Many students with disabilities, including those with AD/HD, can handle academic expectations, but easily get overwhelmed with a full academic course load. One accommodation to meeting these learning needs is to reduce the number of courses taken. This is particularly true at the college and university level. We know many young adults through CHADD who are successfully passing their college courses, but are taking several years more than the traditional four years to complete their studies and graduate.
Health insurance plans typically allow adult children who are “full-time” students to stay covered under their parents' health insurance plan. In 2006, the state of Maryland enacted a law mandating health insurance coverage for part-time college students with "documented" disabilities. "Part-time" is defined as "at least 7 credit hours per semester." The law covers students in "accredited institutions of higher education."
On January 13, at a meeting in Harrisburg, CHADD Pennsylvania decided to seek legislative sponsorship and enactment of the “Maryland law” in Pennsylvania. We believe that Maryland is the first state in the nation to have this legal requirement. CHADD actively supports this approach to assisting young adults with AD/HD and related disorders who are seeking college and university education.
CHADD supports more comprehensive supports for adults with AD/HD, but this is one realistic, targeted, and reasonable support that should be able to find majority legislator support.
Here is where you will find the text of the Maryland law. First, go to the Maryland General Assembly homepage. Scroll down the page until you find Statutes, Maryland Statutes, Maryland Code Online (on the Michie/Lexis website), Maryland Code, Insurance, Title 15 Health Insurance, Subtitle 4 Eligibility for Coverage, 15-417 Coverage for Part-Time Students with Disabilities (206, chapter 395). The text of the law is also posted on the CHADD Web site.
Clarke
Wednesday, January 16, 2008
Friday, January 4, 2008
Youth Involvement
My son, Andrew, is 17 years old. He has special needs. Trying not to be paternalistic, trying to solicit and respect his views as he approaches adulthood, and trying to share whatever lessons I have learned from life, are challenges.
A fundamental role of CHADD is sharing the lived experience of persons with AD/HD and their families with those who make decisions about our lives—medical professionals, educators, health insurance companies, those who work locally/statewide/nationally as legislators and public administrators, and others. The adult consumer perspective is important. The perspective of parents and other caregivers is important. Soliciting and respecting the views of teens and adolescents is a gray area, particularly when those views aren’t shared by the parents. This is such a perplexing challenge for all families. Add some special needs into the equation and it gets even more confusing.
Through the leadership of CHADD volunteers Chris Dendy, Joan Helbing, and the conference program committee, the CHADD annual conference has increased its focus on the needs and issues of teens and adolescents. Chris and her sons have written books about this challenge. Several years ago my Presbyterian church created a slot on our governing board for a high-school-aged representative. CHADD will continue to discuss how to meaningfully include the teen and adolescent perspective in what we do. In addition to governance concerns and public educational and personal development activities, there is a role for teens in developing financial support activities.
On December 30, the Washington Post published an article, “For Modern Kids, 'Philanthropy' Is No Grown-Up Word.” The article started: “In lieu of presents at her 12th birthday party this year, Maddie Freed of Potomac asked her friends to bring money, and she raised $800 for Children's Hospital.” The article went on: “Young children and teenagers across the nation are getting involved in philanthropy more than ever, according to research and nonprofit experts, who credit new technologies with the rise of the trend. As young people increasingly become exposed to and connected with the problems of the world via the Internet and television, experts said, parents are finding new ways to instill in their children the value of giving. At the same time, technology is democratizing philanthropy so giving is not only easier for people of all ages and means, but also trendier. And children are starting to organize at the grass-roots level to give.”
Avery Zuleger of Appleton, Wisconsin, is one such young man. Nine-year-old Avery wants to change the way people view AD/HD, and to do so, he created his own Web site. After he was bullied on a playground, he designed silicone awareness bracelets with the slogan “ADHD Rocks.” He sells these blue-and-white bracelets through his Web site, and is donating all his profits to AD/HD research and CHADD. Avery has received emails from people all over the world, and has addressed two AD/HD functions. At one of these, a conference held last November in his hometown, he spoke before 700 people, sharing the stage with one of the foremost experts on AD/HD, Dr. Russell Barkley. This is a young man on a mission!
As a father I need all the guidance and assistance I can get on how to meaningfully solicit and respect my son’s ideas and views about his life. Involvement in peer groups, church, and civic associations are venues for him to learn how to share his views and to guide his life. As a guy with special needs who has social skills challenges, he needs more learning opportunities. He and the children identified in this blog are being involved. We, as parents, need to be as supportive and understanding as we can. Welcome to 2008.
Clarke
A fundamental role of CHADD is sharing the lived experience of persons with AD/HD and their families with those who make decisions about our lives—medical professionals, educators, health insurance companies, those who work locally/statewide/nationally as legislators and public administrators, and others. The adult consumer perspective is important. The perspective of parents and other caregivers is important. Soliciting and respecting the views of teens and adolescents is a gray area, particularly when those views aren’t shared by the parents. This is such a perplexing challenge for all families. Add some special needs into the equation and it gets even more confusing.
Through the leadership of CHADD volunteers Chris Dendy, Joan Helbing, and the conference program committee, the CHADD annual conference has increased its focus on the needs and issues of teens and adolescents. Chris and her sons have written books about this challenge. Several years ago my Presbyterian church created a slot on our governing board for a high-school-aged representative. CHADD will continue to discuss how to meaningfully include the teen and adolescent perspective in what we do. In addition to governance concerns and public educational and personal development activities, there is a role for teens in developing financial support activities.
On December 30, the Washington Post published an article, “For Modern Kids, 'Philanthropy' Is No Grown-Up Word.” The article started: “In lieu of presents at her 12th birthday party this year, Maddie Freed of Potomac asked her friends to bring money, and she raised $800 for Children's Hospital.” The article went on: “Young children and teenagers across the nation are getting involved in philanthropy more than ever, according to research and nonprofit experts, who credit new technologies with the rise of the trend. As young people increasingly become exposed to and connected with the problems of the world via the Internet and television, experts said, parents are finding new ways to instill in their children the value of giving. At the same time, technology is democratizing philanthropy so giving is not only easier for people of all ages and means, but also trendier. And children are starting to organize at the grass-roots level to give.”
Avery Zuleger of Appleton, Wisconsin, is one such young man. Nine-year-old Avery wants to change the way people view AD/HD, and to do so, he created his own Web site. After he was bullied on a playground, he designed silicone awareness bracelets with the slogan “ADHD Rocks.” He sells these blue-and-white bracelets through his Web site, and is donating all his profits to AD/HD research and CHADD. Avery has received emails from people all over the world, and has addressed two AD/HD functions. At one of these, a conference held last November in his hometown, he spoke before 700 people, sharing the stage with one of the foremost experts on AD/HD, Dr. Russell Barkley. This is a young man on a mission!
As a father I need all the guidance and assistance I can get on how to meaningfully solicit and respect my son’s ideas and views about his life. Involvement in peer groups, church, and civic associations are venues for him to learn how to share his views and to guide his life. As a guy with special needs who has social skills challenges, he needs more learning opportunities. He and the children identified in this blog are being involved. We, as parents, need to be as supportive and understanding as we can. Welcome to 2008.
Clarke
Monday, December 10, 2007
End-of-the-Year Giving: Ask Us the Questions
As you consider your end-of-the-year charitable giving, I hope you will consider CHADD. We depend on our 14,000 members and individual donors to finance our core staff and operations. We supplement these operations with third-party funds, our annual conference, and sales of products.
There are thousands of wonderful charitable organizations. If you are concerned with learning disability, developmental disability, mental health issues, and helping adults live a full and happy life, CHADD may be the place for an end-of-the-year gift. Our services and programs are described on our Web site (www.chadd.org). Our objective is to build a social movement that provides the supports that people need to be successful and happy.
Here are some questions you should ask any charity, and here are our answers:
1. Does the organization post its Internal Revenue Service 990 return on its Web site? They should, in order to meet charitable standards of public transparency. For CHADD's IRS 990, go to www.chadd.org and go to the "About CHADD" section and "Reports," or click here.
2. Does the organization use an independent auditor to annually analyze the financial integrity of its financial affairs and is the audit available to the public? CHADD has an independent financial audit by Squire, Lemkin, and O'Brien. Because we post the IRS 990 return on our Web site, we do not post the very similar audit. But the audit is available upon request.
3. Does the organization tell you how much of their expenses are spent for programs, how much for management, and how much for fundraising? These data are included in the IRS 990. For CHADD, in the last fiscal year (which ended June 30, 2007), 83.45% of our expenditures were devoted to services and programs for persons with AD/HD and related disorders. We spent 9.78% to manage and have the board govern the association and we spent 6.76% on fundraising.
4. Does the organization meet independent national standards of accountability for nonprofit organizations? CHADD does. We not only meet the federal government's Combined Federal Campaign standards, but we meet the more rigorous National Health Council Standards of Excellence for voluntary health agencies, and we meet the nation's gold standard for independent accountability—the Better Business Bureau Wise Giving Alliance certification.
5. Does the organization post its board of directors, professional advisory board members (if applicable), and annual reports on its Web site? We do; go to our Web site and see "About CHADD"; our annual report content and format meet the National Health Council and Better Business Bureau standards.
6. Does the organization receive corporate support and does it publicly report this support? CHADD does. This is not a requirement of the IRS, NHC, BBB, or CFC. We post a summary of total revenue support and the exact dollars and composition of our revenues from pharmaceutical corporations (see www.chadd.org; go to "About CHADD" and "Reports" or click here. For the fiscal year that just ended, 26% of our revenue ($1,169,000) was derived from corporate donations. These funds support many important programs, including our summer camp scholarship program, young scientists scholarship award, recognition award for individual authors of Journal of Attention Deficit Disorders family-oriented articles, conferences, educational activities, and parent-to-parent training.
When CHADD recently objected to a news media commentary that AD/HD was a historic fraud because AD/HD does not exist, and when we recently objected to a school district sending home with all children in the district a warning that most children diagnosed with AD/HD don't have a problem and are labeled mentally ill, a leading anti-psychiatry group that denies the existence of all mental disorders, including AD/HD, branded CHADD a "front group misleading parents" because we receive financial support from pharmaceutical companies. We receive corporate financial support to build, grow, and support programs and services to persons with AD/HD and related services. We believe that America's corporations have a charitable obligation, and the CHADD board of directors ensures that these funds are completely independently administered by CHADD. We believe in diversification of revenue. Our board restricts pharmaceutical funding to no more than 30% of our revenue.
We publicize the published science of agencies of government and professional societies. We publicize the science-based multimodal treatment of AD/HD, defined for children and adolescents as parent and child education about the diagnosis and treatment, behavior management techniques, medication, and school programming and supports. Treatment should be tailored to the unique needs of each child and family. Medications are not effective for all children. Medication creates side effects for some children and some of the side effects are serious. But for the average or typical child with more substantial AD/HD, medication is part of a multimodal treatment program. This is not a "front" argument. This is a statement of the published science as stated by the unanimous consent of the CHADD professional advisory board.
Thank you for considering end-of-the-year financial support for the programs and services offered by CHADD.
Clarke
There are thousands of wonderful charitable organizations. If you are concerned with learning disability, developmental disability, mental health issues, and helping adults live a full and happy life, CHADD may be the place for an end-of-the-year gift. Our services and programs are described on our Web site (www.chadd.org). Our objective is to build a social movement that provides the supports that people need to be successful and happy.
Here are some questions you should ask any charity, and here are our answers:
1. Does the organization post its Internal Revenue Service 990 return on its Web site? They should, in order to meet charitable standards of public transparency. For CHADD's IRS 990, go to www.chadd.org and go to the "About CHADD" section and "Reports," or click here.
2. Does the organization use an independent auditor to annually analyze the financial integrity of its financial affairs and is the audit available to the public? CHADD has an independent financial audit by Squire, Lemkin, and O'Brien. Because we post the IRS 990 return on our Web site, we do not post the very similar audit. But the audit is available upon request.
3. Does the organization tell you how much of their expenses are spent for programs, how much for management, and how much for fundraising? These data are included in the IRS 990. For CHADD, in the last fiscal year (which ended June 30, 2007), 83.45% of our expenditures were devoted to services and programs for persons with AD/HD and related disorders. We spent 9.78% to manage and have the board govern the association and we spent 6.76% on fundraising.
4. Does the organization meet independent national standards of accountability for nonprofit organizations? CHADD does. We not only meet the federal government's Combined Federal Campaign standards, but we meet the more rigorous National Health Council Standards of Excellence for voluntary health agencies, and we meet the nation's gold standard for independent accountability—the Better Business Bureau Wise Giving Alliance certification.
5. Does the organization post its board of directors, professional advisory board members (if applicable), and annual reports on its Web site? We do; go to our Web site and see "About CHADD"; our annual report content and format meet the National Health Council and Better Business Bureau standards.
6. Does the organization receive corporate support and does it publicly report this support? CHADD does. This is not a requirement of the IRS, NHC, BBB, or CFC. We post a summary of total revenue support and the exact dollars and composition of our revenues from pharmaceutical corporations (see www.chadd.org; go to "About CHADD" and "Reports" or click here. For the fiscal year that just ended, 26% of our revenue ($1,169,000) was derived from corporate donations. These funds support many important programs, including our summer camp scholarship program, young scientists scholarship award, recognition award for individual authors of Journal of Attention Deficit Disorders family-oriented articles, conferences, educational activities, and parent-to-parent training.
When CHADD recently objected to a news media commentary that AD/HD was a historic fraud because AD/HD does not exist, and when we recently objected to a school district sending home with all children in the district a warning that most children diagnosed with AD/HD don't have a problem and are labeled mentally ill, a leading anti-psychiatry group that denies the existence of all mental disorders, including AD/HD, branded CHADD a "front group misleading parents" because we receive financial support from pharmaceutical companies. We receive corporate financial support to build, grow, and support programs and services to persons with AD/HD and related services. We believe that America's corporations have a charitable obligation, and the CHADD board of directors ensures that these funds are completely independently administered by CHADD. We believe in diversification of revenue. Our board restricts pharmaceutical funding to no more than 30% of our revenue.
We publicize the published science of agencies of government and professional societies. We publicize the science-based multimodal treatment of AD/HD, defined for children and adolescents as parent and child education about the diagnosis and treatment, behavior management techniques, medication, and school programming and supports. Treatment should be tailored to the unique needs of each child and family. Medications are not effective for all children. Medication creates side effects for some children and some of the side effects are serious. But for the average or typical child with more substantial AD/HD, medication is part of a multimodal treatment program. This is not a "front" argument. This is a statement of the published science as stated by the unanimous consent of the CHADD professional advisory board.
Thank you for considering end-of-the-year financial support for the programs and services offered by CHADD.
Clarke
Tuesday, November 27, 2007
Learning Continues, Even During Thanksgiving
My son Andrew, age 17, was home from school for eight days for Thanksgiving. This was a wonderful week. Andrew played with his longtime best buddy. He slept late. He enjoyed watching sports events and playing electronic games. He enjoyed visiting with various cousins for four days. We greeted at church. We caught up on his thoughts. He (and I) ate lots of goodies. And he had to prepare a two-page editorial commentary on a current news event. It dampened the holiday a little, but learning never ends.
When we think back on the most positive experiences in life, there are always the great teachers. When we think about the most miserable experiences that we survived, for many of us there are teachers. This is so evident and important that the National Alliance on Mental Illness (NAMI) operates a program titled, Parents and Teachers as Allies (PTasA). CHADD is in the process of translating our successful Educators' Manual on AD/HD into a six-hour, three-component in-service training program for teachers. A team of volunteers developed the manual and is developing the in-service program. Charitable organizations are so fortunate to have volunteers contributing their passion and knowledge without pay. We will be field testing the in-service program during 2008 and will officially launch it at our next annual conference, to be held in Anaheim, November 13-15, 2008.
Two weeks ago we held our annual conference outside Washington, DC, with 1,600 total attendees. We took roughly 600 attendees to Capitol Hill to meet with their members of Congress and they focused on the reality of living with AD/HD. We sold out our 20th anniversary gala dinner at 680 people; the event featured James Carville speaking about the need for a truly individualized education that respects the learning needs and style of every child, and talking about his AD/HD and his daughter's AD/HD. Saturday sessions focused on the needs of teachers to be successful in the classroom: “Behavioral Strategies for the Classroom,” “Using Evidence-Based Strategies to Teach the Student with AD/HD and Learning Disabilities,” “Teens Talk: A Training Program for Middle and High School Teachers,” and “Family-School Success,” among others. During the closing plenary session, Bob Brooks, PhD, spoke on “Discarding Myths, Nurturing Resilience” through a strengths-based approach to raising and educating children. Bob is always a wonderfully inspiring speaker. I told him in a thank-you note that I wish every teacher in America could hear his presentation and be personally tutored by him. Staying focused on what each child does well really builds self-esteem.
I hope you enjoyed your Thanksgiving. I did.
Clarke
When we think back on the most positive experiences in life, there are always the great teachers. When we think about the most miserable experiences that we survived, for many of us there are teachers. This is so evident and important that the National Alliance on Mental Illness (NAMI) operates a program titled, Parents and Teachers as Allies (PTasA). CHADD is in the process of translating our successful Educators' Manual on AD/HD into a six-hour, three-component in-service training program for teachers. A team of volunteers developed the manual and is developing the in-service program. Charitable organizations are so fortunate to have volunteers contributing their passion and knowledge without pay. We will be field testing the in-service program during 2008 and will officially launch it at our next annual conference, to be held in Anaheim, November 13-15, 2008.
Two weeks ago we held our annual conference outside Washington, DC, with 1,600 total attendees. We took roughly 600 attendees to Capitol Hill to meet with their members of Congress and they focused on the reality of living with AD/HD. We sold out our 20th anniversary gala dinner at 680 people; the event featured James Carville speaking about the need for a truly individualized education that respects the learning needs and style of every child, and talking about his AD/HD and his daughter's AD/HD. Saturday sessions focused on the needs of teachers to be successful in the classroom: “Behavioral Strategies for the Classroom,” “Using Evidence-Based Strategies to Teach the Student with AD/HD and Learning Disabilities,” “Teens Talk: A Training Program for Middle and High School Teachers,” and “Family-School Success,” among others. During the closing plenary session, Bob Brooks, PhD, spoke on “Discarding Myths, Nurturing Resilience” through a strengths-based approach to raising and educating children. Bob is always a wonderfully inspiring speaker. I told him in a thank-you note that I wish every teacher in America could hear his presentation and be personally tutored by him. Staying focused on what each child does well really builds self-esteem.
I hope you enjoyed your Thanksgiving. I did.
Clarke
Monday, November 19, 2007
AD/HD is Real and the Earth is Round
MSN UK News Editor Laura J. Snook recently wrote an opinion piece on AD/HD entitled “High on life: The biggest health care fraud in history.” Below is CHADD’s response to Ms. Snook’s misinformation, which we posted on the MSN UK Web site.
AD/HD is Real and the Earth is Round
Laura Snook’s piece is a prime example of the types of misinformation that can be disseminated on the Internet through what are otherwise reputable Web sites. Practically all of the assertions that she makes in this story about AD/HD are inaccurate and completely unscientific.
It is worth noting that Ms. Snook chose to reach back several thousand years to quote Hippocrates about AD/HD, when she could have highlighted the mountain of evidence in recent years from government and academic researchers that shows AD/HD is a real neurobiological disorder that can have devastating consequences if left untreated.
In fact, Ms. Snook did not reference one single researcher who has had his or her work on the subject published in a peer-reviewed journal. Instead, she relied on anecdotal information and urban legends (We’re drugging the Tom Sawyers again!) to make her point. It’s quite interesting that even she unwittingly provides numbers in her story that clearly show that a considerable number of people go untreated.
True, many children can at times demonstrate inattentiveness, restlessness, forgetfulness, and hyperactivity. That is not necessarily AD/HD. But for millions of children these symptoms can become so severe that they can lead to, among other things, school failure, car accidents and even incarceration. Later in life they can interfere with employment, relationships, and general well-being.
As the father of a 17-year-old son with AD/HD and co-occurring challenges, I know the disorder can make every day a struggle for happiness and success. Ms. Snook declares that she will never be a parent, but those of us with children want what is best for them. Professional, community, faith-based, family, and peer supports are helpful to us. Ideological declarations about Hippocrates, on the other hand, are not.
The best in scientific research, including recent study findings, shows us that a combination of medication, behavioral management, parent/child education about the disorder, educational adaptations, and parent training are all important to effectively treating the disorder.
Anyone interested in information that is more recent than vague comments from over 2,000 years ago, can visit the Web sites of the following U.S. organizations and government institutions: CHADD, the National Resource Center on AD/HD, a program of CHADD, the National Alliance on Mental Illness, the National Institute of Mental Health, and the Centers for Disease Control and Prevention.
In the meantime, it is our hope that Ms. Snook will refrain from relying on antiquated information, urban legends, and emotional arguments to address questions that have been answered by recent scientific studies. We’re afraid she will soon be quoting people from the Middle Ages about the shape of the earth!
E. Clarke Ross, DPA
Chief Executive Officer
Children & Adults with Attention-Deficit/Hyperactivity Disorder www.chadd.org
AD/HD is Real and the Earth is Round
Laura Snook’s piece is a prime example of the types of misinformation that can be disseminated on the Internet through what are otherwise reputable Web sites. Practically all of the assertions that she makes in this story about AD/HD are inaccurate and completely unscientific.
It is worth noting that Ms. Snook chose to reach back several thousand years to quote Hippocrates about AD/HD, when she could have highlighted the mountain of evidence in recent years from government and academic researchers that shows AD/HD is a real neurobiological disorder that can have devastating consequences if left untreated.
In fact, Ms. Snook did not reference one single researcher who has had his or her work on the subject published in a peer-reviewed journal. Instead, she relied on anecdotal information and urban legends (We’re drugging the Tom Sawyers again!) to make her point. It’s quite interesting that even she unwittingly provides numbers in her story that clearly show that a considerable number of people go untreated.
True, many children can at times demonstrate inattentiveness, restlessness, forgetfulness, and hyperactivity. That is not necessarily AD/HD. But for millions of children these symptoms can become so severe that they can lead to, among other things, school failure, car accidents and even incarceration. Later in life they can interfere with employment, relationships, and general well-being.
As the father of a 17-year-old son with AD/HD and co-occurring challenges, I know the disorder can make every day a struggle for happiness and success. Ms. Snook declares that she will never be a parent, but those of us with children want what is best for them. Professional, community, faith-based, family, and peer supports are helpful to us. Ideological declarations about Hippocrates, on the other hand, are not.
The best in scientific research, including recent study findings, shows us that a combination of medication, behavioral management, parent/child education about the disorder, educational adaptations, and parent training are all important to effectively treating the disorder.
Anyone interested in information that is more recent than vague comments from over 2,000 years ago, can visit the Web sites of the following U.S. organizations and government institutions: CHADD, the National Resource Center on AD/HD, a program of CHADD, the National Alliance on Mental Illness, the National Institute of Mental Health, and the Centers for Disease Control and Prevention.
In the meantime, it is our hope that Ms. Snook will refrain from relying on antiquated information, urban legends, and emotional arguments to address questions that have been answered by recent scientific studies. We’re afraid she will soon be quoting people from the Middle Ages about the shape of the earth!
E. Clarke Ross, DPA
Chief Executive Officer
Children & Adults with Attention-Deficit/Hyperactivity Disorder www.chadd.org
Wednesday, October 24, 2007
Promoting Wellness
A few weeks ago our president-elect, Marie Paxson, attended a U.S. Center for Mental Health Services (CMHS) conference on promoting wellness for persons with mental illness. The conference is developing a national plan, vision, and pledge for promoting wellness for persons with mental illness. Components of wellness include optimal health, happiness, recovery, and a full and satisfying life. CHADD will be involved in this promotion.
A major objective of the President's New Freedom Commission on Mental Health is the promotion of "recovery" from mental illness. During the coming months CHADD will begin, with our professional advisory board and adults with AD/HD, to conceptualize the application of the "recovery" philosophy to AD/HD. In 2006, CMHS defined "mental health recovery" as "a journey of healing and transformation enabling a person with a mental health problem to live a meaningful life in a community of his or her choice while striving to achieve his or her full potential."
Even though we are overwhelmed with preparing for our annual conference—including taking a thousand people to the U.S. Congress to discuss the reality and meaning of AD/HD—celebrating our 20 years with many of the CHADD Hall of Fame scientists, and including this year a special track for teachers, our communications staff is working on the December Attention magazine. One of the articles discusses the CHADD teen program with the U.S. Golf Association and Professional Golfers Association to teach teens to play golf, in order to promote fun, self-esteem, as well as dealing with the symptoms of AD/HD. This is an effort to promote wellness.
This coming Sunday, a member of CHADD’s national board of directors—Rob Tudisco—will participate in the Washington, DC Marine Corps Marathon. Rob is running under a CHADD banner to raise funds for the CHADD Matt Cohen Membership Support Fund. In his New York community, Rob is also organizing a running program for children with AD/HD. Here is another effort to promote wellness.
This past weekend my wife and I participated in fall parents' weekend at our son’s school. Andrew just turned 17. One of the topics we discussed was Andrew's participation in a July 2008 school-based summer program. For the past two years CHADD has been fortunate to have corporate support to operate a summer camp scholarship program, in order to promote happiness, skills, and wellness. A previous CEO blog (July 5, 2007) discussed the value of summer programs. A school-based summer program is based on the assumption of the "cycle of regression of skills," both academic and social, while beginning to deal with vocational and independent living skill development. For many kids with special needs, a three-month summer lacking structured support results in loss of learned skills. A structured six-week program, in the middle of the three months of summer, at a school location with friends and known faculty, is intended to continue consistency in academic and social development, while having fun—another example of promoting wellness.
Many of you know that Andrew and I love baseball. During the past year, we made three trips to see professional baseball, including to spring training. We bond through this enjoyment and it promotes our wellness.
Raising a child with special needs is a challenge. We have the professional treatment needs. We have educational support and accommodation needs. We need a healthy and stable array of community supports, such as family, community, and for many of us, faith communities. We need activities to promote wellness and a few examples are described here. CHADD will continue to promote wellness, including safe and secure environments and good healthy nutrition, as we also advocate professional and school-based supports.
I hope to see many of you at our annual conference. I am pleased to report that, as of today, in the number of registrations we are ahead of last year at this point in time, and CHADD's 20th anniversary conference should be exciting and fun.
Clarke
A major objective of the President's New Freedom Commission on Mental Health is the promotion of "recovery" from mental illness. During the coming months CHADD will begin, with our professional advisory board and adults with AD/HD, to conceptualize the application of the "recovery" philosophy to AD/HD. In 2006, CMHS defined "mental health recovery" as "a journey of healing and transformation enabling a person with a mental health problem to live a meaningful life in a community of his or her choice while striving to achieve his or her full potential."
Even though we are overwhelmed with preparing for our annual conference—including taking a thousand people to the U.S. Congress to discuss the reality and meaning of AD/HD—celebrating our 20 years with many of the CHADD Hall of Fame scientists, and including this year a special track for teachers, our communications staff is working on the December Attention magazine. One of the articles discusses the CHADD teen program with the U.S. Golf Association and Professional Golfers Association to teach teens to play golf, in order to promote fun, self-esteem, as well as dealing with the symptoms of AD/HD. This is an effort to promote wellness.
This coming Sunday, a member of CHADD’s national board of directors—Rob Tudisco—will participate in the Washington, DC Marine Corps Marathon. Rob is running under a CHADD banner to raise funds for the CHADD Matt Cohen Membership Support Fund. In his New York community, Rob is also organizing a running program for children with AD/HD. Here is another effort to promote wellness.
This past weekend my wife and I participated in fall parents' weekend at our son’s school. Andrew just turned 17. One of the topics we discussed was Andrew's participation in a July 2008 school-based summer program. For the past two years CHADD has been fortunate to have corporate support to operate a summer camp scholarship program, in order to promote happiness, skills, and wellness. A previous CEO blog (July 5, 2007) discussed the value of summer programs. A school-based summer program is based on the assumption of the "cycle of regression of skills," both academic and social, while beginning to deal with vocational and independent living skill development. For many kids with special needs, a three-month summer lacking structured support results in loss of learned skills. A structured six-week program, in the middle of the three months of summer, at a school location with friends and known faculty, is intended to continue consistency in academic and social development, while having fun—another example of promoting wellness.
Many of you know that Andrew and I love baseball. During the past year, we made three trips to see professional baseball, including to spring training. We bond through this enjoyment and it promotes our wellness.
Raising a child with special needs is a challenge. We have the professional treatment needs. We have educational support and accommodation needs. We need a healthy and stable array of community supports, such as family, community, and for many of us, faith communities. We need activities to promote wellness and a few examples are described here. CHADD will continue to promote wellness, including safe and secure environments and good healthy nutrition, as we also advocate professional and school-based supports.
I hope to see many of you at our annual conference. I am pleased to report that, as of today, in the number of registrations we are ahead of last year at this point in time, and CHADD's 20th anniversary conference should be exciting and fun.
Clarke
Friday, October 12, 2007
Sorting Out Messages About Parenting
Numerous studies have documented the stress and unique challenges of raising a child with special needs. As the father of a seventeen-year-old with the inattentive form of AD/HD and co-occurring disorders, I can share stories. We want what every parent wants for their child—success in meeting society's expectations and happiness in daily life. The disability of the child complicates the achievement of these objectives. The views of others about us as parents frequently complicate our work.
In the last two weeks, I have experienced several different messages about being a parent of a child with AD/HD. These experiences reinforce the added burden we face as parents in dealing with these challenges.
Two nights ago I attended my local CHADD chapter monthly meeting. A university research expert spoke about the impact of parental mental health on assisting children with AD/HD. It was an excellent presentation, although I was initially put off by the researcher's need for professional jargon, as in discussing the "psychopathology" of us parents. Researchers just don't appreciate how off-putting is such jargon, which usually sends a negative message, to real persons with AD/HD and their family members.
One message is the added difficulty parents who have AD/HD have in parenting a child with AD/HD. The researcher described the interplay between parenting expectations and needs, parents with mental health challenges, children with AD/HD, and other factors such as marital problems. The researcher also discussed the prevalence of maternal depression and how this further complicates parenting. As with most research on parents, most of the parents studied were the mothers.
The researcher did not discuss the role of natural supports—such as family, community, and faith. Neither did she discuss concepts of resilience. But we heard the message of added difficulties for some parents with their own challenges. The speaker reviewed a program to help mothers with depression. Its four interventions are ones that would help most of us who are not depressed: relaxation, increase in pleasant activities, constructive thinking orientation, and social skills and assertiveness training.
The great thing about CHADD support groups is the opportunity for parent peers (and other age-group peers) to chat together in groups about what they heard and how what they heard relates to their own lived experiences. This is a virtue and strength of our family movement.
Two weeks ago CHADD wrote the editor of the Harvard Mental Health Letter challenging their observation that parents cause hyperactivity in their child. And this was Harvard University, one of the world's leading research programs. I responded by writing a letter to their editor, observing that: "Parents are not to blame for their children’s attention-deficit/hyperactivity disorder, nor for any other neurologically-based disability. Parenting styles, while they do vary, are not the cause of AD/HD. Parenting styles can complicate and undermine consistent and successful behavior management programs. Statements such as the above reinforce the stigma of AD/HD and the stereotype claiming children with AD/HD have poor parents."
Last Friday, at 4:00 pm, before leaving for a holiday weekend (I missed the holiday), we learned from one of our CHADD Virginia groups that the Portsmouth School District had sent home with each of their over 14,000 students a "WARNING" statement that "Misdiagnosing and Psychiatric Drugging of Children are Violations of Human Rights."
Imagine being a child with AD/HD or any mental disorder and getting a note to take to your parents stating that medications to treat AD/HD cause "suicidal behavior, psychosis, hostility, aggression, heart problems, disturbed sexual function, and headaches" with no understanding of the frequency of possible side effects and benefits of medication treatment. Imagine being a child or parent and reading: "When you agree that you believe your child has AD/HD, you are agreeing that you believe the child is mentally ill."
CHADD is working with a group of its sister national organizations to share science-based information with the Portsmouth school authorities. Science—statements by the Centers for Disease Control and Prevention, National Institute of Mental Health, U.S. Surgeon General, American Medical Association, American Academy of Pediatrics, and American Academy of Child and Adolescent Psychiatry, among others. We will post our statement on our Web site. Imagine parents and children receiving these anti-psychiatry messages from your school. We obviously have much work to do to help educate the public about AD/HD.
Several years ago I testified before a U.S. House of Representatives committee on the family perspective of living with AD/HD. That hearing was organized by an anti-psychiatry movement leader on behalf of a member of Congress. The anti-psychiatry groups were going on and on with their standard messages—AD/HD is made up and a fraud, medications ruin a person's brain for life, and so forth, when a soft-spoken member of the House, Virginia Republican Jo Ann Davis, spoke up for the first time in a public forum about AD/HD.
Rep. Davis did not confront or challenge the anti-psychiatry thinkers, but she did publicly reveal that one of her sons was diagnosed many years ago with AD/HD and had been successfully treated. She said that for her family, a correct diagnosis and professional treatment made a difference in helping her son become a success. Upon her revelation, the dynamic of the entire hearing changed. The next year she co-hosted a CHADD briefing for members of the House on the published science of AD/HD. Sadly, on Saturday, I read that Rep. Davis died last week of breast cancer. CHADD offers our respect and condolences to the Davis family.
We receive many different messages about being a parent of a child with AD/HD. These are just a few messages I experienced in the last two weeks. CHADD works to build public understanding and a support network to make it less burdensome to parent a child with AD/HD. We can't eliminate all challenges, but we can hopefully make it a little less burdensome. I wish you well in dealing with your own stress. It is daunting.
Clarke
In the last two weeks, I have experienced several different messages about being a parent of a child with AD/HD. These experiences reinforce the added burden we face as parents in dealing with these challenges.
Two nights ago I attended my local CHADD chapter monthly meeting. A university research expert spoke about the impact of parental mental health on assisting children with AD/HD. It was an excellent presentation, although I was initially put off by the researcher's need for professional jargon, as in discussing the "psychopathology" of us parents. Researchers just don't appreciate how off-putting is such jargon, which usually sends a negative message, to real persons with AD/HD and their family members.
One message is the added difficulty parents who have AD/HD have in parenting a child with AD/HD. The researcher described the interplay between parenting expectations and needs, parents with mental health challenges, children with AD/HD, and other factors such as marital problems. The researcher also discussed the prevalence of maternal depression and how this further complicates parenting. As with most research on parents, most of the parents studied were the mothers.
The researcher did not discuss the role of natural supports—such as family, community, and faith. Neither did she discuss concepts of resilience. But we heard the message of added difficulties for some parents with their own challenges. The speaker reviewed a program to help mothers with depression. Its four interventions are ones that would help most of us who are not depressed: relaxation, increase in pleasant activities, constructive thinking orientation, and social skills and assertiveness training.
The great thing about CHADD support groups is the opportunity for parent peers (and other age-group peers) to chat together in groups about what they heard and how what they heard relates to their own lived experiences. This is a virtue and strength of our family movement.
Two weeks ago CHADD wrote the editor of the Harvard Mental Health Letter challenging their observation that parents cause hyperactivity in their child. And this was Harvard University, one of the world's leading research programs. I responded by writing a letter to their editor, observing that: "Parents are not to blame for their children’s attention-deficit/hyperactivity disorder, nor for any other neurologically-based disability. Parenting styles, while they do vary, are not the cause of AD/HD. Parenting styles can complicate and undermine consistent and successful behavior management programs. Statements such as the above reinforce the stigma of AD/HD and the stereotype claiming children with AD/HD have poor parents."
Last Friday, at 4:00 pm, before leaving for a holiday weekend (I missed the holiday), we learned from one of our CHADD Virginia groups that the Portsmouth School District had sent home with each of their over 14,000 students a "WARNING" statement that "Misdiagnosing and Psychiatric Drugging of Children are Violations of Human Rights."
Imagine being a child with AD/HD or any mental disorder and getting a note to take to your parents stating that medications to treat AD/HD cause "suicidal behavior, psychosis, hostility, aggression, heart problems, disturbed sexual function, and headaches" with no understanding of the frequency of possible side effects and benefits of medication treatment. Imagine being a child or parent and reading: "When you agree that you believe your child has AD/HD, you are agreeing that you believe the child is mentally ill."
CHADD is working with a group of its sister national organizations to share science-based information with the Portsmouth school authorities. Science—statements by the Centers for Disease Control and Prevention, National Institute of Mental Health, U.S. Surgeon General, American Medical Association, American Academy of Pediatrics, and American Academy of Child and Adolescent Psychiatry, among others. We will post our statement on our Web site. Imagine parents and children receiving these anti-psychiatry messages from your school. We obviously have much work to do to help educate the public about AD/HD.
Several years ago I testified before a U.S. House of Representatives committee on the family perspective of living with AD/HD. That hearing was organized by an anti-psychiatry movement leader on behalf of a member of Congress. The anti-psychiatry groups were going on and on with their standard messages—AD/HD is made up and a fraud, medications ruin a person's brain for life, and so forth, when a soft-spoken member of the House, Virginia Republican Jo Ann Davis, spoke up for the first time in a public forum about AD/HD.
Rep. Davis did not confront or challenge the anti-psychiatry thinkers, but she did publicly reveal that one of her sons was diagnosed many years ago with AD/HD and had been successfully treated. She said that for her family, a correct diagnosis and professional treatment made a difference in helping her son become a success. Upon her revelation, the dynamic of the entire hearing changed. The next year she co-hosted a CHADD briefing for members of the House on the published science of AD/HD. Sadly, on Saturday, I read that Rep. Davis died last week of breast cancer. CHADD offers our respect and condolences to the Davis family.
We receive many different messages about being a parent of a child with AD/HD. These are just a few messages I experienced in the last two weeks. CHADD works to build public understanding and a support network to make it less burdensome to parent a child with AD/HD. We can't eliminate all challenges, but we can hopefully make it a little less burdensome. I wish you well in dealing with your own stress. It is daunting.
Clarke
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