Authors: Debra Ginsberg
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 Repor
t, 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 specific 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.
October 2000
W
hen 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.
I’m still contemplating my own mortality when I find myself rounding the Baskin Robbins again on my way home. The door opens suddenly and out comes the man, holding a scarecrow. He positions it in a flowerpot outside the store. Decoration, I think. It’s fall now, almost Halloween. He turns when he hears me pass and smiles at me. He’s got a pleasant face, not a trace of vacancy in it. I wonder again if he’s the owner. I think maybe I should follow him inside, get myself a cone, and seep up some more information. But I second-guess myself again. I don’t really want to know more than I do at this moment. And besides, I think, I’ve never really liked ice cream that much anyway. I only come to these places when I bring my son along with me.
I wasn’t entirely unprepared for Blaze’s entry in to middle school. I knew that not only were we changing schools, but districts. Blaze’s new school district encompassed only middle schools and high schools and covered a much broader territory than his elementary school district. I knew too that a high school district has a different set of directives than an elementary school district. Conventional wisdom says that the kids here are not the chubby cherubs of grade school. They are big and gangly, flooded with hormones and confusion. Middle school and high school are the last stops before adulthood. In the best circumstances, these are not the halcyon days of childhood by anyone’s definition. I knew all that and I also knew that, for us at least, special education in middle school and high school would be a much dicier proposition than in elementary school. The feeling I got
was that, by seventh grade, whatever disabilities a special-ed kid had should be clearly defined so that he could be placed accordingly. If your kid was autistic, there was a special program for him with other “severely handicapped” children. If your kid was visually impaired, he got a note-taker and computer technology to help him with class work. If your kid was SED (severely emotionally disturbed), he was put in a dead-end program for fire starters and window breakers. Next stop, juvenile hall.
As always, Blaze fit none of the standard categories and I worried about how he would fare in a new system that seemed to have less tolerance for the gray areas between categories and diagnoses. I’d long since stopped trying to catch my flies with vinegar so, by the time Blaze was in sixth grade, I adopted a sweeter approach and called the administrative office of the new district and tried to voice my concerns about the next year as well as offer my help. I might as well have been trying to arrange a private meeting with the president. I was referred to three different administrators and left messages on several answering machines. Nobody called back.
In the spring of Blaze’s sixth-grade year, I attended a “transition meeting” with Helen, Mr. Davidson, and the teachers and administrators from Blaze’s new school. This gathering did very little to bolster my confidence. The school itself was brand new and, after less than a year in operation, was still in the process of determining the needs of its student population.
Mr. Davidson, Helen, and I (my parents, alas, were out of town and so this was one meeting my father did not attend) sat in a tight little knot on one end of a huge, polished conference table, while the representatives from the new school sprawled across the rest of the space. Even with Mr. Davidson there, I felt intimidated. I had never been in the company of so many large women at one time. By large, I don’t mean overweight. This was a collection of amazons: giant women with big, blond, perfectly streaked hair, sharp lacquered nails,
and serious business suits in muted shades of gray. They had Palm Pilots, cell phones, and leather-bound appointment books. Each one introduced herself to us, but it was pointless trying to separate them out. I felt like I’d wandered into a female superhero convention by mistake. By contrast, Mr. Davidson, Helen, and I looked a little like their hick relatives visiting the big city for the first time.
Mr. Davidson did most of the talking at first, describing the progress Blaze had made over the previous year and a half and delineating what he thought was most important for Blaze in the classroom (a feeling of security, a measure of success, a sense of belonging). He said he thought it would be a good idea for there to be a classroom aide. He said that Blaze was a good reader and worked best in small groups. It would be ideal, Mr. Davidson said, if Blaze could have all his classes in a small, highly structured classroom. Mr. Davidson was charming, but I didn’t notice his charm registering in that room. These were clearly very busy amazons.
Helen spoke very little, but she did mention that I had been working in special education for the last couple of years and was doing an excellent job so that, as parents went, I was definitely in the top tier. One of the amazons gestured to me and leaned backward in her chair.
“Are you looking for a new job?” she asked me in a stage whisper. “We could really use someone with your talent in this district.”
“I’d be interested,” I whispered back. “But maybe we should talk about it when I’m not sitting right next to my boss.”
After our corner had presented its case, one of the women got up and started drawing the interlocking, shaded circles otherwise known as Venn diagrams on an easel. “The kids will be spending this portion of their day in the mainstream classes,” she said, shading one portion of the interlocking circles. “This portion here will be for special day class and then this,” she leaned across the board with a nice show of athleticism, “will be for electives.”
“Will you be Blaze’s main teacher?” I asked.
“Oh no, I’m not teaching the special day class.”
“Who is the teacher, then?”
“We don’t have a teacher yet. But we’re in the process of interviewing several candidates right now.”
“Can you tell me about how the program will be set up?”
“Well, we think it’s better not to focus on specifics yet. We’re planning to design our program around the needs of the kids coming in.”
It all sounded good and the diagrams were pretty, but we were talking about children here, not pork bellies, and my mind immediately translated the meaning of her words as:
We have no teacher, we don’t know what we’re doing, and there really isn’t a program to speak of.
“I’m not sure about this,” I told Mr. Davidson when the meeting was over. “They don’t seem to have much of an idea about the kids or the program.”
“It’ll be all right,” Mr. Davidson said. “It’s not necessarily a bad thing that they’re forming a program around the kids. This way it’ll be tailored to their specific needs.”
Although his words were reassuring, I got the feeling that Mr. Davidson was even less confident than I was. Unlike me, though, his job was done after sixth grade. No matter how carefully he tried to prepare and nurture his kids, after sixth grade they were in somebody else’s hands.
I made a valiant effort to get a job at Blaze’s school before the start of the year. I had already decided that I would have to leave my current position in the elementary school because, by the looks of things, Blaze was going to need plenty of help in his new school and I needed to be available for him. I had been lucky enough to publish my first book by then (not the novel I’d been working on, but a memoir about my life as a waitress) and, for the first time in my life, was making a liv
ing as a writer. I figured that if I worked at his new school, I would be able to keep an eye on him
and
help some of the kids I’d been working with over the last year.
No such luck.
I went through a series of interviews at the district office and took a battery of tests reminiscent of the SATs (“Does everybody have a number two pencil? Please do not mark outside of the lines.”). After all of this, I received a call from an administrative assistant informing me that there was a position available for me in a local high school. The job description involved copying, filing, and record keeping for a couple of different teachers. There wouldn’t be much interaction with actual students. I mentioned that I’d asked for an aide position at Blaze’s middle school.
“Oh, we’re all full up there,” the woman told me. “We don’t need any aides at that school.”