The White House Boys

I've done alot of research into how we treated individuals considered "different" and after watching the videos of Willowbrook in NY, reading about the Walter E. Fernald State School in MA - this story made me understand why I would never vote for Mitt Romney, among others ---- THIS story kills me. I don't know if it is because I live in Florida, or if it is the sheer brutality of it, but I AM glad that Charlie Crist has requested an investigation. THIS IS A MUST SEE.........the only way to change the course of our future, is to learn from our past

A Day In The Park With Celebrating Abilities Inc

A Day In The Park with Celebrating Abilities Inc.

Please join us on Saturday, December 20, 2008
at Lakes Regional Park
Shelter A-1

Celebrate the abilities of all of our children
and share the Reason for the Season.

Please bring a potluck dish
and an inexpensive, wrapped gift for your children.
We are hoping for a visit from a very special person!

To RSVP:
Please contact Jacqui Hawkins
at 471-7334
or
jacquih1126@gmail.com

A Day in the Park with Celebrating Abilities Inc

A Day in the Park
with
Celebrating Abilities Inc.

A gathering for families with children of all abilities


Sunday, October 12, 2008
@ 12pm

at the playground/picnic area

Lakes Regional Park
7330 Gladiolus Dr, Fort Myers, FL 33908

Please RSVP and let us know what you can contribute

Any questions?
Contact:
Jacqui - 471-7334
jacquih1126@gmail.com

The "R" Word - What it really stands for!

PSA - The R Word

Hello all,

The Autistic Self-Advocacy Network (ASAN) is pleased to announce the release of a new Public Service Announcement
regarding the R-word and why it is such hateful speech. This commercial was produced by Christschool, a talented video
maker who is both an autistic self-advocate and a father of an autistic son, and features a professional voice actor.
We are working on getting this video out to as many people as possible, and would love it if other members of the
coalition would do the same by posting it on their websites, encouraging members to e-mail it to others, etc. The video
can be found here:

http://www.youtube.com/watch?v=JzgQ3LVNhps

We are hoping for the video to get so many views that when people enter in "Tropic Thunder" as a search, this video
comes up as one of the top results. Thank you.

Sarah Pripas
The Autistic Self-Advocacy Network

Autism Speaks Announces Launch of New Autism Social Networking Site

Autism Speaks announced the launch of its new autism social networking site which will provide a new venue for members of the autism community to share insights, opinions and information. Members are able to create their own personalized profile, start a blog, join a number of new forums with a range of autism-related topics, and post photos and videos. They can also join a variety of user groups, such as groups for individuals with autism, parents, grandparents, educators and others. Read more and visit the new autism social networking site here:

http://www.autismspeaks.org/press/ning_social_network.php

http://autismspeaksnetwork.ning.com/

Walk Now For Autism Kickoff Luncheons

Walk Now for Autism Kickoff Luncheons

The Southwest Florida Walk Now for Autism kickoff luncheons will be held on
Saturday, September 6 from 11:30am – 1:30pm at The Three Oaks Banquet
Center in Estero and Saturday, September 13 from noon – 2pm at Carrabba's
in Port Charlotte. Both events are free, open to the public and include
lunch provided by Carrabba's.

Attendees will learn about the Southwest Florida Walk Now for Autism, how
to create a team, and how the money raised helps Autism Speaks with their
mission of increasing awareness and funding research, advocacy and family
services.

The Southwest Florida Walk Now for Autism will be held on Saturday,
November 8 at Estero Community Park, 9200 Corkscrew Palms Boulevard,
Estero. Attendees from Sarasota to Naples are expected to participate.
Last year's walk drew over 2,500 participants and raised over $235,000.

Today, 1 in 150 children is diagnosed with autism (1 in 94 boys) and a new
case is diagnosed almost every 20 minutes. Autism is the fastest-growing
serious developmental disability in the United States. More children will
be diagnosed with autism this year than with AIDS, diabetes & cancer
combined.

To rsvp for a luncheon or to register for the walk, go to
www.walknowforautism.org/southwestflorida and click on "register" and
"attend a kickoff" or call (866) 441-6227.



About Autism
Autism is a complex brain disorder that inhibits a person's ability to
communicate and develop social relationships, and is often accompanied by
extreme behavioral challenges. Autism spectrum disorders are diagnosed in
one in 150 children in the United States, affecting four times as many boys
as girls. The diagnosis of autism has increased tenfold in the last decade.
The Centers for Disease Control and Prevention have called autism a
national public health crisis whose cause and cure remain unknown.

About Autism Speaks
Autism Speaks is the world's largest autism advocacy organization,
dedicated to increasing awareness of autism spectrum disorders, to funding
research into the causes, prevention and treatments for autism, and to
advocating for the needs of individuals with autism and their families. It
was founded in February 2005 by Suzanne and Bob Wright, the grandparents of
a child with autism. For more information about autism and Autism Speaks,
please visit www.autismspeaks.org

DD/HCBS Waiver Handbook

RE: DD/HCBS Waiver Handbook

The handbooks for Medicaid are now on the EDS website. EDS is the new
Medicaid fiscal agent and can be accessed at the following website:
[url]
http://www.mymedicaid-florida.com/[/url]

Once you get there click on Public Information for Providers, then on
Provider support, and then on Provider Handbooks. All of the handbooks for
Medicaid are listed there. If you are looking for our DD waiver then click
on Developmental Services Waiver. Then you are there!


Thanks,
Beverly C. Benkhatar
Agency for Persons with Disabilities
Area 8
Street Address- 2295 Victoria Avenue
Fort Myers, FL 33901
Mailing Address: Post Office Box 60085
Fort Myers, FL 33906
PHONE: 239. 338.1362
FAX: 239. 338.1359
E-mail address: [url]beverly_benkhatar@apd.state.fl.us[/url]
Toll Free: 1-866-APD-CARES or 1-866-273-2273
[url]http://apd.myflorida.com[/url]

Judge Upholds Rule On Disability Waivers

Judge Upholds Rule On Disability Waivers


TALLAHASSEE, FL---A judge has issued a final order in favor of new rules
concerning the delivery of services to Floridians with developmental
disabilities. Administrative Law Judge Eleanor Hunter ordered today that
the rules established by the state Agency for Persons with Disabilities
(APD) are "not invalid exercises of delegated legislative authority."

In 2007, the Florida Legislature required APD to establish four tiers for
the state's Medicaid developmental disability waivers. The tiers are based
on levels of need. Three of those levels will have annual caps on
spending. The Advocacy Center for Persons with Disabilities had brought a
lawsuit before the Division of Administrative Hearings to challenge APD's
rules for implementation of the tiers. Today's ruling permits APD to
proceed with implementation of the Legislature's requirements.

APD Interim Director Jim DeBeaugrine said, "Our agency works hard to comply
with the law, and today's ruling supports that. Although most of our
customers will not be affected by the tiers, we are sensitive to the fact
that our customers have anxiety about possible service reductions. We are
just as concerned as they are, and we are fully committed to assisting them
through this transition. This is a somber task for us to perform, and we
pledge to carry it out with fairness and caring for the people we serve."

APD will send letters to all of its customers notifying them of the
official start date for the waiver tiers, which has not yet been
determined. Customers who must reduce their services will be able to make
choices in order to do so. APD will provide guidance for readjusting
services and identifying community and nongovernmental supports.

In creating the four "waiver tiers" for individuals who are receiving
waiver services, the Legislature imposed annual limits on how much the
state can spend for people in three of the waivers. The four tiers and
their annual financial limits are:

Tier One – No cap
Tier Two – Cap of $55,000
Tier Three – Cap of $35,000
Tier Four – Cap of $14,792

In addition, the Legislature established criteria for each of the four
waiver tiers. The criteria cover the individual’s needed level of service,
along with other important characteristics and the person’s current living
situation. APD is currently determining which waiver tier is appropriate
for individuals receiving Medicaid Waiver services from APD based on how
their needs and characteristics match the established criteria. When the
waiver tiers are implemented, each person will be assigned to, and enrolled
in the tier that has been determined to be appropriate for them.

The services of most individuals will not be affected by their tier
assignment. The state, however, may not be able to pay as much for
services for some people, therefore requiring service reductions. The new
waiver system does allow individuals who have a significant change in
circumstance or condition that impacts their health, safety, or welfare to
migrate from one waiver to another.

APD currently serves about 35,000 Floridians with developmental
disabilities of mental retardation, autism, cerebral palsy, spina bifida,
and Prader-Willi syndrome. For more information on the agency, call
1-866-APD-CARES or visit www.apdcares.org

Nestlé Very Best in Youth Program

Nestlé Very Best in Youth Program

Nestlé is passionate about young people who do extraordinary things. In their honor, Nestlé has launched a national search for the Very Best In Youth -- 13 to 18 year olds who excel academically and work hard to make their community a better place.

The young people selected for this prestigious award will be recognized with $1,000 donation to the charity of their choice, an all-expense-paid trip to Los Angeles for the red carpet treatment at a special awards ceremony plus other fabulous prizes.

For more information, visit:
http://www.nestle-verybestinyouth.com/OnlineApplication/NestleApplication.pdf

Schools on a shoestring: Specialized programs cut to the core

http://www.orlandosentinel.com/news/education/orl-shoestring1108aug11,0,6000838.story


Erika Hobbs | Sentinel Staff Writer
August 11, 2008

Students across Central Florida will learn a brutal lesson in economics when the new school year starts next week.

For years, school leaders juggled their budgets to prevent the state's chronic money woes from creeping into the classroom. But they're out of options now and scaling back popular programs for gifted students and troubled kids.

Drastic state budget cuts are threatening Orange County's esteemed Advanced Placement program, which serves bright, college-bound students. Officials throughout Florida's 67 districts are scrambling to make do with two-thirds of what they had planned -- by cutting teachers and classes or by charging students to use the expensive textbooks.

"Frankly, it's a big hit," said Bill Gordon, principal of Winter Park High School, which stands to lose as much as $500,000 in AP funding.

Orange, Volusia and others also are trimming special programs such as AVID (Advancement Via Individual Determination), which gives struggling students a chance to go to college. An alternative program called CEP (Community Education Partners), which helped youngsters in Orange recover credits and graduate on time, already is gone.

Core classes such as math, reading and science have not been touched. Most districts have retained music and arts classes, as well. But chipping away at the supplemental classes, officials say, is the first indication that budget cuts are eroding Florida's public education.

"Kids will not have the same quality of education," said Sam Momary, principal of Hagerty High in Oviedo.

Yet he, like other administrators, says that few good options are available as they try to ease the impact of budget cuts. Orange officials, for example, angered hundreds of parents and students when they changed schedules so that middle schools will start earlier and high schools later to save on busing costs. But that wasn't enough to make up for the $94 million that has been lost in state funding.


College-track classes could become pay-to-play

Students fear that without AP classes, they won't get into top-tier schools. Parents worry that without special programs, their at-risk children will founder in the system.

Boone High School junior Megan Ellis said getting into Florida State University is so important that she would do anything to pay the hundreds of dollars her textbooks and tests would cost to keep her competitive edge.

"I get so much out of those classes," she said. "I'd rather pay than have them cut completely."

Because AP classes help college freshmen skip courses, a dearth of AP offerings in high school could mean students could pay more in tuition later on, said Alvin Wang, dean of the Burnett Honors College at the University of Central Florida. High-school students also may not be as prepared for college-level work, he added.

Or they just might be bored.

"I'd be so upset not to have that opportunity," said Megan, who so relishes the challenge that she has scheduled three of the intense courses this year.


At-risk students could lose important help

But kids who struggle in a traditional setting have far more to lose, said Beth Wonson, a member of the board of the directors at the volunteer-based National Alternative Education Association. Without the proper support, she said, students will end up needing more services or drop out of high school.

"The long-term ramifications are huge," she said.

Tim White of Orlando agrees. Without the Community Education Partners program, his son might have fallen through the cracks, White said.

CEP, a national program, was a two-campus operation in Orange County that cost the district $12 million a year. It served as many as 1,300 middle- and high-school students with academic and behavioral problems. Most of its students were too old for their grade levels and needed help making up credits or improving FCAT scores.

White said CEP pulled his son, Austin, out of his shell and put him on the right academic track for his freshman year this fall.

"I loved everything about it," White said. " . . . It was a controlled environment -- you couldn't go down the hallway without someone knowing."

School officials across the area say they're determined to protect students from the budget fallout. Winter Park's Gordon, for example, said he so far has managed to keep this year's AP program intact -- it is next year that worries him.

Evelyn Chandler, director of Orange's school-choice program, said the district is developing a program to absorb CEP's students.

But that's little comfort to parents such as White.

"If something works," he said, "don't mess with it."




Alia Malik of the Sentinel staff contributed to this report. Erika Hobbs can be reached at ehobbs@orlandosentinel.com or 407-420-6226.

Wrightslaw Training in Spring Hill, FL

If anyone is interested, there is a 2 day boot camp in January. If you register by 9/30/08, the cost is $100 and includes the 2 free books. After 9/30/08, the cost goes up to $125. Again, this is an awesome workshop.......Pete Wright is amazing and it doesn't matter where you are in your level of advocacy and understanding of IDEA. There is a special hotel room rate at Quality Inn in Spring Hill, the cost for the conference is $90 a room, but you must specify that you are there for the Wrightslaw conference. I would suggest getting a few people together to split the costs for gas and hotel. They do have quizzes that you take and you'll quickly realize how much you don't know. I passed my final exam with only 4 wrong, Cyndi with only 1 wrong!!!


http://www.wrightslaw.com/speak/09.01.fl.htm

Tropic Thunder Boycott??

http://www.cinematical.com/2008/08/10/tropic-thunder-boycott-planned/

by Peter Martin Aug 10th 2008 // 6:32PM

Filed under: Comedy, Celebrities and Controversy, Dreamworks, Movie Marketing

"Not only might it happen, it will happen." Timothy P. Shriver, chairman of the Special Olympics, told The New York Times that he and representatives of his group and others will picket the opening of Ben Stiller's Tropic Thunder in Los Angeles on Wednesday. Reportedly, more than a dozen disabilities groups, including the National Down Syndrome Congress and the American Association of People with Disabilities, made plans over the weekend to start protesting on Monday.

Dreamworks already pulled down a promotional web site that was considered offensive a few days ago, as William Goss reported, and has altered some television advertising, but that's as far as they're going. A spokesman told the NYT : "No changes or cuts to the film will be made." Both Stiller and Dreamworks exec Stacy Snider insist they are not targeting the disabled, but the foolish ambition of certain actors. Shriver told the NYT he's asking members of Congress "for a resolution condemning what he called 'hate speech' in the movie." The film's repeated use of the term "retard" is "a particular sore point."

For personal reasons, I have a strong distaste for calling someone who's intellectually disabled a "retard" -- I think it's hateful and insensitive -- but I don't feel that a Congressional resolution or a boycot will do anything more than anger and harden the hearts of the very people who might rethink their vocabulary. To be fair, I haven't seen the movie, but Shriver and other protestors have.

If it happens, will you support the boycott? Or do you think this is another case of "political correctness" gone too far?

CATS Autism Center

CATS Autism Center is going to run two new group programs this fall. The first will be a Social Skills Program for higher functioning children. The second will be a Play Skills Program for younger children. If you woulld help get the word out on these programs, we would greatly appreciate it.



Anyone wishing information can contact us at (239) 985-2287 or at catsautismcenter@gmail.com

Michael Savage on Autism

From Media Matters:


Savage on autism: "A fraud, a racket. ... In 99 percent of the cases, it's a brat who hasn't been told to cut the act out"
Summary: On his nationally syndicated radio show, Michael Savage claimed that autism is "[a] fraud, a racket. ... I'll tell you what autism is. In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is. What do you mean they scream and they're silent? They don't have a father around to tell them, 'Don't act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don't sit there crying and screaming, idiot.' "



On the July 16 edition of his nationally syndicated radio show, Michael Savage claimed that autism is "[a] fraud, a racket." Savage went on to say, "I'll tell you what autism is. In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is. What do you mean they scream and they're silent? They don't have a father around to tell them, 'Don't act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don't sit there crying and screaming, idiot.' " Savage concluded, "[I]f I behaved like a fool, my father called me a fool. And he said to me, 'Don't behave like a fool.' The worst thing he said -- 'Don't behave like a fool. Don't be anybody's dummy. Don't sound like an idiot. Don't act like a girl. Don't cry.' That's what I was raised with. That's what you should raise your children with. Stop with the sensitivity training. You're turning your son into a girl, and you're turning your nation into a nation of losers and beaten men. That's why we have the politicians we have."

Savage also stated: "[W]hy was there an asthma epidemic amongst minority children? Because I'll tell you why: The children got extra welfare if they were disabled, and they got extra help in school. It was a money racket. Everyone went in and was told [fake cough], 'When the nurse looks at you, you go [fake cough], "I don't know, the dust got me." ' See, everyone had asthma from the minority community."

Talk Radio Network, which syndicates The Savage Nation, claims that Savage is heard on more than 350 radio stations. The Savage Nation reaches at least 8.25 million listeners each week, according to Talkers Magazine, making it one of the most listened-to talk radio shows in the nation, behind only The Rush Limbaugh Show and The Sean Hannity Show.

From the July 16 edition of Talk Radio Network's The Savage Nation:

SAVAGE: Now, you want me to tell you my opinion on autism, since I'm not talking about autism? A fraud, a racket. For a long while, we were hearing that every minority child had asthma. Why did they sudden -- why was there an asthma epidemic amongst minority children? Because I'll tell you why: The children got extra welfare if they were disabled, and they got extra help in school. It was a money racket. Everyone went in and was told [fake cough], "When the nurse looks at you, you go [fake cough], 'I don't know, the dust got me.' " See, everyone had asthma from the minority community. That was number one.

Now, the illness du jour is autism. You know what autism is? I'll tell you what autism is. In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is.

What do you mean they scream and they're silent? They don't have a father around to tell them, "Don't act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don't sit there crying and screaming, idiot."

Autism -- everybody has an illness. If I behaved like a fool, my father called me a fool. And he said to me, "Don't behave like a fool." The worst thing he said -- "Don't behave like a fool. Don't be anybody's dummy. Don't sound like an idiot. Don't act like a girl. Don't cry." That's what I was raised with. That's what you should raise your children with. Stop with the sensitivity training. You're turning your son into a girl, and you're turning your nation into a nation of losers and beaten men. That's why we have the politicians we have.

—Z.A.

Zachary Aronow is an intern at Media Matters for America.


To Send Your Comments to Michael Savage:Contact information:

Michael Savage
michaelsavage@paulreveresociety.com

Talk Radio Network
P.O. Box 3755
Central Point, Oregon 97502
Phone: 541-664-8827
Fax: 541-664-6250


The Savage Nation
The Paul Revere Society
150 Shoreline Hwy, Bldge E
Mill Valley, CA 94941
Fax: 415-339-9383

What Will Matter??

Ready or not, some day it will all come to an end.
There will be no more sunrises, no minutes, hours, or days.
All the things you collected, whether treasured or forgotten, will pass to someone else.
Your wealth, fame, and temporal power will shrivel to irrelevance.
It will not matter what you owned or what you were owed.
Your grudges, resentments, frustrations, and jealousies will finally disappear.
So too your hopes, ambitions, plans, and to-do lists will expire.
The wins and losses that once seemed so important will fade away.
It won't matter where you came from or what side of the tracks you lived on at the end.
It won't matter whether you were beautiful or brilliant.
Even your gender and skin color will be irrelevant.
So what will matter? How will the value of your days be measured?
What will matter is not what you bought, but what you built. Not what you got, but what you gave.
What will matter is not your success, but your significance.
What will matter is not what you learned, but what you taught.
What will matter is every act of integrity, compassion, courage, or sacrifice that enriched, empowered, or encouraged others to emulate your example.
What will matter is not your competence, but your character.
What will matter is not how many people you knew, but how many will feel a lasting loss when you're gone.
What will matter is not your memories, but the memories that live in those who loved you.
What will matter is how long you will be remembered, by whom, and for what.
Living a life that matters doesn't happen by accident.
It's not a matter of circumstance but of choice.
Choose to live a life that matters.



http://charactercounts.org/michael/2008/07/what_will_matter_5741.html

In response to the recent legislation "Disability and Awareness Instruction"

I have been following the recent legislation "Disability and Awareness Instruction" (1003.4205, Florida Statutes) as it was signed into law and became effective July 1, 2008. I'm happy that the state of Florida felt that this was something that needed to be taught to our children, it is so important. And to those that fought tirelessly to make this a law, Thank You. As a mother of a child with what you would consider "profound" disabilities and as an advocate that has worked in the "disability" profession for all of my adult life, until moving to Florida. I've worked in several areas, including schools specializing in special education, group homes, and with adults with developmental disabilities, to help them integrate into the community. I was an aide, lead program assistant, and a supervisor. I have many years experience and have come to learn that in the end, people with disabilities are the largest minority population and the only one that any one of us can become a part of. I've studied the "history" and for years I believed that it began at Willowbrook. Obviously, that was not the case.

I'm concerned about the curriculum. It is my understanding that the districts are free to interpret the history and structure the curriculum for themselves. My concern is that there are several districts in this state that are considered very "disability friendly" but regrettably most are not, including my own. If the GOALS of this legislation are to include "better treatment of individuals with disabilities in society (especially youth in school) and increased attention to preventing the bullying or harassment of students with disabilities; (2) encouragement to individuals with disabilities to develop self-esteem, resulting in more individuals with disabilities gaining pride, obtaining postsecondary education, entering the workforce, and contributing to their communities; and, (3) reaffirmation of commitment to the full inclusion of and equal opportunity for all individuals with disabilities" in the classrooms across the state, in grades K-12, I can tell you today that MINE is in violation and so is Florida Department of Education. You see, the terminology used in our school system to refer to children with disabilities in the school system are antiquated and demeaning. Several states have enacted legislation to stop using the words "retarded" and that is to be commended. But here in the state of Florida, we are still referring to these children as: "trainable", "educable", and "profound". This terminology starts the children on a course within our school system that will forever hold them to the standard of their "label" and not count them as individuals. Despite IDEIA's intent that all children receive an "individualized" education. For my child, the more you do for him, the less he'll do for himself and if you expect that he won't, he doesn't. My child is almost 15 years old and I'm always told "he's not ready for that", that he is functioning on a "pre-readiness" level. Well, if you aren't exposing him to it, how will he get there?

The terminology isn't the only problem, one other major issue is that children with disabilities are shuffled into ESE classrooms in the back of the school, separate from the rest of the population, mostly "for their own safety" or for "convenience". This is probably one of the worst ways to help individuals with disabilities to develop self esteem and to expect that they'll get "better treatment" in society. If our children in our schools are learning the terminology used by the Florida Department of Education and our local school districts and they are seeing the children with disabilities kept separated and not fully included in our school system, when they see kids with disabilities shuttled to schools miles away from home, despite there being a school down the road, because of their disability, what exactly are we teaching our children? Do as I say and not as I do??? Wrong! In order to make this LAW effective, we must START by taking simple steps to do away with how we are treating children with disabilities in this state.

I would recommend that each of you read the book "Raymond's Room", written by Dale DiLeo, a Florida resident, living in St. Augustine. His website is: http://www.raymondsroom.com/
Please for the sake of our children, ALL our children reconsider how WE treat those with disabilities and not just what we want our children to learn. Thank you. Please feel free to contact me at any time.

--
Jacqui Hawkins, President
Celebrating Abilities Inc
4309 SW 19th Avenue
Cape Coral, FL 33914
239-471-7334
www.celebratingabilitiesinc.org
http://celebratingabilities.blogspot.com/
http://thelifeandtimesofastressedoutmom.blogspot.com/

Southwest Florida Walk Now for Autism Events and News

Southwest Florida Walk Now for Autism
Saturday, November 8, 2008
Estero Community Park, Estero, FL

Sign up to walk!
Registration is now open for the 2008 Southwest Florida Walk Now for Autism! We have 37 teams signed up already and over $11,000 in donations! Invite your friends, family, and coworkers to join your team, register as an individual, or start their own Walk Now for Autism team! It is easy- just click the link above and select the "Register" tab to get started. Once you have registered, you will receive a "Walker Welcome Packet" in the mail that will include materials and instructions to begin fundraising. Please feel free to call 866-441-6227 for support with the registration process.


Supporter Spotlight
Pam Cabrera & Tracey Sain
You could not have missed the Summit Church volunteers and walkers at last year's walk. Summit had over 400 participants at our walk and they raised nearly $30,000. Their participation was led by two energetic and enthusiastic women, Tracey Sain and Pam Cabrera. Tracey and Pam are both mothers of two. Pam's son Max, was recently diagnosed with autism. Pam and Tracey are our Faith-Based Outreach Chairs this year.

Pam and Tracey are contacting local churches and faith-based organizations to encourage their participation in our walk and to tell them about some upcoming free training to educate church volunteers about working with children with disabilities. They are also providing information to churches about how to include and support families of children with disabilities. If you would like your church or organization to be contacted, or if you would like more information, please contact us.


Upcoming Events


Summit Golf Tournament to Benefit Autism Speaks – August 23 – Old Corkscrew Golf Club. Call or email us for more information.

Southwest Florida Walk Now for Autism Kickoffs – Lee and Collier Counties – September 6, Charlotte County – September 13

Autism Speaks Night at the Everblades October 18
We have a great night planned that includes the Autism Speaks logo on the player jerseys and a jersey auction benefiting Autism Speaks at the end of the game. Mark your calendars and stay tuned for more details.


July Committee Meeting
Join us for our next committee meeting on Wednesday, July 16th from 6:30 - 8pm at Courtyard by Marriott I-75 and Gulf Coast Town Center 10050 Gulf Center Drive Fort Myers, FL 339913 239-332-4747. If you can't join us in person, you can call in via our conference line. For more information contact swflorida@autismspeaks.org or call (866) 441-6227.


Event Recaps

· Autism Speaks Night at Miracle Baseball. Thanks to all who joined us for a fun night at the Miracle on June 27. Thanks to the Miracle for the player meet and greet and all of the announcements and VIP treatment throughout the game.

· Dinosaur Playground "A Playdate for Autism!" On Saturday, June 28 Dinosaur Playground held a fun, family event that benefitted Autism Speaks and Revolution Autism. Thanks to Jessica and Ray for all their hard work and support. For a story and photos of the event go to: http://www.naplesnews.com/news/2008/jun/28/fundraiser-autistic-children-brings-families-toget/

· Beef O'Brady's Dining Nights to Benefit Autism Speaks. Thanks to all who supported our Beef O'Brady's nights in June! We are waiting for a total, but expecting over $1,500 in donations from the event. We appreciate everyone at Beef O'Brady's and their support of our families and Autism Speaks.

Sponsorship deadline is nearing

We have already received commitments from many local businesses that will support our 2008 walk. Do you have a business or know someone that is interested in getting exposure at our event? We expect over 3,000 attendees this year and have multi-media support from local newspapers, magazines, television and radio stations. If you are interested in finding out more about sponsorship opportunities, please contact Krista Rosado at 866-441-6227 or swflorida@autismspeaks.org.


Volunteer Opportunities
Open Volunteer Position: Local Science Ambassador
Local Science Ambassadors play an integral part in disseminating information to a wider audience by communicating Autism Speaks’ Science Mission to the general public:

Roles and Responsibilities:

Communicate AS science clinical programs, research resources, grants & initiatives effectively and passionately without personal bias or professional agenda.

Ensure that Autism Speaks Science programs are represented at local walks, conferences, and other events.

Stay up to date on Autism Speaks science news

Review the AS website for the latest science updates bimonthly

Requirements:

* Successful completion of Science Ambassador training provided by Autism Speaks
* Review the AS website twice a month for the latest science updates
* Subscribe to and review e-Speaks for latest science updates
* Must have access to internet
* Able to carry up to 40 pounds of materials

Please contact Krista Rosado at 866-441-6227 or krosado@autismspeaks.org for additional information.


Walk Day Volunteers Needed

Interested in joining our committee or volunteering for our walk? If you have even a few hours, you can make a difference. Please contact Krista Rosado at 866-441-6227 or swflorida@autismspeaks.org.

Thank you for your support!

Sincerely,

Dawn Itzkowitz and Elly Hagen Memoli
Southwest Florida Walk Now for Autism Co-Chairs

David Militello - America's Got Talent 2008

Boy with Autism wins the hearts of America on America's Got Talent!

Emergency Preparedness

Emergency Preparedness



Are You Prepared for an Emergency? In Florida, during hurricane season we hear this question repeatedly, but how many of us are really prepared? What about a fire escape plan from your home? Experts agree that disaster plans can save lives. Consider the following list of ideas when preparing an emergency plan for a person with a disability. It's a good idea to share the plan with a designated support team to assist you in a real emergency:





• Each member of your household needs enough water, food, and medicine to last for 72 hours in the event of emergencies that disrupt electrical and water systems.

• Contact your local fire department and provide a current list of names and locations of all people

* needing assistance in your home. The list should be kept current and updated.

• Know how to access all the exits in your home, at school or at work, and practice your escape.

• Practice using evacuation devices and unforeseen situations, such as blocked paths or exits.

• Practice dealing with different circumstances. Will you be able to independently evacuate? What supports do you need to evacuate swiftly and safely?

• Do you need extra medications, supplies or a spare set of eyeglasses?

* Be sure to have a copy of your important papers available to be grabbed quickly. This includes a current copy of your child’s IEP.

• Carry your emergency plan at all times with instructions of what to do in an emergency

Managing Celiac Disease

Wheat is the grain on which Western civilization was built. It's been
used for thousands of years as the foundation of our diet. But 1 out
of 100 Americans has a condition called celiac disease, which is an
intolerance to wheat, barley and rye. Its symptoms can be subtle, but
if you don't stick to a gluten-free diet you could be damaging your
body and not even know it. More from Mayo Clinic.


http://podcasts.mayoclinic.org/2008/06/16/managing-celiac-disease/

Managing Celiac Disease

Wheat is the grain on which Western civilization was built. It's been
used for thousands of years as the foundation of our diet. But 1 out
of 100 Americans has a condition called celiac disease, which is an
intolerance to wheat, barley and rye. Its symptoms can be subtle, but
if you don't stick to a gluten-free diet you could be damaging your
body and not even know it. More from Mayo Clinic.

How does SID overlap with Down syndrome?

How does SID overlap with Down syndrome?

Signs of sensory processing problems of a child with DS are often
similar to that of a child traditionally labeled with sensory
integration dysfunction:

Delays in speech, language and motor skills
Delays in learning
Poor self-concept
Poor self-control (impulsive)
Low muscle tone
Poor body awareness
Over reaction to touch, sound, sight, movement (avoids)
Under reaction to touch, sound, sight, movement (seeks)
Resistance to change
Poor transitions
Poor social skills
Poor balance
Clumsy/awkward movement
Unusually high or low activity level
Poor behavior organization

Children with DS often exhibit characteristics which impact motor
skills such as hypotonia (low muscle tone), joint laxity, difficulty
sensing joint position and movement, hypo or hyper responsivity to
touch, discrimination, and integration of touch input. The motor
performance and behaviors of a child with DS can also be impacted by
sensory processing deficits including deficits in sensory
registration, modulation, vestibular, proprioceptive, tactile, visual,
and auditory processing.

http://www.ndsccenter.org/resources/documents/sensoryIntegration.php

Out of school, into the home

Checklist for parents at IEP meetings

http://www.pattan.net/files/ProgMon/ParentInterview.pdf

General Education Teacher Checklist for working with an ESE Student

http://www.pattan.net/files/ProgMon/GenEdTeacherInterview.pdf

Where Differences Matter

Where Differences Matter

Posted on: Saturday, 14 June 2008, 03:00 CDT

By Kozleski, Elizabeth B Engelbrecht, Petra; Hess, Robyn; Swart, Estelle; Eloff, Irma; Oswald, Marietjie; Molina, Amy; Jain, Swati

U.S. education policy acknowledges the troubling differential rates of special education identification and placement for students who are culturally and linguistically diverse by requiring states to review annually student identification data from all local education agencies to identify and address disproportionate representation. Yet, little is known about the interaction between families that are culturally and linguistically diverse and the service providers they encounter at their local schools. The authors examine those relationships in South Africa and the United States, two countries where the legacy of racism lingers in the ways in which school personnel and families negotiate differences in how children are viewed, assessed, and offered support for learning needs. In both countries, sustained efforts from families and school personnel were needed to develop supports and services that worked well for students with disabilities and their families. Keywords: disabilities; special education; families; comparative studies; children; parents

This article provides a cross-case analysis of a research study conceptualized and implemented simultaneously in South Africa and the United States (Engelbrecht, Oswald, Swart, Kitching, & Eloff, 2005; Hess, Molina, & Kozleski, 2006). We began our work together with a shared interest in understanding how context and culture influence and shape the ways in which families access and experience educational systems when their children have disabilities. Using a cultural-historical activity theory lens (Rogoff, 2003), in this article we provide a comparative analysis of our research findings.

Cultural-historical activity theory has a robust history stemming from the work of Vygotsky and other Russian researchers, who sought to examine how context and adults played a role in mediating the development of metacognitive skills, particularly in young children. A variety of researchers began to explore the role of social and cultural mediation itself and to analyze potential mediators in the environment. As Michael Cole and others elaborated these ideas, the interplay between internal psychological characteristics and external mediators was extended to include functional systems of artifacts and participant structures (Cole, 1996; Rogoff, 2003; Wertsch, 1995). Activity theory provides a framework for researchers to understand how families, students, and professionals construct their local practices, interpret rules, and organize their work in the context of complex sociocultural characteristics that are themselves dynamic.

The work of researchers such as Ferguson (2002), Kalyanpur and Harry (2004), Harry and Klingner (2006), and Nelson, Summers, and Turnbull (2004) provides detailed understanding of how family and professional interactions have played out in settings within the United States. Ferguson reminded us that the essential feature of families of students with disabilities is not the add-on "with students with disabilities" but the foreground, "families with children." Ferguson went on to persuade us that families with children with and without disabilities share many more features than what may distinguish families with and without children with disabilities. Ferguson remarked that for the most part, narratives about families and their children with disabilities have focused on disability as the fulcrum around which family dynamics are shaped. This research gave way more recently to the use of narrative as way of exploring family development over time, not in reaction to disability but in families' constructions of the meaning of family and its various permutations. Ferguson noted that in this research, family narrative was explored, but little emphasis was given to the cultural contexts that shape families' perspectives and how these cultural contexts interact with social institutions such as schools. Thus, in U.S. research journals, the narratives of White, middle- class families have been told as universal stories rather than as stories situated in particular contexts in which the families themselves hold particular positions of privilege within a majority White and middle-class culture in the United States. Only a few researchers in the disability field have foregrounded culture as they explored families and the assets they bring to the negotiation of services for their children (i.e., Harry, 1992; Harry & Klingner, 2006). Thus, it is critical in a comparative study that the narratives of families that are not part of the dominant culture are examined to understand the impact of institutional practices on families and their capacity to negotiate educational services for their children.

Recently, discourse about families has also begun to explore the privileging of professional over family knowledge and the implications of this pattern of relationship between families and professionals. Kalyanpur and Harry (2004) noted that it is the researchers and practitioners who discuss how learning disabilities will be defined and assessed and the nature of effective interventions. Families, rather than being part of knowledge generation, are knowledge recipients. The result of this pattern of interaction is played out in decision making about individual students, in which families' perspectives are subordinated to the rules and procedures of institutionalized practice (Harry & Klingner, 2006).

In 2004, Nelson et al. discussed the professional rules that govern relationships between families and professionals in special education, with particular focus on early childhood. In their article, they noted that most helping professions define the boundaries of social relationships between professionals and families (or clients) as ones of appropriate distancing in which professionals gain trust and respect between themselves and families without moving into friendship roles in which transactions between families and professionals spill into recreation, shared experiences of everyday life, confidences, and shared chores. They likened friendship relationships to the interactions between two close sisters, who can move fluidly between advisor and advisee, confidant, and adventurer. In contrast, the dimensions of professional-family relationships are focused on specific circumstances and issues in which professionals are most likely to play the role of experts and family members advisees or clients, expecting to receive advice that helps them manage or meet goals. Nelson et al. went on to note that some helping professional organizations, such as the American Counseling Association and the American Psychological Association, have professional ethical standards that describe and codify these relationships and appropriate deportment on the part of professionals. This kind of rule making is what activity theories refer to as the rules of transaction and participation within an activity arena (Wertsch, 1995).

In this study, we examined how implicit rules for professional- family relationships seemed to play out in decisions to place children in particular settings. We looked for similarities and differences in the rules and the ways they were constructed in South Africa and the United States, foregrounding the cultures of the families that we interviewed. As Artiles (1998) noted, how disability is construed and addressed is affected by the cultural and historical contexts of education within each country. The U.S. context includes continued segregation within schools and school systems, vast differences in access to educational resources, and increasing concern with the disproportionate representation of students from culturally and linguistically diverse backgrounds in special education (Harry & Klingner, 2006; Kozol, 2005). The end of apartheid in South Africa, a focus on reinventing public schools, and the continued disparities in access to free, public education form some of the context for South Africa (Redpath, 2003). Further factors include poverty, multilingualism, and the devastating impact of HIV/AIDS on both students and teachers (Rehle, Shisana, Glencross, & Colvin, 2005; Shisana, Peltzer, Zungu-Dirwayi, & Louw, 2005).

In both the United States and South Africa, the national governments have policies that provide a foundation for school practices at the local level. In the United States, the most current authorization of the Individuals With Disabilities Act (Individuals With Disabilities Education Improvement Act, 2004) reminds citizens that for more than 30 years, the U.S. federal government has had a law in effect that requires local public schools to offer free appropriate public education to students with disabilities. The current authorization of this law also acknowledges that although access to public education is widely available, the quality of that education and its availability alongside nondisabled peers remains a barrier in many local schools. The U.S. law describes the conditions under which services to students with disabilities shall be provided. It provides financial support to states to fund special education and it stipulates the process by which teams of educators and related services personnel in collaboration with families identify, place, plan, and assess individualized educational programs. The law goes on to stipulate data collection and fund systems of personnel development as well as the kinds of technical assistance and professional learning efforts designed to inform and improve local responses. In contrast, South Africa's inclusive education policy, approved by the national education department, takes a strong stand on the socially constructed nature of disability but does not specify nor fund a system through which such an agenda could be achieved: "The approach advocated in this White Paper is fundamentally different from traditional ones that assume that barriers to learning reside primarily within the learner and accordingly, learner support should take the form of specialist, typically medical interventions" (South Africa Department of Education, 2001, p. 23). The policy concludes that schools, practitioners, and families must work together to ensure that local schools provide the setting, materials, and expertise to engage learners with disabilities and help them become educated and prepared for productive adult lives.

Thus, the laws that allow students with disabilities to access general education public schooling create very different contexts. On one hand, in the United States, the educational system must identify, assess, and determine eligibility for special education services. Special education law created a categorization system specific to special education law, along with processes and procedures that stipulate timelines that must be followed at the local school level. School districts and states are given oversight responsibility to ensure that these processes are carried out accurately. In South Africa, no such system exists. Disabilities are diagnosed through the medical system and use the medical categorization system.

As Dyson and Kozleski (in press) point out, the United States has a persistent pattern of identifying and placing students of color, particularly African American boys, into special education at rates 2 to 3 times higher than for other racial and ethnic groups. These patterns of overrepresentation are also evident for Latino and American Indian students. Because the institutional practice of special education relies on families' having specific patterns of communication, an understanding of school practices and rules, access to information from a variety of sources, and the cultural and social capital necessary to participate in decision making with professionals, one area that needs further research is in the negotiation between families and school personnel around identification and placement decisions.

In South Africa, access to education and opportunities to learn also play out across race. Engelbrecht (2006) stated that racially entrenched attitudes and institutionalized discriminatory practices led to extreme disparities in the delivery of education in South Africa. Although the end of apartheid and the advent of the new constitution have created national policies of equity, including the mandate for inclusive education, the process of change is slow. Moreover, South Africa's inclusive education policy is a human rights vision rather than a blueprint that mandates specific processes and interactions in every school, as does the U.S. special education policy.

The intersections of race, class, and disability are complicated to understand within a single formal structure. We can examine the ways in which a single system may advantage some individuals or disadvantage others and, in doing so, help improve the intended and unintended consequences of the way things are. By looking at educational systems in two very different contexts, we hoped to develop a richer understanding of how race, socioeconomic status, and disability influenced the relationships between families and school professionals and the ways in which they collaborated in educating children with disabilities. We were particularly interested in these processes in inclusive educational settings in which students with and without disabilities learned together. By listening to families from differing socioeconomic, ethnic, and linguistic communities, we hoped to understand how they experienced inclusive education in their local communities.

Method

The research team was composed of two branches, one in South Africa and the other in the United States. These two teams corresponded with each other in the development of a set of outcomes for this study and a set of parameters for recruiting families to participate in the study. During the course of this 2-year study, researchers from the American and South African teams met three times face to face. The teams in both countries met on a monthly basis while the design was finalized, human subjects permissions were obtained, and data were collected. They continued to meet for the semester in which the data were analyzed. One member of the U.S. team was able to travel to South Africa to participate in data analysis with members of the South African team. Later, another member of the U.S. team traveled to South Africa to continue the data analysis. Members of the team met a third time at the American Educational Research Association's annual conference. By conceptualizing the study together, collecting the data during the same academic semester, and then sharing the process of data analysis, we learned a great deal about each other's context and were able to make adjustments in our approaches to accommodate the complexities of working across two very different systems.

Participants

Families were recruited for this study by the research team in each country. In South Africa, the research team had done research work in a set of schools located in two areas within driving distance from the team's university. The initial sample included representative groups of parents of children with disabilities within inclusive educational schools in the Western Cape and Gauteng provinces in South Africa. The South African team selected participants who were parents or caregivers of children with disabilities who were included in inclusive schools at the time of the focus group. Contextual differences were apparent as we worked together to identify a sample in each location. For instance, school teams in the United States identify children with disabilities to access special education services. School psychologists in a set of urban schools selected because they served diverse populations of students contacted families, who then gave their consent to be interviewed by the U.S. research team. Thus, the researchers were able to access students and through the students, families, whereas this avenue was not available in South Africa.

Only a few provinces in South Africa have databases that identify schools and the portions of the student bodies that may have disabilities, because the education system has not installed a special education system that relies on eligibility, labeling, and placement decisions to determine who will receive specialized supports and services in schools. As a result, the South African researchers relied on a form of snowball sampling by calling schools and nongovernmental organizations in the disability sector to identify children with disabilities who were being included. From this list, the researchers contacted parents and were able to recruit 47 participants for the study. Researchers balanced their participants by race. About half were White and the other half Black. They did select participants who were able to converse in either English (n = 15) or Afrikaans (n = 32), because the researchers were fluent in both languages. The children attended local schools ranging in size from 300 to at least 1,000 students. Children had experienced their current settings for at least 1 year. Fortyseven parents (7 fathers and 39 mothers) participated, along with 1 person who, although not a parent, was a primary caregiver. In the United States, the families we interviewed were predominantly low income, minority, and for the most part, lacked college educations.

The children of the participants ranged in age from 8 to 16 years. Twelve were male and 20 female. Although the students in the South African sample displayed challenges relating to learning, intellectual, and emotional disabilities, they were identified for the most part with medical rather than educational labels: Down's syndrome (n = 6), spina bifida (n = 3), trisomy 14 (n = 1), acquired brain injury (n = 1), Tourette's syndrome (n = 1), muscular dystrophy (n = 1), growth impairment (n = 1), and specific learning problems (n = 2). These labels specify medical rather than educational status and offer little information about the educational and intellectual skills and capacities of the students, because there is wide variability among individuals with these diagnoses.

The U.S. sample was recruited from eight schools that had more than 65% of their populations receiving free or reduced-priced lunch. These schools were all within one school system that supported over 120 schools and about 65,000 students. The school psychologists at these schools recruited families in each of the schools. They were asked to identify families from diverse ethnic backgrounds who had children with disabilities receiving special education services. They sent home invitations and followed up with phone calls to families to secure permission. The day of the scheduled focus groups, the school psychologists followed up again with reminder phone calls. As a result, there were 15 Hispanic parents, 10 African American parents, and 2 White parents. Eight of the Hispanic parents participated in focus groups conducted in Spanish. The U.S. team wanted to collect data from families that were dominant Spanish speakers as well as from dominant English speakers, because this was reflective of the school communities in which we were collecting data. The children of the parents interviewed ranged in age from 4 to 16 years of age. Nine students were identified as having learning disabilities, 2 had pervasive developmental disabilities, 2 were identified as having emotional disturbance, 3 had multiple disabilities, 2 were identified as having mental retardation, 1 had visual impairment, 4 had developmental disabilities, 1 had hearing impairment, and 3 with speech or language impairments. In the United States, the disability labels that identified students had been provided by the schools through a process of assessment that was stipulated in special education. In South Africa, no such process exists. Students are identified as having disabilities through the medical system. Families provide those diagnoses to the schools when their children register for school. Thus, the study was composed of families whose children were identified through two different processes. On one hand, in the United States, students are identified with educational disability labels by educational personnel. On the other, in South Africa, children are identified through a medical diagnostic process.

In 2002, our research team published its first paper on our collective research efforts, exploring the complexities of completing cross-cultural work. Eloff et al. (2002) discussed how basic activities, such as deciding which families would be invited to participate in our research, uncovered a variety of cultural differences that were unexpected. For instance, assumptions about the nature of special education and its outcomes differed across our two sites. As we began to select families, we realized that schools in the United States often had students with disabilities that remained unidentified in South Africa. The U.S. research team thought that interviewing families of students with learning, intellectual, and emotional disabilities was critical, because those disabilities are subject to social construction. The U.S researchers thought that negotiating the identification of students with these disabilities would lead to deeper understanding of how race, class, and culture complicate the special education identification process. As a result, the U.S. sample included parents whose children had special education labels of learning, intellectual, or emotional disabilities. Although there were similarities in the students' abilities to function intellectually, the identifiers came from the educational system in the United States and the medical system in South Africa.

The Interview Process

The researchers' approaches to interviewing differed in South Africa and the United States. In South Africa, three researchers conducted six focus groups, each lasting about an hour and a half. The researchers were all White, Afrikaner university faculty members. A single item guided the interviews with families: "Tell us about your experiences as parents of your child's inclusion in a mainstream classroom and school." The researchers used the item to facilitate a discussion and then used probes to keep the discourse focused on the item. Follow-up probes included encouraging parents to tell their own stories. At times, the researchers also asked specific questions about the placement process, the kinds of things that had happened since the placement, the adaptations and accommodations that the school had made for the children, and the reactions of the children's peers and siblings.

After piloting an initial set of questions with four families, the final U.S. interview guide contained seven questions, which were translated into Spanish for the Spanish-speaking families. The U.S. team used two doctoral-level students, both fluent in Spanish, to conduct the focus groups, after providing training and an initial model for them. The questions were broad and open ended so that families were able to explore the topics introduced by the questions in some detail (see Table 1). A total of 13 focus groups were conducted, ranging in size from one to eight participants.

We e-mailed back and forth many times as we tried to construct a single guide for both settings, but there remained concerns about overly structuring the interviews for the families in South Africa and not enough structure in the United States. To some extent, this reflected the differences in the methodological backgrounds of the researchers on each continent. We resolved the differences in our interview guides using a similar first question.

Data Analysis

On both teams, the researchers transcribed audiotapes of their focus groups. Afrikaans tapes were transcribed first into Afrikaans, and these transcriptions were then translated into English. The same process was completed for the Spanish-language tapes in the United States. In both cases, a second researcher listened to the tapes in the first language while reading the transcript in English to check the translations.

Both teams of researchers used a constant-comparison method (Glaser & Strauss, 1994) to identify initial categories from their data. After reading transcripts independently and nominating categories, the researchers began to code data into categories that emerged during an initial analysis. Subsequent analyses were run to refine and sort data more precisely, with researchers working in tandem to clarify and challenge the codes. A third pass at the data allowed the researchers to look for relationships among the data. Whereas the U.S. researchers began without a specific scheme in mind, the South African team focused on initial categories of placement, process, and concerns; the impact of inclusion on parents and siblings; the role of the school, including the manner in which the child was accommodated and supported in the school; and the reactions of the wider school community (Swart, Engelbrecht, Eloff, Pettipher, & Oswald, 2005). The final data reduction process involved clustering categories into the overall theme of individual rights (Blue-Banning, Summers, Frankland, & Beegle, 2004).

Results

We examine these findings using a cultural-historical activity theory lens because comparisons between the lived experiences of families in both countries are so deeply affected by the systems they navigate to seek the best outcomes for their children. In particular, we focus on the rules that explicitly or implicitly define family and school personnel relationships as well as the way that divisions of labor between families and professionals are constructed and maintained.

Themes that came from each team's analysis were different. Whereas the South African parents seemed to focus on how they decided to place their students in inclusive schools and classrooms and the impact of these placements on their children with disabilities as well as their siblings, the U.S. parents seemed to focus on the aftermath of placement or the negotiation required to keep their children in learning environments that produced success as defined by the parents (Engelbrecht et al., 2005; Hess et al., 2006; Swart et al., 2005). In many ways, these differences are a reflection of the contexts in which special education exists in both countries. On one hand, South Africa has the national human rights agenda to support inclusive education, without a specific policy specifying the process by which this will occur. On the other, the United States has a national law that is highly prescriptive and details the ways in which children are identified and placed in special education by the education system, subsequent processes for goal setting and progress monitoring, and a series of protections for families and students to ensure that their individual rights are observed through all the processes.

Rules

As we reviewed our themes, one area that seemed to be important in both contexts was the rules that governed family behaviors in both South Africa and the United States. In fact, the differences were so profound that the research teams themselves did not understand the very different assumptions they were making about the process of entering special education. In the United States, most of the families we spoke with encountered special education as a service and process that schools initiated. In some cases, although families knew that their children had challenges, they also expected to enroll their children in their neighborhood schools. On the other hand, South African families had no special education service delivery system to back up their interests in having their children educated in general education environments. They had a human rights policy they chose to exercise. The parents had to decide to place their children in general education schools and then had to negotiate to gain admission to general education schools for their students, explaining their students' disabilities and their needs for accommodations. South African parents acknowledged that they had actively chosen where their children would be educated:

Parents must know if they choose this path, it is not an easy path. You as a parent also have to do what you can, no matter what the teachers say. (Focus Group 1, Pretoria)

In contrast, a dominant-Spanish-speaking parent in the United States described her experience with her child's school:

The school sent me somewhere to have some assessments done with my son, but I don't know what kind of assessments or what they were for. I took him, but I didn't know why, and I never heard anything about the results, [translated from Spanish]

Although the school took responsibility for understanding the student's learning challenges, school personnel failed to make the rules and processes transparent. In worst-case scenarios, this view of families as recipients also subordinates their role and legitimizes poor or nonexistent communication. In subordinating the role of families to the work of researchers and practitioners, families' judgments, observations, and perspectives are also subordinated to professional knowledge building and judgment, as this parent described: My first experience with an IEP [Individualized Education Program], I felt like I was in a different world. I just sat there crying because it felt like, they made me feel like my son was like, so low on his scores and then it's like I had nobody there with me, and I am just looking around at everybody and I'm "He what?" They just kind of rushed through it, and all, basically all I got out of it was that it was, "My son's not up to his potential." He's not doing this and he needs this service, and that's it, sign the papers. And I just walked out of there. I mean, I was just flabbergasted.

Families, particularly those in minority cultures in any given context, are disadvantaged by these perspectives in at least two ways. Not only do professionals have a preference for their own perspectives, but families are co-opted into assuming that professional judgment is better, more accurate, because the process for making judgments about the needs of children is predicated on individualistic determinations of disability that may not coincide with the families' perspectives on the collective nature of the family (Kalyanpur & Harry, 2004).

The systems that families in South Africa and the United States navigate produce very different responses. On one hand, the U.S. families seemed disempowered by their experiences, whereas the South African families seemed to be focused on advocacy:

And that's actually where we need to start, is at the . . . in our environment, our neighbours, our community, our church. . . . And why shouldn't they be included? They've got a right, just as . . . just like . . . yes. But it's the past. We sit with the burden of the past that people put their kid in an institution and nowadays we don't do that anymore.

In South Africa, parents seemed to take on responsibility for placing their children. In the United States, families seemed to be surprised by finding out through their schools that their children had learning problems in school and then felt as if they were coerced in some way to accept the assessments of the professionals and follow their advice. As we looked at the experiences of families in South Africa and the United States, we wondered about the tools that were used to guide interactions between the families and the professionals. To what extent were the processes of identification and placement more formalized in the United States, and to what extent did the process itself proceed along a predetermined pathway through no particular engineering by the participants? To what extent did the families differ in terms of education and status within their local communities?

Division of Labor

This kind of rule making and breaking occurred in our own focus groups in both South Africa and the United States. Swart et al. (2005) reported that "one of the strongest themes that emerged during the course of this investigation was the importance of parents actively working together on the development of a mutual, supportive, open relationship with the school and the teachers" (p. 15). They went on to mention that "teachers who were prepared to learn and change their practices in order to better accommodate the child were, amongst other things, prepared to accept the advice and help of parents and other professional people" (p. 15). In the United States, families identified communication as a big factor in the degree to which they felt comfortable and satisfied with their children's classroom experiences:

You know, he can't tell me, so I want to know what's going on. So, I think communication, I think the biggest part of a perfect school would be a communication part. Being able to call that teacher after school and say, "Hey, what kind of a day did my son have? What did you guys do today?" (Hess et al., 2006, p. 8)

In terms of rule making, as Nelson et al. (2004) suggested, relationships between families and school professionals need to go beyond commonplace assumptions that families receive information and teachers construct it. The most positive experiences for families and their children seem to be with teachers and other practitioners who go beyond their expected division of labor to create strong connections with families in support of student learning.

South African parents reported tensions in letting their children go into general education settings with peers who were nondisabled. The lack of shelter for their children in these settings troubled them, yet they believed that their children needed the opportunity to develop their own identities in settings in which disability was not the norm. The U.S. research team found that the U.S. parents reported little or no conflict about the decisions to place their children in inclusive classrooms. Rather, the U.S. parents seemed to learn within the 1st year of their children being labeled for special education that they could, at a minimum, provide specific information that would help teachers better serve their children. This process of becoming advocates for their children was characteristic for all of the U.S. families, whether they were White, African American, or Hispanic. In fact, over time, the mothers in particular became leaders in constructing and modifying their students' programs, because they perceived that professionals might not know or be able to advocate for their children's specific needs. For Spanish speakers, this process seemed to take 2 to 3 years:

It was really difficult for me to sit through IEP meetings and different people would start talking speech gibberish, different people would say things, and I would sit there and I would really try to focus on what's going on. But I would take that paper home, and I'd look at it and I'd be thinking, "What in the world just transpired?" It took me pretty, several years, before I realized I am his advocate. I have to speak up and say, "Okay, wait a minute, slow down, what does that mean, what did you say?"

Conclusion

Although South Africa and the United States differ dramatically in their gross national products, many strains experienced in both settings result from inefficiencies in system capacities, such as information management, personnel preparation, and resource distribution. Interpretations made in this cross-case analysis have some limitations, including the differences that may exist within the sample population from the two countries. However, this study helped us understand some of the shared challenges in how families are able to access educational systems in both countries.

In this cross-case analysis, we noticed that families in the U.S. study tended to struggle more with the process of special education identification than their South African counterparts. This difference was due in part to the nature of the students' disabilities, the education and economic status of the families, and the degree to which families felt empowered to lead the decision- making process. The roles that families and professionals were expected to play also seemed to dictate levels of participation. Although Spanish-speaking parents' language needs were accommodated, these accommodations were made in response to family requests rather than schools' assuming in advance that they might have to make language accommodations for any family.

Without explicit information about the special education system and its assumptions about the voices and contributions of families, the U.S. families seemed to err on the side of caution, spending time listening so that they could process information later, after meetings had occurred. We also noticed that families seemed to respond more fully to educational planning when they felt welcomed and accepted by teachers and administrators. Rules about professional-family boundaries in relationships seemed to be drawn more explicitly by professionals than by families.

Activity theory provides a scaffold for exploring the human interactions that occur within special education. It allows us to examine multiple vantage points and begin to communicate the layered complexity of family-school relationships, mediated as they are by predetermined formal processes imposed on interactions among groups of people with differing stakes in the outcomes of the interaction. By examining how the tools of practice in special education mediate outcomes, we may be better able to offer services and supports for students that capitalize on their assets and capacities. Cross- cultural studies such as this one help researchers, practitioners, and families better understand their own practices and the results of those practices by looking at the differences between systems and experiences.

Table 1

Focus Group Items

1. Tell us about your children's school experiences-their classes and their classmates.

2. Tell us about how you first learned that your child might need special help.

3. Tell us about what's happening now with your child. Is he or she continuing to get special help and how is it working out?

4. How does your child fit in with his classmates?

5. To what extent has school been good for your child?

6. There's an idea that some people have that all kids should learn together in the same class, even if they have a disability. That's so that all kids grow up with the same choices and opportunities, even when they are different. The thought is that all teachers need to know how to work with all kids. This is often called inclusive education. In what ways has your child had an inclusive school experience?

7. What would the perfect school be like for your child?

References

Artiles, A. J. (1998). The dilemma of difference: Enriching the disproportionality discourse with theory and context. Journal of Special Education, 32, 32-36. Blue-Banning, M., Summers, J. A., Frankland, H. E., & Beegle, G. (2004). Dimensions of family and professional partnerships: Constructive guidelines for collaboration. Exceptional Children, 70, 167-184.

Cole, M. (1996). Cultural psychology: A once and future discipline. Cambridge, MA: Belknap.

Dyson, A., & Kozleski, E. B. (in press). Disproportionality in special education: A transatlantic phenomenon. In L. Florian & M. McLaughlin (Eds.), Dilemmas and alternatives in the classification of children with disabilities: New perspectives.

Eloff, I., Engelbrecht, P., Kozleski, E., Oswald, M., Swart, E., & Yssel, N. (2002, December). Epistemological and methodological issues in a transatlantic project on inclusive education. Paper presented at the annual meeting of the Australian Association for Research in Education, Brisbane, Australia.

Engelbrecht, P. (2006). The implementation of inclusive education in South Africa after ten years of democracy. European Journal of Psychology in Education, 21, 253-264.

Engelbrecht, P., Oswald, M., Swart, E., Kitching, A., & Eloff, I. (2005). Parents' experiences of their rights in the implementation of inclusive education in South Africa. School Psychology International, 26, 459-477.

Ferguson, P. M. (2002). A place in the family: An historical interpretation of research on parental reactions to having a child with a disability. Journal of Special Education, 36, 124-131.

Glaser, B. G., & Strauss, A. L. (1967). Discovery of grounded theory. Chicago: Aldine.

Harry, B. (1992). Restructuring the participation of AfricanAmerican parents in special education. Exceptional Children, 59, 123-132.

Harry, B., & Klingner, J. K. (2006). Why are so many minority students in special education? Understanding race and disability in schools. New York: Teachers College Press.

Hess, R., Molina, A., & Kozleski, E. B. (2006). Until somebody hears me: Parental voice and advocacy in special education decision- making. British Journal of Special Education, 33, 148-157.

Individuals With Disabilities Education Improvement Act, 20 U.S.C. [section] 1400 et seq. (2004).

Kalyanpur, M., & Harry, B. (2004). Impact of the social construction of LD on culturally diverse families: A response to Reid and Valle. Journal of Learning Disabilities, 37, 530-533.

Kozol, J. (2005). The shame of a nation: The restoration of apartheid schooling in America. New York: Crown.

Nelson, L., Summers, A., & Turnbull, A. P. (2004). Boundaries in family-professional relationships. Remedial and Special Education, 25, 153-165.

Redpath, J. (2003, September). Independent schooling in South Africa. Cinderella or fairy godmother? Paper presented at the Liberal Education-International Perspectives Conference, Potsdam, Germany.

Rehle, T, Shisana, O., Glencross, D., & Colvin, M. (2005). HIV- positive educators in South African public schools: Predictions for prophylaxis and antiretroviral therapy. Cape Town, South Africa: Human Sciences Research Council.

Rogoff, B. (2003). The cultural nature of human development. New York: Oxford University Press.

Shisana, O., Peltzer, K., Zungu-Dirwayi, N., & Louw, J. (2005). The health of our educators: A focus on HIV/AIDS in South African public schools. Cape Town, South Africa: Human Sciences Research Council.

South Africa Department of Education. (2001). White Paper 6: Building an inclusive education and training system. Retrieved July 26, 2006, from http://www.info.gov.za/whitepapers/2001/ educ6.pdf

Swart, E., Engelbrecht, P., Eloff, I., Pettipher, R., & Oswald, M. (2005). Developing inclusive school communities: Voices of parents of children with disabilities. Education as Change, 8, 80- 108.

Wertsch, J. V. (1995). The need for action in sociocultural research. In J. V. Wertsch, P. del Rio, & A. Alvarez, A. (Ed.), Sociocultural studies of mind (pp. 56-74). Cambridge, UK: Cambridge University Press.

Elizabeth B. Kozleski

Arizona State University

Petra Engelbrecht

North-West University (Potchefstroom Campus)

Robyn Hess

University of Northern Colorado

Estelle Swart

University of Stellenbosch

Irma Eloff

University of Pretoria

Marietjie Oswald

University of Stellenbosch

Amy Molina

University of Northern Colorado

Swati Jain

Swati Jain College

Authors' Note: We acknowledge the support of the National Institute for Urban School Improvement (http://www.urbanschools .org) under Grant H326B060012 and the National Center for Culturally Responsive Educational Systems (http://www.nccrest .org) under Grant H326E020003 awarded by the U.S. Department of Education's Office of Special Education Programs. Funding agency endorsement of the ideas presented in this article should not be inferred. Correspondence concerning this article should be addressed to Elizabeth B. Kozleski, Arizona State University, Mary Lou Fulton College of Education, Curriculum and Instruction, P.O. Box 87201, Tempe, AZ 85287-2011; e-mail: elizabeth .kozleski@asu.edu.

Elizabeth B. Kozleski, EdD, is a professor of special education at Arizona State University in Tempe. Her current interests include urban education, inclusive education, systems change, and teacher learning.

Petra Engelbrecht, PhD, is dean of the Faculty of Education at North-West University (Potchefstroom Campus) in South Africa. Her current interests include inclusive education and research capacity development.

Robyn Hess is an associate professor of school psychology at the University of Northern Colorado, focusing on school dropout and completion, especially among Latino students; culturally responsive assessment and intervention; systemic interventions; and stress and coping in children.

Estelle Swart, EdD, is a professor in educational psychology at the University of Stellenbosch. Her research focuses on leadership development for inclusive education and professional learning of teachers and psychologists.

Irma Eloff, PhD, is chair of the Department of Educational Psychology at the University of Pretoria, South Africa. Her research focuses on positive psychology, vulnerable children, and inclusion.

Marietjie Oswald, MEd, is a lecturer in educational psychology at the University of Stellenbosch, focusing on inclusive education, career education, and counseling and life skills education. She is currently working on her PhD, exploring the implementation of inclusive education in schools.

Amy Molina, MS, is a PhD candidate in school psychology. Her research interests include positive psychology, alternative school programming, and educational attainment among diverse populations.

Swati Jain, MS, owns and operates the Swati Jain College in Indore, India. Her research interests involve leadership for crosscultural innovation and sustainability, systems change, and student assessment studies.

Copyright PRO-ED Journals May 2008

(c) 2008 Journal of Special Education, The. Provided by ProQuest Information and Learning. All rights Reserved.

Source: Journal of Special Education, The

Coping with Oppositional Defiance

Coping with Oppositional Defiance

Does this sound like your child?

-
Often loses temper

- Often argues with adults

- Often actively defies or
refuses to comply with adults' requests or
rules

- Often blames others for
his or her misbehavior or mistakes

- Is often touchy or easily annoyed by
others

- Is often angry and resentful

- Is often spiteful and vindictive

Causes and Consequences:
It seems that oppositional defiant disorder arises out of a circular family dynamic. This is not to say that you
caused your child to have ODD. It is to say that there are characteristics about your child that resulted
in an unhealthy family cycle of interaction. An infant who is by nature more difficult, fussy, and colicky, may be harder to soothe and thus cause parents to become frustrated and to lack confidence in their parenting
skills. If they perceive their child as basically unresponsive, they may begin to anticipate that the child will be unresponsive or noncompliant and set up a self-fulfilling prophecy. As a result, the parent's anticipating
failure, may unresponsive or unreliable in return and inadvertently add to the child's feelings of irritability,
helplessness, neediness, and frustration.

As parents attempt to assert control by insisting on compliance in such areas as eating, toilet
training, sleeping, or speaking politely the child may demonstrate resistance by withholding or withdrawing or tantruming. As a child grows increasing negativism, defiance, and noncompliance become
misguided. But, these habitual ways of dealing with adults that persists long after the "terrible twos."

The more defiant and provocative the child's behavior, the more negative feedback is elicited from the parents. In their attempts to teach their child to behave properly, parent or authority
figures try reminding their child, lecturing them, removing privileges, berating, and physical
punishment, nagging and negotiating. Unfortunately, these behaviors give the child a sense of control and
therefore tend to increase the rate and intensity of non-compliance.Ultimately, it becomes a tug of war and a
battle of wills with everyone losing.

Because parents are so frustrated dealing with their child, their
system of discipline becomes inconsistent. At times they may be calm
and assertive. Other times they may explode in anger. At still other
times, they may withhold appropriate consequences which soon become
hollow threats. As the child continues to provoke and defy, parents often
lose control. Then, feeling sorrow and guilt, especially if they've
become verbally or physically explosive, parents may overcompensate with
excessive rewards or leniency in order to undo what they now perceive to
have been excessive discipline or punitive consequences.

When a child starts school, this pattern of passive aggressive,
oppositional behavior tends to provoke teachers and other children as well
an often begins a cycle of being denied recess, getting detentions or
suspensions; which further aggravates the problem

In many cases, oppositional disorders coexist with attention deficit/hyperactivity disorder. In this case, the
impulsivity and hyperactivity of ADHD can greatly amplify the defiance and
uncontrolled anger of ODD. Symptoms of ODD can also appear as part of major
depressive disorder, obsessive compulsive disorder, or mania. Some children
with separation anxiety disorder may also evidence oppositional
behaviors.

So, what do we do?

Unfortunately, there are no simple solutions. But, here are some of the key approaches.

Parent Training
Programs Some parents are helped through formal parent training programs.
The benefit of these programs lies in both parents learning to use the same techniques and to do so consistently. It involves parents learning to set the same standards and apply the same consequences
day in and day out so that oppositional and defiant children cannot pit once against the other or
push parents into over or under reacting and then feeling guilty for their own behaviors. Parents learn to communicate expectations and consequences clearly to their child, to enforce the rules
calmly but firmly, and to use positive reinforcement whenever they catch their child being good so they can increase the frequency of occurrence of desired behaviors.

Individual Psychotherapy
Finding a psychologist or play therapist with whom your child can develop a good relationship can be very
valuable. Often children with ODD feel as if they don't live up to their parent's
expectations and this frustration exacerbates their disorder.
When a therapist provides unconditional acceptance, the therapist is in a position
to help your child learn some effective anger management techniques that
decrease defiance and naturally lead to more positive parental feedback.
The therapist may also employ cognitive behavioral techniques to help your
child learn effective problem solving skills that will improve social
interactions inside and outside the home. The support gained through
therapy can counterbalance the frequent messages of failure to which the
child with ODD is often exposed.

Social Skills Training
Coupled with other therapies, social skills training has been effective in improving social behaviors that result from a child's angry, defiant approach to rules. Incorporating reinforcement
strategies and rewards for appropriate behavior helps children learn to generalize positive behavior.
Social skills training, can help children learn to evaluate social situations and adjust their behavior accordingly. Metaanalyses of research on social skills has shown that the only
successful social skills training interventions are those that provide training in the child's natural
environments (home and classroom) - so that generalization is built in.To accomplish this you will need your child's Individualized Education Plan (IEP) from school to includeCommunity Based Instruction using social skills training.

Medication is only recommended when the symptoms of ODD occur with other
conditions, such as ADHD, obsessive compulsive disorder (OCD), or anxiety
disorder. When stimulants are used to treat attention deficit/hyperactivity disorders, they also appear to lessen oppositional symptoms in the child. There is no medication specifically for treating
symptoms of ODD where there is no other emotional disorder. In lieu of medication, you might
wish to investigate EEG neurofeedback, a nonpharmacological intervention which is effective at teaching children to self-calm, thereby increasing their adaptability and decreasing oppositionalism that results from poor adaptability. In addition, if your child is often moody and angry, you may ask your pediatrician to explore the possibility of prescribing transcranial electrotherapy for your home. This involves the use of a
portable unit called Alpha Stim, which generates low voltage alpha waves (the kind of waves the brain generates when it is calm and focused). Your child can wear this noninvasive devise for 20-30
minutes per day, to induce a relaxed, peaceful state without need for medication.

Practical Suggestions for Parents

Enlist others to help you: You need help on a consistent basis. This means you need to
speak with your parents, your siblings, your husband's parents and siblings, your neighbors and let them know that your child has a disorder which is difficult to control and very demanding
on you as a parent. Therefore, you need help on a regular basis from now
until your child is grown. Ask each to commit to help in some concrete fashion. This might
mean that someone watches your child every week so you can go grocery
shopping without a hassle, it may mean that grandma has the kids for dinner
every Saturday so you and your spouse can have a meal and a conversation
without interruption. It might mean that Uncle Mike takes you son for a
bike ride on Sunday's after church so you and your husband can pay your
bills. You decide what you need, and ask each person in your support
network to make a specific commitment to help you. In short, do
everything you can to share the burden of parenting. This includes asking all
interested parties to learn about your child's disorder(s) and IDEA and
to participate in IEP meetings with the school district.

Set up an appropriate school program: If your child is not already classified,
make a written referral for your child to be evaluated for special education. Request a Functional Behavioral Analysis as part of the evaluation process. Once eligibility is determined, you want to
advocate for an IEP that include a Behavioral Intervention Plan with positive
behavioral supports to reduce the occurrence of oppositional and defiant behaviors. You also want this plan to stipulate that in or out of school suspensions may not be employed as a disciplinary measure with your child, and that your child may not lose recess. It is also important to have weekly counseling sessions with the school psychologist as part of your child's IEP with goals to develop relaxation and anger management skills, along with problem solving and coping mechanisms. Additionally,insist on having monthly parent training sessions in behavior management in your child's IEP so that you can carry over any effective interventions the school is employing to the home environment. Be certain that the IEP also indicates your child will be staying after school for aftercare and that a
staff member is to utilize this time to assist your child in completion of
all homework assignments and projects. This component is important because
it will eliminate a major source of conflict at home.

Finally, don't forget to make certain that the IEP includes community based instruction at
home and other locals your child frequently visits using social skills training.

Access community services:
Consider putting your child in daycare before and after school. Insist that homework is completed
in the afterschool program so that this source of conflict is eliminated from
the home environment. For weekends and holidays and summer vacations,
consider having your child participate in programs offered by Big Brother
and Big Sisters or Boy Scouts/Girl Scouts. Summer camps provide an
excellent opportunity for your child to "start over" with adults and
children who don't know their history of defiance and who will expect and
therefore automatically reinforce compliance. They also provide you much
needed time to self-nurture so that you will replenish your own
reserves and be better equipped to deal with your child when s/he arrives
home from camp. Don't forget to ask for help from your local religious
organization. Someone from your church or temple may be equipped
to provide some spiritual counseling for your child. This can be important
as prayers have been documented as an effective method of stress
management and anger control. Additionally, there may be someone who is
able to assist concretely by providing some much needed tutoring, or
picking up your families' groceries while they pick up theirs or even
picking up.

The last step is respite foster care on a regular
basis: If your child becomes too demanding and it begins to impact on your
own physical or mental health, consider respite foster care. This might
mean your child spending one weekend a month with a foster family in order
to provide a break for you to nurture not only yourself, but also
other children in the home, and your marriage. Many parents indicate that
they would feel like complete failures if this became necessary. In
reality, this is a healthy effective way to equip yourself to handle your
child's special needs over the long haul.

Make consequences relevant to the offense: Avoid using generic consequences such as time out
or grounding. Instead, customize the consequence to the offense. For instance, if your child throws a shoe and break your favorite crystal piece. Then, assign your child an hourly wage, and have him work over the
next several (days, weeks, months) to earn the money to replace that item.
Each day when it is time to do the extra chores, give a reminder that helps the child connect the behavior to the consequence. For instance, "Joey, it is time to rake the lawn to earn some more money towards paying for the crystal that broke when you choose to throw the shoe". If you child steals something, then the consequence might be a visit to the police station, witnessing some criminals in cells
and a discussion with a police officer about what happens to children who steal. If your child, lies then
the consequence might be to do a research report on the value of honesty.

Discover what your child is truly interested in:
Some children devote so much time to being disruptive that they never
develop any appropriate interest. This is another way that camps can be of
help. For instance, you might try a few sports camps, or a music camp, or
an art camp and in the process your child may discover something that
truly interests them; which can be used as a reward and a motivator during
the remainder of the year. If you haven't the funds for camps, try
your local YMCA as most will offer scholarships based on financial needs.
The YMCA and Big Brothers or Sisters and Scouting all offer positive
activities for your child to be involved in during the school year along
with opportunities to interact socially with nondisabled peers who may
provide good behavioral role models. These organizations all teach values
that include respecting parents and giving back to the community, and
thereby reinforce the values you are trying to teach your child.

·
Residential Schools:
If your child's behavioral problems grow to the point that you and your child's school have difficulty dealing
with them, consider a therapeutic residential school. This can be a
win-win-win situation. It alleviates the need for your ill-equipped local
school to address your child's behavioral needs, it provides, you, your
spouse and your other children extended periods of normalcy, and it
provides your child the structure and therapy that are needed in a
situation where they can no longer alienate those closest to them.
Additionally, when your child does come home for weekends, holidays and
vacation it is always an opportunity to start off on a positive note with a
clean slate. Moreover, relationships can be fostered while your child is
at school through letters, emails, on-line photo albums and phone calls
without having to deal with day to day conflict.

Someone to talk to: Whether it is a friend, relative, friend,
pastor, or a counselor, you need to be able to talk to someone on a regular
basis; and most especially when things are going badly. Issues you may
need some help with are:

· Carving
out time for your marriage

· Nurturing siblings of your difficult
child

· Communicating your child's home and community needs to
the
IEP team

· Issues that need to be addressed in your child's
behavioral
intervention plan

· Thinking about a residential
school

· Having a plan to deny privileges to a defiant child
without
denying siblings (i.e. someone to stay home with child when s/he
doesn't
deserve to go the movies but the other children do.

·
Considering respite foster care

· Dealing with constant lying

·
Dealing with thefts

· Coping with your child's physical
aggression

· Dealing with crimes that your child engages in

·
Disagreeing with your spouse about how to handle behaviors

·
Grieving the loss of the child you hoped for

· Seeing the school
system write off your child's needs

· Behavior management
techniques

· Effective advocacy within the educational
system

Some parents feel uncomfortable in face to face counseling. For
others
the only time they can squeeze in for sessions is in the evenings
when
their child is asleep by which time most therapists' offices are
closed.
Others don't want weekly assistance, but they'd like a familiar
person
they can contact when the need arises. In these situations,
internet
special needs coaching sessions may be a good alternative. You
schedule
these at your convenience when you need them and address your then
pressing
issues from the comfort of home. To schedule this type of session
go to
[http://www.specialeducationsupport.org/]
www.specialeducationsupport.org
and select the schedule tab.

How to begin
dealing with your child's behavior

· Start at ground zero. Tell
your child that his/her behavior
has not been acceptable and that the whole
family is going to start over.
Develop a list of expected behaviors and
consequences for noncompliance.
Post these in a predominant spot. Then,
develop a list of your child's
responsibilities and privileges that can
be earned by completing those
responsibilities without a hassle or
reminders. Start with only essentials
being provided: bedroom, basic
food, clothing etcetera. Make it so that
your children need to earn TV
time, computer time, having friends over,
visiting others, trips to the
library or bowling alley, and extra half hour
later bedtime, and so forth.
The children in your family without
oppositional and defiant behavior will
follow the same rules and as they
are already compliant should have no
problems earning their privileges and
setting a good role model.

- Build
on the positives, not the negatives. Create ways for your child
to
experience positive feedback. This might involve having them
participate
in a formal volunteer program in the community. Or, it may be
as simple as
asking them to tutor a younger sibling in an academic area
where they have
strength and then providing plenty of praise. Creating as
many
opportunities for positive reinforcement as possible, and in so
doing
create as many opportunities as possible for your child to help those
less
fortunate than themselves. This helps combat their feelings of
entitlement
and begin to understand the perspective and needs of others. It
also
provides opportunities for you to compliment their hard work in
their
undertaking. For instance, you might compliment your child for raking
a
disabled neighbor's lawn, for collecting recycling, for donating some
of
their allowance to a charitable organization for children, for
volunteering
at the humane society, for singing Christmas Carols in
nursing homes,
think of ways for your child to give back to the community;
and praise
those behaviors. As a general rule, each day children should
hear more
positive than negative comments about themselves.

- Use
teachable moments to your advantage. Kids with ODD would like to do
well,
but they have been prewired such that they lack the necessary
flexibility
to adapt easily to environmental demands. You can help your
child by
teaching adaptive skills. The easiest way to do this is to model
adaptive
behavior and to verbally mediate your actions. For instance, when
someone
cuts you off in the Wal-mart parking lot and steals the spot you
have been
waiting for. You can calmly drive on while saying: "That
person's rude
behavior was very upsetting, so I'm going to breathe
deeply to recompose
myself." Or, I'm really frustrated that I didn't
receive a promotion
at work after all the extra hours I have been putting
in. I know Joe got
the promotion just because he is friends with my boss.
So, I'm going to
direct the energy from my anger into looking for a new
job with more
advancement opportunities. Maybe you can help me print
copies of my resume
and search the internet for possible openings."
Involving your child in
these types of constructive actions can help your
child learn to
effectively direct their own anger energy into similar
constructive
activities. Or, you might say, "I'm tired and frustrated
and feel
grumpy, so I'm going for a walk to refresh myself. Would you
like to
join me?" Physical activity releases endorphins that improve our
moods,
so modeling physical exercise as an outlet for anger or frustration
is very
positive. You can also direct teach. For instance, if you see a
peer
tease your child, before the situation escalates you can step in and
say:
"Bob, I heard you teasing Joey. I'm certain that hurt his
feelings.
Now Joey may choose to ask you to go home, or he can choose to
ask you for
an apology. Joey what do you want to do?" Bear in mind
though, that
oppositional children tend to respond more positively to
verbally mediated
role modeling than they do to direct teaching.

- Pick your battles. Most
children with ODD are doing quite a few things
that you dislike, but if
everything is a battle you will get nowhere. If
something is simply
annoying you might choose to ignore the behavior. For
instance, if your
child interrupts while you are on the phone you might
tell the other party.
I need to get off the phone now and I'll call you
back later. Then, when
your child requests attention appropriately. Thank
him or her for waiting
until you were free to speak. Some things you may
be willing to
occasionally negotiate on. For example, if homework is always
to be done
before friend's visit; but a very good friend is visiting from
out of
town and has only this time to visit you might say to your child:
"Since
Paul is a special friend and is only here for today, we will make
an
exception and let you play now and do your homework later. But, if
your
homework is not completed without hassle by 7pm, then the next time
Paul
visits, we will not make this special exception." Some things
should
never be negotiated: being disrespectful, lying, stealing or being
violent
must always meet with consistent consequences.

- Take a break from
the conflict. If you lose your cool, the child will
see it and know that
s/he has the upper hand. Learn to take time to say.
"Right now, I am
very angry with you. Go to your room, while I think
about how we will deal
with this". Then, call a resource person or do
something that helps you
calm down. Later, when both spouses are present,
address the issue
jointly.

- Don't keep your child's misbehaviors a secret: When
your child has
chosen to be defiant and have a consequence doesn't hide
it. If they
can't go to the movies with Uncle Mike because they stole
something, tell
Uncle Mike the full reason. This may bring the reproach of
others to back
up your position that such behaviors are not acceptable. If
your child's
best friend may not come over because your child did not
complete his
homework, let the friend know: "Joey can't play today
because he
hasn't completed his homework. You may help him with his
homework or you
may come over another day."

- Quality time: When you
have a child who is oppositional and defiant you
may feel as it all or most
of your interaction with that child are
stressful and conflict ridden. To
counter this, when you child arrives
home, make certain you have a full
half hour free of other commitments.
Devote this time to engaging in an
activity of preference with your child.
For example, your child might enjoy
Webkinz; if so play this with him. Or,
your child might like a particular
Game Boy or Nintendo Game. If so, learn
to play it and have a contest.
Or, perhaps you have a child, who likes
certain board games, then sit down
and share some pleasant time together.
It might also be time painting or
drawing, or working on a wood working
project. The activities don't
matter, as long as your child enjoys it
and you get at least a half hour a
day of uninterrupted time with your
child engaged in a positive activity
together.

Additional Advice...

· Don't take it personally.
You child may call you
"mean", but they are really frustrated by their
own lack of
adaptability and are lashing out at the nearest target. When
this happens,
just tell your child that even though they are angry with
you, you love
them and will continue to do what is best for them.

·
These children are experts at pushing your buttons, so don't
let them.
Keep your composure, no matter how difficult. Do not fight with
your child.
If need be, walk away, take a bubble bath, use the Alpha Stim,
do deep
breathing exercises. Then, when you are calm, and your child is
calm
address the issue that gave rise to the conflict.

· Give genuine
choices. Give them appropriate control when you
can. For example, "Joey,
you need to clean your room today. You may do
it now and then have the
afternoon to play. Or, you can play for just two
hours and then stop to do
your room. Which do you prefer?" "Or, "
Joey, your teacher says your
are behind in AR reading. Do you want me to
read with you a half hour each
night at bedtime, or do you want to read a
half hour by yourself every day
before going out to play?"

· Connect with what you like about
the child. Don't forget
that he or she is a child with many wonderful
features. Work on that part
of your relationship and help them remember
who they are

Overall tips . . .

· Intervention should be as
early as possible.

· It should cover as much of the child's day
as possible every
day

· It should include all caregivers

·
It should be consistent across all environments and across
time

·
It should be maintained as long as needed (basically until
your child is
grown)

· It should include many different types of interventions
and
not just focus on one aspect of the problem

ADDITIONAL SITES WITH
INFORMATION ON ODD:

[http://www.adhd.com.au/conduct.html]
http://www.adhd.com.au/conduct.html
- Causes and treatments for
ODD/CD

[http://childparenting.about.com/library/blchildbehaviordisorder.htm]
http://childparenting.about.com/library/blchildbehaviordisorder.htm
-
Guide to resources for parents of children with behavioral and
mental
problems

[http://www.focusas.com/BehavioralDisorders.html]
www.focusas.com/BehavioralDisorders.html
- Broad resources addressing a
variety of problem behaviors and disorders
of children, adolescents and
young
adults

[http://groups.yahoo.com/group/oddparentsroom/]
http://groups.yahoo.com/group/oddparentsroom/
Chatroom for parents with
children with
ODD

[http://www.haworthpress.com/store/sampleText/J007.pdf]
www.haworthpress.com/store/sampleText/J007.pdf
- Innovative Mental Health
Interventions for Children: Programs that
Work

[http://www.ici2.umn.edu/preschoolbehavior/tip_sheets/hostagg.pdf]
www.ici2.umn.edu/preschoolbehavior/tip_sheets/hostagg.pdf
- Preventing and
dealing with challenging
behavior

[http://www.ici2.umn.edu/preschoolbehavior/tip_sheets/passagg.htm]
www.ici2.umn.edu/preschoolbehavior/tip_sheets/passagg.htm
- Dealing with
Passive Aggressive
Behavior

[http://www.klis.com/chandler/pamphlet/oddcd/oddcdpamphlet.htm]
http://www.klis.com/chandler/pamphlet/oddcd/oddcdpamphlet.htm
Overview of
ODD, case examples, non-medical strategies for dealing with
ODD/CD

[http://www.lifematters.com/4goals.html]
www.lifematters.com/4goals.html
- An article that addresses the children's
underlying goals of typical
misbehavior and how adults can recognize
them

[http://www.youthchg.com/hottopic.html]
www.youthchg.com/hottopic.html -
Interventions for aggressive behavior in
children.
References

American Psychiatric Association (2000). Diagnostic
and statistical
manual of mental disorders (4th ed., rev.). Washington DC:
Author.

Carson, R. C., Butcher, J. N., & Mineka, S. (1998). Abnormal
psychology
and modern life: Tenth edition. New York: Addison Wesley
Longman.

Chandler, J. (2001). Oppositional Defiant Disorder/Conduct
Disorder
Pamphlet.
26 Mar, 2003.

Jabs, C. (1999). Is your child
too defiant? Working Mother, Mar. 99.
03 Jun, 2003.

Kazdin, A. E., & Weisz, J. R. (2003). Evidence-based
psychotherapies for
children and adolescents. New York: Guilford
Press.

Minke, K. M., & Bear, G. C. (2000). Preventing school problems
-
Promoting school success: Programs and strategies that work.
Bethesda, MD: National Association of School Psychologists.

Quay, H. C., &
Hogan, A. E. (1999). Handbook of disruptive behavior
disorders. New York:
Kluwer Academic/Plenum Publishers.

Webster-Stratton, C., & Taylor, T.
(2001). Nipping early risk factors in
the bud: Preventing substance abuse,
delinquency, and violence in
adolescence through interventions targeted at
young children (0-8 years).
Prevention Science, 2(3), 165-192.

Presented as
a community service by,
Susan L. Crum, B.S., M.S., Ph.D.
Special Needs
Coach
Able2Learn
Email: [mailto:Able2learn@live.com]
Able2learn@live.com
Voice and Fax: 863-471-0281
Website:
specialeducationsupport.org

This message was sent by: Able2Learn, 2880 Zankor Road, San Jose, CA 95134