ability to adjust his response to suit a particular setting was an area of weakness, he came up with what was on his mind.
Again, no points. But as the diagnostician told me, “Clearly there is verbal reasoning ability evidenced in several of Paul’s responses, but their uniqueness did not meet the test criteria and are not reflected in his scores.”
The tutoring bolstered Paul’s academic progress, with his learning to read in kindergarten as a noteworthy example. While this gave his teachers and me some insight into his brightness, unfortunately, the windows of time when he was able to focus, and therefore learn, were unpredictable. His teachers communicated their ongoing concerns about his skill development and his well-being, with written reports that provided a fuller picture:
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Paul is a particularly sensitive child, always kind to his teachers and his classmates. He does not have negative interactions but is instead too withdrawn. His delayed response time impedes normal peer relationships. He often engages in perseverative behaviors, which consist of being overly focused upon a particular detail. On days when he is alert, his ability to comprehend new material is startling. But his good days are sporadic. Most of the time he is unable to work independently or in a group.
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During an appointment Paul had with his pediatrician, I explained the school’s and my concerns. I will never forget sitting in that little exam room that evening as the doctor broke it to me that he could no longer treat Paul, explaining that his own areas of expertise didn’t align with Paul’s apparent needs. This was a huge setback for me and, as I heard his words, I began to cry. The doctor, also Keely’s pediatrician, took the time to hear me out.
I was worried; worried the medication wasn’t right; worried Paul’s future at the current school was tentative and our options limited; then suddenly, without forewarning, I was worried about finding a pediatrician—a critical part of the team needed to minimize all that I was worried about. I felt a great deal of pressure to move forward and my role as the “go-between” with the two doctors, as well as each doctor and the school, was stressful enough.
Here I was sitting in the largest and most respected pediatric office in town, from which I now felt blackballed, and was about to leave without so much as a referral. And if this group of doctors couldn’t treat Paul, who could? Fully aware that I had no say in the matter, I made my way to the front desk, where I learned my balance due was twice that of a regular appointment. When I questioned it, I was told the charge was for an “extended visit” because we had been in the exam room with the doctor beyond the standard number of minutes.
I was tempted to ask, “You charge for crying?” But I was too fragile to take issue. I simply paid the bill and left.
Driving home, I was thankful that Paul was buckled into his car seat and unable to see me because I cried again. This was the start of my somewhat routine “crying in the car” period, which I was usually pretty good about limiting to times I was alone. No matter how hard things got, I didn’t want the children to know.
*
TAKING ADVANTAGE OF a professional development opportunity, two colleagues and I went to Loyola University in Baltimore for a talk on learning and the brain given by Martha Bridge Denckla, a professor of neurology at Johns Hopkins University and Director of Developmental Cognitive Neurology at the Kennedy Krieger Institute. It didn’t surprise me that the auditorium was packed. Dr. Denckla was internationally renowned for her expertise.
After this incredibly enlightening experience, I fantasized about a professional of Dr. Denckla’s caliber working with Paul, then a first grader. Despite the odds, I picked up the phone. Getting through to a member of her staff, I was able to share our story and initiate a process that started with paperwork for Paul’s teachers, doctors, and me to complete and submit.
Emily Legum—Paul’s first grade reading teacher and a gifted learning specialist—spearheaded the school’s response, writing a five-page summary of Paul’s strengths and weaknesses and attaching the results of her extensive diagnostic testing as well as Paul’s written reports. In conclusion, she wrote:
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All Paul’s teachers feel a strong personal concern for him and his academic advancement. His mother has always worked with his teachers in a most positive way and is a loving and supportive parent. We believe Paul is very bright but his inability to attend impedes his success. Despite extensive remediation strategies and individualized instruction with learning specialists, his skill development is impaired, and his learning behaviors are a puzzle to us.
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It wasn’t long before we had an appointment.
As Paul and I arrived at the Kennedy Krieger Institute, I was full of mixed emotions. I was thankful for what I saw as an auspicious opportunity, but at the same time I was saddened to be there, to have to take my little boy to this place, respected as it was. When I spotted their logo featuring a child in a wheelchair, it just about did me in, and I fought hard to choke back my tears—a reaction I now see as somewhat idiotic and even shameful, but nonetheless the memory is crystal clear.
To my utter surprise, a week or so later, Dr. Denckla called me at home. She told me she had put a sticky note on the lamp by her bed to remind her of Paul. I don’t recall all of what was said in that conversation, but I remember this particular exchange as though it were yesterday.
“I have never seen anyone quite like Paul,” Dr. Denckla said. “I can’t believe I’m telling this to a mother.”
And I said, “I can’t believe I am the mother.”
This revered doctor—internationally known research scientist in behavioral and cognitive neurology whose groundbreaking work I’d first read about years before and who must have been in her mid-fifties at the time—had never seen anyone like Paul?
I was not offended—every mother thinks her child is one-of-a-kind—but I was, I don’t know, numb. On the other hand, I was grateful for her interest and genuinely touched by her call. She told me about some highlights of her findings, such as Paul’s visual perception being in the ninety-ninth percentile, a significant strength that he couldn’t readily reveal due to his poor fine motor skills. She also told me her written evaluation was forthcoming and said she’d like to follow up with us periodically, which, over the years, she did.
The evaluation arrived some days later and included:
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Important findings of my evaluation on 11/22/89 were that indeed extremely poor concentration was characteristic of Paul and that it is very difficult to maintain his attention, even while on medication. Although he is a child who has a strength in visual perception and visually guided reasoning, he was below the 3rd percentile on the visual retention tests that depend upon visual attention. He had problems on virtually every one of the tests that require careful looking or listening and controlled responding.
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Neurodevelopmentally, it will come as no surprise that he does have confirmatory “neighborhood” signs in areas of motor control with failures for his age in all areas including gait and balance, with poor control of foot and finger movements, plus hypotonia.
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Barkley Home Rating Scale [used to assess ADHD] was not out of normal range for Paul’s age.
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The medication issue will be an ongoing difficulty, I am sure. However, with some “tinkering” I believe it can be gotten under control. If there is no success with the reduction of Ritalin and with the possible transfer back to Dexedrine, I would have the psychopharmacology clinic referrals with highly specialized persons known through my affiliations with the Kennedy Institute and Johns Hopkins in Baltimore.
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School seems to be an issue for which no perfection can be obtained. There is no perfect school or even excellent school to which I can point. If there were a school that was oriented toward the serious attentionally impaired youngster