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Chapter 2

“I’m Tired of Letters”

Off in the sunset, resting on the cue of night,

There lies a horizon, sinking in neon light.

While nature below rustles in its chilling gust,

Trees dance to its music, all throughout dusk.

Then as we sleep, by enormous shaded skies,

The western world awakens with day light at its side.

AFTER PAUL HAD spent just a handful of days in pre-kindergarten, he climbed into the car one afternoon and announced, “I’m tired of letters.” Great, I thought, they’re just the foundation for literacy. But we had time—lots of it.

Even though Paul’s teacher the prior year had expressed concern about his ability to engage, or to take his turn when prompted, I was more amused and endeared by him than I was worried. I could see some of his differences. Of course I could. But he was beautiful, he was remarkably sweet-natured, and he was happy. And I am an optimist.

His biggest impediment by far was inattentiveness. Even at home, where individual attention was more the norm than in a classroom, there were many times when he didn’t realize he was being addressed, and even a gentle touch on his arm or the side of his face had no effect whatsoever. He simply went somewhere else. I used to joke that you could stick a pin in his arm and he wouldn’t know it. I never tested this theory, but I still think it’s the truth. When he came back from wherever he’d been, he would carry on age-appropriate conversations with me or Keely or other members of our family, always as if he didn’t know he’d gone away for a little while.

I recalled that I had not been the most focused child either. The fact is, I was the child whose stage debut was to have been at the Annapolis Recreation Center in a kindergarten class performance of H.M.S. Pinafore. In spite of what must have been weeks if not months of rehearsals, I missed my cue and failed to go out on the stage for my part. Backstage, sitting Indian style—as we said back then—and wearing what seemed to me to be a ball gown, I was mesmerized by a bug on the wall. The next thing I knew, it was too late. While I don’t recall being upset, I do remember fleeting thoughts of my parents out there in the audience but concluded they wouldn’t have noticed. I was wrong.

And Paul’s father didn’t hear half of what was said to him. But Don was brilliantly successful, and my guess is that I had excelled beyond what my elementary school teachers or my parents might have predicted. After all, I had gone on to earn a master’s degree, graduating with honors.

As a three-year-old, Paul was screened by Child Find, a service provided by Anne Arundel County for preschool children to determine if a disability interferes with learning and, if so, whether special education services may be recommended. Their findings were inconclusive, a fact that, frankly, allowed me at the time to continue to rationalize that Paul’s differences didn’t warrant undue concern. Just as I thought, I said to myself. Nothing to get worked up about.

But by the time Paul turned four and his pattern of drifting away had continued, I took him to a psychologist, Anthony Wolff. If nothing else, I knew Paul would benefit from one-on-one attention. And I needed to check my own thinking, or at least have a sounding board. I had to admit Paul was a mystery, and I knew I shouldn’t bank on his outgrowing the distractibility that was impeding his learning.

Dr. Wolff quickly won Paul over. In fact, Paul loved going there. They played games, inside and out of the office. The results of a formal assessment, were summarized in writing:

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Paul is an affectionate, endearing child who wants to please the adults in his environment. However, his behavior can best be characterized as globally immature. We have dealt with certain psychosocial issues, such as the relative lack of involvement of his father, which are significant but in my opinion not the main issues with respect to his cognitive development or academic performance.

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Despite his episodic but quite noticeable symptoms of ADD, I have been conservative and hesitant to apply that diagnostic label to Paul on the theory that he may be on an atypical developmental course. However, Paul’s failure to benefit optimally from his pre-k class prompted me to recommend finally that a trial of medication be instituted.

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It is not my impression that Paul suffers from a serious emotional disorder per se although he certainly is at risk for developing a secondary emotional problem if his primary problems, in the cognitive and academic domain, are not improved.

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As I now read that final sentence, all these years later, it feels like the first time. I was a devoted mother to Paul. I have no doubt about that. And I have a pretty good, if not very good, memory. But I didn’t absorb the meaning of those words as maybe I should have. I was concerned about kindergarten and, beyond that, first grade. I absolutely didn’t think long-term. Instead, I was slugging it out one day at a time. And, ever the optimist, I didn’t realize the full extent of this child’s vulnerability.

*

DESPITE MY INITIAL skepticism, we started down the medication route for Paul. As a school administrator, I had first-hand knowledge of children whose lives were saved by strategies that included medication. I witnessed kids whose disorganization compromised their potential and for whom a small dose of Ritalin (the most frequently prescribed medication for ADD or ADHD at the time) was a miracle. Success was noted literally overnight. Paul was not one of those kids.

Ritalin for Paul made a marginal difference in enhancing his concentration but, unfortunately, the slight and uneven boost in his productivity did not outweigh the side effects: weight loss, fidgeting, and nervousness that exacerbated his tremor, compounding his difficulty with fine motor skills. Dexedrine was tried next and, working with his pediatrician and psychologist, we experimented with the dosage before determining, some months later, that the Ritalin was more beneficial and that Paul would acclimate to the side effects.

I was fortunate to be able to stay home with my children in their early years (until Keely was seven and Paul four) and to jump back into the professional world in a way that blended with my parenting. Until Keely was born—the year I turned thirty—I had been an academic librarian at the University of Maryland, College Park, a place where I enjoyed accolades for my work and made lifelong friends.

When Keely started school as a three-year-old, I volunteered in the library at her school, a pre-kindergarten through twelfth grade independent school in Annapolis. Within a couple of years, I was on the payroll. And by the time Keely started second grade, and Paul was entering the four-year-old program, I was the librarian—a full-time position. The following year, I joined the school’s administration, working twelve months and assuming increasing responsibilities over what would end up being a thirty-year career.

The school’s campus included fifteen buildings and was located on an old estate that had been a gentleman’s farm from the late 1880s to 1940 or so. Beyond being a home-away-from-home for the three of us, the school was a place where good people joined forces, where intellectual zest and creative thinking filled the air, and where the commitment to individuality and to new ideas was exciting. Along with opportunities for tremendous professional growth, I gained a greater exposure to my children’s teachers and a greater respect for their work.

I remember going into Paul’s classroom one day at lunchtime, just as he was given his mid-day dose of medication. The little boy seated next to him said, “Why did you take that pill?”

Even though I was across the room, Paul called out to me, “Hey, Mommie—why do I take pills?”

I explained he took them to help him pay attention and concentrate.

A worried look crossed Paul’s face as he responded to me. “I hate to tell you this,” he said, “but when I take that pill, it goes down; so I don’t think it’s helping my brain.”

I didn’t think it was helping his brain either.

The summer before Paul’s kindergarten year, when he was five-and-a-half, I turned to a local organization that provided diagnostic evaluations and tutoring support. After a series of sessions with Paul, including a battery of tests, they sent me a written report that included:

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Test scores must be accepted cautiously as they are considered a minimal estimation of Paul’s true abilities. The pervasive pattern is one of attentional limitations. Until the correct dosage of medication is met, further definition of Paul’s learning style is tentative. He appears to be a creative thinker who has difficulty with sequential delineation, poor control over his pencil, and a lack of confidence for academic tasks. The result of this constellation of patterns is that Paul may try to manipulate or avoid task completion altogether as a means of disguising his undeveloped skills.

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After receiving the report, I hired a tutor to work with Paul.

The common thread in Paul’s many assessments, beyond just the poor scores, was the challenge of determining his ability level, due for the most part to his distractibility, but also to his unique approach to testing. It was understood that Paul’s scores reflected his performance rather than his ability. One of the teachers recounted the following exchange:

Teacher: “Susie had five hair ribbons and she lost three of them. How many did she have left?”

Paul: “Did she find them?”

Teacher: “No. She lost them . . . If she had five to start with and lost three, how many did she still have?”

Paul: “Did someone help her?”

Teacher: “Yes, of course . . . But my question is: How many did she have? Start with the number five and take away three.”

Paul: “Was she sad?”

As the teacher explained to me, “None of Paul’s responses were unintelligent but, in scoring the test, no points were given.”

In a different setting, Paul was asked to name things “to ride.” In the allotted time, he had just one response: “A house.” At the end of the testing, Paul was asked to explain his logic.

“My mom told me they can dig them out, put them on a truck, and move them,” he said. “How do they do that?”

When I heard this, I knew. Just a few days before, I had told Paul about a couple of houses in Annapolis that had been moved when I was young. Paul was intrigued and, even though I did my best to answer his follow-up questions, he continued to ruminate on it. Since Paul’s 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 such as Paul, I would recommend it! Absent that possibility, one is again “tinkering” to come up with a solution that is the best we can do.

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In January of Paul’s first-grade year, following Dr. Denckla’s advice and in conjunction with his teachers and his new pediatrician, Raymond Srsic, we began the process of reducing the Ritalin, ultimately ruling it out altogether. After trying Dexedrine at various dosages without success, I called the Psychopharmacology Clinic at Johns Hopkins Hospital, where we were able to get an appointment with the director, a Dr. Reiss. I had no illusions at this juncture of a quick fix, but I hoped this level of expertise could provide the help Paul desperately needed.

With few exceptions, Paul was still unable to focus well enough to be successful in either large or small groupings. Even though Paul continued to be characterized as cooperative and kind, he was unsure of his place within a group of classmates. In fact, when the children played games, he preferred to sit alone and mostly depended on the teacher for reassurance.

Paul’s writing was weak and labor intensive. I remember a call from his first-grade teacher, telling me he had written his very first sentence in his journal that day.

“What did he write?” I asked.

“I wish it was summer,” she said.

*

THANKFULLY, PAUL WASN’T a self-centered child, and the absence of ego-boosting experiences never caused him to resist going to school. Paul loved his teachers and had developed a close friendship with Scott, a fellow first grader. At home, Paul functioned happily, playing with Keely, his cousins, and a couple of close neighborhood friends.

The only time I saw Paul upset at school was on the day of the first-grade play. Just minutes before it was to start, Paul was told his participation wasn’t needed. Everyone in the class was in the play, and he’d worn the designated outfit to school that day. This news came as a surprise and a blow to him. I learned of this situation just minutes before Paul did and was asked to get him from the wings of the stage, take him back to his classroom, and wait with him until the others returned.

As I intercepted Paul, I could see he was confounded. He ran ahead of me as we crossed the campus, and when we entered his empty classroom, he grabbed a plastic basket full of crayons and threw it to the floor. He sobbed and, in so many words, asked me why he was singled out. I held him and tried to soothe him, but I had no answer. I was careful not to feed his anger, but I was upset too. After his crying subsided, we picked up the crayons and I read a book to him. He never mentioned this incident again.

By March, first grade for Paul had deteriorated entirely due to the instability brought on by switching the various medications (nortriptyline, clonidine, desipramine, imipramine), with each drug generating different effects and the transitioning itself adding to the instability. On one medication, Paul became overly agitated; on another, he couldn’t stay awake. I remember going into our bathroom at home early one morning, thinking I was the only one up, and finding Paul passed out cold on our bathroom floor.

Paul needed routine EKG and blood tests, all of which he stoically tolerated, but he could no longer go to school, and it was obvious he was not remotely prepared for second grade for the upcoming year. Because Paul was already an old first grader, a repeat was out of the question.

I was anxious. I wanted this experimental phase behind us and, frankly, grew impatient with it. At the outset of this trial period, I hoped that by some miracle Paul would get the right treatment, be able to take advantage of his brightness, catch up academically, and end this roller coaster ride. But I knew this was a long shot, and my realism was starting to temper my optimism. My focus was on his fate for the upcoming school year, and I didn’t yet see even a glimmer of light at the end of the tunnel.

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May 27, 1990

Dear Dr. Reiss,

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My son, Paul, is under your care, through his pediatrician, for determining the best possible medication for his attentional impairment.

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As we began to experiment with various medications this spring, Paul initially suffered withdrawal from the stimulants to the point where he was rolling on the floor in his classroom, making high pitched noises, and displaying other disruptive behaviors. Once on a full dose of nortriptyline for the requisite period of time, Paul did present as the happy, well-adjusted child that I had known him to be most of his life. However, his ability to learn (even in a 1:1 setting) was nonexistent.

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Hence we began the clonidine and all of the negative behaviors that accompany any change for this child were evidenced. Whereas I realize it is not possible to avoid the ramifications of weaning from one medication and beginning another, I have never been told what to anticipate, what to tolerate, and when to express concern. Also, I have not been told what length of time is necessary to begin to evaluate any positive effects of these two medications.

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As of today, Paul is on .2 mg of clonidine. Other than the morning nap he needs as a result, he is able to enjoy riding his bike and playing in the afternoon. He cannot, however, do any academic work and is no longer able to attend school. I learned through the pediatrician yesterday that we will proceed in two more increments to .3 mg of clonidine. At that time, I suspect we will rule out the clonidine. I can only guess, however, as to what will be decided and when, and why, and to what end. And each day without success is long and painful. I know this entire process requires patience, yet without a full understanding of the process itself, patience is difficult. Moreover, I am not convinced my patience to date has served my son.

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The bleakness of our current situation contributes to my frustration. I know we are fortunate to have your involvement, yet I feel too removed to feel confident that Paul’s best interest is being served. In short, I am frustrated by the questions I cannot ask, and the input I cannot give.

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Please give me the benefit of your advice.

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Thank you,

Jessie Dunleavy

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I received a reply from Dr. Reiss, encouraging me to persist as long as I felt the “deleterious effects of the medication trials do not outweigh the potential advantages to be gained” and clarifying that he was serving as a consultant to Dr. Srsic, with whom I should share my insights and concerns.

Finally, a medication we tried late that spring, desipramine, seemed to help Paul and he was able to return to school, although there were just a few days left in the year. The teachers reported Paul was more aware of his environment, more outgoing and communicative with his peers, and more focused on completing his work. One day, Paul’s teacher was so excited by his performance that she called me during the school day. Unable to reach me, she asked my administrative assistant to give me this message: “Paul is having the best day ever!”

None of these positives suggested that Paul was functioning well enough to be able to make up for lost time, particularly in short order. Still, I was heartened and extremely relieved that it looked as though we had landed on the right medication.

Within a few days of this respite, I got a call from Dr. Srsic, who told me he had just received the June 1990 issue of The Medical Letter, a bi-weekly journal providing evaluations of pharmaceutical drugs for physicians. Its lead article—Sudden Death in Children Treated with Tricyclic Drugs—concerned him greatly and, as a result, he was unwilling to continue to prescribe desipramine. I couldn’t believe it! I was heartsick. From there, we tried an alternative that supposedly provided similar benefits. This may have been true for some children, but it wasn’t for Paul.

Earlier in the spring, I had started to consider school alternatives for Paul. There weren’t many choices, but I learned a lot about special education resources within a thirty-mile radius of our home. I fell in love with one school I visited in Washington, D.C., but decided our neighborhood public school would be the better option. Confident that Paul would qualify for special education services, I could see the merit in joining forces with the team of available experts. Even though I was heartbroken that Paul had to leave the school where Keely and I were rooted, I gradually had learned to let go of an all-too-elusive ideal and accept the reality. But I never let go of hoping for the best for Paul and believing it was out there somewhere.

Paul was tested by a county school psychologist whose results were very much like those we had accumulated to date. She clearly liked Paul—a fact that soothed my wobbly heart.

In her summary, she wrote:

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Paul’s greatest area of deficit is in the distractibility arena, with scores falling significantly subaverage. The strengths Paul brings to learning include his curiosity, his humor, persistence, diligence, and a generally high frustration tolerance.

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After the bumpy ride that was spring for this child, I chose to delay telling him about changing schools, waiting until August to do so. I knew he would fret about the unknowns, and I figured at least I could shorten the duration of unease and let him settle into summer and regain his footing in this world. Furthermore, by August, I too would’ve had time to catch my breath, time to collect my thoughts and introduce the new school—Annapolis Elementary, otherwise known as Green Street—with enthusiasm.

As the time drew near, I rehearsed what I thought was the best way to explain the situation. Then August came, and I told him.

Paul had only one response: “What is Scott going to do without me?”