How parents of children with ADHD find support

One in five parents in our survey found it important to take advantage of support groups and other ADHD resources. For tips on what you can do to help your children and yourself, we spoke with Marie Paxson, president of Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD), a national organization partly funded by the Centers for Disease Control and Prevention.

Paxson, from West Chester, Pa., has two children with ADHD who are now grown. One of them had learning issues and the other had behavioral issues. She says that her son was given a diagnosis at 7 and that he fared better than her daughter, who didn't receive a diagnosis until she was15—"the age that young people want to be identical to their peers." Paxson says that both of her children are experiencing success as young adults but they've had a longer and more complex journey than others.

What are the most important things parents should know?
I would encourage other parents to be less fearful. Fear and worry take a lot of time and energy that could be put to better use to find solutions. One of the best ways to find reassurance and confidence is to get support from other parents in the same situation. When you feel empowered and knowledgeable, you make better decisions than when you are feeling panicked or overwhelmed. There are many decisions to be made when raising children with ADHD.

This is a lifelong issue, and you are going to need to pace yourself. One piece of advice I remember is, "This is a marathon, not a sprint." I used to think there was one perfect answer for my children's struggles and it was up to me to find it. In actuality, there are usually several possible solutions for these challenges, and in most instances there was no need to rush.

What mistakes did you make in regard to your children's condition?
I really struggled with being a consistent parent. In the midst of a lot of ADHD-related chaos, it was really hard to remember to stick to the behavior plan or reward/consequence program. I also used to make the mistake of making too many changes at once; I would get exasperated when things weren't going well, and instead of making one or two changes I rearranged the whole program, and quickly got in over my head in trying to implement it.

What are you most proud of?
I am proud that my children have such great critical thinking skills and can be pretty self-reliant most of the time. They have great interpersonal skills and I love their wit and humor, which I think will get them through life's difficult moments. I'm glad that they have learned to be resilient.

What are you most surprised about?
It takes about 10 years of perspective to know this, but I'm surprised how the research, science, and "thinking of the day" changes regarding ADHD. The reading program that my son struggled with throughout elementary school is passé and even harshly judged by some experts now. We were strongly encouraged to give lots of praise to ensure high self-esteem in our children, but I think we all overdid it and now there is a bit of a backlash against that practice.

I'm surprised that some of what we considered essential to being a competent parent has changed and evolved. But you can only work with the information that you have. And it is the nature of science to evolve and change. It is still better to use best practices and science-based interventions than to wing it.

Where can parents turn?
Parents of children with ADHD often turn first to sympathetic family members or existing friends they can rely on. While these types of support occur naturally, there are limitations. For example, parents may receive traditional parenting advice from well-meaning friends, but their children may not respond well to some traditional parenting strategies. It is easy to become overly reliant on our existing friends when you are facing the unknown. Eventually your neediness can become a turnoff, and if you aren't careful, it can end the friendship.

Since many children with ADHD are in some form of special education, there are opportunities at school to meet other parents who are having similar experiences. Parents of children with ADHD may also seek out a wider variety of experiences and advice from a breadth of parents facing similar issues. That is when families usually turn to CHADD.

Reaching out to CHADD or a similar resource for education, support, and advocacy is a wise thing to do. Parents can gain knowledge about the disorder and develop a more realistic view of their child. They can learn what is helpful and what is not. With the support of other parents, they have the opportunity to practice these new skills in a nonjudgmental atmosphere.

What kinds of things do you learn in a support group?
Some of the parenting techniques are counterintuitive, so parent support is helpful. For example, one common recommendation is to never say "no" to an oppositional child. Instead, the parent can say, "Yes, as soon as …" or "Yes, when ... " or "Yes, if .... " This method is easy to understand in a workshop but may not be the way most us were raised, and may be hard to implement on a consistent basis. So having peers who can cheer you on when you are trying a new skill, or give you some perspective when you don't quite get things right, can be instrumental to parenting success.

It is also such a relief to simply be in the company of others who "get" what we are going through, who don't need a detailed explanation of our children's puzzling behaviors, and who believe that ADHD even exists. Being in the presence of naysayers is really exhausting and takes its toll.

We also benefit from being able to share what is really going on in our lives. The accomplishments we celebrate look different than other children's accomplishments. We hang schoolwork on our refrigerators that received a "C" because that is our child's best effort. We get misty over a handwritten Mother's Day card that doesn't contain a single vowel! We give rewards for not saying a bad word in a restaurant.

Being with other parents allows us to talk openly, which reduces fear and uncertainty. Parents of kids with ADHD experience a lot of difficult moments and need the help of our peers to guide us through it. When you are calm, you can make better decisions instead of being reactionary.

We share our sad moments and our fears for our children's futures. Our kids view the world so differently than others. My friend has a child in sixth grade, and the class was assigned to write an essay on the topic of their choice. Most of the boys wrote about sports, a recent vacation, or why their allowance should be increased. My friend's son wrote an essay entitled "I Wish I Had a Friend." You can't share this stuff with the PTA members or with relatives at a barbecue—you need to be in a safe, nurturing environment, and that is what CHADD meetings, events, and parenting classes provide.

• Check local doctors' offices, churches, schools, and community centers for support groups.
• Go to the CHADD website to find a support group in your area, or join their online community. It has 12,000 paid members and 70,000 e-mail constituents concerned with ADHD and related disorders. The group is recognized and financed by the Centers for Disease Control and Prevention as the National Resource Center on ADHD. And while it does receive money from pharmaceutical companies, these funds are less than one-third of its total revenue.
• Check the community events calendar in your local newspaper for listings and check online to see if there is a group in your area, or search for other online communities.
• If there is no group in your area, you might want to consider starting one.
• Attend local, regional, or national events and conferences on ADHD and children for more information and to meet other parents.
• Attend training sessions. CHADD provides educational information and support for individuals and families dealing with ADHD. Local classes are provided by 300 certified teachers throughout the U.S. and also online.

We asked parents of children with ADHD what surprises they encountered after the diagnosis and what they would tell other parents facing the same situation.

One aspect parents mentioned most often: Expect the process to be time- consuming. More than half (53 percent) of them said to be prepared for the time it takes to discuss schoolwork and behavior with teachers. And 38 percent warned others to be prepared for the time spent meeting with doctors and other specialists.

Parents should also be prepared for the social consequences of the condition. Thirty-two percent noted that the attention that children with ADHD require can have a negative impact on other family relationships, and 29 percent said they had disagreements with spouses over diagnosis and treatment. Parents also said they often had to explain their child's behavior to other parents (26 percent), and that it was difficult for children with ADHD to maintain friendships. Only 8 percent of the parents reported no added difficulties in having a child with ADHD. There's a clear need for having reliable, informed professionals involved in your child's treatment to help design a plan of action for school and home.