Building a parent support program and learning network

David B. Baker and Stewart Pisecco

The families and other caregivers of children with AD/HD need care and attention, just as their children do. This article outlines a six-week parent training program that provides education and information, behavior management strategies, and social support.

“They let him get away with anything!”
“They just can’t control him.”
"If he were my kid, I'd give him a good spanking.”
"He’s just trying to get attention. If they spent more time with him, he’d grow out of it.”

These indictments of the child-rearing styles of parents who have children with AD/HD are all too common in today’s families and schools. Although factors such as poor parenting, diet, and allergies have all been advanced as causes of AD/HD, there is a growing consensus by researchers in the field that AD/HD, when properly diagnosed, is a neurobiological disorder (Barkley, 1990; Zametkin, Nardahl, Gross, & King, 1991). Yet parents of children with AD/HD still frequently encounter well-meaning family and friends who give unsolicited child-rearing advice, school personnel who demand behavioral change, and professionals who present conflicting recommendations.

In the school setting, teachers and administrators may demand that parents control behaviors at school that they have been unsuccessful in changing. Again, whether directly or indirectly, parents and their child-rearing practices are often indicted (“too permissive” or “too passive"), as is the character of their child. Common hypotheses include the view that the child's behavior is attention seeking (leading to suggestions that the parents spend more time with their child), or that the child is undisciplined (leading to suggestions that the parents be stricter and make the child try harder). But as most parents of children with AD/HD know, harsh, negative punishment accomplishes nothing more than escalating conflict and misery for everyone in the home.

Helping professionals such as physicians and counselors often offer conflicting recommendations to parents who are struggling to make sense of their child's diagnosis and the various treatment options available. These professionals may dismiss parental concerns by stating that their child is “going through a phase” and will grow out of it, or go to the other extreme and suggest that the child's behavior is a reflection of deep-seated conflict or emotional problems requiring individual or family therapy. When AD/HD is diagnosed, parents can also be faced with differing attitudes toward the use of medication, with some professionals advocating for its use and others opposing it.

In a culture where individualism and self-responsibility are highly valued, it is difficult to accept someone with poor self-control. Children with AD/HD have difficulty staying on task, many times fail to learn from experience, frequently need high levels of external reinforcement and motivation, tend to avoid tasks that are routine, and often make decisions in the present without consideration of future consequences. While these and other behaviors can make the child with AD/HD difficult to understand and work with, they do not mean that the child is willfully disobedient or that the parents have poor values or practices. What they do mean is that the child has a biologically based disorder whose manifestations can present challenges to the child and those who care for him or her.

Helping Parents Cope: A Plan of Action
While direct treatment of the child with AD/HD is an essential element in any intervention plan, it is equally important that parents and other caregivers of these children receive the care and attention they need and deserve. The elevated stress of parenting a child with AD/HD (Baker & McCal, 1995) is something that must be acknowledged, validated, and dealt with in any comprehensive program of treatment for AD/HD. In a survey of parents of children with AD/HD (Kottman, Baker, & Roberts, 1995), participants all seemed to agree that what they most wanted to help them deal with this stress was education/information, behavior management strategies, and social support.

In order to provide for these three identified needs, we developed a six-week parent training program that we have implemented in a variety of settings over the last seven years. We have found the following elements to be essential in designing such a program.

The setting and the participants. Our method of parent training uses a group format. Typically, we have between eight and ten families present – a group large enough to stimulate interaction between participants but small enough to permit individual time and attention. We encourage the primary caretakers of the child with AD/HD to attend, including significant adults in the child's life other than the parents, if their participation will directly benefit the child and family.

There is a small fee to cover the cost of copying handouts, and participants are asked to complete some research measures used in our work. The formation of groups is announced in the local paper and through local school districts. We do some screening to ensure that the group setting is appropriate and that AD/HD is the primary issue (as opposed to multiple issues and stresses that can be more appropriately served through a more individualized or specialized program). Presenters are generally advanced doctoral students in psychology who have been working with children with AD/HD and their families for a number of years. Their role is to present up-to-date and factual information about AD/HD.

The format. Our meetings are scheduled one evening a week for 90 minutes. During the first 45 minutes of each meeting, the group leader makes a presentation on a selected topic. The final 45 minutes are reserved for questions and discussion. The presenters facilitate this discussion, and parents are free to bring up whatever topics or issues they would like. This time is consistently rated by participants as the most valuable aspect of the program. In the same way that parent support groups are successful, this time allows parents to share their experiences with others who are in similar circumstances.

As we noted earlier, the parents of children with AD/HD are often blamed for the misbehavior of their children and subjected to the anger and frustration of those who find their children's behavior difficult to deal with. In addition, they must endure the pain of seeing their child rejected by peers and adults in social and educational settings. Over time, it can become difficult for a parent to continue to say, “My child really is a creative, caring, and sensitive person.” The group provides a safe, supportive, and comforting outlet where these feelings can be expressed and problem solving can occur. Those of us who have conducted these groups have learned a tremendous amount from listening to what parents struggle with and the creative and helpful strategies they have developed for dealing with problem situations and behaviors. These insights have made all of us more effective advocates and clinicians.

Topics. As mentioned above, we begin each session with a 45-minute presentation on a selected topic.

First Session. Our first session is devoted to defining AD/HD. In addition to defining DSM-IV criteria (American Psychiatric Association, 1994), we discuss manifestations of AD/HD across the lifespan. Because participants have children of varying ages, it is helpful to present as complete a developmental picture as possible. It is not uncommon for parents to recognize symptoms of AD/HD in themselves during this presentation. For those parents who feel they have significant symptomatology, a referral for an assessment for AD/HD can be made.

Second Session. The second session provides an overview of treatment modalities that we divide into two types: physiologically based (medication, diet, biofeedback, etc.) and psychologically based (behavior modification, cognitive behavior therapy, family therapy, etc.). Our goal is to provide information and resources that parents can use in making treatment decisions. Not surprisingly, there is quite a bit of debate about the use of stimulant medication. The variety of treatments that parents have tried and the results they obtained provide a rich source of experience for the group.

Sessions Three and Four. Sessions three and four are the heart of the program and a time when we devote considerable energy to helping parents improve their behavior and that of their children by providing actual tools for effecting positive change in their families. In session three, we discuss parent-child interaction patterns. Non-compliance is often a major issue, and we attempt to show parents how getting into coercive power struggles with their children can maintain and escalate non-compliant behavior. We encourage parents to become aware of their style of interaction with their child before we move on to session four, where we continue with a discussion of learning theory and positive reinforcement.

One of the few absolutes we teach is that positives work better than negatives. If punishment were an effective treatment for AD/HD, we would certainly know that by now. We stress over and over that praise and attention can never be given enough. The phrase “catch them being good” is an apt one. Children with AD/HD often hear much more about what they do wrong rather than what they do right, although they do plenty of things right in a day that can be recognized.

To make our discussions about interaction patterns, learning, and reinforcement more concrete, we work with parents to identify three target behaviors they are the most concerned and/or frustrated about and make a plan for working on them. The most common problems parents choose to work on with their children are getting ready in the morning and doing homework. Often these issues have become the front lines in ongoing battles that make all concerned angry, frustrated, and upset. We teach parents that while it is easy to identify behaviors that are of concern, it is much more difficult to operationally define them. For example, to say “I would really like for him to get ready by himself in the morning” leaves room for a lot of interpretation. Requests must be concrete, direct, and clear, So, “get ready in the morning” might be defined as “get out of bed when the alarm goes off, go directly to the bathroom, brush your teeth, and wash your hands and face.” It may be that a child can do two of these steps with success, in which case that is a starting point to build from.

Related to this is our goal of helping parents clarify what is realistic to expect. It is not uncommon for parents to expect that their child should perform according to his or her chronological age (e.g., “At 10 years old, she should be able to complete 30 minutes of homework on her own"). However, each child is different, and the benchmark for any expectation should be based on what the individual child has shown the capacity to do, not what others his or her age might do.

We suggest that parents think of the difference between “can’t” and “won't.” On one side are those things that their child cannot yet do (remember and follow a four-step command) and those things he or she can do but chooses not to do (follow a two-step command). The difference is often subtle, but when parents begin to think in these terms, it provides a baseline against which expectations can be determined.

To complete the behavior change planning, the use of rewards as a motivator is discussed. We recommend that each day, parents award one point (or check mark, token, etc.) for successful completion of each of the three target behaviors. A small reward can be given for completion of two of the three target behaviors, and a bonus given for completion of all three target behaviors. The bonus can be made more exciting by having small wrapped presents to choose from or using a grab bag. As a rule of thumb, we suggest that the rewards should cost no more than 25 cents (e.g., trading cards, action figures, stickers, etc.) or take more than 10 minutes (read a story, computer time, snack, etc.). At the end of the week, the points are totaled and can be used toward major rewards. We advise parents to rate rewards based on percentages of points earned. For example, 100% of points achieved could earn a pizza party, a friend over for the night, etc. No weekly rewards are recommended for any amount under 70%. Parents are asked to sit with their child and explain the point system and engage the child's cooperation in devising the list of rewards.

We are often asked whether or not such a system is just a way of bribing a child and if it fails to teach responsibility. First and foremost, the system is congruent with our emphasis on the positive. It gives children and parents a chance to be successful in a structured, consistent way that focuses on accomplishments. The time spent using the system should generally be positive, upbeat, and enjoyable. Secondly, it helps provide motivation where there is typically very little. As many parents of children with AD/HD will attest, their children will do almost anything to avoid a task they perceive as aversive. A point system acknowledges this and provides motivation that can increase task achievement and decrease task aversion and avoidance. Finally, it provides parents with a tool that can empower them to help their child and foster hope that problems that seem impossible can be conquered. We ask parents to take the point system home and implement it in week four so that we can review progress during weeks five and six.

Session Five. The fifth session concludes our behavior management segment and focuses on general “house rules". Two rules are suggested: respond to first requests, and play cooperatively with others. These rules are in effect both in and outside the home and can cover many of the issues that are likely to arise at home and in public places. Transitions are often difficult for children with AD/HD, and we recommend that parents always take time to review “house rules” when entering a new situation.

Session Six. In our last session, we focus on communicating with schools and establishing methods for the completion of homework. A critical component is a good communication link between the parent and teacher. Schools can vary considerably in their understanding of and ability to deliver services to children with AD/HD. Meeting with school personnel before problems develop and providing them with information about AD/HD and its manifestations in the school setting can reduce misunderstandings and conflicts. In regard to maintaining communication with the teacher, we recommend the use of a home note system that provides a daily communication between parent and teacher. The home note system can be used to communicate daily behaviors in the classroom and to keep track of assignments. Every attempt should be made to use the home note system as an aid rather than a punishment.

Homework can be a real source of conflict, so we encourage parents to make homework a routine. Setting aside time each day for completing academic activities is encouraged. Even if a child does not have homework, we suggest that parents have the child set aside time each day to engage in some type of learning activity. This could include looking at a book, listening to an educational tape, or completing an educational game on a computer. To aid in the establishment of study as a habit, it is necessary for the child to (a) have a set time to study each day (the amount of time is determined by the amount of work, the child's ability to focus attention, etc.), (b) study in the same place each day (preferably a desk with adequate lighting), and (c) have minimal distractions (e.g., no radio or TV).

This final presentation generates considerable discussion of the success and failure that parents have experienced in dealing with the educational system. There is often a focus on advocacy issues regarding the educational rights of children with AD/HD. Because this is the last session, we also use this time to bring closure to the program. Typically, we will schedule a follow-up session in four to six weeks.

Meeting Parents' Needs
Understanding and responding to the needs of parents of children with AD/HD is a crucial component in any comprehensive treatment plan for AD/HD. Our experiences have taught us that many parents are in need of education and information about AD/HD, guidance in managing problem behavior, and social support. The parent training program we have described is but one means of responding to these needs.

The system we have outlined could be incorporated into any number of service delivery systems. Parents themselves have taken the lead in many ways through the formation of support groups that have become national in scope and function. Organizations such as Children and Adults with Attention Deficit Disorders (Ch.A.D.D,) and the Attention Deficit Disorder Association (ADDA) do an outstanding job of responding to the needs and concerns of individuals with AD/HD. Web pages and links related to AD/HD are growing rapidly and can offer instant access to a myriad of resources.

We recognize that for many families, living with AD/HD can at times be overwhelming. We also recognize that there is much we can do to lessen the burden. By working together, parents and professionals can create relationships that increase awareness and understanding of AD/HD, reduce parenting stress, and provide services that both parents and children who struggle with AD/HD need and deserve.

References

American Psychiatric Association. (1994). Diagnostic and statistical manual of manual disorders (4th ed. revised). Washington DC: Author.

Baker, D. B. & McCal, K. (1995). Parenting stress in parents of children with attention-deficit hyperactivity disorder and parents of children with learning disabilities. Journal of Child and Family Studies, 4, 57-68.

Barkley, R. A. (1990). Attention deficit hyperactivity disorder. New York: Guilford Press.

Kottman. T., Baker, D. B., & Roberts., R. S. (1995). Parental perspectives on AD/HD: How school Counselors can help. The School Counselor, 43, 142-150.

Zametkin. A. J., Nardahl, T. E., Gross. M., & King., A. C. (1991). Cerebral glucose metabolism in adults with hyperactivity of childhood onset. New England Journal of Medicine, 20, 1361-1366.

This feature: Baker, D. B., & Pisecco, S. (1998). Building a Parent Support Program and Learning Network. Reaching Today’s Youth, Vol. 2, No. 2, pp. 48-51