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.


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.