The ADA does not exempt historic buildings or properties from complying with federal law.
By ERIN JAMES
The Evening Sun, (Hanover, PA)
Posted: 11/10/2009 01:00:00 AM EST
After a two-year hiatus, Gettysburg business owners are once again making a concerted effort to discuss the Americans with Disabilities Act in the context of numerous complaints that have been filed in the historic town in the past several years.
The complaints filed by Hampstead, Md., woman Marilynn Phillips will be the subject of a meeting on Thursday at the Adams County Library in Gettysburg.
The meeting is being organized by Eligius Wachter, a Gettysburg newcomer who calls himself a "concerned citizen" and "community organizer."
"I'm just trying to find the facts and make some summary of them for the local people," Wachter said.
Wachter said he decided to take action after hearing the accounts of numerous business owners about their struggles to comply with the ADA, especially after being named in civil-rights complaints or federal lawsuits filed by Phillips.
"I was just talking to people," he said. "Every time I talk to somebody I feel like I get a completely different chapter of the book."
For example, Wachter said he noticed that sidewalk space on Chambersburg Street had been reduced to a width of only four feet after a business there installed a concrete ramp to meet ADA accessibility regulations - "making it impossible for groups of people to pass by comfortably."
Wachter said he is also concerned about the potential implications of ADA compliance on historic buildings and other landmarks.
"I feel that the historic integrity and that the business interests of landlords and owners have not been properly defended or understood as it may be defended," he said. "That shows that there's not a unified understanding of what the heck is going on."
Wachter said he is in Gettysburg "expanding on some business endeavors" and has been in town since early October. Though he is not a lawyer, Wachter said he did attend law school. He said he has received guidance and encouragement from Gettysburg Signs owner Gene Golden.
"He welcomed me to make an effort to organize," Wachter said. "Previous major efforts at organization had not been successful. The community had tried."
Those efforts date back to the summer of 2007, when community members first began searching for solutions to their accessibility problems. At the time, Phillips - who uses a wheelchair because of post-polio syndrome and severe osteoporosis - had just filed numerous complaints with the Pennsylvania Human Relations Commission alleging some Gettysburg businesses had discriminated against her by not making their buildings wheelchair-accessible. She has filed dozens more PHRC complaints - and federal lawsuits, more recently - since.
The Americans with Disabilities Act establishes standards for places of employment, state and local government and places of "public accommodation" - of which restaurants, hotels, theaters, doctors' offices, pharmacies, retail stores, museums, libraries, parks, private schools and day care centers are typical examples.
It was signed into law by President George H.W. Bush on July 26, 1990. Provisions for public accommodations went into effect on Jan. 26, 1992.
But, because compliance can mean the destruction of historical landmarks, the ADA is an especially difficult law for an historic town, like Gettysburg, to comply with, Golden said.
"I understand that in a perfect world Gettysburg would have been built to 1991 ADA standards," he said. "But to force someone to remove a granite step - or take away a wrought-iron rail and modify the front door, widen it, or whatever it takes - to the point that you destroy the architectural integrity of the building, then I don't understand how that can be acceptable."
The ADA is the most recent federal law regulating accessibility, but it is not the only law on the books. In fact, there are many laws, both state and federal, that do the job of establishing accessibility standards.
In Pennsylvania, a myriad of government agencies are charged with some responsibility for enforcing those standards, and the jurisdictions of those bodies determine which laws or parts of the laws they enforce. As a result, property owners often hear that they are in compliance with the law from one agency, while another would disagree.
Golden said he believes Gettysburg needs to establish a committee or individual as the resource for answers related to the ADA, and he hopes that discussion will take place Thursday.
"What I really hope will happen is that everybody will be able to talk to each other and quit hiding their heads in the sand," he said.
The ADA does not, however, exempt historic buildings or properties from complying with federal law.
Phillips said it is time for Gettysburg to accept that fact and to begin looking for solutions rather than ways to dodge compliance.
Phillips also said she supports "any meeting that talks about making things accessible," but she also said she is skeptical about the intent of Thursday's meeting.
She said she believes discussion will focus on ways to avoid litigation rather than finding ways of achieving compliance.
"I think it's also very, very important for people to understand that accessibility is a civil right," she said. "There are very creative, aesthetically lovely ways of doing this if they would just think ahead."
http://www.eveningsun.com/ci_13748124
ejames@eveningsun.com
Copyright © 2009MediaNews Group
All About Developmental Disabilities (AADD) is Atlanta's preeminent resource on developmental disabilities, providing support services to families for more than 55 years. We are often the one place where people with developmental disabilities can go to achieve personal empowerment, family stability and community participation. AADD provides family support; public policy and advocacy; and community engagement.
Wednesday, November 11, 2009
Autism Study Could Find Answers in Magic
Autistic People Lack Joint Attention Skills and Can't Be Fooled by Magicians' Tricks
By SUSAN DONALDSON JAMES
ABC News
Nov. 10, 2009
The magician placed a coin atop an airtight rubber seal on a cup and -- abracadabra -- the shiny piece fell to the bottom of the cup.
But he didn't fool 8-year-old Stephen Shore, who was the only one among his fellow Boy Scouts who saw through the magic trick.
"People didn't see the slit in the piece of rubber," said Shore, now 48 and an assistant professor of special education teacher at New York's Adelphi University. "I went up and just kind of pushed my finger into the slit."
Illusions are the stock and trade of magicians but researchers at the Barrow Neurological Institute in Phoenix, Ariz., want to know why people like Shore, who fall along the autism spectrum, are not so easily fooled.
Shore has lived his entire life with autism, a neurological disorder often marked by joint-attention deficits, or difficulty reading social signals; the same kind that a magician deliberately uses to throw attention away from the deception.
"Someone on the autism spectrum is looking exactly where the magician doesn't want him to look," Shore said.
Scientists Susana Martinez-Conde and Stephen Macknik, co-authors of the upcoming book
"Neuro Magic," are seeking funding to begin research that they hope will use magic as a tool for the diagnosis and treatment of autism -- despite some parents' fear that such research is too limited in scope.
"What magicians do is get people to attention with an incredible degree of depth and labor," said Macknik, director of Barrow's Laboratory of Behavioral Neurophysiology.
"Misdirection is a bit of a misnomer -- that the magician is trying to get you not to pay attention," he said. "But that's not the case. They want to control where you are especially paying attention."
An estimated 1 in 150 children -- or about 1 percent of all children -- are diagnosed with autism spectrum disorders, a group of developmental disabilities that can cause significant social, communication and behavioral challenges, according to the Centers for Disease Control and Prevention in Atlanta.
The CDC considers autism an urgent public concern and says the sheer numbers warrant a concerted national response.
But, so far, there are no medical tests so doctors must rely on a child's behavior to make a diagnosis, usually by age 2. Early detection is key, experts say, so children can get intervention therapies.
Martinez-Conde, the study's lead investigator, has devoted her research to eye movements in the field of visual neuroscience.
Humans share information and grasp the thoughts and intentions of others through eye contact and gestures. Long before infants speak, they communicate and learn by following the gaze of others and use their own eye contact and gestures to direct those around them.
To read more go to http://abcnews.go.com/Health/Autism/autism-diagnoses-treatments-found-study-magic/Story?id=8988702&page=2
To read page 3 go to http://abcnews.go.com/Health/Autism/autism-diagnoses-treatments-found-study-magic/Story?id=8988702&page=3
To read page 4 go to http://abcnews.go.com/Health/Autism/autism-diagnoses-treatments-found-study-magic/Story?id=8988702&page=4
External links are provided for reference purposes. ABC News is not responsible for the content of external Internet sites. Copyright © 2009 ABC News Internet Ventures.
By SUSAN DONALDSON JAMES
ABC News
Nov. 10, 2009
The magician placed a coin atop an airtight rubber seal on a cup and -- abracadabra -- the shiny piece fell to the bottom of the cup.
But he didn't fool 8-year-old Stephen Shore, who was the only one among his fellow Boy Scouts who saw through the magic trick.
"People didn't see the slit in the piece of rubber," said Shore, now 48 and an assistant professor of special education teacher at New York's Adelphi University. "I went up and just kind of pushed my finger into the slit."
Illusions are the stock and trade of magicians but researchers at the Barrow Neurological Institute in Phoenix, Ariz., want to know why people like Shore, who fall along the autism spectrum, are not so easily fooled.
Shore has lived his entire life with autism, a neurological disorder often marked by joint-attention deficits, or difficulty reading social signals; the same kind that a magician deliberately uses to throw attention away from the deception.
"Someone on the autism spectrum is looking exactly where the magician doesn't want him to look," Shore said.
Scientists Susana Martinez-Conde and Stephen Macknik, co-authors of the upcoming book
"Neuro Magic," are seeking funding to begin research that they hope will use magic as a tool for the diagnosis and treatment of autism -- despite some parents' fear that such research is too limited in scope.
"What magicians do is get people to attention with an incredible degree of depth and labor," said Macknik, director of Barrow's Laboratory of Behavioral Neurophysiology.
"Misdirection is a bit of a misnomer -- that the magician is trying to get you not to pay attention," he said. "But that's not the case. They want to control where you are especially paying attention."
An estimated 1 in 150 children -- or about 1 percent of all children -- are diagnosed with autism spectrum disorders, a group of developmental disabilities that can cause significant social, communication and behavioral challenges, according to the Centers for Disease Control and Prevention in Atlanta.
The CDC considers autism an urgent public concern and says the sheer numbers warrant a concerted national response.
But, so far, there are no medical tests so doctors must rely on a child's behavior to make a diagnosis, usually by age 2. Early detection is key, experts say, so children can get intervention therapies.
Martinez-Conde, the study's lead investigator, has devoted her research to eye movements in the field of visual neuroscience.
Humans share information and grasp the thoughts and intentions of others through eye contact and gestures. Long before infants speak, they communicate and learn by following the gaze of others and use their own eye contact and gestures to direct those around them.
To read more go to http://abcnews.go.com/Health/Autism/autism-diagnoses-treatments-found-study-magic/Story?id=8988702&page=2
To read page 3 go to http://abcnews.go.com/Health/Autism/autism-diagnoses-treatments-found-study-magic/Story?id=8988702&page=3
To read page 4 go to http://abcnews.go.com/Health/Autism/autism-diagnoses-treatments-found-study-magic/Story?id=8988702&page=4
External links are provided for reference purposes. ABC News is not responsible for the content of external Internet sites. Copyright © 2009 ABC News Internet Ventures.
Homework and Beyond: Teaching Organizational Skills to Individuals with ASD
Students need to plan time into their schedule to locate different resources to complete a task.
By Michelle Garcia Winner
Thursday, October 22, 2009
Students need to plan time into their schedule to locate different resources to complete a task.
Our daily lives are made up of an endless stream of thoughts, decisions, actions and reactions to the people and environment in which we live.
The internal and external actions fit together, sometimes seamlessly sometimes not, largely dependent upon a set of invisible yet highly important skills we call Executive Functioning (EF). These skills, which involve planning, organizing, sequencing, prioritizing, shifting attention, and time management can be well-developed in some people (think traffic controllers, wedding planners, business CEOs, etc.) and less developed in others. They are vital in all parts of life, from making coffee to running a profitable business. The skills develop naturally, without specific, formal training, and we all have them to some degree – or at least, we all assume we all have them.
Things are never quite as simple as they seem, and these EF skills are no exception. They require a multi-tiered hierarchy of decisions and actions, all coming together within the framework of time, knowledge and resources.
Imagine trying to navigate life when EF skills are impaired or nonexistent, as they are with individuals on the autism spectrum. For most of us, our imagination won’t stretch that far. Therefore, we assume all these kids – especially those who are “bright” - have EF skills and we act and react to our spectrum children or students as if they did.
Nowhere does this EF skill deficit cause more turmoil than in the area of homework, producing monstrous levels of anxiety and dread in students, parents and teachers alike. The myriad of details that need to be accomplished in a student’s class, school day or week can overwhelm even the healthiest student; it can shut down our ASD kids.
I am regularly asked: if tasks are so overwhelming to their EF systems, should we just avoid having students deal with them? The answer is an unequivocal emphatic “NO!” Organizational skills are life skills, not just school skills, and even though they are “mandatory prerequisites” for succeeding at school, like social skills they are rarely directly taught. Few states include explicit teaching of EF skills in their “standards of education.”
So where do we start? First, by understanding how complex organizational systems become by the time students reach middle school. We can only be good teachers if we appreciate the demands the skills we teach place on our students.
Second, by understanding organization as a skill set, which involves static and dynamic systems.
Static organizational systems and skills are structured: same thing, same time, same place, same way. Static organizational tasks are introduced in kindergarten, first and second grade. We break down tasks and ask students to explicitly complete very defined units of information, at a certain time and place. Write your name at the top of the page, read the instructions, complete the work, when done turn the paper over and sit quietly until time is up.
Dynamic organizational systems and skills involve constant adjustments to priorities, workloads, timeframes, tasks and places. They are less teacher-directed and more student-directed. By 4th grade, teachers are introducing dynamic assignments to students with moderate levels of support. Soon after that we expect students to be able to manage increasingly dynamic workloads with little extra support or direct teaching. By high school, almost all school and homework has dynamic components requiring students to use EF skills to allocate time, resources, places to work, etc.
Here’s the good news: most of us understand that to tackle a dynamic task we have to break it down into its static elements. The dynamic part of the task requires thinking; the static part of the task requires doing. A dynamic assignment such as writing an essay requires a significant portion of the task be spent thinking about the topic before the static tasks of actually writing the paper at a table, at a specified hour, etc. One of the great challenges for our spectrum students is learning to break down dynamic tasks into more concrete, static chunks of work.
Fostering organizational skills in students with ASD requires an evolutionary approach towards teaching students, one that is ideally started at an early age. Students hone organizational skills starting in preschool, when we first ask them to clean up their toys. Teachers can accurately identify organized versus disorganized students as early as kindergarten. By 4th grade teachers expect students to be proficient with EF skills.
However, the reality is that the majority of our ASD students of all ages desperately need help with homework, specifically, and EF skills in general. Help is available. The following 10 steps illuminate specific aspects of EF skills that increase students’ static and dynamic organizational coping mechanisms. While these steps are interrelated and synergistic, avoid trying to teach them all at the same time. Each may be difficult to grasp and master for the student with ASD; allow learning to take its own pace. Keep expectations realistic, talk things through regularly, and probe for misunderstandings or miscommunication. Learning EF skills is a dynamic system of its own, with its static components. Make sure your child or student experiences success and feels competent at each stage of the process.
10 Steps to Build Organization Skills
1. Clearly define what needs to be done
Too often, parents and schools view organization goals too simply: “the student must write the assignment in his planner.” Clearly this is not nearly enough detail for most tasks and may not even be the best starting goal for a particular student. Adults must be organized in their own thinking if they are to effectively teach students with EF deficits this skill. Go beyond giving out assignments; help the student understand how to also approach the task from an organizational standpoint.
2. Move it with motivation
Almost all students with weak organizational skills also struggle with motivation to accomplish homework tasks. Parents and teachers often don’t realize this lack of motivation can stem from feeling overwhelmed by the task demands. Students with the greatest motivational challenges are often our most intelligent students (e.g. those with high IQ scores). We often assume “smart” means “organized” and say things like “come on, I know you can do this, I know you are smart.” Yet, they may have the hardest time motivating themselves when overwhelmed because they have never had to work at learning. Learning just happened if they stayed attentive.
By adolescence, students need to appreciate that completing work - even work that seems somewhat ridiculous to them – has its rewards. It establishes them as hard working in the eyes of others, improves their grades and increases feelings of self-worth through meeting their grade level academic expectations. However, as obvious as this sounds, this level of cause-effect can still be too overwhelming to some spectrum students because it requires delayed gratification.
Many students need to start at a much more concrete level of motivation, with very small work steps combined with reward early in the task completion process. For example, if a student cannot easily work for an hour, have him work successfully on a single part of the task for just 10 minutes before he gets to pause and congratulate himself. Self-motivation increases when students feel confident in understanding and accomplishing the task before them. It doesn’t matter how “well” you teach students these EF skills; if they are unmotivated, they will not implement the ideas. Work directly on helping students tackle and overcome motivation challenges.
3. Prepare the environment
Most adults familiar with helping students “get organized” understand this point. Establish a dedicated workspace for homework that includes the essential tools: pen, pencil, paper, etc. Color coding tasks, making sure the student has an organized binder, access to a time-timer (www.timetimer.com) create structures that promote success during homework time.
4. Chunk and time it
Assignments that sound coherent and structured to teachers can still overwhelm a student with EF challenges. For example: “write a report focusing on the economy, culture, weather and climate of a specific country.” Clear enough, you think? Maybe to us, but not to them. Make sure the student understands how to “chunk” an assignment (break it down into smaller pieces) and how the individual parts create the larger whole. For example, not all students will know their report needs four sections, producing essentially “mini-essays” worked on separately and then joined together.
Furthermore, once they “chunk” the project students also need to predict how long each chunk will take to complete. The majority of our students with poor organizational skill have a resounding inability to predict how long projects will take across time. In fact, they tend to be weak in all aspects of interpreting and predicting time. Consider this: Is there anything you do without first predicting how long it will take? We “time map” everything, gauging how the task will or will not fit into what we’re doing now, an hour from now, later in the day or later in the week.
Homework functions in much the same way. Students are more willing to tackle homework when they can reliably predict how long they will have to work on the task. For example, a student will usually calmly do math if it should only take 5-10 minutes. However, for those spectrum students who can’t predict time, the nebulous nature of the activity incites anxiety such that they may cry 45 minutes over doing a 10-minute math assignment. When the student does not – or cannot - consider time prediction as part of his organizational skill set, he is likely to waste a lot of time rather than use time to his advantage.
5. Use visual structures
As the school years progress, homework shifts from mostly static tasks doled out by one teacher to mostly dynamic tasks assigned by many different individuals. We expect students to self-organize and know how to juggle the many pieces of learning that make up each class, grade and level of education. Yet, this valuable skill is never directly taught!
Visual long-term mapping charts, such as a Gantt Chart, (www.ganttchart.com) can help students plan and monitor multiple activities. These bar type graphs allow a student to visually track multiple projects across time, determine when they are due and how much time is available to work on each. For example, a history paper may be assigned in February and due in late March; a line would run from early February to late March to indicate the time allocated to the project. A math project assigned in early March is also due in late March; another line would represent this project. Visually the student can see that two big projects are due at about the same time, and both are worth significant grade points. This then helps the student understand why he should not wait until the last minute to start one or both assignments. Gantt charts are frequently used in business, but have yet to make it into student software for school/homework planning. However, they are easy to create and use at home or in the classroom. For students with ASD, they are invaluable tools for organization.
Visual structures can represent entire projects and then also be used for individual chunks, creating the visual organizational framework students with EF deficits need. Once assignments are understood as needing to be worked on across time, we can encourage students to chunks tasks to be worked on during specific weeks, then make related lists of things to do on specific days.
6. Prioritize and plan daily
Learning to prioritize is a valuable skill and helps the student get things done. Keep in mind that many of us make daily lists but don’t always complete all tasks on our list, and that priority is largely based on the value we place on the assignment. Within the school setting, “value” is often dictated by the teacher. Priority is a factor of the task’s value overall, its deadline and the time to complete it. However, just because a task is due does not mean a student needs to make a decision to complete it, especially if it is a low priority or low value task to the student or the teacher. For example, during her sophomore year in high school my daughter was looking at her math grades online. I looked over her shoulder and saw she had mostly A’s and B’s but noticed she had two F’s. I exclaimed, “Robyn, you have two F’s”, to which she replied, “Mom, they were each worth one point. They were hardly worth doing.” Robyn realized that in light of the many assignments she had to juggle for all her classes, projects with the least point value were not worth doing; she’d rather save her time and effort for the larger, more important projects.
With a prioritized plan in hand, many students will still struggle with actually working on the tasks. Even students with high intelligence may have difficulty getting themselves to work on projects not of their liking. Their baseline attention span may be no more than 7-10 minutes. (Test one of your student’s baseline attention span by observing how long he can attend to mundane projects without self-distracting. You may be surprised by how short it is!)
Help students succeed with their daily schedule by teaching them to take frequent small breaks at the end of their baseline attention span. For example, a graduate student in theology found he could only push himself through 10-minute work cycles before feeling overwhelmed or internally distracted. He used a visual time-timer and gave himself a short stretch break every 10 minutes. Once he completed a number of these short work cycles he gave himself a larger reward. The key to using self-reward is to make sure the small reward isn’t likely to be distracting or absorbing (computer games, TV, reading a book). Instead make these small breaks quick and refreshing, just to refocus attention: sensory based activities (stretching or movement), a small snack, a quick trip to the bathroom or pencil sharpener.
7. Hunt and gather
Simply put: students need to plan time into their schedule to locate different resources to complete a task. For example, research at the library might be a “chunk” they plan for on their homework list (don’t forget travel time!).
8. Consider perspective
Homework is more effectively completed when students start by considering the teacher’s perspective before diving into the assignment. An assignment done well is one that meets the teacher’s expectations and follows the teacher’s instructions. A high school student went to great lengths to develop a computer program for his computer programming class. His teacher came to me exasperated, explaining that while well done, the project was totally unrelated to the class assignment.
Parent perspectives enter into the homework plan also. Many parents expect children to finish homework before watching TV. Even though children may have accomplished a great deal of homework (in their mind “enough”), trouble can still erupt because it wasn’t “finished” in the parent’s mind.
Perspective taking can be quite overwhelming to many students with social learning and organizational problems. A strategy called “social behavior mapping” (Winner, 2007) can help students understand how expectations, actions and reactions affect not only how we are viewed by others, but how their responses ultimately impact the way we view ourselves.
9. Communicate and then communicate some more
Homework assignments often result in students needing help from others. Knowing when and how to ask for help can be challenging for students with social learning and organizational weaknesses. Avoid assuming students – especially “bright” students - should intuitively know how to ask for help, clarification or even how to collaborate with others on assignments. These skills are not nearly as simple as they seem and may need to be explicitly taught by the special education teacher or speech language pathologist at your school. Tip: as students age into middle school and beyond, most are turning to their peer group rather than their teacher for help. This fosters peer support networks desperately needed for success in college and later life.
10. Completion and reward
Having a clearly defined “end” to a task is important for the concrete thinking minds of students with ASD. Be sure the child knows what “finished” means, both at school and at home. For instance, a homework assignment is not truly “done” until it is turned in to the teacher at school. While homework turn-in boxes (static) are commonly found in elementary school, they all but vanish during middle and high school years when even the act of turning in homework becomes dynamic. Make sure your students know where to turn in homework. Also, parents should save big celebrations for completed projects until the assignments are actually turned in. Some students may need reminder systems set up to make sure work is turned in on time. Visual notes, PDA messages or watch timers can be used to help.
At home, “finished” homework yields its own rewards when students can engage in more personally pleasing activities, such as a computer game, watching TV, reading for pleasure, etc. Even our favorite activities have a finite time frame attached to them before it is time to go to bed. Many of these organizational strategies can be used to help a student learn to shut down a favorite activity and get his brain ready for bed.
“Planning takes time!” This is a message we need to constantly reinforce with our spectrum students. “Teaching organizational skills takes time, across months and even years!” This is a message we need to reinforce to parents and teachers. Whether students are using organizational skills for homework, doing chores, preparing for a weekend activity or something as simple as getting a snack, as children grow and develop, tasks become increasing complex and dynamic with each passing year. Teachers and parents need to work together, while children are still in elementary school, to identify and teach any or all of the 10 steps mentioned in this article that are problematic for the spectrum child. In doing so, we give children the tools not just to handle homework, but to be successful in all areas of life.
Michelle Garcia Winner is internationally recognized as an innovative clinician, enthusiastic workshop presenter and prolific author in the field of social thinking and social cognitive functioning. She received a 2008 Congressional Recognition Award for her work. Visit www.socialthinking.com for additional articles, books and information.
Autism Asperger’s Digest © 2009. All Rights Reserved. Autism Asperger’s Digest is a multiple-award winning magazine providing real life information for meeting the real life challenges of autism spectrum disorders. Subscribe at www.AutismDigest.com
http://www.foxnews.com/story/0,2933,569207,00.html
By Michelle Garcia Winner
Thursday, October 22, 2009
Students need to plan time into their schedule to locate different resources to complete a task.
Our daily lives are made up of an endless stream of thoughts, decisions, actions and reactions to the people and environment in which we live.
The internal and external actions fit together, sometimes seamlessly sometimes not, largely dependent upon a set of invisible yet highly important skills we call Executive Functioning (EF). These skills, which involve planning, organizing, sequencing, prioritizing, shifting attention, and time management can be well-developed in some people (think traffic controllers, wedding planners, business CEOs, etc.) and less developed in others. They are vital in all parts of life, from making coffee to running a profitable business. The skills develop naturally, without specific, formal training, and we all have them to some degree – or at least, we all assume we all have them.
Things are never quite as simple as they seem, and these EF skills are no exception. They require a multi-tiered hierarchy of decisions and actions, all coming together within the framework of time, knowledge and resources.
Imagine trying to navigate life when EF skills are impaired or nonexistent, as they are with individuals on the autism spectrum. For most of us, our imagination won’t stretch that far. Therefore, we assume all these kids – especially those who are “bright” - have EF skills and we act and react to our spectrum children or students as if they did.
Nowhere does this EF skill deficit cause more turmoil than in the area of homework, producing monstrous levels of anxiety and dread in students, parents and teachers alike. The myriad of details that need to be accomplished in a student’s class, school day or week can overwhelm even the healthiest student; it can shut down our ASD kids.
I am regularly asked: if tasks are so overwhelming to their EF systems, should we just avoid having students deal with them? The answer is an unequivocal emphatic “NO!” Organizational skills are life skills, not just school skills, and even though they are “mandatory prerequisites” for succeeding at school, like social skills they are rarely directly taught. Few states include explicit teaching of EF skills in their “standards of education.”
So where do we start? First, by understanding how complex organizational systems become by the time students reach middle school. We can only be good teachers if we appreciate the demands the skills we teach place on our students.
Second, by understanding organization as a skill set, which involves static and dynamic systems.
Static organizational systems and skills are structured: same thing, same time, same place, same way. Static organizational tasks are introduced in kindergarten, first and second grade. We break down tasks and ask students to explicitly complete very defined units of information, at a certain time and place. Write your name at the top of the page, read the instructions, complete the work, when done turn the paper over and sit quietly until time is up.
Dynamic organizational systems and skills involve constant adjustments to priorities, workloads, timeframes, tasks and places. They are less teacher-directed and more student-directed. By 4th grade, teachers are introducing dynamic assignments to students with moderate levels of support. Soon after that we expect students to be able to manage increasingly dynamic workloads with little extra support or direct teaching. By high school, almost all school and homework has dynamic components requiring students to use EF skills to allocate time, resources, places to work, etc.
Here’s the good news: most of us understand that to tackle a dynamic task we have to break it down into its static elements. The dynamic part of the task requires thinking; the static part of the task requires doing. A dynamic assignment such as writing an essay requires a significant portion of the task be spent thinking about the topic before the static tasks of actually writing the paper at a table, at a specified hour, etc. One of the great challenges for our spectrum students is learning to break down dynamic tasks into more concrete, static chunks of work.
Fostering organizational skills in students with ASD requires an evolutionary approach towards teaching students, one that is ideally started at an early age. Students hone organizational skills starting in preschool, when we first ask them to clean up their toys. Teachers can accurately identify organized versus disorganized students as early as kindergarten. By 4th grade teachers expect students to be proficient with EF skills.
However, the reality is that the majority of our ASD students of all ages desperately need help with homework, specifically, and EF skills in general. Help is available. The following 10 steps illuminate specific aspects of EF skills that increase students’ static and dynamic organizational coping mechanisms. While these steps are interrelated and synergistic, avoid trying to teach them all at the same time. Each may be difficult to grasp and master for the student with ASD; allow learning to take its own pace. Keep expectations realistic, talk things through regularly, and probe for misunderstandings or miscommunication. Learning EF skills is a dynamic system of its own, with its static components. Make sure your child or student experiences success and feels competent at each stage of the process.
10 Steps to Build Organization Skills
1. Clearly define what needs to be done
Too often, parents and schools view organization goals too simply: “the student must write the assignment in his planner.” Clearly this is not nearly enough detail for most tasks and may not even be the best starting goal for a particular student. Adults must be organized in their own thinking if they are to effectively teach students with EF deficits this skill. Go beyond giving out assignments; help the student understand how to also approach the task from an organizational standpoint.
2. Move it with motivation
Almost all students with weak organizational skills also struggle with motivation to accomplish homework tasks. Parents and teachers often don’t realize this lack of motivation can stem from feeling overwhelmed by the task demands. Students with the greatest motivational challenges are often our most intelligent students (e.g. those with high IQ scores). We often assume “smart” means “organized” and say things like “come on, I know you can do this, I know you are smart.” Yet, they may have the hardest time motivating themselves when overwhelmed because they have never had to work at learning. Learning just happened if they stayed attentive.
By adolescence, students need to appreciate that completing work - even work that seems somewhat ridiculous to them – has its rewards. It establishes them as hard working in the eyes of others, improves their grades and increases feelings of self-worth through meeting their grade level academic expectations. However, as obvious as this sounds, this level of cause-effect can still be too overwhelming to some spectrum students because it requires delayed gratification.
Many students need to start at a much more concrete level of motivation, with very small work steps combined with reward early in the task completion process. For example, if a student cannot easily work for an hour, have him work successfully on a single part of the task for just 10 minutes before he gets to pause and congratulate himself. Self-motivation increases when students feel confident in understanding and accomplishing the task before them. It doesn’t matter how “well” you teach students these EF skills; if they are unmotivated, they will not implement the ideas. Work directly on helping students tackle and overcome motivation challenges.
3. Prepare the environment
Most adults familiar with helping students “get organized” understand this point. Establish a dedicated workspace for homework that includes the essential tools: pen, pencil, paper, etc. Color coding tasks, making sure the student has an organized binder, access to a time-timer (www.timetimer.com) create structures that promote success during homework time.
4. Chunk and time it
Assignments that sound coherent and structured to teachers can still overwhelm a student with EF challenges. For example: “write a report focusing on the economy, culture, weather and climate of a specific country.” Clear enough, you think? Maybe to us, but not to them. Make sure the student understands how to “chunk” an assignment (break it down into smaller pieces) and how the individual parts create the larger whole. For example, not all students will know their report needs four sections, producing essentially “mini-essays” worked on separately and then joined together.
Furthermore, once they “chunk” the project students also need to predict how long each chunk will take to complete. The majority of our students with poor organizational skill have a resounding inability to predict how long projects will take across time. In fact, they tend to be weak in all aspects of interpreting and predicting time. Consider this: Is there anything you do without first predicting how long it will take? We “time map” everything, gauging how the task will or will not fit into what we’re doing now, an hour from now, later in the day or later in the week.
Homework functions in much the same way. Students are more willing to tackle homework when they can reliably predict how long they will have to work on the task. For example, a student will usually calmly do math if it should only take 5-10 minutes. However, for those spectrum students who can’t predict time, the nebulous nature of the activity incites anxiety such that they may cry 45 minutes over doing a 10-minute math assignment. When the student does not – or cannot - consider time prediction as part of his organizational skill set, he is likely to waste a lot of time rather than use time to his advantage.
5. Use visual structures
As the school years progress, homework shifts from mostly static tasks doled out by one teacher to mostly dynamic tasks assigned by many different individuals. We expect students to self-organize and know how to juggle the many pieces of learning that make up each class, grade and level of education. Yet, this valuable skill is never directly taught!
Visual long-term mapping charts, such as a Gantt Chart, (www.ganttchart.com) can help students plan and monitor multiple activities. These bar type graphs allow a student to visually track multiple projects across time, determine when they are due and how much time is available to work on each. For example, a history paper may be assigned in February and due in late March; a line would run from early February to late March to indicate the time allocated to the project. A math project assigned in early March is also due in late March; another line would represent this project. Visually the student can see that two big projects are due at about the same time, and both are worth significant grade points. This then helps the student understand why he should not wait until the last minute to start one or both assignments. Gantt charts are frequently used in business, but have yet to make it into student software for school/homework planning. However, they are easy to create and use at home or in the classroom. For students with ASD, they are invaluable tools for organization.
Visual structures can represent entire projects and then also be used for individual chunks, creating the visual organizational framework students with EF deficits need. Once assignments are understood as needing to be worked on across time, we can encourage students to chunks tasks to be worked on during specific weeks, then make related lists of things to do on specific days.
6. Prioritize and plan daily
Learning to prioritize is a valuable skill and helps the student get things done. Keep in mind that many of us make daily lists but don’t always complete all tasks on our list, and that priority is largely based on the value we place on the assignment. Within the school setting, “value” is often dictated by the teacher. Priority is a factor of the task’s value overall, its deadline and the time to complete it. However, just because a task is due does not mean a student needs to make a decision to complete it, especially if it is a low priority or low value task to the student or the teacher. For example, during her sophomore year in high school my daughter was looking at her math grades online. I looked over her shoulder and saw she had mostly A’s and B’s but noticed she had two F’s. I exclaimed, “Robyn, you have two F’s”, to which she replied, “Mom, they were each worth one point. They were hardly worth doing.” Robyn realized that in light of the many assignments she had to juggle for all her classes, projects with the least point value were not worth doing; she’d rather save her time and effort for the larger, more important projects.
With a prioritized plan in hand, many students will still struggle with actually working on the tasks. Even students with high intelligence may have difficulty getting themselves to work on projects not of their liking. Their baseline attention span may be no more than 7-10 minutes. (Test one of your student’s baseline attention span by observing how long he can attend to mundane projects without self-distracting. You may be surprised by how short it is!)
Help students succeed with their daily schedule by teaching them to take frequent small breaks at the end of their baseline attention span. For example, a graduate student in theology found he could only push himself through 10-minute work cycles before feeling overwhelmed or internally distracted. He used a visual time-timer and gave himself a short stretch break every 10 minutes. Once he completed a number of these short work cycles he gave himself a larger reward. The key to using self-reward is to make sure the small reward isn’t likely to be distracting or absorbing (computer games, TV, reading a book). Instead make these small breaks quick and refreshing, just to refocus attention: sensory based activities (stretching or movement), a small snack, a quick trip to the bathroom or pencil sharpener.
7. Hunt and gather
Simply put: students need to plan time into their schedule to locate different resources to complete a task. For example, research at the library might be a “chunk” they plan for on their homework list (don’t forget travel time!).
8. Consider perspective
Homework is more effectively completed when students start by considering the teacher’s perspective before diving into the assignment. An assignment done well is one that meets the teacher’s expectations and follows the teacher’s instructions. A high school student went to great lengths to develop a computer program for his computer programming class. His teacher came to me exasperated, explaining that while well done, the project was totally unrelated to the class assignment.
Parent perspectives enter into the homework plan also. Many parents expect children to finish homework before watching TV. Even though children may have accomplished a great deal of homework (in their mind “enough”), trouble can still erupt because it wasn’t “finished” in the parent’s mind.
Perspective taking can be quite overwhelming to many students with social learning and organizational problems. A strategy called “social behavior mapping” (Winner, 2007) can help students understand how expectations, actions and reactions affect not only how we are viewed by others, but how their responses ultimately impact the way we view ourselves.
9. Communicate and then communicate some more
Homework assignments often result in students needing help from others. Knowing when and how to ask for help can be challenging for students with social learning and organizational weaknesses. Avoid assuming students – especially “bright” students - should intuitively know how to ask for help, clarification or even how to collaborate with others on assignments. These skills are not nearly as simple as they seem and may need to be explicitly taught by the special education teacher or speech language pathologist at your school. Tip: as students age into middle school and beyond, most are turning to their peer group rather than their teacher for help. This fosters peer support networks desperately needed for success in college and later life.
10. Completion and reward
Having a clearly defined “end” to a task is important for the concrete thinking minds of students with ASD. Be sure the child knows what “finished” means, both at school and at home. For instance, a homework assignment is not truly “done” until it is turned in to the teacher at school. While homework turn-in boxes (static) are commonly found in elementary school, they all but vanish during middle and high school years when even the act of turning in homework becomes dynamic. Make sure your students know where to turn in homework. Also, parents should save big celebrations for completed projects until the assignments are actually turned in. Some students may need reminder systems set up to make sure work is turned in on time. Visual notes, PDA messages or watch timers can be used to help.
At home, “finished” homework yields its own rewards when students can engage in more personally pleasing activities, such as a computer game, watching TV, reading for pleasure, etc. Even our favorite activities have a finite time frame attached to them before it is time to go to bed. Many of these organizational strategies can be used to help a student learn to shut down a favorite activity and get his brain ready for bed.
“Planning takes time!” This is a message we need to constantly reinforce with our spectrum students. “Teaching organizational skills takes time, across months and even years!” This is a message we need to reinforce to parents and teachers. Whether students are using organizational skills for homework, doing chores, preparing for a weekend activity or something as simple as getting a snack, as children grow and develop, tasks become increasing complex and dynamic with each passing year. Teachers and parents need to work together, while children are still in elementary school, to identify and teach any or all of the 10 steps mentioned in this article that are problematic for the spectrum child. In doing so, we give children the tools not just to handle homework, but to be successful in all areas of life.
Michelle Garcia Winner is internationally recognized as an innovative clinician, enthusiastic workshop presenter and prolific author in the field of social thinking and social cognitive functioning. She received a 2008 Congressional Recognition Award for her work. Visit www.socialthinking.com for additional articles, books and information.
Autism Asperger’s Digest © 2009. All Rights Reserved. Autism Asperger’s Digest is a multiple-award winning magazine providing real life information for meeting the real life challenges of autism spectrum disorders. Subscribe at www.AutismDigest.com
http://www.foxnews.com/story/0,2933,569207,00.html
Tuesday, November 10, 2009
YOU ARE INVITED TO:
Conversation – Connection - Information
In uncertain times, how do we create something that is different than we have today?
Join us for:
Conversations That Matter ~The Art of Advocacy
Connect with others in your community who care about making an impact.
Discuss effective ways to advocate for your issue.
Find out how to get involved during the legislative session.
Who should attend: Parents of children with disabilities, self advocates, local professionals working in disability supports and services, and persons with an interest in supporting people with disabilities and their families are also encouraged to attend.
Why: Discovering the right resources at the state and community level can make a difference in the quality of services for people with disabilities. Be a part of connecting with others who share your interest in building strong communities of support for people with disabilities. Find out how to get more involved in creating solutions for families.
Date: November 16
Time: 7:00 - 9:00 p.m.
Place: The
RSVP: Manjula Devi
nmdevi29@gmail.com
For the full list of dates, times and places
throughout the state, go to www.aadd.org
Hosted by:
• All About Developmental Disabilities
• Georgia Council on Developmental Disabilities
• Unlock the Waiting List Campaign
• Community Action Pioneers of Gwinnett
“There is nothing more powerful than the people themselves telling the story.”
– Pat Puckett, Executive Director,
State Independent Living Council
HERE IS WHERE TO JOIN US.
City: Lawrenceville
Date: November 16
Time: 7:00 - 9:00 p.m.
Location:
The
678-226-6493 ph
Contact:
Manjula Devi
nmdevi29@gmail.com
Directions:
From I-285:
- Head northwest 0.1 mi
- Keep right at the fork, follow signs for
I-85 N/Greenville 466 ft
- Keep right at the fork, follow signs for
- Follow signs for I-85 N/Greenville and
merge onto I-85 N 10.1 mi
- Take exit 108 toward
Sugarloaf Pkwy 0.7 mi
- Keep right at the fork, follow signs for
GA-120 E/Lawrenceville and merge onto
- Turn right at
Sugarloaf Pkwy 0.9 mi
-
The
Service Dog a Calming Presence For Entire Family
Chancer trained to deal with child who has fetal alcohol syndrome
By Helena Oliviero
The Atlanta Journal-Constitution
North Fulton County News
November 6, 2009
Eleven-year-old Morasha Winokur never knows what to expect from her brother, Iyal, when riding the school bus home together.
Iyal Winokur, 11, hangs out with his service dog Chancer at his Roswell home. Iyal has fetal alcohol syndrome and can have tantrums. Chancer helps to calm him.
Morasha Winokur, 11, wrote a book about life with her brother. Both were adopted from Russian orphanages.
Iyal Winokur was diagnosed with fetal alcohol syndrome when he was 4.
Chancer is believed to be the first dog trained to help a child with fetal alcohol syndrome. The dog nuzzles Iyal Winokur's neck or puts his paw on him when he has a tantrum.
Or he might get in her face and yell.
What is predictable is this: Once they get to their Roswell home, Iyal will see his dog, Chancer, and settle down.
For Morasha and her family, Chancer has made home a little more peaceful for the family and for Iyal, 11, who has fetal alcohol syndrome.
Before the dog arrived, Iyal was fidgety and prone to outbursts, often directed at his sister.
“He would say my name over and over. Morasha. Morasha. He would sing it. He would yell it,” Morasha said. “But now, he is more interested in Chancer.”
Chancer is believed to be the country’s first-ever service dog trained to deal with a child who has fetal alcohol syndrome, which is caused by women who drink alcohol while pregnant.
Morasha shares her experience of growing up with Iyal and how life has changed with Chancer in a book she wrote: “My Invisible World: Life with My Brother, His Disability & His Service Dog.”
The book, which Morasha decided to start writing three years ago, was published by Better Endings New Beginnings and recently hit book stores across metro Atlanta.
“I wanted to educate people. I want people to know women shouldn’t drink alcohol when they are pregnant,” Morasha said. “And I wanted to share our story.”
She writes of Iyal: “If he wants attention, he is like a big baseball mitt. All the attention goes directly to him and everyone tries to catch his ball and hold on. In fact, he gets so much attention that there are times I feel like no even realizes I am there. This is when my invisible world gets really big, and I feel really small.”
A diagnosis
When Donnie, a TV producer at the time, and Harvey Winokur, a rabbi, met in 1997, they were both in their early 40s and eager to start a family. They got married less than three months after their first date and, after a few months of failed fertility treatments, went to plan B: adoption.
Working with an agency that focuses on Russian adoptions, they waited only a few months before they were given a video of Morasha and Iyal, born just two days apart and living in separate orphanages. In the videos, each lasting only about three minutes, Morasha and Iyal, both just more than a year old, appeared malnourished and very small for their age. Donnie and Harvey thought all the babies really needed was a loving home.
Once home, Iyal started walking almost immediately. Morasha took a bit more time. Many people mistook the two for twins and for the first two years they seemed like twins. They played with the same toys; they read books in matching rocking chairs.
But when Iyal started preschool, his parents noticed troubling behavior. He began to have frequent angry outbursts and tantrums.
And then one day a report came home from the preschool: Iyal got on a bike and purposely ran into another child.
“I knew that was not right. That was not acceptable,” mother Donnie Winokur said.
A developmental pediatrician diagnosed Iyal with FAS when he was 4 years old.
FAS is considered the extreme end of a spectrum of disorders known as fetal alcohol spectrum disorders (FASDs). The group of disorders can range from mild to severe and can include abnormal facial features, poor coordination, hyperactive behavior, poor memory and low IQ. Iyal’s condition is considered to be in the severe range.
“At first, the diagnosis is just words on a paper,” said his mother, who is featured in a video about the disorder made by the Atlanta-based Centers for Disease Control and Prevention and posted on its Web site, and is also the executive director of the newly created Georgia chapter of the National Organization on Fetal Alcohol Syndrome (NOFAS). “And there’s no substance until you start living with it and you start having different fears and different levels of grieving. And you live your life like you are in constant anticipation of a hurricane.”
Over time, the age and developmental gap between Morasha and Iyal has widened. Though both are in the sixth grade, Iyal is in special education classes and has a teacher’s aide who works with him full time.
He reads at about the third-grade level, but his mother worries he might never be able to live independently as an adult. Morasha’s worries are more immediate. Her brother’s unpredictable behavior is so demanding, she gets left out.
“Iyal will get his way,” their mother acknowledges. “I tell Morasha to go with it. It’s hard for her. It’s not fair. Life is not fair. But it’s still OK. And everybody deserves to be loved and have a family.”
Still, the Winokurs were determined to find a way for the whole family to cope with Iyal’s disability.
So two years ago, Donnie Winokur saw a brochure about service dogs and contacted 4 Paws for Ability. The Ohio-based organization, which trains about 100 dogs a year, mostly for autistic children, had never trained a dog for FAS. But the executive director, Karen Shirk, agreed to give it her best shot.
A dog to the rescue
The Winokurs sent the trainer video footage of Iyal in full-fledged tantrums, sobbing and thrashing about, and unable to sit still at the kitchen table.
After watching the video, Shirk picked Chancer, a golden retriever with deep brown eyes, for Iyal. She believed Chancer’s calm demeanor would make him a good fit.
“We needed a dog of a larger size and not the kind of dog that would feed off of Iyal’s emotions,” said Shirk. “A dog that wouldn’t be afraid of Iyal’s meltdowns and a dog that would go with the flow. And that was Chancer.”
The Association of Pet Dog Trainers is unaware of any other dogs trained to assist a child with FAS.
Shirk said she’s already training two more FAS dogs out of requests from parents who heard about Iyal’s dog.
To train Chancer, Shirk used Iyal’s tantrums as “signals” or “commands” for the dog. Chancer was trained to disrupt erratic behavior by “nuzzling” Iyal’s neck or putting his paw on Iyal when he had a tantrum. But if Iyal thrashes about violently, Iyal’s mother will order Chancer to stay back so he won’t get hurt.
When Iyal seems jittery or unable to sit still, Chancer will lay his 90-pound body across Iyal’s legs to help calm him down. Chancer also gives Iyal lots of sloppy kisses.
“Chancer was happy. His brown eyes sent signals of dog happiness. ...” Morasha wrote in her book.
Since Chancer joined the family, the outbursts have declined, as well as the intensity. Iyal started opening up about his feelings and his illness.
“He would say: ‘Why does God make me break things?’ And he said, ‘Why did my birth mother drink alcohol?’ ” Donnie Winokur said.
And then one day, he showed concern for Chancer.
“Did Chancer’s mommy drink alcohol when Chancer was in her tummy?” he asked his mother.
A calm family
On a recent afternoon, Morasha and Iyal eat a bowl of cereal after arriving home on the school bus. Iyal fusses because he wants chocolate, but he settles on Reese’s Puffs cereal.
After they finish the snack, Morasha calls a friend.
Iyal goes directly to Chancer.
Chancer licks Iyal’s face. Iyal hugs his dog.
“Happy, you make me happy,” Iyal says to his dog.
Iyal then retreats to a room downstairs to play video games. With Chancer at his feet, Iyal seems content.
And so does the entire family.
“Chancer has softened the hard edges,” said Donnie Winokur. “We needed another character in the play. ... And that was Chancer.”
Fetal alcohol spectrum disorders
Fetal alcohol spectrum disorders (FASDs) are caused by a woman drinking alcohol during pregnancy.
FASDs refers to conditions that can range from mild to severe and can include abnormal facial features, poor coordination, hyperactive behavior, poor memory and low IQ.
It is estimated that fetal alcohol syndrome, a severe form of a fetal alcohol spectrum disorder, occurs in about 1 of every 1,000 births. But the U.S. Department of Health and Human Services reports the number of all alcohol-related conditions resulting from prenatal exposure of alcohol could be as high as 1 in every 100 live births.
A woman who drinks any alcohol throughout the pregnancy is at risk since there is no known amount of alcohol that is safe to drink while pregnant, but larger amounts of alcohol and binge drinking are more harmful than drinking smaller amounts.
To see the CDC video of Iyal’s story, go to www.cdc.gov/ncbddd/fasd/videos/index.html
Source: CDC, the U.S. Department of Health and Human Services, and American Academy of Pediatrics.
Bita Honarvar, bhonarvar@ajc.com
http://www.ajc.com/news/north-fulton/service-dog-a-calming-188966.html
© 2009 The Atlanta Journal-Constitution
By Helena Oliviero
The Atlanta Journal-Constitution
North Fulton County News
November 6, 2009
Eleven-year-old Morasha Winokur never knows what to expect from her brother, Iyal, when riding the school bus home together.
Iyal Winokur, 11, hangs out with his service dog Chancer at his Roswell home. Iyal has fetal alcohol syndrome and can have tantrums. Chancer helps to calm him.
Morasha Winokur, 11, wrote a book about life with her brother. Both were adopted from Russian orphanages.
Iyal Winokur was diagnosed with fetal alcohol syndrome when he was 4.
Chancer is believed to be the first dog trained to help a child with fetal alcohol syndrome. The dog nuzzles Iyal Winokur's neck or puts his paw on him when he has a tantrum.
Or he might get in her face and yell.
What is predictable is this: Once they get to their Roswell home, Iyal will see his dog, Chancer, and settle down.
For Morasha and her family, Chancer has made home a little more peaceful for the family and for Iyal, 11, who has fetal alcohol syndrome.
Before the dog arrived, Iyal was fidgety and prone to outbursts, often directed at his sister.
“He would say my name over and over. Morasha. Morasha. He would sing it. He would yell it,” Morasha said. “But now, he is more interested in Chancer.”
Chancer is believed to be the country’s first-ever service dog trained to deal with a child who has fetal alcohol syndrome, which is caused by women who drink alcohol while pregnant.
Morasha shares her experience of growing up with Iyal and how life has changed with Chancer in a book she wrote: “My Invisible World: Life with My Brother, His Disability & His Service Dog.”
The book, which Morasha decided to start writing three years ago, was published by Better Endings New Beginnings and recently hit book stores across metro Atlanta.
“I wanted to educate people. I want people to know women shouldn’t drink alcohol when they are pregnant,” Morasha said. “And I wanted to share our story.”
She writes of Iyal: “If he wants attention, he is like a big baseball mitt. All the attention goes directly to him and everyone tries to catch his ball and hold on. In fact, he gets so much attention that there are times I feel like no even realizes I am there. This is when my invisible world gets really big, and I feel really small.”
A diagnosis
When Donnie, a TV producer at the time, and Harvey Winokur, a rabbi, met in 1997, they were both in their early 40s and eager to start a family. They got married less than three months after their first date and, after a few months of failed fertility treatments, went to plan B: adoption.
Working with an agency that focuses on Russian adoptions, they waited only a few months before they were given a video of Morasha and Iyal, born just two days apart and living in separate orphanages. In the videos, each lasting only about three minutes, Morasha and Iyal, both just more than a year old, appeared malnourished and very small for their age. Donnie and Harvey thought all the babies really needed was a loving home.
Once home, Iyal started walking almost immediately. Morasha took a bit more time. Many people mistook the two for twins and for the first two years they seemed like twins. They played with the same toys; they read books in matching rocking chairs.
But when Iyal started preschool, his parents noticed troubling behavior. He began to have frequent angry outbursts and tantrums.
And then one day a report came home from the preschool: Iyal got on a bike and purposely ran into another child.
“I knew that was not right. That was not acceptable,” mother Donnie Winokur said.
A developmental pediatrician diagnosed Iyal with FAS when he was 4 years old.
FAS is considered the extreme end of a spectrum of disorders known as fetal alcohol spectrum disorders (FASDs). The group of disorders can range from mild to severe and can include abnormal facial features, poor coordination, hyperactive behavior, poor memory and low IQ. Iyal’s condition is considered to be in the severe range.
“At first, the diagnosis is just words on a paper,” said his mother, who is featured in a video about the disorder made by the Atlanta-based Centers for Disease Control and Prevention and posted on its Web site, and is also the executive director of the newly created Georgia chapter of the National Organization on Fetal Alcohol Syndrome (NOFAS). “And there’s no substance until you start living with it and you start having different fears and different levels of grieving. And you live your life like you are in constant anticipation of a hurricane.”
Over time, the age and developmental gap between Morasha and Iyal has widened. Though both are in the sixth grade, Iyal is in special education classes and has a teacher’s aide who works with him full time.
He reads at about the third-grade level, but his mother worries he might never be able to live independently as an adult. Morasha’s worries are more immediate. Her brother’s unpredictable behavior is so demanding, she gets left out.
“Iyal will get his way,” their mother acknowledges. “I tell Morasha to go with it. It’s hard for her. It’s not fair. Life is not fair. But it’s still OK. And everybody deserves to be loved and have a family.”
Still, the Winokurs were determined to find a way for the whole family to cope with Iyal’s disability.
So two years ago, Donnie Winokur saw a brochure about service dogs and contacted 4 Paws for Ability. The Ohio-based organization, which trains about 100 dogs a year, mostly for autistic children, had never trained a dog for FAS. But the executive director, Karen Shirk, agreed to give it her best shot.
A dog to the rescue
The Winokurs sent the trainer video footage of Iyal in full-fledged tantrums, sobbing and thrashing about, and unable to sit still at the kitchen table.
After watching the video, Shirk picked Chancer, a golden retriever with deep brown eyes, for Iyal. She believed Chancer’s calm demeanor would make him a good fit.
“We needed a dog of a larger size and not the kind of dog that would feed off of Iyal’s emotions,” said Shirk. “A dog that wouldn’t be afraid of Iyal’s meltdowns and a dog that would go with the flow. And that was Chancer.”
The Association of Pet Dog Trainers is unaware of any other dogs trained to assist a child with FAS.
Shirk said she’s already training two more FAS dogs out of requests from parents who heard about Iyal’s dog.
To train Chancer, Shirk used Iyal’s tantrums as “signals” or “commands” for the dog. Chancer was trained to disrupt erratic behavior by “nuzzling” Iyal’s neck or putting his paw on Iyal when he had a tantrum. But if Iyal thrashes about violently, Iyal’s mother will order Chancer to stay back so he won’t get hurt.
When Iyal seems jittery or unable to sit still, Chancer will lay his 90-pound body across Iyal’s legs to help calm him down. Chancer also gives Iyal lots of sloppy kisses.
“Chancer was happy. His brown eyes sent signals of dog happiness. ...” Morasha wrote in her book.
Since Chancer joined the family, the outbursts have declined, as well as the intensity. Iyal started opening up about his feelings and his illness.
“He would say: ‘Why does God make me break things?’ And he said, ‘Why did my birth mother drink alcohol?’ ” Donnie Winokur said.
And then one day, he showed concern for Chancer.
“Did Chancer’s mommy drink alcohol when Chancer was in her tummy?” he asked his mother.
A calm family
On a recent afternoon, Morasha and Iyal eat a bowl of cereal after arriving home on the school bus. Iyal fusses because he wants chocolate, but he settles on Reese’s Puffs cereal.
After they finish the snack, Morasha calls a friend.
Iyal goes directly to Chancer.
Chancer licks Iyal’s face. Iyal hugs his dog.
“Happy, you make me happy,” Iyal says to his dog.
Iyal then retreats to a room downstairs to play video games. With Chancer at his feet, Iyal seems content.
And so does the entire family.
“Chancer has softened the hard edges,” said Donnie Winokur. “We needed another character in the play. ... And that was Chancer.”
Fetal alcohol spectrum disorders
Fetal alcohol spectrum disorders (FASDs) are caused by a woman drinking alcohol during pregnancy.
FASDs refers to conditions that can range from mild to severe and can include abnormal facial features, poor coordination, hyperactive behavior, poor memory and low IQ.
It is estimated that fetal alcohol syndrome, a severe form of a fetal alcohol spectrum disorder, occurs in about 1 of every 1,000 births. But the U.S. Department of Health and Human Services reports the number of all alcohol-related conditions resulting from prenatal exposure of alcohol could be as high as 1 in every 100 live births.
A woman who drinks any alcohol throughout the pregnancy is at risk since there is no known amount of alcohol that is safe to drink while pregnant, but larger amounts of alcohol and binge drinking are more harmful than drinking smaller amounts.
To see the CDC video of Iyal’s story, go to www.cdc.gov/ncbddd/fasd/videos/index.html
Source: CDC, the U.S. Department of Health and Human Services, and American Academy of Pediatrics.
Bita Honarvar, bhonarvar@ajc.com
http://www.ajc.com/news/north-fulton/service-dog-a-calming-188966.html
© 2009 The Atlanta Journal-Constitution
Georgia Council on Developmental Disabilities Accepting Applications
The Georgia Council on Developmental Disabilities is accepting applications from individuals with developmental disabilities who are interested in becoming Advisory Members of the Council. We will accept applications until December 1, 2009.
In January, 1998, the Governor's Council on Developmental Disabilities created a membership category called advisory member. These are individuals with developmental disabilities and family members not appointed by the Governor to the Council but who are valuable in understanding the needs and issues in Georgia. Advisory members have a better understanding of how the Council operates and its mission. After having served a two-year term, advisory members are recommended to the Governor to serve as full Council members as openings became available. Like full Council members, advisory members are expected to attend Council and committee meetings, take responsibility and follow through on assignments, and open doors to communities that they participate in. Each member is expected to develop certain skills such as to learn more about local, state, and federal issues impacting people with developmental disabilities and their families.
Description of Advisory Membership:
1. The Council will accept up to six advisory members at any time.
2. Each advisory member will serve only one two-year term.
3. Advisory members are expected to attend quarterly Council meetings, participate on atleast one standing committee, and attend Council sponsored events.
4. Advisory members may participate in all discussions of committees and full Council butdo not have voting privilege.
5. Advisory members must follow the same standards and policies as Council membersincluding conflict of interest and travel policies.
6. Advisory members are entitled to travel and participate in all Council activities includingreimbursement for travel, child care and personal assistance.
7. Advisory members may request funds to travel to events in Georgia or other parts of thecountry. These requests must receive approval from the Council Chairperson inconsultation with the Executive Director.
8. One Advisory member will be elected to serve on the Council's Executive Committee.
Council Member Attendance PolicyThe Council recognizes the importance of members attending quarterly and committee meetings. Recognizing the importance of attendance, the Council's by-laws state that If a Council member is not in attendance at two successive official business meetings, the Executive Board may consider whether to request of that Council member his or her voluntary resignation from the Council.
1. The Chairperson will contact any individual who has missed two consecutive meetings and determine why the individual has missed meetings. The Chairperson will stress the importance of attending meetings and determine the individuals commitment to Council.
2. The Chairperson will send a follow-up letter to the individual emphasizing the importance of attending meetings and explaining the process for member removal if the individual continues to miss meetings. The Executive Board will receive a copy of this letter.
3. If the individual misses a third meeting, the Chairperson will call the individual and explain that he/she is in jeopardy of being removed from the Council.
4. The Chairperson will send a letter to the individual explaining that procedures will be taken to remove the individual from Council. At that time, the individual may request a meeting with the Executive Board to explain any circumstances for missing meetings.The Executive Board will determine whether to ask for the individuals resignation or request removal by the Governor.
The Executive Board will receive a copy of all correspondence.
For questions or comments please call 404-657-2126 or 1-888275-4233.
Please click on the link below to view and print application, you may also go to the Georgia Council on Developmental Disabilities website at gcdd.org, scroll down and click on the Advisory Member Application.
No faxes will be accepted.
http://www.ciclt.net/ul/gcdd/ex-officio application.pdf
In January, 1998, the Governor's Council on Developmental Disabilities created a membership category called advisory member. These are individuals with developmental disabilities and family members not appointed by the Governor to the Council but who are valuable in understanding the needs and issues in Georgia. Advisory members have a better understanding of how the Council operates and its mission. After having served a two-year term, advisory members are recommended to the Governor to serve as full Council members as openings became available. Like full Council members, advisory members are expected to attend Council and committee meetings, take responsibility and follow through on assignments, and open doors to communities that they participate in. Each member is expected to develop certain skills such as to learn more about local, state, and federal issues impacting people with developmental disabilities and their families.
Description of Advisory Membership:
1. The Council will accept up to six advisory members at any time.
2. Each advisory member will serve only one two-year term.
3. Advisory members are expected to attend quarterly Council meetings, participate on atleast one standing committee, and attend Council sponsored events.
4. Advisory members may participate in all discussions of committees and full Council butdo not have voting privilege.
5. Advisory members must follow the same standards and policies as Council membersincluding conflict of interest and travel policies.
6. Advisory members are entitled to travel and participate in all Council activities includingreimbursement for travel, child care and personal assistance.
7. Advisory members may request funds to travel to events in Georgia or other parts of thecountry. These requests must receive approval from the Council Chairperson inconsultation with the Executive Director.
8. One Advisory member will be elected to serve on the Council's Executive Committee.
Council Member Attendance PolicyThe Council recognizes the importance of members attending quarterly and committee meetings. Recognizing the importance of attendance, the Council's by-laws state that If a Council member is not in attendance at two successive official business meetings, the Executive Board may consider whether to request of that Council member his or her voluntary resignation from the Council.
1. The Chairperson will contact any individual who has missed two consecutive meetings and determine why the individual has missed meetings. The Chairperson will stress the importance of attending meetings and determine the individuals commitment to Council.
2. The Chairperson will send a follow-up letter to the individual emphasizing the importance of attending meetings and explaining the process for member removal if the individual continues to miss meetings. The Executive Board will receive a copy of this letter.
3. If the individual misses a third meeting, the Chairperson will call the individual and explain that he/she is in jeopardy of being removed from the Council.
4. The Chairperson will send a letter to the individual explaining that procedures will be taken to remove the individual from Council. At that time, the individual may request a meeting with the Executive Board to explain any circumstances for missing meetings.The Executive Board will determine whether to ask for the individuals resignation or request removal by the Governor.
The Executive Board will receive a copy of all correspondence.
For questions or comments please call 404-657-2126 or 1-888275-4233.
Please click on the link below to view and print application, you may also go to the Georgia Council on Developmental Disabilities website at gcdd.org, scroll down and click on the Advisory Member Application.
No faxes will be accepted.
http://www.ciclt.net/ul/gcdd/ex-officio application.pdf
Children With Autism Show Specific Handwriting Impairments
Christina T. Fuentes, BS, Stewart H. Mostofsky, MD and Amy J. Bastian, PhD
Background: Handwriting skills, which are crucial for success in school, communication, and building children’s self-esteem, have been observed to be poor in individuals with autism. Little information exists on the handwriting of children with autism, without delineation of specific features that can contribute to impairments. As a result, the specific aspects of handwriting in which individuals with autism demonstrate difficulty remain unknown.
Methods: A case-control study of handwriting samples from children with and without autism spectrum disorders (ASD) was performed using the Minnesota Handwriting Assessment. Samples were scored on an individual letter basis in 5 categories: legibility, form, alignment, size, and spacing. Subjects were also tested on the Wechsler Intelligence Scale for Children–IV and the Physical and Neurological Examination for Subtle (Motor) Signs.
Results: We found that children with ASD do indeed show overall worse performance on a handwriting task than do age- and intelligence-matched controls. More specifically, children with ASD show worse quality of forming letters but do not show differences in their ability to correctly size, align, and space their letters. Within the ASD group, motor skills were significantly predictive of handwriting performance, whereas age, gender, IQ, and visuospatial abilities were not.
Conclusions: We addressed how different elements of handwriting contribute to impairments observed in children with autism. Our results suggest that training targeting letter formation, in combination with general training of fine motor control, may be the best direction for improving handwriting performance in children with autism.
From the Departments of Neuroscience (C.T.F., A.J.B.) and Neurology (S.H.M., A.J.B.), Johns Hopkins School of Medicine, Baltimore; and Kennedy Krieger Institute (C.T.F., S.H.M., A.J.B.), Baltimore, MD.
Address correspondence and reprint requests to Dr. Amy Bastian, Kennedy Krieger Institute, 707 N Broadway–G05, Baltimore, MD 21205 bastian@kennedykrieger.org
http://www.neurology.org/cgi/content/abstract/73/19/1532?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&fulltext=autistic+handwriting&searchid=1&FIRSTINDEX=0&sortspec=relevance&resourcetype=HWCIT
© 2009 American Academy of Neurology
Background: Handwriting skills, which are crucial for success in school, communication, and building children’s self-esteem, have been observed to be poor in individuals with autism. Little information exists on the handwriting of children with autism, without delineation of specific features that can contribute to impairments. As a result, the specific aspects of handwriting in which individuals with autism demonstrate difficulty remain unknown.
Methods: A case-control study of handwriting samples from children with and without autism spectrum disorders (ASD) was performed using the Minnesota Handwriting Assessment. Samples were scored on an individual letter basis in 5 categories: legibility, form, alignment, size, and spacing. Subjects were also tested on the Wechsler Intelligence Scale for Children–IV and the Physical and Neurological Examination for Subtle (Motor) Signs.
Results: We found that children with ASD do indeed show overall worse performance on a handwriting task than do age- and intelligence-matched controls. More specifically, children with ASD show worse quality of forming letters but do not show differences in their ability to correctly size, align, and space their letters. Within the ASD group, motor skills were significantly predictive of handwriting performance, whereas age, gender, IQ, and visuospatial abilities were not.
Conclusions: We addressed how different elements of handwriting contribute to impairments observed in children with autism. Our results suggest that training targeting letter formation, in combination with general training of fine motor control, may be the best direction for improving handwriting performance in children with autism.
From the Departments of Neuroscience (C.T.F., A.J.B.) and Neurology (S.H.M., A.J.B.), Johns Hopkins School of Medicine, Baltimore; and Kennedy Krieger Institute (C.T.F., S.H.M., A.J.B.), Baltimore, MD.
Address correspondence and reprint requests to Dr. Amy Bastian, Kennedy Krieger Institute, 707 N Broadway–G05, Baltimore, MD 21205 bastian@kennedykrieger.org
http://www.neurology.org/cgi/content/abstract/73/19/1532?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&fulltext=autistic+handwriting&searchid=1&FIRSTINDEX=0&sortspec=relevance&resourcetype=HWCIT
© 2009 American Academy of Neurology
Monday, November 09, 2009
About Special Needs Project
“Putting the right books in to the right hands”
Special Needs Project is a place to get child development textbooks, books about aspergers syndrome, autism, and other disabilities. Located in Santa Barbara, California, SNP serves families, professionals, agencies and schools worldwide with the largest, most authoritative collection of disability-related materials.
It began in an independent bookstore in Berkeley, California. For several years, the store produced a critical bibliography of the books available to parents at the time. Special Needs Project became a distinct entity in 1989, and it has grown from a local resource to today's catalog featuring hundreds of the best books (including selected audio and video material) in each of more than forty categories. Its Director is Hod Gray.
Special Needs Project is dedicated to making the best information available to those who need it. Adapting an often-repeated saying, Gray says, "Knowledge plus know-how equals power." SNP's unique experience knowledge base makes it particularly indispensible as consultant and source for libraries, schools and agencies wishing to build special collections in fields such as learning disabilities, autism & mental health, assistive technology, inclusion and independent living, disability rights and many others.
About SNP's Founder:
"My Hungarian was never very good," says Hod Gray, who started Special Needs Project in 1989 and continues at its head. The reference is to his graduate degree in Uralic Philology, but his life as a bookseller began in high school when as a student he started a campus bookstore. Gray has been an editor and professional fundraiser, and was an an executive in the non-profit world before returning from New York to his native California. He and Lynn Jehle started Gray's Book Company in 1980.
Their daughter Dolly (1971-1989) was born with cerebral palsy. Gray has been active with many disability organizations and now devotes full time to Special Needs Project.
http://www.specialneeds.com/about.asp
© Copyright 2000 Special Needs Project
Special Needs Project is a place to get child development textbooks, books about aspergers syndrome, autism, and other disabilities. Located in Santa Barbara, California, SNP serves families, professionals, agencies and schools worldwide with the largest, most authoritative collection of disability-related materials.
It began in an independent bookstore in Berkeley, California. For several years, the store produced a critical bibliography of the books available to parents at the time. Special Needs Project became a distinct entity in 1989, and it has grown from a local resource to today's catalog featuring hundreds of the best books (including selected audio and video material) in each of more than forty categories. Its Director is Hod Gray.
Special Needs Project is dedicated to making the best information available to those who need it. Adapting an often-repeated saying, Gray says, "Knowledge plus know-how equals power." SNP's unique experience knowledge base makes it particularly indispensible as consultant and source for libraries, schools and agencies wishing to build special collections in fields such as learning disabilities, autism & mental health, assistive technology, inclusion and independent living, disability rights and many others.
About SNP's Founder:
"My Hungarian was never very good," says Hod Gray, who started Special Needs Project in 1989 and continues at its head. The reference is to his graduate degree in Uralic Philology, but his life as a bookseller began in high school when as a student he started a campus bookstore. Gray has been an editor and professional fundraiser, and was an an executive in the non-profit world before returning from New York to his native California. He and Lynn Jehle started Gray's Book Company in 1980.
Their daughter Dolly (1971-1989) was born with cerebral palsy. Gray has been active with many disability organizations and now devotes full time to Special Needs Project.
http://www.specialneeds.com/about.asp
© Copyright 2000 Special Needs Project
Diversity in the Peace Corps
By Pamela Houston
Mobility International USA
"Surprisingly, many of my new Peace Corps companions hadn’t interacted with a person with a disability in any significant way before. Some didn’t know what to make of me, how to interact with me, what to talk to me about. Some of my fellow trainees and our team of American and I-Kiribati trainers thought that they were going to have to help and take care of me. As we went along, we all realized that at times I would need an extra leg up into a flatbed or a hand for balance in stepping from one boat into another – but so did some of the older Volunteers. People came to realize that they didn’t need to talk with me differently or be careful with me – that my dreams, goals, hopes and fears resonated with theirs."
When people use the word “diversity,” usually the picture that comes to mind is a group or community consisting of women and men from diverse racial and ethnic backgrounds. Many widen the definition to include people from various income levels, differing religions, nationalities and sexual orientation.
This is good. Our world is made up of a seemingly infinite variety of people – most of our communities in the United States reflect at least a slice of this diversity. International exchange program administrators have been striving to have their programs reflect community and national diversity for many years. I want to challenge program coordinators, recruiters and potential participants alike to widen the scope of diversity even further. People with disabilities are part of every segment of the population. We belong in all kinds of international programs -- whether our disabilities be sensory, physical, mental health-related, cognitive or health-related.
I am a recently Returned Peace Corps Volunteer. I served for two years in the Republic of Kiribati, a central Pacific island nation. I have Cerebral Palsy. I was the only Peace Corps Volunteer (PCV) with a disability out of the total of 50 Volunteers in Kiribati at any one time – and in any recent memory of I-Kiribati Peace Corps staff. My being a PCV with a disability had a multi-level impact.
My disability affects my balance and my steadiness in writing and carrying cups, buckets and other containers filled with liquid. I walk with a unique gait that my arms get quite involved with. I am staunchly independent and am able to take care of my own needs, get where I need to go, walk, ride bicycles, climb on to crowded buses, boats, flatbed trucks and whatnot. I do just about everything a little slower than everyone else because it takes some extra effort for me to coordinate my movements. For me, this is just me, just my body – it is not particularly interesting. But for other PCVs, Peace Corps staff and I-Kiribati people – I was different. From the moment I walked into our staging meeting where my training group first met, to the time I boarded the plane to return to the States 26 months later, my unassigned role was to educate people about disability issues -- to widen the circle of diversity.
Surprisingly, many of my new Peace Corps companions hadn’t interacted with a person with a disability in any significant way before. Some didn’t know what to make of me, how to interact with me, what to talk to me about. Some of my fellow trainees and our team of American and I-Kiribati trainers thought that they were going to have to help and take care of me. As we went along, we all realized that at times I would need an extra leg up into a flatbed or a hand for balance in stepping from one boat into another – but so did some of the older Volunteers. People came to realize that they didn’t need to talk with me differently or be careful with me – that my dreams, goals, hopes and fears resonated with theirs. My experience and perspective in life as someone living with a disability added to their perspective and understanding of the breadth of human experience
At the beginning of our second week in Kiribati, our group of 25 trainees and 10 trainers loaded a boat for a rough and wet 33 hour boat trip to Abemama, our training island. Our trainers swore that the trip usually only took 12 hours. Our only consolation as most of us heaved and retched over the side of the boat was that we were on the Baan te Tangira – the Rock of LOVE! Upon arriving on Abemama, tired and grimy, we were met by the residents of Tabiang, the village where we would live and learn for the next ten weeks. We gathered together in the maneaba, a meeting shelter that is central to village life. There we were warmly welcomed with sweet smelling wreathes of flowers for our heads and moimotos – young husked coconuts with a small hole carved into the top so one can drink the coconut water. After awhile, each of us were introduced to our new family.
My host family was supremely kind to me. They tried to do everything for me. Remember my staunch independence? This desire on their part to take care of me became a point of cultural and personal conflict and adaptation until the day I finally left Kiribati at close of service (COS). During our ten weeks together, I was able to demonstrate to my family, and by extension the whole village (we were all a major topic of conversation!) that my disability did not mean that I was incapable of taking care of myself, and more importantly, of participating fully in community and family life.
As time went on, I learned more about the experience of people with disabilities in Kiribati and about cultural attitudes toward disability. I learned some of the key words that are used to talk about people with any type of disability – one of those words meant “sick” and the other implied that disabled people are to be pitied, that they and their lives are sad. Non-disabled and disabled people alike used these words. I had a very difficult time with this image for myself and for my new I-Kiribati friends who had disabilities. I bristled every time someone described me as being sick or said to me “Ko kawa.” (roughly translated “how pitiful”) as they would watch me walk, climb on a bus, haul water, wash my clothes or whatever. I would usually counter that image by saying that I wasn’t sick, that I was strong, happy and quite capable of living a full life.
I-Kiribati people with disabilities live with and believe these attitudes and images about themselves. Additionally, there is stigma and shame attached to being disabled that comes from a belief that ones disability is caused by black magic, by that person or his/her immediate family having done something wrong or by some ancestral sin. The weight of cultural attitudes and the deeper underlying stigma serves to keep people with disabilities disempowered. People with disabilities generally see themselves and are seen as helpless and as burdens to their families. Many are kept hidden and are not given opportunities to participate in community life. It is rare to see people with disabilities out and about.
My being in Kiribati was a complete surprise to I-Kiribati people. My participating and functioning in their world challenged some very deeply rooted ideas. Even if I hadn’t ended up working with a group of adults with disabilities, even if I hadn’t had the opportunity to speak about disability to government leaders, religious leaders and public health nurses, I allowed people to see a different approach to disability.
During my second year of Peace Corps service, I worked with Te Toa Matoa, the Kiribati Association of Youth and Adults with Disabilities. A visionary I-Kiribati woman with a disability and an Australian physiotherapist who was volunteering at the national hospital founded the group. The name Te Toa Matoa symbolizes a strong giant that has overcome both internal and external barriers. It is a powerful name that speaks to what group members would some day become. During the year I spent with them, I watched them as they tentatively began growing into their new name. It will take time, but they have laid a good foundation for change.
I worked with Te Toa Matoa on a variety of projects. Together we planned and hosted two annual National Disability Awareness Botakis (gathering or event). Top government, business and religious leaders attended the events. We were able to obtain media coverage from the national weekly newspaper, the national radio station and a video production company. Being the outspoken American, I was given the job of delivering speeches about the situation of disabled I-Kiribati people and what various sectors could do to effect change.
My friends were more comfortable simply demonstrating through song and traditional dance that disabled people belonged in Kiribati community. The emcee and the I-Kiribati group members that did give speeches played the pity card pretty heavily. This made me sad, but I also realized that it was a huge step for each of these people just to put themselves out in this very public arena – to say “we are part of you.”
My counterpart and I wrote a grant to the Australian High Commission for funds to receive training from the community theater group. Te Toa Matoa members learned basic skills in developing educational dramas and in writing songs that go with the storyline. Group members threw themselves into the project with a passion. I-Kiribati people love drama and song and it is an important means of communication. They created two plays. Initially both plays presented disability as a very sad thing. My counterpart and I worked with the group to push the attitudinal boundaries a bit, to introduce a slightly different more powerful, more positive twist to the story. They did so and began performing these plays all over Tarawa, the capital island. Audiences responded well. Again, just the fact of people with disabilities being public, performing, making people laugh, cry and take another look was a major accomplishment. I had to let go of needing the message to meet with my western disability rights-bearing philosophy.
http://www.miusa.org/ncde/stories/houston
contact us
Tel: (541) 343-1284 (Tel/TTY) Fax: (541) 343-6812
132 E. Broadway, Suite 343 Eugene, Oregon USA 97401
Mobility International USA
"Surprisingly, many of my new Peace Corps companions hadn’t interacted with a person with a disability in any significant way before. Some didn’t know what to make of me, how to interact with me, what to talk to me about. Some of my fellow trainees and our team of American and I-Kiribati trainers thought that they were going to have to help and take care of me. As we went along, we all realized that at times I would need an extra leg up into a flatbed or a hand for balance in stepping from one boat into another – but so did some of the older Volunteers. People came to realize that they didn’t need to talk with me differently or be careful with me – that my dreams, goals, hopes and fears resonated with theirs."
When people use the word “diversity,” usually the picture that comes to mind is a group or community consisting of women and men from diverse racial and ethnic backgrounds. Many widen the definition to include people from various income levels, differing religions, nationalities and sexual orientation.
This is good. Our world is made up of a seemingly infinite variety of people – most of our communities in the United States reflect at least a slice of this diversity. International exchange program administrators have been striving to have their programs reflect community and national diversity for many years. I want to challenge program coordinators, recruiters and potential participants alike to widen the scope of diversity even further. People with disabilities are part of every segment of the population. We belong in all kinds of international programs -- whether our disabilities be sensory, physical, mental health-related, cognitive or health-related.
I am a recently Returned Peace Corps Volunteer. I served for two years in the Republic of Kiribati, a central Pacific island nation. I have Cerebral Palsy. I was the only Peace Corps Volunteer (PCV) with a disability out of the total of 50 Volunteers in Kiribati at any one time – and in any recent memory of I-Kiribati Peace Corps staff. My being a PCV with a disability had a multi-level impact.
My disability affects my balance and my steadiness in writing and carrying cups, buckets and other containers filled with liquid. I walk with a unique gait that my arms get quite involved with. I am staunchly independent and am able to take care of my own needs, get where I need to go, walk, ride bicycles, climb on to crowded buses, boats, flatbed trucks and whatnot. I do just about everything a little slower than everyone else because it takes some extra effort for me to coordinate my movements. For me, this is just me, just my body – it is not particularly interesting. But for other PCVs, Peace Corps staff and I-Kiribati people – I was different. From the moment I walked into our staging meeting where my training group first met, to the time I boarded the plane to return to the States 26 months later, my unassigned role was to educate people about disability issues -- to widen the circle of diversity.
Surprisingly, many of my new Peace Corps companions hadn’t interacted with a person with a disability in any significant way before. Some didn’t know what to make of me, how to interact with me, what to talk to me about. Some of my fellow trainees and our team of American and I-Kiribati trainers thought that they were going to have to help and take care of me. As we went along, we all realized that at times I would need an extra leg up into a flatbed or a hand for balance in stepping from one boat into another – but so did some of the older Volunteers. People came to realize that they didn’t need to talk with me differently or be careful with me – that my dreams, goals, hopes and fears resonated with theirs. My experience and perspective in life as someone living with a disability added to their perspective and understanding of the breadth of human experience
At the beginning of our second week in Kiribati, our group of 25 trainees and 10 trainers loaded a boat for a rough and wet 33 hour boat trip to Abemama, our training island. Our trainers swore that the trip usually only took 12 hours. Our only consolation as most of us heaved and retched over the side of the boat was that we were on the Baan te Tangira – the Rock of LOVE! Upon arriving on Abemama, tired and grimy, we were met by the residents of Tabiang, the village where we would live and learn for the next ten weeks. We gathered together in the maneaba, a meeting shelter that is central to village life. There we were warmly welcomed with sweet smelling wreathes of flowers for our heads and moimotos – young husked coconuts with a small hole carved into the top so one can drink the coconut water. After awhile, each of us were introduced to our new family.
My host family was supremely kind to me. They tried to do everything for me. Remember my staunch independence? This desire on their part to take care of me became a point of cultural and personal conflict and adaptation until the day I finally left Kiribati at close of service (COS). During our ten weeks together, I was able to demonstrate to my family, and by extension the whole village (we were all a major topic of conversation!) that my disability did not mean that I was incapable of taking care of myself, and more importantly, of participating fully in community and family life.
As time went on, I learned more about the experience of people with disabilities in Kiribati and about cultural attitudes toward disability. I learned some of the key words that are used to talk about people with any type of disability – one of those words meant “sick” and the other implied that disabled people are to be pitied, that they and their lives are sad. Non-disabled and disabled people alike used these words. I had a very difficult time with this image for myself and for my new I-Kiribati friends who had disabilities. I bristled every time someone described me as being sick or said to me “Ko kawa.” (roughly translated “how pitiful”) as they would watch me walk, climb on a bus, haul water, wash my clothes or whatever. I would usually counter that image by saying that I wasn’t sick, that I was strong, happy and quite capable of living a full life.
I-Kiribati people with disabilities live with and believe these attitudes and images about themselves. Additionally, there is stigma and shame attached to being disabled that comes from a belief that ones disability is caused by black magic, by that person or his/her immediate family having done something wrong or by some ancestral sin. The weight of cultural attitudes and the deeper underlying stigma serves to keep people with disabilities disempowered. People with disabilities generally see themselves and are seen as helpless and as burdens to their families. Many are kept hidden and are not given opportunities to participate in community life. It is rare to see people with disabilities out and about.
My being in Kiribati was a complete surprise to I-Kiribati people. My participating and functioning in their world challenged some very deeply rooted ideas. Even if I hadn’t ended up working with a group of adults with disabilities, even if I hadn’t had the opportunity to speak about disability to government leaders, religious leaders and public health nurses, I allowed people to see a different approach to disability.
During my second year of Peace Corps service, I worked with Te Toa Matoa, the Kiribati Association of Youth and Adults with Disabilities. A visionary I-Kiribati woman with a disability and an Australian physiotherapist who was volunteering at the national hospital founded the group. The name Te Toa Matoa symbolizes a strong giant that has overcome both internal and external barriers. It is a powerful name that speaks to what group members would some day become. During the year I spent with them, I watched them as they tentatively began growing into their new name. It will take time, but they have laid a good foundation for change.
I worked with Te Toa Matoa on a variety of projects. Together we planned and hosted two annual National Disability Awareness Botakis (gathering or event). Top government, business and religious leaders attended the events. We were able to obtain media coverage from the national weekly newspaper, the national radio station and a video production company. Being the outspoken American, I was given the job of delivering speeches about the situation of disabled I-Kiribati people and what various sectors could do to effect change.
My friends were more comfortable simply demonstrating through song and traditional dance that disabled people belonged in Kiribati community. The emcee and the I-Kiribati group members that did give speeches played the pity card pretty heavily. This made me sad, but I also realized that it was a huge step for each of these people just to put themselves out in this very public arena – to say “we are part of you.”
My counterpart and I wrote a grant to the Australian High Commission for funds to receive training from the community theater group. Te Toa Matoa members learned basic skills in developing educational dramas and in writing songs that go with the storyline. Group members threw themselves into the project with a passion. I-Kiribati people love drama and song and it is an important means of communication. They created two plays. Initially both plays presented disability as a very sad thing. My counterpart and I worked with the group to push the attitudinal boundaries a bit, to introduce a slightly different more powerful, more positive twist to the story. They did so and began performing these plays all over Tarawa, the capital island. Audiences responded well. Again, just the fact of people with disabilities being public, performing, making people laugh, cry and take another look was a major accomplishment. I had to let go of needing the message to meet with my western disability rights-bearing philosophy.
http://www.miusa.org/ncde/stories/houston
contact us
Tel: (541) 343-1284 (Tel/TTY) Fax: (541) 343-6812
132 E. Broadway, Suite 343 Eugene, Oregon USA 97401
A Powerful Identity, a Vanishing Diagnosis
By CLAUDIA WALLIS
The New Times
Published: November 2, 2009
It is one of the most intriguing labels in psychiatry. Children with Asperger’s syndrome, a mild form of autism, are socially awkward and often physically clumsy, but many are verbal prodigies, speaking in complex sentences at early ages, reading newspapers fluently by age 5 or 6 and acquiring expertise in some preferred topic — stegosaurs, clipper ships, Interstate highways — that will astonish adults and bore their playmates to tears.
In recent years, this once obscure diagnosis, given to more than four times as many boys as girls, has become increasingly common.
Much of the growing prevalence of autism, which now affects about 1 percent of American children, according to federal data, can be attributed to Asperger’s and other mild forms of the disorder. And Asperger’s has exploded into popular culture through books and films depicting it as the realm of brilliant nerds and savantlike geniuses.
But no sooner has Asperger consciousness awakened than the disorder seems headed for psychiatric obsolescence. Though it became an official part of the medical lexicon only in 1994, the experts who are revising psychiatry’s diagnostic manual have proposed to eliminate it from the new edition, due out in 2012.
If these experts have their way, Asperger’s syndrome and another mild form of autism, pervasive developmental disorder not otherwise specified (P.D.D.-N.O.S. for short), will be folded into a single broad diagnosis, autism spectrum disorder — a category that encompasses autism’s entire range, or spectrum, from high-functioning to profoundly disabling.
“Nobody has been able to show consistent differences between what clinicians diagnose as Asperger’s syndrome and what they diagnose as mild autistic disorder,” said Catherine Lord, director of the Autism and Communication Disorders Centers at the University of Michigan, one of 13 members of a group evaluating autism and other neurodevelopmental disorders for the manual.
“Asperger’s means a lot of different things to different people,” Dr. Lord said. “It’s confusing and not terribly useful.”
Taking Asperger’s out of the manual, known as D.S.M.-V for the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, does not mean the term will disappear. “We don’t want to say that no one can ever use this word,” Dr. Lord said, adding: “It’s not an evidence-based term. It may be something people would like to use to describe how they see themselves fitting into the spectrum.”
But the change, if approved by the manual’s editors and consultants, is likely to be controversial. The Asperger’s diagnosis is used by health insurers, researchers, state agencies and schools — not to mention people with the disorder, many of whom proudly call themselves Aspies.
Some experts worry that the loss of the label will inhibit mildly affected people from being assessed for autism. “The general public has either a neutral or fairly positive view of the term Asperger’s syndrome,” said Tony Attwood, a psychologist based in Australia who wrote “The Complete Guide to Asperger’s Syndrome” (Jessica Kingsley Publishers, 2006). But if people are told they should be evaluated for autism, he went on, “they will say: ‘No, no, no. I can talk. I have a friend. What a ridiculous suggestion!’ So we will miss the opportunity to assess people.”
The proposed changes to the autism category are part of a bigger overhaul that will largely replace the old “you have it or you don’t” model of mental illness with a more modern view — that psychiatric disorders should be seen as a continuum, with many degrees of severity. The goal is to develop “severity measures within each diagnosis,” said Dr. Darrel A. Regier, research director at the American Psychiatric Association and vice chairman of the diagnostic manual’s task force.
Another broad change is to better recognize that psychiatric patients often have many health problems affecting mind and body and that clinicians need to evaluate and treat the whole patient.
Historically, Dr. Regier said, the diagnostic manual was used to sort hospital patients based on what was judged to be their most serious problem. A patient with a primary diagnosis of major depression would not be evaluated for anxiety, for example, even though the two disorders often go hand in hand.
Similarly, a child with the autism label could not also have a diagnosis of attention deficit hyperactivity disorder, because attention problems are considered secondary to the autism. Thus, they might go untreated, or the treatment would not be covered by insurance.
The new edition, by contrast, will list not only the core issues that characterize a given diagnosis but also an array of other health problems that commonly accompany the disorder. For autism, this would most likely include anxiety, attention disorders, gastrointestinal problems, seizures and sensory differences like extreme sensitivity to noise.
Parents and advocates have been clamoring for an approach that addresses the multiple health problems that plague many children with autism. “Our kids will do much better if medical conditions like gut issues or allergies are treated,” said Lee Grossman, president of the Autism Society of America, a leading advocacy group.
The new diagnostic approach addresses another source of confusion: the current labels may change over time. “A child can look like they have P.D.D.-N.O.S., then Asperger’s, then back to autism,” Dr. Lord said. The inconsistent use of these labels has been a problem for researchers recruiting subjects for studies of autism spectrum disorder.
And it can be a problem for people seeking help. In some states, California and Texas, for example, people with traditional autistic disorder qualify for state services, while those with Asperger’s and pervasive developmental disorder do not.
http://www.nytimes.com/2009/11/03/health/03asperger.html?_r=1
To read the rest of the article click here http://www.nytimes.com/2009/11/03/health/03asperger.html?pagewanted=2&_r=1
http://www.nytimes.com/
The New Times
Published: November 2, 2009
It is one of the most intriguing labels in psychiatry. Children with Asperger’s syndrome, a mild form of autism, are socially awkward and often physically clumsy, but many are verbal prodigies, speaking in complex sentences at early ages, reading newspapers fluently by age 5 or 6 and acquiring expertise in some preferred topic — stegosaurs, clipper ships, Interstate highways — that will astonish adults and bore their playmates to tears.
In recent years, this once obscure diagnosis, given to more than four times as many boys as girls, has become increasingly common.
Much of the growing prevalence of autism, which now affects about 1 percent of American children, according to federal data, can be attributed to Asperger’s and other mild forms of the disorder. And Asperger’s has exploded into popular culture through books and films depicting it as the realm of brilliant nerds and savantlike geniuses.
But no sooner has Asperger consciousness awakened than the disorder seems headed for psychiatric obsolescence. Though it became an official part of the medical lexicon only in 1994, the experts who are revising psychiatry’s diagnostic manual have proposed to eliminate it from the new edition, due out in 2012.
If these experts have their way, Asperger’s syndrome and another mild form of autism, pervasive developmental disorder not otherwise specified (P.D.D.-N.O.S. for short), will be folded into a single broad diagnosis, autism spectrum disorder — a category that encompasses autism’s entire range, or spectrum, from high-functioning to profoundly disabling.
“Nobody has been able to show consistent differences between what clinicians diagnose as Asperger’s syndrome and what they diagnose as mild autistic disorder,” said Catherine Lord, director of the Autism and Communication Disorders Centers at the University of Michigan, one of 13 members of a group evaluating autism and other neurodevelopmental disorders for the manual.
“Asperger’s means a lot of different things to different people,” Dr. Lord said. “It’s confusing and not terribly useful.”
Taking Asperger’s out of the manual, known as D.S.M.-V for the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, does not mean the term will disappear. “We don’t want to say that no one can ever use this word,” Dr. Lord said, adding: “It’s not an evidence-based term. It may be something people would like to use to describe how they see themselves fitting into the spectrum.”
But the change, if approved by the manual’s editors and consultants, is likely to be controversial. The Asperger’s diagnosis is used by health insurers, researchers, state agencies and schools — not to mention people with the disorder, many of whom proudly call themselves Aspies.
Some experts worry that the loss of the label will inhibit mildly affected people from being assessed for autism. “The general public has either a neutral or fairly positive view of the term Asperger’s syndrome,” said Tony Attwood, a psychologist based in Australia who wrote “The Complete Guide to Asperger’s Syndrome” (Jessica Kingsley Publishers, 2006). But if people are told they should be evaluated for autism, he went on, “they will say: ‘No, no, no. I can talk. I have a friend. What a ridiculous suggestion!’ So we will miss the opportunity to assess people.”
The proposed changes to the autism category are part of a bigger overhaul that will largely replace the old “you have it or you don’t” model of mental illness with a more modern view — that psychiatric disorders should be seen as a continuum, with many degrees of severity. The goal is to develop “severity measures within each diagnosis,” said Dr. Darrel A. Regier, research director at the American Psychiatric Association and vice chairman of the diagnostic manual’s task force.
Another broad change is to better recognize that psychiatric patients often have many health problems affecting mind and body and that clinicians need to evaluate and treat the whole patient.
Historically, Dr. Regier said, the diagnostic manual was used to sort hospital patients based on what was judged to be their most serious problem. A patient with a primary diagnosis of major depression would not be evaluated for anxiety, for example, even though the two disorders often go hand in hand.
Similarly, a child with the autism label could not also have a diagnosis of attention deficit hyperactivity disorder, because attention problems are considered secondary to the autism. Thus, they might go untreated, or the treatment would not be covered by insurance.
The new edition, by contrast, will list not only the core issues that characterize a given diagnosis but also an array of other health problems that commonly accompany the disorder. For autism, this would most likely include anxiety, attention disorders, gastrointestinal problems, seizures and sensory differences like extreme sensitivity to noise.
Parents and advocates have been clamoring for an approach that addresses the multiple health problems that plague many children with autism. “Our kids will do much better if medical conditions like gut issues or allergies are treated,” said Lee Grossman, president of the Autism Society of America, a leading advocacy group.
The new diagnostic approach addresses another source of confusion: the current labels may change over time. “A child can look like they have P.D.D.-N.O.S., then Asperger’s, then back to autism,” Dr. Lord said. The inconsistent use of these labels has been a problem for researchers recruiting subjects for studies of autism spectrum disorder.
And it can be a problem for people seeking help. In some states, California and Texas, for example, people with traditional autistic disorder qualify for state services, while those with Asperger’s and pervasive developmental disorder do not.
http://www.nytimes.com/2009/11/03/health/03asperger.html?_r=1
To read the rest of the article click here http://www.nytimes.com/2009/11/03/health/03asperger.html?pagewanted=2&_r=1
http://www.nytimes.com/
Subscribe to:
Posts (Atom)