Raising Blaze

by Debra Ginsberg

  I was very disappointed in these results. Blaze was proving me to be a liar. Even though I begged him to cooperate and even sat in the room while Dr. Roberts administered one of her tests, Blaze was as intractable as he had been in the days following his birth when he’d refused to nurse or cry or get on with the general business of living. He had decided not to take the tests and so he didn’t. No amount of cajoling or pleading would get him to change his mind.

  Sally was only slightly more successful in obtaining any kind of valid information from the tests she administered. No matter how carefully a test was disguised, Blaze always seemed to know exactly when his abilities were being measured against a standard and immediately shut down. At least, it seemed that Sally was beginning to understand that Blaze did have some academic skills. “He knows his letters and most of his sounds,” she told me, “it’s just really difficult to know what else he knows because he won’t tell us.”

  I considered the speech therapist an absolute lunatic. She jumped up and down, alternately told Blaze that his behavior was inappropriate and that she thought he was a wonderful boy, and sang show tunes out loud. For once, Blaze seemed totally stunned into silence, if not submission. His fascination with the speech therapist was short-lived. After the first few sessions with her, he refused to work with her and simply hightailed it out of the room whenever he was scheduled with her. Luckily, she was reassigned to another school shortly after this and another, much calmer, woman took her place.

  None of the teachers who tested Blaze got what I felt were accurate results in determining his intelligence, potential, or what was “wrong” with him. In a way, it was like a repeat of the medical tests given to him right after his birth. Again, no conclusive results, nothing specific, no diagnosis. Only Blaze, it seemed, knew what was really going on and he wasn’t saying.

  I attended a series of meetings during those first few months of school to review the findings of the tests and assess placement for Blaze. Not surprisingly, all the school staffers felt that Blaze should remain in special ed. “What’s really important,” Sally told me, “is that he start forming some peer relationships and learning appropriate social skills.” I couldn’t imagine how Blaze was going to learn “appropriate” social skills from the kids he was now in class with. He seemed most intrigued by the boy who made noises and shouted out non sequiturs and had taken to imitating him. In fact, Blaze found the most inappropriate behaviors very appealing and sought to mimic them whenever possible. If he wasn’t acting like a total nut when he entered school, I reckoned, he certainly would be by the end of kindergarten.

  I began taking my father with me to the meetings at school. I had a paranoid hunch that my status as waitress–single mom wasn’t helping me when I tried to get answers from the staff about what exactly they thought was wrong with Blaze and why, exactly, they thought he needed to be in special education. My father was a big hit at the meetings. Dr. Roberts thought he was just wonderful and for the first time, I actually heard some of the other (all female) staff giggle. I found it vaguely repulsive that it seemed I could only get taken seriously with a man present, but I accepted it as fact and, from then on, I wouldn’t attend a meeting without him.

  Although I ran the gamut of emotions that year, from depressed and angry to ashamed and then vaguely hopeful, I never felt that Blaze would spend his school career in special-ed. I saw very few of the other parents in Blaze’s class on a daily basis, but I felt no kinship with those I did speak to occasionally. When the mother of the little girl in the wheelchair asked me if I would like to join a support group for parents of children with disabilities, I was actually insulted. My child did not have a disability—he was just not cut out for a regular classroom. He was not a round peg. He wasn’t even a square peg. The board for his shape peg hadn’t been built yet. And I had a nagging feeling that this was all a big joke to Blaze, that he understood the drill and could have followed it if he’d wanted to. But since the moment of his birth, Blaze has been both stubborn and unyielding. If his behavior was under his control, he wasn’t letting on—not to Sally, not to Dr. Roberts, and not to me.

  I could tell that most of the staff thought that I just couldn’t accept my son’s problems and most of them treated me as if I were likely to become hysterical at any moment. It would be years later, when I found myself working in special education, that I would finally be able to see what they saw or even have a point of view other than the one I held to then.

  Talking to the Ice Princess was especially horrible. Every time we had a meeting, she brought out more examples of Blaze’s “work,” which looked like textbook illustrations from the loony bin. There were Smoky the Bear puppets with eyes glued where the mouth should be, drawings of houses that looked like they’d been through Hurricane Andrew, and the letters of his name drawn in fragile, shaky lines. She seemed bent on making me understand that my son was really damaged in some way. All the while, that pitiless demeanor of hers never changed, no matter if I was cheerful, teary, angry, or distant. During one meeting, I asked her if she had any children of her own because I just couldn’t see a human baby coming out of that sub-zero body. She admitted that she hadn’t yet had children but she was planning to and—in any case, she added defensively—it made no difference to her ability to teach kindergarten or love her students. I thought perhaps if her students were all robotic Popsicles that might actually be true. What I told her, though, in a rare moment of honesty, was that I hoped that if she did someday have children, she would never have to face the kind of parent-teacher conferences I was having with her.

  I’ll never know exactly why Blaze’s first day of school resulted in such a complete disaster. I can’t tell whether or not he would even have been noticed if the school were in an urban area or catering to a different demographic. Sometimes I think that if the Ice Princess had been slightly warmer and willing to give him a chance at a second day in her class, perhaps things would have been different. Then I wonder, if Blaze’s behavior had sent up so many red flags, why had nobody ever mentioned them to me before? And I wonder why, although Dr. Roberts et al. asked me questions that were clearly geared to elicit certain responses (Does he line up his toys? Does he make eye contact with you? Does he cry when he hurts himself?), nobody ever told me what disorders they thought Blaze might have. The fact that I had never suspected school problems would be in store for Blaze made me ill equipped to handle what I felt was a full-scale attack the first day and I do believe that the tenor of those early meetings have affected my attitude toward the school system ever since.

  Many years after those first dark days of kindergarten, when Blaze was nearing the end of sixth grade, I requested a copy of his school file that was, by then, several inches thick. The special-education secretary was very busy that week and I was working at the school at that point, so I volunteered to copy it myself. The secretary happily complied since there aren’t many school jobs as onerous as copying (the copier’s always broken, the upper-grade teachers always have something more important and more urgent ot copy, and the staples are always getting caught). Parents of children in special education always get copies of all the IEP forms they sign at all the meetings they attend, but there are other pieces of paper in the file that most parents don’t see. There are notes between teachers, for example, work samples, written observations of the child’s behavior and other odds and ends. I would never have had the chance to read any of these if the secretary had copied the file herself. As I yanked staples out of paper packets and tried to catch floating Post-its, I paid careful attention to the beginning of the file. Dr. Roberts had since moved on to less stressful pastures, but I could picture her all over again when I saw her incredibly controlled, neat handwriting, not a dash or comma out of place. What intrigued me the most were the notes of her initial observation of Blaze on his first day of school. She had observed him from 9:00 A.M. to 9:20 A.M. and decided his entire school future in less than half an hour. She wrote:

  Do
es not understand the process of lining up and following other children or keeping same place in line (runs ahead of others when placed in line).

  Would not sit on his name spot.

  Had difficulty accepting limits; he wanted to eat another cracker and asked repeatedly for a cracker although he was told that it was not time to have a cracker; repeatedly tried to pull a chair over to get the crackers down from the shelf in spite of clear statements “No, you may not have a cracker.”

  I laughed about the crackers in spite of myself. To me, pulling out a chair and trying to reach the crackers sounded like good problem-solving—something Blaze hadn’t exactly excelled at since. I could just picture the Ice Princess having a meltdown over the sheer irregularity of it all. But I was curious about the rest. Dr. Roberts, the Ice Princess—even Sally—had always maintained that Blaze was unaware of his actions and unable to control his behavior. By that point, Blaze had demonstrated a vaultlike memory many times over so I wanted to know how much of kindergarten he remembered and what details were prominent in his recollections. I asked him to tell me about that year.

  “Well, Mom,” he began, “you know kindergarten wasn’t exactly the best time of my life. I don’t really want to talk about it.” I knew this better than anybody, but I urged him to continue.

  “I hated lining up,” he said. “We had to line up every day, all the time, for everything. Always lining up. I wouldn’t do it. I hated it. The teacher read us a story every morning and we all had to sit on our names in the circle. I didn’t like sitting on my name, either. There was a better place to sit on the carpet near the playhouse. I got put in time-out. Dr. Roberts came in and then I had to go sit in her office.” He stopped and took a breath. “I don’t want to talk about kindergarten, Mom.” I didn’t make him continue, although I was sure that if I pressed him, he could have come up with a few more tidbits, especially in his memories of the Ice Princess which, I knew, were almost as fond as mine (“I really hated her, Mom, she was the evil character of my school”). The point was that he remembered it all and was conscious of his behavior at the time. I’d always suspected as much but this knowledge hadn’t helped either one of us when Blaze started school. The classroom is the one place where Blaze has always kept his talents well hidden.

  Of course, I knew none of this at the time and had no experiences with which to compare Blaze’s entry into public school. After he’d been in school for a few months, I didn’t even know what was normal behavior for a five-year-old boy anymore and had to rely on Dr. Roberts and Sally to tell me. I don’t think I’ll ever really be sure whether Blaze’s behavior that first day warranted his immediate transfer into special ed or if that transfer precipitated other behaviors that really were worthy of a special-ed classroom. It’s a chicken-and-egg conundrum that will likely never be solved for me.

  As Blaze came to the end of his first year and we headed into the start of the second, I started looking outside the school for some answers as to why he didn’t fit into the expected classroom mold. This would mark the real beginning of our journey and an entry into the world of doctors, specialists, medications, and diagnostic labels. By the end of that first year too my father had changed his instructions for performing at school. Instead of “Give your teachers what they want” he told Blaze, “Pretend you’re like everybody else while you’re in school.”

  In my heart, I knew that my father’s advice was tailor-made for Blaze because the one thing I was sure of was that Blaze really wasn’t like everybody else. I could even see it when I dropped him off at school and came to pick him up. Around the other kids, he even looked different, less solid somehow, as if his physical body wasn’t quite all there. To me, Blaze looked like a character from one of the old Star Trek episodes who was in the process of being transported to a new planet. He looked as if he hadn’t quite beamed in all the way, as if there were still parts of him floating through space. I’d leave him at school and he’d smile at me, watching me as I left, waiting patiently, I assumed, for transmissions from the mother ship.

  [ Chapter 3 ]

  THE GOOD DOCTORS

  My relationship with those in the medical profession has long been an uneasy one. This stems partly from my parents, who have never liked or trusted doctors and have always had serious misgivings about the way most doctors practice medicine. My mother and father both had negative associations with the medical profession based on their own experiences and have never forgiven or forgotten. My mother had a grisly tale of a nearly botched tonsillectomy when she was a child. After the death of his own father in one, my father viewed hospitals as places where people went to die, not recover. An obstetrician pressured my parents into inducing labor when my mother was pregnant with her last child because he was afraid an approaching snowstorm would make travel to the hospital more difficult. My parents acquiesced and my sister was born a few hours later, not quite ready to come out, with a slightly underdeveloped liver that required two extra days in the hospital. Without ever explaining why, a series of gynecologists tried to convince my mother to have a hysterectomy after the birth of her last child. She was told that she would regret not having the surgery. Terrified, my mother got as far as the preoperative suite before climbing off the table and checking herself out of the hospital, never to return.

  When I was growing up, my parents transferred many of their misgivings to my siblings and me. Aside from clinic visits for immunizations, none of us ever visited a pediatrician. I didn’t go to a doctor for a physical, sick call, or checkup until I was an adult. My sisters and brother followed the same course. None of us took antibiotics until we were in our twenties. Most of us didn’t even know what antibiotics were until then. My father’s attitude was always clear. “Doctors are like mechanics,” he used to say. “If you take your car to a mechanic, he’ll find something wrong with it and if you go to a doctor, he’ll find something wrong with you. That’s his job.”

  Both my parents also believed that most ailments could be controlled by attitude and neither one of them was particularly tolerant of colds, flu, sprains or the like. “Get over it,” my father used to say. “Stop coughing.” I realize this sounds a little draconian in the telling. It wasn’t. My parents would never have denied any of their children medical attention if we needed it and we knew that. (When my brother had appendicitis, he went immediately to the hospital and when my sister fell out of a tree, nobody stopped on the way to the ER to question whether her leg was really broken.) However, we weren’t about to get extra attention and coddling if we got sick. My parents saved positive reinforcement for getting better or beating a cold before it turned into a fever.

  Long before it became trendy, my mother started exploring alternative methods of healing. Our kitchen cabinets were always stocked with homeopathic remedies, essential oils, and vitamins. She is the only woman I know who gave herself mustard plasters for catarrh (and honestly, who even knew what catarrh was?). Doctors, clinics, and hospitals were always a last resort.

  By their own admission, my parents were extremely lucky. Out of five children, there was only one broken leg and one appendectomy. In retrospect, this kind of health record seems nothing short of a miracle to me. Of course, growing up, it didn’t seem like a miracle; it seemed normal not to be sick and not to trust doctors. Blaze changed all of that—not just for me, but for my entire family.

  From the outset, Blaze had odd medical issues that required trips to, and conversations with, pediatricians and specialists. These began with the drama of his birth and the series of inconclusive tests. I was constantly on the verge of weepy hysteria the first few days of Blaze’s life and didn’t question much of what the nurses and pediatricians were doing. I just wanted to get my baby home. When he was finally released, looking no worse for the wear, I assumed that Blaze would need no more medical supervision than I had as a child. I was further off the mark than I could have imagined.

  When Blaze was four weeks old, I got a call from his pediatrician who said she w
anted to discuss some test results with me. Please, I begged her, it’s not anything bad, is it? Please, tell me it’s not something bad. No, nothing terrible, she assured me. Did I remember Blaze taking the PKU test? Of course I didn’t. He’d had so many tests, it was impossible to recall this one. Patiently, the pediatrician explained that the PKU test was given to all newborns at birth and then again at two weeks and it screened for some congenital abnormalities. Too frightened to speak, I looked over at Blaze, rolled up in a blanket and tucked into his straw carry basket. He was chubby and healthy and gorgeous. There couldn’t possibly be anything abnormal about this baby. One of the things the PKU screened for, the pediatrician continued, was hypothyroidism, or low levels of thyroid hormone in the blood. Congenital hypothyroidism could result in mental retardation, she explained, but it was treatable, so the test was an extremely important one. She barreled ahead, not giving me a chance to react to this information. Blaze’s test had not shown significantly low thyroid hormone, she said, but his levels were not as high as they should be. In fact, she added, the levels were exactly on the borderline between normal and low. After delivering this piece of news, she stressed that I didn’t need to worry, that he was still just in the normal range and that before she did anything she’d like to test him again in case his birth trauma or some other testing glitch had affected the outcome.

  I hung up and stared blankly at the wall. The test was wrong, I repeated to myself. The test was wrong. Consciously, I believed this, but on a deeper level I suspected that this simple test might only be the beginning, that Blaze and I were not going to get off so lightly.