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Chapter 4

Fighting for Our Rights

Lame but expected to carry

Simple but demandingly complex

Creative but left without canvas

Anxious but made to sit

Different but pressured to conform

I SAT ANXIOUSLY in the ARD committee meeting as Paul’s placement was debated. It was July. And all these county officials were seated around the table because of my objection, after the fact, to the outcome of the spring meeting. When a decision was finally reached, I was relieved. Paul’s placement changed from Level IV to Level V—full-time special education services.

It was just after this meeting, and by happenstance, that I became aware of a letter, written in June to the county coordinator for special education and signed by nine professionals who worked with Paul during his year at Annapolis Elementary, including his teachers, the school principal, and the school psychologist:

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Unique is an adjective that has been used frequently to describe Paul. . . . Every effort has been made to help Paul gain the necessary learning behaviors for school success. Paul is a delightful child but we have failed to find strategies that would enable us to meet his needs. In our collective educational experience, Paul is unique. His needs cannot be met in a traditional public school setting. We believe his needs exceed our school system and we look to you to help us find the appropriate educational placement.

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I was deeply moved by this expression of concern for Paul and by the collaborative effort to highlight the extent of his needs. In fact, their advocacy was powerful, and I could see that, maybe, it wasn’t just my persuasive gifts that had inspired this recent placement decision. Regardless, I was on to the next hurdle: Level V services were not provided within any public school in the state.

As mandated by the Rehabilitation Act of 1973 and the Individuals with Disabilities Act of 1975, all children with disabilities in the United States have the right to a free and appropriate education. So we needed to seek a non-public school that could meet Paul’s needs, one that was approved by the Maryland State Department of Education. Wow, I thought, we have less than six weeks before Paul’s third-grade year is to begin.

By August, despite the joint efforts of the county officials and myself—casting our net in a thirty-some-mile radius—a viable, or even marginally acceptable, school had not been found. I was left only one alternative—a new school located about twenty miles north of Annapolis with a curriculum designed to serve students with learning differences. But despite the professional credentials of the staff, the small class size, and the remedial program, the school did not have MSDE approval. This meant that the steep tuition, as well as transportation and all other costs, fell to the parent. I was relieved to have found a school, and even hopeful about its being a good place for Paul, but I was worried about sustaining the financial commitment into the future.

In a repeat performance of just one year earlier, I told Paul in August that he’d be starting a new school, The Meadow School. On the morning of the first day of school, I put Paul’s clothes out on his bed as I usually did to help him get himself ready.

He promptly came into my room, with the clothing in his hand, and said to me, “These are the clothes I am NOT wearing to the school I am NOT going to.”

I don’t remember my reply but do know that Paul’s resistance must have been fleeting, as we arrived on time to his new school, where Paul was immediately welcomed with open arms.

The director of Meadow School suggested I hire an attorney to pursue funding in accordance with my rights as a parent of a handicapped child. She said the tuition at Meadow was comparable to what the county would have paid for any of the non-public alternatives they had sought for Paul. She also said if his case was approved for funding, it could pave the way for other students in her school who may have, or may obtain, Level V eligibility. She gave me the name of a specific attorney—the principal of a special education law firm in Washington, D.C., who she said was widely recognized for his legal prowess and his successes in securing appropriate placements for students with disabilities.

I met with the attorney, Michael Eig, and retained his services. While his legal fees would be at my expense, Mr. Eig had confidence in the merits of our case and explained the possibility of his fees being covered, along with the tuition, if we prevailed. Come what may, I decided to take the risk.

After failing to come to a resolution working within the county school system, Mr. Eig submitted a formal request for a due process hearing at the state level. The hearing—to take place in Lutherville, Maryland, in front of a judge and three impartial hearing officers—was scheduled, and more than a dozen individuals were summoned to provide testimony.

I had a lot riding on the outcome of this case, and when the day of the hearing arrived, I was anxious. Paul had no knowledge of any facet of this legal process and went off to school that morning as he did any other day, except for the excitement of taking cupcakes for all his classmates. It was his ninth birthday.

The hearing itself, for me, was brutal. I don’t know if the fact that it was Paul’s birthday heightened my sensitivity. But I do know that it was hard to sit there and listen to the multiple “experts”—none of whom had ever met Paul, much less worked with him—deliver what I remember as hours of testimony riddled with inaccuracies and designed to make the case to deny funding for his current school. I wanted to set the record straight when incorrect or misleading information was presented, but I wasn’t given the opportunity. I looked to my attorney, whom I had come to admire and whose reputation I knew was well deserved, but I don’t remember feeling satisfied that critical facts were clarified. My only saving grace was that my sister Erin had accompanied me and corroborated my sense of it all.

During my year of working with Mr. Eig, his teenage son was killed in a freak accident. Sometime after this tragedy, I was on the elevator going up to his law office and somehow knew that the woman next to me was his wife. I remember how she looked—grief stricken—but I couldn’t relate to how she must have felt. Yet standing next to her that day is engraved in my memory. At the time, I knew my problems paled in comparison to hers and my heart broke for her and her husband. I have no idea whether this tragedy had an impact on his performance on Paul’s and my behalf during that pivotal hearing. But if it did, I can more than understand.

It would be days before we received the hearing review board’s twelve-page decision. It was not in our favor. This was a blow to me, intensified by reading the findings—chock-full of information that just wasn’t true. For example, it stated that I had two other school offers before enrolling Paul at Meadow School. I did not. I had no other offers.

Mr. Eig offered to continue to represent us on a contingency basis and I decided to go forward. In December, he filed a formal complaint, appealing the decision to federal court. Already daunting, this prospect grew more formidable when I received the official paperwork declaring: PAUL, a minor by his parent and next friend, JESSIE DUNLEAVY, Plaintiffs, v. WILLIAM DONALD SCHAEFER, et al, Defendants. Geez, I thought to myself, Paul and Jessie, toe-to-toe with the governor.

Fortunately, this drama never played out because some months down the road the county made a settlement offer—a funded placement at the current school in exchange for dismissal of our pending federal suit. I accepted and the case was closed.

Paul had a pretty good run throughout his third- and fourth-grade years. I knew the school wasn’t the perfect match for him, as did the director when he was admitted, but I knew too—as Dr. Denckla had said—that perfection in a school for Paul was not to be found. Nevertheless, I was grateful that his teachers loved him, and he them; that he made some academic gains; and that he was popular among his peers. In addition to reading and mathematics, Paul had classes in social studies, science, art, and music and also received much-needed speech therapy and occupational therapy. Paul’s medication—imipramine and Dexedrine—had stayed the same since concluding the trial phase of his first-grade year. However, his attention deficit continued to be a significant challenge and I knew his academic potential was far from realized.

*

BY THE END of fourth grade, I noticed Paul becoming increasingly fragile, more readily prone to tears. I knew the discrepancy between his ability and his performance must have been a source of frustration, and I figured he might have been more aware of his differences as he matured. These concerns prompted me to take him to Jonathan Watkins, a child psychologist in Annapolis with whom Paul began weekly therapy sessions.

With no signs of improvement in Paul’s spells of unresponsiveness, I also had him tested for seizures. A sleep-deprived EEG was performed with results that came back normal, without any evidence of seizure activity. This would be the first of several such tests, but the results were always the same.

Dr. Watkins and I agreed that it was time to re-evaluate Paul’s medication, and he suggested local psychiatrist, Norman Roberts, to help manage it. Dr. Roberts referred us to a neurologist—Thomas Hyde, in Chevy Chase, Maryland—for an assessment. After Dr. Hyde worked with Paul and provided a written report, Dr. Roberts decided that we would discontinue the Dexedrine, which we did right away, and increase the dosage of the imipramine, which would have to be incremental since it required monitoring with blood and EKG tests. Medication changes were always difficult for Paul, and for me, and this one was no exception. I can’t overstate the challenge of managing Paul that summer, a situation I knew called more for patience than for discipline.

Before we had reached the better side of this tough transition, the school year began, and it didn’t surprise me that Paul’s behavior was adversely affected, with the first two weeks of school being the worst. For the first time, he talked back to his teachers, questioned certain routines, and one time even threw his books to the floor. He never took his frustrations out on another student. The fact is, Paul remained popular with his peers but nonetheless was a challenge for some of his teachers.

Several weeks into the school year, as Paul had begun to settle in and benefit from the medication change, Dr. Watkins visited the school to observe classes. He reported back, telling me he felt Paul’s current level of “acting out” represented a positive step in his development and said Paul was by no means a clinically challenging child. Paul was questioning things that didn’t make sense to him and standing up for himself in a more aggressive manner—a heartening change from the withdrawn child he had been. Dr. Watkins also noted that the teachers would benefit from advice on classroom management, telling me he saw them as relatively unsophisticated in this arena, something I felt was understandable for a new school with a new team.

Paul’s first report card was issued in November, by which time the medication transition was behind him and his behavior had resumed an even keel. His homeroom and reading teacher wrote:

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Paul is a wonderful child who is in the process of redefining who he is. Last year, I saw this withdrawn, quiet student who was not always available for learning. This year, I see a child hungry to learn new things. He asks questions, expresses opinions, and shares his feelings. While these expressions may not always be presented in the most socially correct manner, he is taking risks and learning his ideas and thoughts have value.

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Later that fall, the school began a behavior modification plan for all students in Paul’s age group that would put him at a disadvantage. Before it was implemented, Paul’s homeroom teacher called me to express her concern. After explaining that the plan came about because some of the children were hurting each other’s feelings, she said, “Since Paul’s behavior has improved, and, considering he was never guilty of being hurtful to his peers, I’m worried that if Paul feels the plan is unfair, it could spark a setback for him.” I appreciated her thoughtful communication but don’t remember feeling worried.

When Paul came home and talked about the new system, I didn’t detect any apprehension on his part either. The children were to carry a chart to each class, and those who met the standards for behavior would get a star; those who did not would get a check. Three checks in any given day for a child would require a conference with the parents.

Several days later, the director called me to say I needed to come in for a conference the following morning because Paul had received three checks that day. I said I would be there and was sorry to hear he was having trouble. I told her about the homeroom teacher’s concerns and said that I too hoped this new strategy didn’t represent a setback for Paul, mainly because he’d been doing so well and was not a part of the troublesome behavior that precipitated the need for this system.

The director’s response was confusing. “Paul was the sole reason for the implementation,” she told me. “I don’t know where the homeroom teacher is coming from.”

I rescheduled my work obligations for the next morning and went to the conference, eager to meet with the teacher and the director to learn about Paul’s behavior and the ways I could support him and the school. To my surprise, Paul was a part of the conference, meaning I was unable to clear up my confusion. At the end, I said I had a question that I would prefer discussing without Paul. The director said she needed to walk Paul back to class but would return. I waited with the teacher, but she never made it back.

It wasn’t long before I was called to come in again for a conference. Paul had received three checks that day in one forty-five-minute class, something I didn’t think was possible based on the premise that a student was to receive either a star or a check for each class. Even so, I went in, but the director did not attend the meeting. In truth, I never had any further communication from her about anything.

Because Dr. Watkins believed that the methodology behind the behavior management system was indeed working against Paul—just as the homeroom teacher had surmised—he called the school and scheduled a meeting with the director and the teachers. His appointment was canceled by the school twice, and his third attempt was answered by the school’s newly hired psychologist, who would be the point of contact from there on out.

I didn’t get why the school kept Dr. Watkins at arm’s length. But eventually, he was able to work with the school’s psychologist, which turned out to be productive. Together they devised a new system for behavior management, which took effect in March. Shortly thereafter, Paul’s teacher reported: “Paul is responding well to the system devised by Dr. Watkins. In fact, he has earned the maximum number of points in ninety percent of his weekly classes.”

In spite of the mysteriousness surrounding some aspects of the home-school communication, things were going well for Paul, and I was grateful. But in the spring, at what I thought would be a routine ARD committee meeting with county officials and the school’s new psychologist representing the director, I was told Paul could not return to Meadow School for his sixth-grade year. I was shocked. With my heart pounding, I struggled to maintain my composure.

“Why?” I asked, incredulously.

After a minute of deafening silence, I looked directly at the school’s psychologist, “Is this decision based on Paul’s academic standing or his behavior?”

This man, whom I barely knew, slammed his fist on the table and said, “Both!” That would be the only explanation I would ever receive. On top of the fact that I didn’t understand, I was alarmed by the lack of professionalism, not to mention compassion. Trumping this poor showing, though, was the implication for Paul’s fate. I desperately wanted consistency for him, and I knew all too well that our options were dismal. But one thing was certain: I was powerless. And my confusion took a back seat to my worry.

Even though I was upset about the school’s decision, which was not documented in the report cards or elsewhere, I did not broach the subject with Paul’s teachers. I decided that when the time came for the year-end parent-teacher conferences, I would listen more than talk. I felt it was imperative to maintain the bond I had established as a parent at the school. For one thing, Paul loved these people and, for another, I didn’t know when we might need them again. Furthermore, I did have others with whom I could commiserate about this unexpected turn of events and the treatment that I saw as appalling.

In the conference with Paul’s two primary teachers, I was pleased with their feedback. Mirroring the written reports, they raved about Paul’s sensitivity, his sense of humor, and his academic progress. I was told his teachers were sad to see him go and did not agree with the administrative decision. They said Paul was far from the biggest academic or behavioral challenge facing the school and reiterated how well he had weathered the storm of the medication change that had plagued him at the start of the year. They also lauded Dr. Watkins’ advice to the school in general.

One of the teachers told me it was a challenge for the school to adjust to being accountable to the county for the few funded children enrolled there. She mentioned too that the county paid for a classroom aide the school said Paul needed, who wasn’t used for Paul. I did not know whether any of this was a factor in Paul’s dismissal, but I wondered. In fact, as one is prone to do in a communication vacuum, I wondered many things. Maybe I had been a pawn from the outset, a test case to pursue funding without the school having to conform to the full-blown MSDE approval process. I will never know. But this was another undeserved blow in Paul’s journey, one with tentacles reaching into the future.

*

LUCKILY, I FELT a kinship with the special educators in the county, and I sensed the feeling was mutual. We may not have always seen eye to eye, but we were always respectful. One county professional and I went together to Baltimore to visit a school, which we then agreed to rule out for Paul. The school was impressive but served students with head injuries, multiple physical handicaps, and emotional disturbances. Paul had come into his own with his peers at Meadow School, and we didn’t want to see him lose that. We also noted the skill level of the students in Paul’s age group was beneath his. Every professional we worked with, including Dr. Denckla, agreed.

I worried about the detriment of a program that would teach to Paul’s weakness. Because his test scores were poor and he was often hard to reach, he was easily underestimated. However, he was capable of critical thinking and needed intellectual stimulation lest he wither away in the pitfalls of low expectations, which frightened me more than anything.

The county submitted applications for Paul to a couple of other schools located in the Baltimore-Washington vicinity where, once again, we were disadvantaged by the late application. Further working against us this time around was the perplexing dismissal from Meadow School.

I couldn’t help but get my hopes up when The Lab School—my first choice—invited Paul to spend a day. A few weeks after Paul’s visit, I was able to speak with an admission officer who said a space for Paul was unlikely but gave me feedback about his visit. “In many ways, Paul looked familiar,” she said. “He was receptive to the instruction and was dutiful and polite, but his processing seemed to be an area of difficulty. He was not inattentive by choice and certainly not rude, but he couldn’t always focus.”

She also said Paul was cautious in his interactions, and she noted his tremor, asking me if he was a nervous child. I said he was not, but in a new setting he was shy. She told me they might end up with a space before school started but then said she was concerned about why Paul had not been invited back to Meadow School.

I knew it. I was painfully aware of the fine line I walked. If I was candid, pointing to the school’s absence of professionalism in providing me needed information, I risked being perceived as a problem parent. At the same time, I was desperate to keep Paul from being unfairly judged. I suggested she contact Paul’s teachers directly, as well as Dr. Watkins, for additional information.

Aware that I had skirted the issue, I wrote a follow-up letter to the admission office, which may well have been overkill on my part, but I didn’t want to leave any stone unturned. The thing is, I had fallen in love with the school and wanted it so badly for Paul that I could taste it.

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June 17, 1994

Dear Admission Office,

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Thank you for the information you provided regarding Paul’s application. Although this process is stressful for me, and I do worry it is tiresome for you, I am dedicated to providing all the information I can.

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Despite my many unanswered questions surrounding the current school’s re-placement decision, which is not documented in the report card or elsewhere, I have a good relationship with Paul’s teachers who all stand ready to provide information in support of his application. I am attaching his year-end reports.

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I sensed during our conversation that one of your concerns had to do with his interaction with others. I understand your reasoning based on his visit, but he works well in a group and is sought out by his peers. Paul is taking Karate classes, which was his idea, with mainstream children and is doing well. Also, he is registered for overnight summer camp—a week camping in Shenandoah—again with mainstream children ages 10 to 13 who he doesn’t yet know; this too was his idea.

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At the end of the year, the dispatcher at Associated Cab Co., who provided Paul’s ride to and from school each day, called to tell me Paul is the nicest child they have ever transported. Recently, Paul found a twenty dollar bill in a public parking lot, which, without my knowledge, he took to a homeless shelter in our neighborhood. In fact, Paul is amazingly well-adjusted considering his differences, the ego insults he has endured, and his untapped potential.

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Because I agonize over whether you will accept him, I forgot to mention that, if you do, he will bring much to your school.

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While my contacts at the county are optimistic about the space situation, I am obviously anxious.

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Thank you again for your time.

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Warm regards,

Jessie Dunleavy

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A space never materialized.

I took Paul to a well-known educational consultant, Ethna Hopper, located in Washington, D.C., for an assessment and for her advice. Paul’s long-time summer tutor since kindergarten sent a letter to Ms. Hopper in advance of our visit, providing an overview of Paul’s progress and distinguishing the deficits she believed were due to Paul’s handicaps from those she saw as programmatic. In conclusion, she wrote:

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My history with Paul is perhaps unique in terms of its duration. As with any successful teacher-student relationship, roles frequently reverse. Paul has taught me a great deal about diligence, flexibility, selflessness, and humor, all often in the face of great strain. He is undeniably a gifted, talented child who seeks the appropriate instructional format for reaching his high potential.

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In addition to the schools where we had already applied, Ms. Hopper suggested a school for bright children in need of an individualized program in Charlottesville, Virginia, where Paul would have to board—a concept I just couldn’t imagine but one I probably should’ve considered. She agreed that Paul didn’t need a clinical setting and said Paul’s dismissal from Meadow School probably poisoned his pending applications. Lastly, she urged me to ask the county to strike from his record the statement that he required a classroom aide, considering he didn’t have one.

*

IN AUGUST WE left for our annual two-week beach vacation with my extended family. I was determined to have a good time but was unsettled by not knowing where Paul would go to school. With several balls in the air, and the need for me to ride herd on the process, I took my notes and the needed phone numbers along to the beach. Our cottage didn’t have a telephone and, with cell phones off in the future, I used a pay phone across the street. After days of multiple calls and lengthy discussions—keeping me on the pay phone or standing by it awaiting a call—I finally moved a Rubbermaid chair across the street, parking it next to the phone for the duration of our stay. At least then I could sit as I watched my family members head over the dunes to the ocean. I think they would vouch for the fact I spent half my vacation tethered to that pay phone.

In spite of my focus and determination, we returned home without a solution. By the end of the month, with only a couple of remote possibilities still in play, the county put another option on the table—six hours per week of what they termed “home and hospital teaching.”

The first day of school came fast. Foreseeing the lack of resolution, I had taken a couple of days of leave from work. After getting Keely off to school, Paul and I went to the Baltimore Zoo for the day. We had fun, and I was able to leave my troubles behind. After we saw all the animals, and I mean every last one, and had lunch, we went to the gift shop where I told Paul he could select a small stuffed animal based on his favorite of the day. A lover of all living creatures, Paul couldn’t decide between the giraffe and the prairie dog.

“The giraffes were the most interesting,” he said, “but the prairie dogs were the most cute!”

He asked me to decide. We got both.

The next day, we went to Ikea and got Paul a desk and chair and supplies for setting up a homeschooling work area, which we did in a sunny nook in a back room of our house. Over his desk, we hung a bulletin board and a small framed print, selected for its fitting message, “Dreams are Travels for the Soul.”

Thankfully, my parents took over after day two, but I was determined that this gap would be short lived. Taking the county up on the six hours of instruction per week, I got to work on figuring out how to cover the other twenty-some hours and, by October, I had devised a full schedule that would suffice while we continued to seek school alternatives. As an educator myself, I was fortunate to have connections. Supplementing the county teacher, who came to our house three times a week for two-hour sessions, I hired three other teachers: One was a colleague of mine, one had taught Paul in his most recent school, and the other was a special education tutor I knew of through my work.

There were lots of logistics that needed my attention, both practical and programmatic, but I was energized by what I had come to see as an opportunity for Paul. After all, he often needed one-on-one attention to learn and, even though he had made academic progress in recent years, he fell far behind the averages for his age and, more important, he fell far behind what he was capable of achieving. Maybe, with the focus and attention of this team of talented teachers, Paul would realize more of his academic potential and fare better in the admission process at one of the schools that could accommodate his unique strengths and weaknesses. In all, I found this far superior to parking him in a catch-all school that would eventually stifle his desire to learn.

After a routine ARD committee meeting in November, during which I updated the team about Paul’s progress, the director of special education for the county gave me the name of an attorney who she said may be helpful in seeking county funding for my plan. I was grateful for the tip, which I acted on the same day, but was surprised—and touched—that a person in her position was arming me with what I needed to challenge the system she represented. I didn’t know where we would land but, that aside, I was reminded of human goodness and the merits of teamwork.

The attorney, Wayne Steedman, was located in Towson, Maryland, and couldn’t have been more different from my former special education attorney. There was no high-rise office building and no slick facade. In fact, there was no firm. Formerly a social worker serving special education students, Mr. Steedman had seen too many children whose needs had slipped through the inevitable cracks of the bureaucracy and decided a law degree would further empower his advocacy for these deserving kids.

Mr. Steedman found Paul’s case compelling, and I retained him to represent us. As I peruse my files, I’m reminded of the many back and forth letters, including declarations from the county attorney, that were initially upsetting to me. But, without going to court, we came to a resolution by late winter. While the school year was more than half over, I was pleased with the outcome and grateful to have encountered another good person along the way.

At the end of each day that year, Paul was dropped off at my office, located in an old three-story house that had been converted to office spaces, where he quietly entertained himself from 3:30 to 5:30. He had a box of things he played with, mostly paper clips, string, and sundry office supplies he had accumulated, which he kept in the eaves on the third floor.

In the grocery store one winter day, Paul picked up a pack of valentines and put them in our cart. “Paul,” I said, “you can have the valentines, but who are you going to give them to?”

“All my friends in your office,” he replied, as if it should be obvious—“Rene, Charlene, Irfan, and Uncle Goldblatt”—a name, to the amusement of all, that Paul had somehow adopted for my boss.

The teacher Paul spent the most time with that year was Gretchen Nyland, a veteran art teacher whose dedication to providing multidisciplinary experiences for Paul was matched by her endless creativity. In one of their many projects, Paul made a pinch pot mouse out of clay, which they glazed and fired. Paul loved the experience and wanted to make more. One thing led to another, and Paul ended up producing dozens of these little guys. Subsequently, Gretchen convinced Annapolis Pottery—a well-known shop in downtown Annapolis—to sell Paul’s mice. These tiny creatures were placed on the counter near the cash register with a little sign that said, “$2 each.” Several of my friends and family members bought one, except for my mother, who I think bought five! The day I came home with my purchase, Paul looked at it, then looked at me, and said, “You bought the mean one.”

Annapolis Pottery gave Paul the option of selling all his mice to the shop or stopping in at regular intervals to collect his portion of the proceeds. He chose the latter, and Gretchen helped him open a bank account, where they made frequent deposits and kept track of his money.

Sarah Hyde, Paul’s primary academic teacher for the year and a highly respected and experienced special educator, wrote a brief summary as the year came to an end:

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Paul is intellectually curious, expressive, well-behaved, charming, exceptionally empathetic, and fun. His strengths include his visual perception, his memory, his sense of humor, and his ability to get along with others. His weaknesses are his fine motor skills, his written language, and his math concepts with his primary weakness being his inconsistent attention span.

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Paul probably learned more during this particular year than any other of his life. Some of his learning was rote—he memorized his multiplication tables, for example—but also his curiosity about the world and his interest in history, politics, music, and art soared. In general, he had a lot of self-doubt regarding his differences and had noticed that every time he left a school, the other children stayed. But he felt good about himself during this year, and I think we both had turned lemons into lemonade.