Raising Blaze

by Debra Ginsberg

  Soon after, Blaze started showing some physical effects. His sleep patterns became erratic. Sometimes he’d have nightmares and sometimes he’d wake up in the middle of the night and not be able to fall back asleep. His eating habits changed too. He was either famished or refusing food altogether. And then he started to become irritable in the afternoons. When I was in college, we had a word to describe his condition: crashing.

  “I’m just not sure about this drug,” I told my father.

  “Well, have you tried it yourself?” my father asked. I admitted that I hadn’t. The thought hadn’t even occurred to me. I felt my father had a valid point. I had spent Blaze’s whole life trying to make his environment safe. I put plugs in sockets and tested jars of baby food. I wouldn’t let him watch violent TV shows and trained him to look both ways before crossing the street. I wouldn’t let him eat candy he’d dropped on the floor. But I’d been giving him a powerful stimulant without having even an inkling of its effects.

  So I took a single dose, no more or less than Blaze got every day. After the subsequent sleepless night, I was deeply divided about continuing to give my son this drug.

  As luck would have it, I had some help in making a final decision. The Journal of the American Medical Association came out with a report on psychotropic drug use in very young children just as Blaze was in the middle of his course of Ritalin. The report, which was profiled in Newsweek, Time, U.S. News and World Report, and newspapers around the country detailed an astronomical increase in prescriptions for Ritalin in the years between 1991 and 1995 for children as young as three and four years old. Ritalin, however, wasn’t the only drug the report mentioned. They were all there—Prozac, Zoloft, and Paxil plus some newbies: Clonidine, Risperdal, and Depakote. Clonidine is used to treat high blood pressure in adults. Risperdal is an anti-psychotic. Depakote is an anti-seizure medication. As for the antidepressants, the U.S. News and World Report article said that the total prescriptions for SSRIs (adults and children) in 1999 were no less than 84 million.

  Although I’d seen the JAMA report on my own, I started receiving all kinds of articles from friends who knew about my struggles getting Blaze through school. By the time it was all done, I had an inch of paper on my desk. There were articles about the role of HMOs in overprescribing psychotropic medications, articles about the decline in psychotherapy and behavior modification. There were articles profiling desperate parents for whom drugs had restored a sense of normalcy in their lives and the lives of their children and articles by doctors who swore by the efficacy of antidepressants versus doctors who vilified their evils. Most interestingly, I read an op-ed New York Times piece by Elizabeth Wurtzel describing her horrifying addiction to Ritalin as an adult.

  I began to think I’d had some kind of lapse of sanity myself. Clearly, Ritalin hadn’t worked any magic for Blaze. Rather, it was having a bad effect on him physically. What the hell was I doing giving him a drug that I didn’t believe in for a condition he probably didn’t even have? When I questioned Dr. B. about this, he shrugged and asked if I wanted to try something else.

  I asked the doctor if he could please speak with Blaze’s teacher. Mr. Davidson knew Blaze better than any teacher he’d ever had, I said. Perhaps after a conversation with this teacher he’d have a clearer insight into Blaze’s behavior at school. Dr. B. said he’d try to fit it into his schedule, which I probably didn’t know was quite packed because he was going on vacation; and he looked down at his watch.

  I left his office and never went back. I also took Blaze off the Ritalin. Again, Mr. Davidson reported very little change. But this time, he went a little further. He suggested that perhaps Blaze needed a stronger drug, that he didn’t think ADHD was the problem.

  “Forget it,” I said. “We’re done with this. Nobody knows what’s going on with these drugs or what kinds of long-term effects they might have. I’m not using my son as a guinea pig for psychiatrists and drug companies.”

  Mr. Davidson never mentioned drugs to me again.

  I took quite a bit of heat for my little trial with Ritalin. Aside from my family, nobody thought I had done the right thing by ingesting the drug myself. How could I gauge the effects the drug had on Blaze by taking it myself, they wanted to know, when it was proven that children responded differently to it? This, of course, was exactly my point. Why would I give a drug that was too strong for me to my own child? Besides, I argued, Blaze was obviously reacting badly to it. The risk/benefit ratio seemed indisputably tilted toward risk.

  I wish I could say that our brief encounter with Ritalin marked the end of our long day’s journey into pharmaceuticals, but it wasn’t. Nor could I ever settle the issue that easily. The problem was that I could see both sides of the dilemma quite clearly.

  When Blaze was taking Ritalin, almost every child I worked with at school was on one or more of the drugs mentioned in the various articles on my desk. There was a line at the nurse’s office at every lunch and recess. Parents were constantly “adjusting meds” and teachers were consistently reporting on subsequent behaviors. Some of these behaviors were fairly easy to report. Some of the kids just couldn’t keep their eyes open and conked out on their desks. Some of them had stomachaches. Some drooled. A few showed no signs at all. There were some familiar refrains among the staff:

  “Did Mom switch his meds?”

  “Is she off her meds again?”

  “Isn’t he doing great on those new meds?”

  There was an almost overwhelming relief among teachers when children were started on a course of drugs. And who could blame them? Their arguments were undeniably convincing. With a class of thirty kids, how was it possible to teach the prescribed curricula in the time allotted when a few of them were disruptive, inattentive, unfocused, and unmanageable? Teachers complained bitterly about having to cater to kids with special needs when, clearly, they shouldn’t be mainstreamed in the first place. So many of these kids were so much easier to teach when they weren’t jumping out of their skins—when they were on medication. And, really, wasn’t that in the child’s best interest? Many teachers and staff were taking antidepressants themselves. At one point the teacher of an ADHD student said frankly, “It’s an absolute sin that this child is not on medication.” The student’s mother had tried Ritalin and, like me, had decided that it was having a negative effect on her son.

  Although their attitude seemed harsh and uncaring on the surface, I understood the teachers’ point of view. Most of the time they were grossly underpaid, understaffed, and overworked. Almost every teacher I knew regularly shelled out her own money for class materials. To top it all off, the teachers were expected to make sure all their students performed well on the standardized tests that were the worshipped conduits of public funding. Added to this were children whose ability or behavior was totally off the scale, and their overconcerned or underconcerned parents who fluctuated between extremes of denial, anger, grief, and self-righteousness. The teachers in regular education had no training at all with which to combat this kind of onslaught. As for the aides (of whom I was one), they got paid barely above minimum wage to teach, toilet, comfort, paint, soothe, discipline, and, of course, make copies. I had met and worked with teachers who were gifted, indifferent, devoted, talented, ignorant, stern, and loving but I had yet to meet one who wished harm on her children. Most were simply burned out and the issue of jumpy kids with learning problems or newly fashionable disorders was one more match to the embers. Yes, it was easier when they were medicated. For everyone.

  I had no problem with the way teachers, school psychologists, and special-ed administrators felt about medication. What I did have difficulty reconciling was that teachers and school staff often found themselves in the position of tentatively diagnosing the kids in their classes and then suggesting possible medications to parents. If not quite as overt as this, many teachers certainly encouraged parents to “explore options,” and school psychologists, although not medical doctors, definitely mentioned specifi
c drugs by name and offered up diagnoses as if they were doughnuts.

  I could understand why teachers and school staff became so involved in this cycle of diagnosis and medication. I was tempted to try my hand at it, too, while I worked with the kids in my program. After all, teachers spend a lot of time with the children. But I didn’t think—had never thought—it should be the teacher’s job to venture into the business and practice of psychiatry as so many of them seemed to do. I couldn’t assign blame because I didn’t see the cycle as being anybody’s fault. But I wondered if there was a subtle drift toward putting teachers in the position of doctors. In the end, I thought, who would do the actual teaching?

  The drug question was not a simple one for me and was made even more complicated by the fact that I had no idea what the future held for my son. I couldn’t say if he’d be able to handle the pressures that would come with adolescence. All I knew was that, as his mother, I was painfully limited in orchestrating his destiny. If, at some point in the future, we were offered a drug that was tested, proven safe and addressed exactly what made navigating the social and academic milieu so difficult for Blaze, I wouldn’t hesitate to give it to him. Hell, I’d take it myself. Nor did I have any quarrel with parents who gave their children medication. That was just one of the choices we had to make as parents and we had to make them based on our faith and what our hearts dictated. All I really wanted was to be able to make this particular choice without pressure or derision. That was what my heart told me.

  Blaze’s graduation from sixth grade was a big deal at his school. Although they stopped short of donning caps and gowns, the students participated in a ceremony as full of pomp and circumstance as any graduation I’d ever attended. There were songs, a processional, and the awarding of signed diplomas (albeit half-sized). I tried to sit as far away from the rest of my family as possible to avoid crying in front of them and everybody else. I’ve always hated crying in public places. One might as well be naked. In fact, being physically naked might even have the edge over that kind of emotional nakedness. Unfortunately, complete removal from my family was impossible, so I settled for donning my sunglasses instead. That’s always been one of the advantages of living in southern California: sunglasses are appropriate at every occasion.

  Once the ceremony began, and I saw my son sitting quietly and proudly with his classmates (all of them together, no special-ed separations here), the tears began to roll down my cheeks, splashing wetly onto the program in my hands. And, of course, one of my sisters had to comment, “Look, Debra’s crying. Aww,” and further loosen the tenuous grip I had on my emotions. Family can always be counted on for these things.

  I wasn’t weeping out of a sense of sentimentality, although that would probably have been justification enough to shed a few tears. Rather, as I watched Blaze walk across the stage and shake hands very properly with the principal (who then abandoned decorum and gave him a big hug), I was thinking about what a struggle it had been to come to this place and about how many battles had been fought and won and lost.

  When Blaze first came to his class, Mr. Davidson had explained his motto to me this way:

  “You know the expression, ‘Going for the gold’?” he said. “Well, in my class, we’re going for the beige. Everybody blends. The biggest danger for these kids is the fact that they stand out. They are treated differently and then they become targets. I don’t treat my kids as though they are different. It’s amazing how kids can rise to your expectations, if only you have expectations to hold them to.”

  Although this seemed like such an obvious philosophy, it had taken so long for somebody to apply it to Blaze. He’d gotten so little time to show that he, too, could blend. In a sense, I felt he’d been a little cheated, that over the last seven years he should have been allowed more moments like this one to gird him for what was to come. I kept thinking about the scary tower from his dreams. I could still see it looming in the distance. And I wondered, hopeful and anxious, if, without Mr. Davidson to carry him to safety, he would be able to walk past it on his own.

  [ Chapter 13 ]

  WATERLOO

  October 2000

  When I was in the throes of labor, sweating, gnashing my teeth, and wondering how I would ever make it through the experience alive, the labor nurse looked at me comfortingly and told me, “Don’t worry, you won’t remember any of this later. The first time that baby looks up you, it will be all gone, not even a memory of this pain.” That labor nurse wasn’t entirely wrong; it was true that my body forgot the pain almost immediately. But she left out a few things. She didn’t mention what else I would remember and ponder, years later, in ever-narrowing concentric circles of thought. She didn’t predict what the rhythm of my life would be and how complicated the simplest acts would become. She couldn’t have known, of course. She was sure I wouldn’t remember that pain. But my mind, at least, has remembered and those complicated simple acts happen every day.

  This is what it’s like now.

  I drop my son off at school and walk home in a state of total misery. I don’t want to leave him there and he doesn’t want to stay. At home, I waste hours folding clothes and writing letters. At ten o’clock, afraid that the phone is going to ring at any minute with bad news from my son’s school, I decide I’ve got to get out of the house. I walk to the postal store to mail the useless letters I’ve spent all morning writing.

  I round the corner where there’s a Baskin Robbins and I see a man standing outside, peering in. I think, can he really be that in need of ice cream at 10:45 A.M.? Why is he waiting there for someone to open the door and set the bells on it jangling? Why is he waiting to be ushered in as if he’s an expectant kid on a warm summer morning? So I take a closer look and see that he’s wearing a pink shirt and navy pants and, in his hands, he clutches a baseball cap. And on the baseball cap is the 31 Flavors logo, the same logo that’s on the shirt he’s wearing. So, oh, I think, he works there and he’s waiting for someone to let him in. But this poses a whole other set of problems.

  Why is he working at Baskin Robbins for what must surely be minimum wage? He’s a grown man. Actually, more than grown. By the looks of it, he’s in his forties or maybe even early fifties. Is this the only job he can get? Has he been laid off by his company? No, impossible; no man of this age works scooping ice cream for minimum wage, unless…Well, unless this is the pinnacle for him. Unless this is what they meant when, at school, decades earlier, they said he would probably lead “a productive life.” I slow down and steal another glance at him but I can’t see his face as he leans into the door, staring into darkness.

  And then I think what has been brimming over in my brain since the second I saw the hat with its logo. I think it in the liquid, wordless sense that I reserve for these kinds of thoughts. They never really formulate, but then, suddenly, there they are.

  Is that my son a few years from now? This is what I think.

  Suddenly, I start concocting all kinds of other scenarios and then shoot them down just as quickly. He’s the manager or owner and that’s why he works there. No, that doesn’t make sense, because if he were the manager, why doesn’t he have a key? Maybe he forgot his key today. No, if he forgot his key, he wouldn’t be standing at the door, peering in. Maybe he’s waiting for his partner. No, you don’t need two partners working in one little ice cream store. It has to be that he can’t have any other kind of job.

  But is this such a bad job? Is it a terrible thing to work at an ice cream parlor at the dawning of a new millennium and wear a pink shirt with a logo? I think of phrases like honorable profession and self-supporting.

  I wonder, could this be my son?

  I have to wonder, because every day there are moments like this. Every day now, I straddle the line between faith and the impossible. Yesterday, my son told me not to worry, that most of the time he speaks metaphorically. Yes, metaphorically was the word he used and I know he understood its meaning. Yet, two days ago he ran screaming from his seventh-grade
classroom because he heard the sound of distant sirens. I wonder because now we might as well be starting all over again, in that kindergarten classroom, with nothing “they” say matching what I feel. Only now it is so much worse, because now it’s not new, he’s not new. He’s a big boy, on the verge of adolescence, not the cute little five-year-old who started kindergarten so long ago. This time it feels like an ending, not a beginning.

  I wonder if this man’s mother knows where he works and what he does when he’s not here. I wonder what this man thinks when he’s alone. I want to ask him but more than that, I want to see his face. I want to see if there is an expression of vacancy there. I want to see if he’s smiling. I want to see if he looks…I can’t help it…the word normal springs into my head.

  My son looks normal, I think. My son is beautiful. Is this, could this be, my son?

  I keep walking and wondering and I don’t look back to see if the man gets into the store. I mail my letters and I think about my son. I wonder what kind of day he’s having in school. I wonder if, when I pick him up later today, I’ll hear that he “did a great job” or that “we are quite concerned about him.” I think about how my son, with his undiagnosable differences, has allowed me to see the divine not just in himself, but in everything. I try to understand how divine consistently translates into damaged. I wonder what I’ve done wrong. I wonder what I’ve done right. I wonder if he’ll be able to make it through seventh grade, through high school, get a girlfriend, have a family, play guitar, discover a cure for cancer, support himself working in a Baskin Robbins getting minimum wage. I wonder if he’ll live with me forever. I wonder, finally, how long I will live myself. I can’t die, I think to myself. I simply can’t die. Not while he is alive.