ATTENTION-DEFICIT/HYPERACTIVITY DISORDER (ADHD) is just one of our son Andrew's learning and living challenges, but it is a significant hindrance to his ability to function. Andrew is now a 14-year-old boy. This article attempts to explain Andrew's growth and development and how we noticed and identified his inattentive form of ADHD.
Andrew was born in October 1990 and aced his first test; his Apgar score was a 9: “as good as you can get without being a pediatrician's child,” according to our son's doctor. Some of his early milestones such as smiling, reaching, and grasping were right on time. However, we began to notice some slight delays in reaching gross motor development benchmarks such as sitting up and crawling. Our first official “bad” news came when we took our 15-month-old son to a physiatrist to determine why he was not bouncing back from a fracture of his left tibia/fibula, an injury suffered going down a baby slide with his leg bent under him. The doctor noticed a multitude of motor development delays and low muscle tone. We were now on the lookout for further problems.
At 19 months, with a vocabulary of only 10 words, his pediatrician referred him to the state of Maryland “Infants and Toddlers” program, an early education program, for evaluation of his language delay. The evaluation noted delays in most areas, including his ability to attend. From age 2–3, he worked with an early education specialist, an occupational therapist, and a physical therapist.
At age 3, he continued to receive services through the early intervention program in a half-day preschool program. During his preschool years, it was difficult to distinguish attention deficits from deficits in language, motor, or perceptual skills. Did he refuse to finish coloring the picture of the pumpkin because he could not grasp the crayon effectively, he did not recognize the boundaries, or because he could not keep his attention focused on the task? Andrew was subsequently diagnosed with dysgraphia. Did he not follow the directions of the teacher because he was distracted from the task or because he did not understand the task? Undoubtedly, his problems in performance were the result of delayed development in all these areas. It also was suggested by a sensory integration specialist (an occupational therapist) who tried to complete an evaluation of him at age 4 that he may be overly anxious. It took some time before we began to recognize the significant role anxiety has played in his performance. He may not be doing what is asked of him because he is too concerned with an unidentified noise or he is afraid to join a group of children.
We took Andrew to a psychiatrist who specialized in ADHD and learning disabilities a few months after his fourth birthday on the advice of the sensory integration therapist. The psychiatrist spent an hour discussing our observations of Andrew after we had filled out a lengthy questionnaire, and read the therapist's report. We wondered if observing in his office was as effective as observing Andrew in our home. We realize that the “typical” assessment is an “office visit,” but we were not sure that such an office assessment was a complete picture of Andrew. The psychiatrist could not diagnose ADHD definitively and suggested a trial of “Ritalin” (methylphenidate) to see if Andrew improved. Since we were not convinced that ADHD played a role in his delayed performance and because of his history of febrile seizures and 3 unprovoked seizures, we deferred on the medication. We were also uncomfortable with using medication as a diagnostic device.
Andrew was not “bouncing off the walls” or acting as if “driven by a motor.” We understood his attention problem, if indeed there was one, to be his unwillingness to perform tasks he was not interested in and to persist in a task once engaged. He was not disruptive in class; in fact, he barely moved when compared to many of the boys in his first-grade class who had difficulty staying in their seats. Subsequently, it was determined that he was so anxious that he was stiff and unnatural in his behavior—when told to walk in a straight line he would move with eyes focused only on the child in front of him, never looking sideways, never looking at others, and never smiling. Even with an Individualized Education Program and special education support, Andrew could not keep up in class.
At age 6½, to further refine our understanding of Andrew's learning challenges, he had a neuropsychological evaluation involving two half-days of testing. The results indicated that his attention and disorganized responding clearly interfered with his performance across domains. Other findings included significant weaknesses in language and reasoning and extremely poor spatial visualization.
In response to the neuropsychological report, we sought the advice of another psychiatrist regarding medication for his attention deficit. By this time, Andrew was just 7 years old and a first-grade student. The doctor diagnosed ADHD, combined type, along with developmental expressive and receptive language disorders. We did not question the diagnosis and did not even realize at that time that there were subtypes in the diagnosis of ADHD. We were mainly concerned with trying medication to help his performance in school. After consulting with a neurologist concerning the risk of seizure, we were convinced that we should try a moderate dose. Methylphenidate (Ritalin) produced no notable effects. We tried dextroamphetamine (Dexedrine) and his teachers noticed a difference. After a few months on dextroamphetamine (Dexedrine), we switched him to mixed amphetamine salts (Adderall) on the advice of our pediatrician, who was now “managing” his ADHD. The teachers noted further improvement, so we have stuck with mixed amphetamine salts (Adderall) to this day.
Andrew's pediatrician uses the Conners Teachers Rating Scale and a discussion with parents for periodic assessments. The teachers consistently report more problems on the top half of the list for Andrew, the areas dealing with sustaining attention, organization, and distractibility. The lower half, representing the “hyper” activities, are usually marked “not at all” or “just a little.” Once “blurting out” and “excessive talking” were identified as problems in a small reading group where he was more comfortable than in the general classroom. This observation is consistent with our impression of Andrew at home. We see some impulsivity in his interrupting and in inappropriate language that escapes but is immediately regretted. Perhaps his anxiety keeps his impulsive tendencies in check at school.
At age 9, Andrew was started on fluoxetine (Prozac). His fear of bugs and dogs had become so pronounced that he would not go outside. Behavioral interventions and medication helped reduce these fears, reduced his social anxiety, and his teachers noted improvement in the areas of participation and cooperation. Andrew continues on this medication as well today.
As is common with children with ADHD, Andrew presents a mixed bag of impairments, with the ADHD being only one, albeit a significant one. We are still puzzling over the extent to which his other disorders, particularly anxiety, contribute to his passivity, distractibility, and seeming inability to follow through on instructions. We are hoping that as he matures and becomes more introspective, he will be able to join us in solving the puzzle.
From our personal experience and the experiences of other parents we have spoken with, we offer the following ideas:
- Parents should find a primary care clinician with personal connections to university-based or teaching-based medical facilities and who is available by telephone to discuss concerns, respond to questions from parents, and discuss effectiveness and side effects of treatments. Both of these are characteristics likely to occur with pediatricians who are providing what the American Academy of Pediatrics and the Bureau of Maternal and Child Health call a Medical Home. These practices are likely to use nurses in the routine initial review and assessment process. Health insurance frequently limits a pediatrician's actual face-to-face time with the child and family. With a competent and well-trained nurse, the child and family's face-to-face real time with a medical professional may triple (from, say, 7 minutes to 21 minutes, as an example).
- If parents suspect anything more complicated than an unambiguous diagnosis of ADHD without any other co-occurring condition, through their primary care clinician, they should find a university-based or teaching-based medical facility with an array of specialists in developmental delays and disorders. The child needs to be evaluated early by an interdisciplinary team rather than piecemeal chasing diagnoses and remedies. The team is likely to include a developmental-behavioral pediatrician, a neurodevelopmental disabilities specialist, and a child psychiatrist or a child neurologist. Whichever the specialist, he or she needs to be skilled in making diagnoses of complex child disorders as part of an interdisciplinary team.
- It is important to integrate the reports and recommendations of all the clinicians into a treatment plan combining health, mental health, and education services. It is helpful for parents to get help in the integration process. The help may come from their primary care clinician as part of the Medical Home, through a member of the team providing the interdisciplinary evaluation, or through other agencies such as the school system or human services programs, particularly those programs with case coordinators. In the absence of coordination support, parents will have to develop such an integrated treatment plan on their own.
- Parents need to locate a health insurance plan that allows direct referral from the pediatrician to specialists without restrictions in terms of “network” and “nonnetwork” providers, and one that reimburses for specialist diagnosis and treatment.
- Parents need to enroll their child in their local early intervention programs, most likely, but not always, run by the Department of Education. These are combined federally and state supported programs for infants and young children who have or are likely to have a condition that will impair their development. Children with ADHD will qualify if their behavior is severely dysfunctional or other co-occurring conditions result in significant delays in development. The programs provide early special education and related interventions, such as speech, physical, and occupational therapy as needed. Our pediatrician referred us to the program. The programs do not require a diagnosis for eligibility, but they usually require a significant level of developmental delay in development.
- Parents should network with other parents. They should share experiences and not be afraid of “stigmatizing” their child. If problems are suspected or real, they need the opportunity to discuss them with both knowledgeable people and significant others such as pastors, friends, family, and other parents. Family-based organizations, such as CHADD (Children and Adults With Attention-Deficit/Hyperactivity Disorder), are neutral locations for parents to share experiences.
- It is helpful for parents to search for information online and in books and follow leads wherever they take them, but with the caution that many Internet sources lack any scientific basis for their claims. Web sites that are more regulated utilizing evidence-based information such as the CHADD Web site (www.chadd.org), the American Academy of Pediatrics Web site, or the American Academy of Child and Adolescent Psychiatry Web site can provide accurate information on both the condition and its treatment as well as, in the case of CHADD, practical information such as the fact sheet on “complementary and controversial interventions for ADHD,” an article focused on the treatment of ADHD that also contains helpful advice on how to evaluate the merits and soundness of information located on the Web.
- Keep in mind that for families it is a long journey. The diagnosis may change as the child develops. There is a need to keep searching for answers that make sense. Children constantly grow and develop so their situation will constantly change. It is important to build on the strengths of a child while making modifications that recognize his or her limitations. In addition, if at all possible, parents need to try to find some time for themselves away from their child so that they can better enjoy life. Dealing with children with challenges day in and day out is stressful. Loving and helping the children is wonderful but parents finding some time for themselves is equally important.