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
Wednesday, October 24, 2007
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
Thursday, September 27, 2007
Contributing to a Social Movement
Did you ever have one of those periods of time when you constantly are on the run, you are accomplishing a lot, and you are exhausted? Welcome to the CHADD national office right now.
In addition to preparing for our annual international conference—which typically draws 1,200-1,400 attendees—preparations for this year’s conference include organizing appointments for all attendees with their U.S. Congressional delegations, and organizing and hosting our 20th anniversary gala dinner celebration. Almost every week during the past month, major academic studies on AD/HD have been published. CHADD must analyze and help publicize these studies, and respond to media portrayals. Thousands of inquiries pour into our National Resource Center on AD/HD. We are constantly striving to increase our services to our members and our community affiliate leaders. We just made the Web site login process easier. We are carefully preparing our regular communications and public education materials, such as Attention magazine, CHADDNotes, and NRC News. We are conducting a forum entirely in Spanish for a targeted community. Congress is considering legislation that would impact AD/HD and CHADD is actively involved. We are committed, active, and tired.
This year we mark CHADD’s twentieth anniversary and celebrate the tremendous change over the last two decades for people living with attention-deficit/hyperactivity disorder (AD/HD). Thanks to an incredible social movement, made up of people like you, we have influenced public policy, shaped public perceptions and successfully raised awareness about a disorder that, if left untreated, can have devastating consequences.
Despite the progress we have realized, we nonetheless have an incredible amount of work ahead of us. There is a formidable anti-mental health campaign that would like nothing better than to undo all of our accomplishments and turn the clock back on how our country views and deals with people with AD/HD and other mental health disorders. To beat back many of these efforts and to continue to move ahead with our science-based message, we need your help.
Want an example of some of our challenges? Consider this…
This month the Archives of Pediatrics & Adolescent Medicine features a study (similar to findings from studies produced by the CDC and Mayo Clinic) that reports a prevalence rate of 8.7 percent for children 8 to 15 years old. Disturbingly, the research also found that fewer than half of those with the disorder were diagnosed and receiving treatment. Because the consequences of untreated AD/HD are potentially so severe, this study is an important reminder that we must continue to raise awareness with medical professionals, the public, policymakers and educators.
Yet, to look at the bills being proposed and debated in statehouses across the country, one could easily walk away with a different impression altogether. Many state legislatures are actually considering and voting on bills that would have the effect of preventing teachers from communicating to parents about behavior and learning patterns they observe in the classroom. Teachers, ever fearful of lawsuits, are becoming increasingly guarded about what they report to parents. Unfortunately, this could prevent countless parents of children with AD/HD from seeking a medical evaluation for their children.
CHADD is working strategically with our sister organizations to educate policymakers in key states through letters, one-on-one conversations, briefings and other methods. We are also reaching out to journalists in these states by proposing story ideas, submitting opinion/editorial pieces and providing comments on the record. We are reaching out to educators with information that will inform their efforts, and we are raising public awareness, both in these key states and nationally.
This is just one part of what we do each day to make this country an even better place for people with AD/HD. But we can’t do it without your help. You are an extremely important part of this social movement. We need you to actively participate in your local CHADD chapter. We need you to raise your voice—write a letter to your local newspaper and actively communicate with your local leaders. And we need your generous financial support as we move ahead. Please consider making a tax-deductible donation to CHADD today.
This is truly an historic time for CHADD. Thank you for the very important role you are playing in a social movement that will impact the lives of people affected by AD/HD for generations to come.
Clarke
In addition to preparing for our annual international conference—which typically draws 1,200-1,400 attendees—preparations for this year’s conference include organizing appointments for all attendees with their U.S. Congressional delegations, and organizing and hosting our 20th anniversary gala dinner celebration. Almost every week during the past month, major academic studies on AD/HD have been published. CHADD must analyze and help publicize these studies, and respond to media portrayals. Thousands of inquiries pour into our National Resource Center on AD/HD. We are constantly striving to increase our services to our members and our community affiliate leaders. We just made the Web site login process easier. We are carefully preparing our regular communications and public education materials, such as Attention magazine, CHADDNotes, and NRC News. We are conducting a forum entirely in Spanish for a targeted community. Congress is considering legislation that would impact AD/HD and CHADD is actively involved. We are committed, active, and tired.
This year we mark CHADD’s twentieth anniversary and celebrate the tremendous change over the last two decades for people living with attention-deficit/hyperactivity disorder (AD/HD). Thanks to an incredible social movement, made up of people like you, we have influenced public policy, shaped public perceptions and successfully raised awareness about a disorder that, if left untreated, can have devastating consequences.
Despite the progress we have realized, we nonetheless have an incredible amount of work ahead of us. There is a formidable anti-mental health campaign that would like nothing better than to undo all of our accomplishments and turn the clock back on how our country views and deals with people with AD/HD and other mental health disorders. To beat back many of these efforts and to continue to move ahead with our science-based message, we need your help.
Want an example of some of our challenges? Consider this…
This month the Archives of Pediatrics & Adolescent Medicine features a study (similar to findings from studies produced by the CDC and Mayo Clinic) that reports a prevalence rate of 8.7 percent for children 8 to 15 years old. Disturbingly, the research also found that fewer than half of those with the disorder were diagnosed and receiving treatment. Because the consequences of untreated AD/HD are potentially so severe, this study is an important reminder that we must continue to raise awareness with medical professionals, the public, policymakers and educators.
Yet, to look at the bills being proposed and debated in statehouses across the country, one could easily walk away with a different impression altogether. Many state legislatures are actually considering and voting on bills that would have the effect of preventing teachers from communicating to parents about behavior and learning patterns they observe in the classroom. Teachers, ever fearful of lawsuits, are becoming increasingly guarded about what they report to parents. Unfortunately, this could prevent countless parents of children with AD/HD from seeking a medical evaluation for their children.
CHADD is working strategically with our sister organizations to educate policymakers in key states through letters, one-on-one conversations, briefings and other methods. We are also reaching out to journalists in these states by proposing story ideas, submitting opinion/editorial pieces and providing comments on the record. We are reaching out to educators with information that will inform their efforts, and we are raising public awareness, both in these key states and nationally.
This is just one part of what we do each day to make this country an even better place for people with AD/HD. But we can’t do it without your help. You are an extremely important part of this social movement. We need you to actively participate in your local CHADD chapter. We need you to raise your voice—write a letter to your local newspaper and actively communicate with your local leaders. And we need your generous financial support as we move ahead. Please consider making a tax-deductible donation to CHADD today.
This is truly an historic time for CHADD. Thank you for the very important role you are playing in a social movement that will impact the lives of people affected by AD/HD for generations to come.
Clarke
Wednesday, September 19, 2007
Every Day is AD/HD Awareness Day
As we head into fall, there are a number of accomplishments and projects in the works I want you to know about. Here is a quick sampling of ways we're raising awareness about AD/HD.
Over the soundwaves
The findings of a recent study, released in the Archives of Pediatrics & Adolescent Medicine, showed an AD/HD prevalence of almost 9 percent among children 8 to 15 years old. The findings were consistent with research produced by the Centers for Disease Control and Prevention (CDC) and the Mayo Clinic. Because there was so much interest from the media about this topic, I taped a couple of comments for an audio news release (ANR) that was disseminated to 11,300 radios stations worldwide. Be sure to click here and listen to my comments. I made sure I included the CHADD Web site address.
We reached a whopping 2,253,650 listeners. The soundbite was played by local radio stations across the country and by the following national radio networks:
· ABC Radio Network
· Washington Audio News Distribution (WAND) System
· CNN Radio Network
· American Urban Radio Network (An African-American owned radio station)
I was also interviewed by the Orlando Sun Sentinel and Mental Health Weekly about the study.
On television and in print media
Our communications department worked closely with the producers of CBS Evening News on a story about the study on AD/HD prevalence. We contacted the lead researcher on the study and invited her to take part in a special Ask the Expert chat. Excerpts will appear in December’s Attention magazine.
We worked with USA Today columnist Kim Painter on a story about what some of the latest research findings mean for people affected by AD/HD. The story appeared in that newspaper on September 17, close to AD/HD Awareness Day. CHADD board president Anne Teeter Ellison was quoted, and the article also featured AJ Copeland and his mother Tamara Copeland of Washington, DC. The communications department facilitated the interview. A link to the CHADD Web site will be included in the article. We will be sure to include this article in AD/HD in the News.
VideoCHADD
Please take a look at the latest edition of VideoCHADD, which features our board president Anne Teeter Ellison promoting this year’s 20th Anniversary Hall of Fame Conference. This is a very creative way to promote the conference, and it keeps our Web site fresh for visitors. Links placed near the video take people to more information about the conference, the gala, and the Morning on the Hill. We plan to make updates to the section regularly.
YouTube and Google Videos
CHADD is now on YouTube and Google Video. As people search for key words (such as AD/HD, CHADD, etc.) on these sites, they will pull up videos of science-based information posted by CHADD. The world of online videos through YouTube and Google Videos is a new frontier for us. But it will certainly be an effective way to let the public, particularly younger people, know about CHADD, our conference and perhaps membership benefits.
The Leadership Blog
I am glad you’ve found my blog. We’re trying to reach people in new and innovative ways, and we feel the blog is an effective way to do so. Each week there is a new topic. I have noticed that some people have begun linking from their blog to mine. It’s nice to know these connections are being made, and people feel connected to CHADD.
Attention magazine re-design
The October issue of Attention magazine will feature a new look. We have been extremely impressed with the creativity and professionalism of our new designers, and we think you will agree that the new look is fresh, clean, and visually appealing. The purpose of the new design is to more effectively share information with busy individuals and families. We look forward to receiving your feedback.
Homeschooling Parent magazine
We authored a feature story on AD/HD for Homeschooling Parent magazine, which was released in late August/early September. We also promoted membership and conference in the publication. There is a real need for more science-based information in the homeschooling arena. It is nice that we’re getting this kind of publicity from one of the major publications read by homeschooling parents. Hopefully, we will attract more members from this effort as well.
Addressing undiagnosed AD/HD
CHADD joined forces with Congresswoman Sheila Jackson-Lee (D-Texas) and former CHADD board member and current coordinator Karran Harper Royal to produce a video that pulls at the heartstrings, while highlighting what the research tells us. The video was presented to the National Medical Association section on psychiatry and behavioral science in August. Numerous people have requested copies of the video. It will be shown to an annual meeting of Women in Government next week, and we have plan to disseminate via e-mail to staff members in the U.S. House of Representatives in the next several weeks. The video will also be posted in VideoCHADD in the coming days.
Letters to governors
State legislatures are increasingly considering bills that could impede communication between teachers and parents about students' behavior and learning habits in the classroom. As a result, CHADD has focused a great deal of attention on getting our message out to state legislators. For AD/HD Awareness Day, we sent letters to the governors of all 50 states. In the letter, I talked about the importance of receiving an evaluation and treatment for AD/HD. I also provided the governors with resources, including our public policy director’s contact information and our Web site URL, so they can seek more information from us. Unfortunately, given the timing, we shared the letter with our affiliate leaders a day after writing the governors. We apologize for this timing quirk.
We are working hard to produce science-based information and reach key audiences in an effort to raise awareness about AD/HD. Thank you for allowing me to share just a sampling of the work that is being done at CHADD.
Clarke
Over the soundwaves
The findings of a recent study, released in the Archives of Pediatrics & Adolescent Medicine, showed an AD/HD prevalence of almost 9 percent among children 8 to 15 years old. The findings were consistent with research produced by the Centers for Disease Control and Prevention (CDC) and the Mayo Clinic. Because there was so much interest from the media about this topic, I taped a couple of comments for an audio news release (ANR) that was disseminated to 11,300 radios stations worldwide. Be sure to click here and listen to my comments. I made sure I included the CHADD Web site address.
We reached a whopping 2,253,650 listeners. The soundbite was played by local radio stations across the country and by the following national radio networks:
· ABC Radio Network
· Washington Audio News Distribution (WAND) System
· CNN Radio Network
· American Urban Radio Network (An African-American owned radio station)
I was also interviewed by the Orlando Sun Sentinel and Mental Health Weekly about the study.
On television and in print media
Our communications department worked closely with the producers of CBS Evening News on a story about the study on AD/HD prevalence. We contacted the lead researcher on the study and invited her to take part in a special Ask the Expert chat. Excerpts will appear in December’s Attention magazine.
We worked with USA Today columnist Kim Painter on a story about what some of the latest research findings mean for people affected by AD/HD. The story appeared in that newspaper on September 17, close to AD/HD Awareness Day. CHADD board president Anne Teeter Ellison was quoted, and the article also featured AJ Copeland and his mother Tamara Copeland of Washington, DC. The communications department facilitated the interview. A link to the CHADD Web site will be included in the article. We will be sure to include this article in AD/HD in the News.
VideoCHADD
Please take a look at the latest edition of VideoCHADD, which features our board president Anne Teeter Ellison promoting this year’s 20th Anniversary Hall of Fame Conference. This is a very creative way to promote the conference, and it keeps our Web site fresh for visitors. Links placed near the video take people to more information about the conference, the gala, and the Morning on the Hill. We plan to make updates to the section regularly.
YouTube and Google Videos
CHADD is now on YouTube and Google Video. As people search for key words (such as AD/HD, CHADD, etc.) on these sites, they will pull up videos of science-based information posted by CHADD. The world of online videos through YouTube and Google Videos is a new frontier for us. But it will certainly be an effective way to let the public, particularly younger people, know about CHADD, our conference and perhaps membership benefits.
The Leadership Blog
I am glad you’ve found my blog. We’re trying to reach people in new and innovative ways, and we feel the blog is an effective way to do so. Each week there is a new topic. I have noticed that some people have begun linking from their blog to mine. It’s nice to know these connections are being made, and people feel connected to CHADD.
Attention magazine re-design
The October issue of Attention magazine will feature a new look. We have been extremely impressed with the creativity and professionalism of our new designers, and we think you will agree that the new look is fresh, clean, and visually appealing. The purpose of the new design is to more effectively share information with busy individuals and families. We look forward to receiving your feedback.
Homeschooling Parent magazine
We authored a feature story on AD/HD for Homeschooling Parent magazine, which was released in late August/early September. We also promoted membership and conference in the publication. There is a real need for more science-based information in the homeschooling arena. It is nice that we’re getting this kind of publicity from one of the major publications read by homeschooling parents. Hopefully, we will attract more members from this effort as well.
Addressing undiagnosed AD/HD
CHADD joined forces with Congresswoman Sheila Jackson-Lee (D-Texas) and former CHADD board member and current coordinator Karran Harper Royal to produce a video that pulls at the heartstrings, while highlighting what the research tells us. The video was presented to the National Medical Association section on psychiatry and behavioral science in August. Numerous people have requested copies of the video. It will be shown to an annual meeting of Women in Government next week, and we have plan to disseminate via e-mail to staff members in the U.S. House of Representatives in the next several weeks. The video will also be posted in VideoCHADD in the coming days.
Letters to governors
State legislatures are increasingly considering bills that could impede communication between teachers and parents about students' behavior and learning habits in the classroom. As a result, CHADD has focused a great deal of attention on getting our message out to state legislators. For AD/HD Awareness Day, we sent letters to the governors of all 50 states. In the letter, I talked about the importance of receiving an evaluation and treatment for AD/HD. I also provided the governors with resources, including our public policy director’s contact information and our Web site URL, so they can seek more information from us. Unfortunately, given the timing, we shared the letter with our affiliate leaders a day after writing the governors. We apologize for this timing quirk.
We are working hard to produce science-based information and reach key audiences in an effort to raise awareness about AD/HD. Thank you for allowing me to share just a sampling of the work that is being done at CHADD.
Clarke
Wednesday, August 29, 2007
After High School?
Sunday night we dropped my son Andrew off for his second partial week at a Maryland Department of Rehabilitation Services (DORS) program to help Andrew think about employment options.
The literature on AD/HD emphasizes that transitions from stages in life—to elementary school, to middle school, to high school, to college, and to the work world—are particularly stressful and difficult for many individuals with AD/HD and related disorders. Some speculate that the transition to work from school may be the most difficult of these transitions.
I have previously discussed what a disaster ninth grade was for Andrew and his family. Tenth grade in a totally different school environment was a tremendous success, and our happy and growing young man looks forward to the upcoming eleventh and twelfth grades. While the public school system in our county failed to appropriately meet Andrew’s needs in ninth grade, during the transition from middle to high school the school system did encourage us to begin thinking about the after-high school experience. Because Andrew had an IEP (Individualized Education Plan under special education law), he was automatically referred to the state rehabilitation services program.
No one knows where Andrew’s skills and interests will be in another two years, but we felt it important to have us all begin thinking about options. The state rehab services program categorizes children by levels of challenge, and with severe funding restrictions, many children in need of vocational assessment and support do not get it. Andrew was accepted and enrolled; then we were told that funding cuts meant he would not participate this year; and then the state found a “slot” for him. Andrew returns to school two weeks after the regular public schools in Maryland begin, which probably helped open a “slot” for him. While next year would probably be a more ideal time for Andrew to have such an assessment experience, with governmental funding opportunities one takes them when they are offered.
Andrew stays at a vocational assessment and training center called the Workforce and Technology Center. Week one, he checked in Monday morning and departed Thursday afternoon. Week two, he checked in Sunday night and will depart Thursday afternoon. The two partial weeks are spent exposing Andrew to different job related areas to determine his ability and interest. He has yet to find something that he really enjoys. They don’t have baseball club related job areas (one of his passions in life), but they do offer a variety of computer skill areas. This summer at a school-camp program, Andrew learned PowerPoint skills. He prepared two baseball PowerPoints as well as one on the U.S.S. Ross.
While Andrew is unable to leave the Workforce Center unless there is a field trip (and none are planned during his two-week experience), he has more independence and responsibility at the facility than at school or home. He is also one of the youngest kids at the center these past two weeks. And unlike his current school, no one actively promotes social connections. He has made only one friend there, and that boy left two days after Andrew met him. So, he is lonely. He is not very interested in the skill tests and assessments. We are mildly concerned about the lack of close supervision, something he is accustomed to having. But it is also a good opportunity for Andrew to develop greater independent living skills and to begin thinking about what will follow high school. No decisions are being made, and we have two years before Andrew graduates from high school, so we have plenty of time.
If your child has an IEP, I encourage you to take advantage of job-related assessment and training opportunities that the schools or other public agencies offer.
CHADD realizes that we need to develop staffed program support of individuals facing the transition from high school and from college to the work world, as well as their families. We have submitted applications for funding support from two federal agencies—the Center for Mental Health Services (CMHS) and the Department of Labor . We will be submitting applications to private foundations to provide support to individuals in transition and their families. Our current planning focus is on individuals during the first ten years of transition from high school or college. We will continue to attempt to locate funding to employ staff specialists who can provide direct support to individuals facing this transition. Your support of this effort is also helpful and important.
Clarke
The literature on AD/HD emphasizes that transitions from stages in life—to elementary school, to middle school, to high school, to college, and to the work world—are particularly stressful and difficult for many individuals with AD/HD and related disorders. Some speculate that the transition to work from school may be the most difficult of these transitions.
I have previously discussed what a disaster ninth grade was for Andrew and his family. Tenth grade in a totally different school environment was a tremendous success, and our happy and growing young man looks forward to the upcoming eleventh and twelfth grades. While the public school system in our county failed to appropriately meet Andrew’s needs in ninth grade, during the transition from middle to high school the school system did encourage us to begin thinking about the after-high school experience. Because Andrew had an IEP (Individualized Education Plan under special education law), he was automatically referred to the state rehabilitation services program.
No one knows where Andrew’s skills and interests will be in another two years, but we felt it important to have us all begin thinking about options. The state rehab services program categorizes children by levels of challenge, and with severe funding restrictions, many children in need of vocational assessment and support do not get it. Andrew was accepted and enrolled; then we were told that funding cuts meant he would not participate this year; and then the state found a “slot” for him. Andrew returns to school two weeks after the regular public schools in Maryland begin, which probably helped open a “slot” for him. While next year would probably be a more ideal time for Andrew to have such an assessment experience, with governmental funding opportunities one takes them when they are offered.
Andrew stays at a vocational assessment and training center called the Workforce and Technology Center. Week one, he checked in Monday morning and departed Thursday afternoon. Week two, he checked in Sunday night and will depart Thursday afternoon. The two partial weeks are spent exposing Andrew to different job related areas to determine his ability and interest. He has yet to find something that he really enjoys. They don’t have baseball club related job areas (one of his passions in life), but they do offer a variety of computer skill areas. This summer at a school-camp program, Andrew learned PowerPoint skills. He prepared two baseball PowerPoints as well as one on the U.S.S. Ross.
While Andrew is unable to leave the Workforce Center unless there is a field trip (and none are planned during his two-week experience), he has more independence and responsibility at the facility than at school or home. He is also one of the youngest kids at the center these past two weeks. And unlike his current school, no one actively promotes social connections. He has made only one friend there, and that boy left two days after Andrew met him. So, he is lonely. He is not very interested in the skill tests and assessments. We are mildly concerned about the lack of close supervision, something he is accustomed to having. But it is also a good opportunity for Andrew to develop greater independent living skills and to begin thinking about what will follow high school. No decisions are being made, and we have two years before Andrew graduates from high school, so we have plenty of time.
If your child has an IEP, I encourage you to take advantage of job-related assessment and training opportunities that the schools or other public agencies offer.
CHADD realizes that we need to develop staffed program support of individuals facing the transition from high school and from college to the work world, as well as their families. We have submitted applications for funding support from two federal agencies—the Center for Mental Health Services (CMHS) and the Department of Labor . We will be submitting applications to private foundations to provide support to individuals in transition and their families. Our current planning focus is on individuals during the first ten years of transition from high school or college. We will continue to attempt to locate funding to employ staff specialists who can provide direct support to individuals facing this transition. Your support of this effort is also helpful and important.
Clarke
Wednesday, August 15, 2007
Addressing Mistrust and Disparities Barriers
Last week I attended the annual conference of the National Medical Association (NMA), an African-American medical society in its 112th year of operation. For the fourth consecutive year, CHADD has hosted a dinner presentation on AD/HD for the NMA section on psychiatry and behavioral science. Former CHADD professional advisory board member Karen Taylor-Crawford, M.D., provided the address, speaking on “AD/HD Across the Lifespan, Questions and Quandaries.” Current CHADD PAB member Diane Buckingham, M.D., serves as the NMA section chair. This activity is consistent with CHADD's mission to provide science-based information on AD/HD and related disorders to all populations. Only two percent of the nation's psychiatrists are African Americans. At the NMA conference, 70 medical doctors discussed with CHADD how to bring the most recent science-based information on AD/HD and related disorders to their patients.
Last month, CHADD and the Black Mental Health Alliance of Baltimore conducted a public forum in Prince George's County, Maryland. Approximately 140 African-American families attended to learn about AD/HD. Moving personal stories were shared by audience participants and the all African-American faculty on dealing with the disparity in resources and information and responding to mistrust of professionals and the institutions of society.
The most recent issue of the Journal of the National Medical Association contains an article entitled, "Beyond Misdiagnosis, Misunderstanding, and Mistrust: Relevance of the Historical Perspective in the Medical and Mental Health Treatment of People of Color" (by Derek H. Suite, MD, MS; Robert La Bril, MDiv; Annelle Primm, MD, MPH; and Phyllis Harrison-Ross, MD). This article discusses how the attitudes within the clinical community and the disparities in resources have influenced African-American culture. The article reinforces the conclusion of former U.S. Surgeon General David Satcher's report, "Mental Health: Culture, Race, and Ethnicity": that mistrust is a major barrier to people of color receiving mental health treatment. This was evident at our Prince George's County forum. The article emphasizes that clinicians must be aware of and responsive to such attitudes and experiences of mistrust. As a voluntary health agency, CHADD must also be aware of and responsive to these attitudes. One of the authors of the JNMA article, Dr. Annelle Primm, attended the CHADD-NMA dinner.
Two areas of greatest concern to families attending the Maryland forum were that the use of medication to treat AD/HD might lead to substance abuse, and that placement in special education is not a service to enhance a child's ability to deal with their disability but a mechanism to isolate children, particularly boys, of color. The forum faculty, comprised of African Americans of multiple professional disciplines and family members, shared science-based information on the potential relationship between medication and substance abuse. While acknowledging that some schools and school districts have used special education as a way of segregating children, in the past and at present, many examples were given showing how special education can be extremely helpful for the growth and development of children.
CHADD's effort is to empower individuals with AD/HD and their families by providing practical, science-based information and compassionate support, allowing such persons and families to more effectively manage their lives throughout all the stages of life. We recognize that some populations and communities experience special challenges. I am proud that CHADD is able to engage in outreach and support to these communities. As a result of our Prince George’s County forum, 18 new individuals signed up to become part of the CHADD support group in their community.
Clarke
Last month, CHADD and the Black Mental Health Alliance of Baltimore conducted a public forum in Prince George's County, Maryland. Approximately 140 African-American families attended to learn about AD/HD. Moving personal stories were shared by audience participants and the all African-American faculty on dealing with the disparity in resources and information and responding to mistrust of professionals and the institutions of society.
The most recent issue of the Journal of the National Medical Association contains an article entitled, "Beyond Misdiagnosis, Misunderstanding, and Mistrust: Relevance of the Historical Perspective in the Medical and Mental Health Treatment of People of Color" (by Derek H. Suite, MD, MS; Robert La Bril, MDiv; Annelle Primm, MD, MPH; and Phyllis Harrison-Ross, MD). This article discusses how the attitudes within the clinical community and the disparities in resources have influenced African-American culture. The article reinforces the conclusion of former U.S. Surgeon General David Satcher's report, "Mental Health: Culture, Race, and Ethnicity": that mistrust is a major barrier to people of color receiving mental health treatment. This was evident at our Prince George's County forum. The article emphasizes that clinicians must be aware of and responsive to such attitudes and experiences of mistrust. As a voluntary health agency, CHADD must also be aware of and responsive to these attitudes. One of the authors of the JNMA article, Dr. Annelle Primm, attended the CHADD-NMA dinner.
Two areas of greatest concern to families attending the Maryland forum were that the use of medication to treat AD/HD might lead to substance abuse, and that placement in special education is not a service to enhance a child's ability to deal with their disability but a mechanism to isolate children, particularly boys, of color. The forum faculty, comprised of African Americans of multiple professional disciplines and family members, shared science-based information on the potential relationship between medication and substance abuse. While acknowledging that some schools and school districts have used special education as a way of segregating children, in the past and at present, many examples were given showing how special education can be extremely helpful for the growth and development of children.
CHADD's effort is to empower individuals with AD/HD and their families by providing practical, science-based information and compassionate support, allowing such persons and families to more effectively manage their lives throughout all the stages of life. We recognize that some populations and communities experience special challenges. I am proud that CHADD is able to engage in outreach and support to these communities. As a result of our Prince George’s County forum, 18 new individuals signed up to become part of the CHADD support group in their community.
Clarke
Tuesday, July 31, 2007
Together We're Stronger
I recently heard that some CHADD grassroots leaders feel the public's understanding of AD/HD is worse than it has ever been. CHADD members all too frequently encounter people who doubt AD/HD is a real disorder, or think diagnosis and treatment are bad ideas. But research studies show we are holding our own in the world of public opinion, if not yet convincing the naysayers. CHADD has been actively promoting science-based information on AD/HD for many years, particularly through the National Resource Center on AD/HD, our education initiative with the media, and the increased number of CHADD support groups all over the country.
Statistically—in terms of national studies of public attitudes about AD/HD—we have been basically in the same position for the past seven years. Independent studies have consistently documented that roughly 60% of the American population understands that AD/HD is a legitimate and real disorder of the brain that can be treated, that roughly 20% of the American population rejects the existence of AD/HD, and that roughly 20% of the American public simply doesn't know. CHADD obviously has to do a better job of communicating the science of AD/HD and providing direct support to our community leaders. A number of our programs and services provide this information and support, including Parent to Parent: Family Training on AD/HD and our National AD/HD Education Initiative.
Our sister national organization—the National Alliance on Mental Illness (NAMI)—recently launched a blog, written by its executive director and guest contributors, to better communicate to the public and members of the organization. To understand activities and issues facing the larger field of serious mental illness, I encourage you to read Mike Fitzpatrick's blog.
Senator Maria Cantwell (D-WA) has announced her intention to again sponsor a Senate resolution recognizing September 19, 2007 as AD/HD Awareness Day. When the Senate acts, we will inform you on our Web site home page.
In preparing for AD/HD Awareness Day, I went back and listened to some of the world's leading authorities on AD/HD speak at CHADD's previous annual international conferences. I listened to keynote addresses of Robert Brooks, Ph.D., Tom Brown, Ph.D., Edward Hallowell, M.D., and Russell Barkley, Ph.D. These tapes are available from our Online Store.
Some of the important themes I recall:
Listening is central to learning about and coming to understand a person with AD/HD.
Shame and fear are what hold people back. We need to instill hope. Positive energy flows when focused on strengths. Positive energy is what drives treatment to success. The fundamental aspect of good mental health is the need to feel connected. Belonging is the most important aspect to success. It starts in our families. It expands into our churches and communities and schools.
The stories told discuss AD/HD as positive examples and as severe challenges for many people. AD/HD for many people is not a benign disorder and contributes to major life activity impairments. These can include distractibility, impulsiveness, difficulty stopping negative activities, not listening and not following directions, poor follow-through on promises, difficulty doing things in proper sequence, difficulty sustaining attention, and difficulty organizing tasks. This results in major challenges at school, work, home, and community. AD/HD is a "Dimensional Disorder," it is not an all-or-nothing disorder. Impairments come along on a wide continuum—small > medium > substantial > devastating. This reality makes public understanding of AD/HD difficult. Each of us views AD/HD through the lens of our family members.
By focusing on strengths, we teach resilience. Resilience is defined as focusing on strengths to overcome adversity. These are personal and community qualities that professionals, faith leaders, community leaders, family leaders, and many others can promote and reinforce. CHADD community leaders can help focus on strengths and promote resiliency. Each of us—telling our personal story—confronts negative public attitudes.
We all need to work together—collaborate—to deal with the stigma, discrimination, and ignorance in the public and in our own communities. The experts can help us. Stay connected through CHADD and other networks.
Clarke
Statistically—in terms of national studies of public attitudes about AD/HD—we have been basically in the same position for the past seven years. Independent studies have consistently documented that roughly 60% of the American population understands that AD/HD is a legitimate and real disorder of the brain that can be treated, that roughly 20% of the American population rejects the existence of AD/HD, and that roughly 20% of the American public simply doesn't know. CHADD obviously has to do a better job of communicating the science of AD/HD and providing direct support to our community leaders. A number of our programs and services provide this information and support, including Parent to Parent: Family Training on AD/HD and our National AD/HD Education Initiative.
Our sister national organization—the National Alliance on Mental Illness (NAMI)—recently launched a blog, written by its executive director and guest contributors, to better communicate to the public and members of the organization. To understand activities and issues facing the larger field of serious mental illness, I encourage you to read Mike Fitzpatrick's blog.
Senator Maria Cantwell (D-WA) has announced her intention to again sponsor a Senate resolution recognizing September 19, 2007 as AD/HD Awareness Day. When the Senate acts, we will inform you on our Web site home page.
In preparing for AD/HD Awareness Day, I went back and listened to some of the world's leading authorities on AD/HD speak at CHADD's previous annual international conferences. I listened to keynote addresses of Robert Brooks, Ph.D., Tom Brown, Ph.D., Edward Hallowell, M.D., and Russell Barkley, Ph.D. These tapes are available from our Online Store.
Some of the important themes I recall:
Listening is central to learning about and coming to understand a person with AD/HD.
Shame and fear are what hold people back. We need to instill hope. Positive energy flows when focused on strengths. Positive energy is what drives treatment to success. The fundamental aspect of good mental health is the need to feel connected. Belonging is the most important aspect to success. It starts in our families. It expands into our churches and communities and schools.
The stories told discuss AD/HD as positive examples and as severe challenges for many people. AD/HD for many people is not a benign disorder and contributes to major life activity impairments. These can include distractibility, impulsiveness, difficulty stopping negative activities, not listening and not following directions, poor follow-through on promises, difficulty doing things in proper sequence, difficulty sustaining attention, and difficulty organizing tasks. This results in major challenges at school, work, home, and community. AD/HD is a "Dimensional Disorder," it is not an all-or-nothing disorder. Impairments come along on a wide continuum—small > medium > substantial > devastating. This reality makes public understanding of AD/HD difficult. Each of us views AD/HD through the lens of our family members.
By focusing on strengths, we teach resilience. Resilience is defined as focusing on strengths to overcome adversity. These are personal and community qualities that professionals, faith leaders, community leaders, family leaders, and many others can promote and reinforce. CHADD community leaders can help focus on strengths and promote resiliency. Each of us—telling our personal story—confronts negative public attitudes.
We all need to work together—collaborate—to deal with the stigma, discrimination, and ignorance in the public and in our own communities. The experts can help us. Stay connected through CHADD and other networks.
Clarke
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