An open letter to the Jewish community from a 16-year-old who has Aspergers.
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
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
Wednesday, September 16, 2009
KULANU CATCHES A WAVE WITH SURFER'S HEALING
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.
Sunday, September 13, 2009
The Long Island Family Support Consumer Council presents Seventeenth Annual Legislative Breakfast
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
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
Thursday, September 10, 2009
Adult Transition Program...accepting applicants!
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.
Tuesday, September 8, 2009
Growing Up With Undiagnosed Asperger’s
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
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
Tuesday, August 25, 2009
Kulanu's camp within a camp and Camp Outlook 2009
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/
Monday, August 24, 2009
Autistic Teens Master Social Cues, Find Friends
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.
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.
Wednesday, July 29, 2009
New York State Access Pass
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.
Tuesday, July 28, 2009
Restrictive Diets May Not Be Appropriate for Children With Autism
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.
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.
Monday, July 20, 2009
Celexa May Not Help Kids With Autism
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.
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.
Monday, July 13, 2009
News from Disability Scoop
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.
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.
Monday, June 29, 2009
They Taught Him to Fish, Then Let Go
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
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
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.
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