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.


1 comment:

Anonymous said...

I agree that the adult consumer perspective is important and that the perspective of parents and other caregivers is important. I disagree that "Soliciting and respecting the views of teens and adolescents is a gray area." To solicit and respect their views is critically important, whether or not those views are shared by the parents.

It's important for a number of reasons. First, the teen/adolescent is at "ground zero": he/she knows better than any of us what he/she is experiencing, feeling, and thinking. The teen may not always be in the best position to make decisions regarding those issues, but for us (and health care professionals and others) to make intelligent, informed decisions, we need to know what the teen is thinking, experiencing, and feeling.

Second, it makes for a better parent/child relationship if the child knows and understands that he/she is being listened to.

Yes, it's up to the parents to make the decisions. But if I'm going to listen to medical "professionals," educators (many of whom have had little or no experience with ADHD or any aspect of special education), health insurance companies (Ha! Do we really want to suggest that they have a clue?), legislators (who typically respond to the squeakiest wheels and biggest campaign contributions), and others, I think we have an absolute obligation to solicit and respect the views of teens and adolescents.

Don Tepper
Past Coordinator, CHADD of Northern Virginia