Authors: Debra Ginsberg
“Guess what?” he told me excitedly one day. “Lee threw up today in class.”
“Oh, that’s terrible,” I said. “Didn’t he make it to the nurse’s office?”
“No, Mom,” Blaze said, “he threw up on his
name
.”
True to her word, Kimmi called me every Tuesday night. Blaze was having a hard time with math, she said. His reading comprehension wasn’t very good. He left the circle and she couldn’t get him to come back. After a few of these calls, it became apparent that she was calling me simply because she had told me she would. Our conversations were punctuated by long, awkward silences. I felt her annoyance and unspoken frustration. I also felt that she was an idiot. She had not one positive comment to make and not one suggestion as to how to reach Blaze.
“I’m a little concerned about his language,” she said one Tuesday night after we’d exchanged the obligatory greetings.
“What kind of language?” I asked her.
“Well, he says things like, ‘the floor hurts my feet.’ I don’t really understand what he’s trying to say there.”
“He’s saying that the hard floor hurts his ankles. You know when you sit them in the circle? He doesn’t like that, the ground is hard on his ankles. He’s grown four inches in the last eight or nine months, sometimes his joints hurt from all that stretching.”
“Oh, uh-huh,” Kimmi said, sounding entirely unconvinced.
“He’s really anxious about the fire drills,” Kimmi went on. “I don’t really know what to do when he gets upset about them. He seems to know when we’re having them. I think he reads my schedule of events that I keep on my desk.”
Hmm, I thought, the old reading comprehension can’t be that bad if he can figure out where she keeps her schedule, then sneak a peek at it and commit the contents to memory. “He’s very sensitive to loud noises,” I told her. “He’s been freaked out by the fire drills since kindergarten. Sally’s had a lot experience with this; maybe you could ask her about it?”
“Yes, that would be a good idea,” she agreed. There was a long pause. I had the feeling that this would probably be the last telephone conversation I’d have with Kimmi.
“I’m not really sure what’s going on with him,” she said, finally. “I think he might need more support.”
“What kind of support?” I asked her.
“Well, you know, Sally has such a great program. Perhaps it would be better if Blaze spent the academic portion of his day in her class. She can provide so much more structure and support than I can in my class. You know, I have so many children in the class, it’s difficult to give one-on-one—”
“Send him back to special ed? Is that what you mean?” I asked her. I didn’t want to hear another diatribe about how many damn children were in her damn class and how she couldn’t give personal attention to any of them, let alone a kid,
my
kid, who required
so much
damned attention.
“Just for the morning,” Kimmi said. “In the afternoon, he could join my class for their rotations through music and art.”
“Should I talk to Sally and Dr. Roberts about this?” I asked her.
“Oh, I’ve already brought it up and they think it would be a good idea.”
Really, I thought, you don’t say.
A few weeks later, at the next IEP meeting, Kimmi brought up Blaze’s inappropriate language and, again, I explained what it was that he meant. I thought I detected a note of “I told you so” in the decision to send Blaze back to special ed, but I tried not to be paranoid. Everybody wanted what was best for Blaze, I told myself, but it was becoming less clear to me what that was.
With Blaze back in Sally’s class, I let myself drift away from school issues. My job occupied almost all of the available space in my brain, so this was no big feat. Blaze had run off the beaten path before and had managed to get himself together, so I had every reason to believe that he would pull himself together again. Even Sally told me that, in her opinion, Blaze operated on a cyclical basis. This boy was seasonal
and now we were having a bit of winter. At home, his language was anything but “inappropriate.” He had started composing songs, accompanying himself by strumming along on a little thrift-store guitar. The sound of the guitar was fairly dissonant with no chords or changes, but it was obvious that he could hear the music in his head. Each song had verse, chorus, and bridge. In the evenings, instead of working on his homework, which had become anathema to him, he would regale me with, “Listen to this, Mom, it’s a new song from my latest album.” I listened, occasionally scribbling down the lyrics on whatever scrap of paper was handy.
“Deadland” was one such song. “It takes three tickets to get to Deadland,” he sang. “When you’re in Deadland you can never get out. Deadland, Deadland, Deadland.”
“Who’s in Deadland?” I asked him.
“Oh, just some people go there,” he told me. “Like Martin Luther King Jr. and John Lennon and Marvin Gaye.”
“Is it a nice place?” I asked. “Peaceful?”
“No,” he said decisively. “It smells really bad there.”
I preferred his song, “We All Shine Upon the Night,” which described looking at the moon in a dark bedroom. Other songs captured some of the anxiety he felt at school. “Catch the Broken Timer,” for example, described sitting in a chair waiting for the timer a teacher had set to go off and pierce the silence with its buzzing:
“I asked the teacher when it was going to go off and she said, ‘Don’t worry, it’s not going to go off’—Catch the broken timer, catch the broken timer, I’m running away…”
I thought about telling Dr. Roberts about these songs, but I stopped myself. I remembered, only too well, that first day of kindergarten when everything I believed was unique and wonderful about Blaze became an indication of a troubled mind. Nor did I tell Dr. Roberts, or even Sally, about Blaze’s new fear, butterflies, which had intensified and become a major phobia.
The butterfly problem started at the same time Blaze entered second grade. Thankfully, there weren’t a large number of butterflies out and about in the fall and winter and Blaze was able to keep his fears largely at bay. But in the spring, there was a butterfly explosion and they were everywhere, flitting gold, orange, white, and red from the agapanthus to the honeysuckle and jasmine. Blaze put his hands over his ears and shrieked when he saw them, even when they were several feet away. If a butterfly flew too close to him, he’d go into a rigid terror and run in the opposite direction, even if that direction was into traffic. I tried everything I could think of to allay his fear; first admonishing him, then gently explaining that there was nothing to be afraid of, then, on our weekend walks, avoiding whole areas where butterflies were known to cluster. The butterfly issue became an endless topic of conversation between us.
“Butterflies are beautiful,” I told him. “And they couldn’t possibly hurt you. Look how fragile they are—they’re the most fragile creatures on earth.”
“No, no,” he answered. “They’ll bite me.”
“They can’t bite, they don’t have any teeth.”
“They don’t? Are you sure?”
“They don’t even have mouths.”
“Yes, they do.”
“No they don’t. They just drink nectar from the flowers.”
“I don’t like the way they fly.”
“Why not? They just go from flower to flower. They’re not at all interested in you. You are a big, scary human and they have thin, delicate wings. Blaze, of all the insects in the world, butterflies are the most harmless, the most beautiful.”
“They are not!” he insisted. “I don’t want to look at them. Why do they have to exist? I hate butterflies!”
There was nothing I could say and no explanation I could give to relieve his dread. I couldn’t comprehend it. That same spring, Blaze was
stung twice at school, once by a bee and once by a yellow jacket. He had been stung only because he leapt into a bank of clover during recess to avoid any contact at all with butterflies on the playground. These stings didn’t bother him in the slightest; in fact, he took pride in remaining stoic while the school nurse applied salve to his finger. When she called me at work to let me know about the sting (“Just in case he has some kind of allergic reaction”), Blaze got on the phone and proclaimed, “Mom, I got
stung,
” as if it were the very definition of cool.
The demystification of bee stings had no effect on Blaze’s fear of butterflies and, as the weeks went by, that fear only grew deeper.
“I can’t deal with this butterfly thing,” I told him, finally. “You’re going to have to get over it. What is it about butterflies? Just tell me.”
“Mom,” he said miserably, looking right into my eyes, “you just can’t understand.”
I realized then that I really couldn’t understand, that there was something about the butterflies, something about Blaze himself, that had its genesis so deep inside him that there was no way he could explain it to me and it was, perhaps, something that defied explanation in a traditional, verbal sense. I thought about the symbolic meanings of butterflies; transformation, transfiguration, the emergence of self from the chrysalis. In every movement, butterflies represented the fragility and beauty of life. On a more practical level, the flight of the butterfly was erratic, flitting this way and that. There was no way of predicting its exact direction. I could see how that could frighten Blaze, how, if I thought about it long enough, it could even frighten me. I wasn’t going to come to an understanding greater than this, I realized, and, like Blaze it wasn’t something I could find words for. It was nothing I could make clear for his teachers or anyone else who puzzled over such an odd phobia. We all have our butterflies in one form or other, I thought. I could only hope that Blaze would, in time, learn to conquer his.
Spring drifted into summer and then into fall again. For me, the seasons were marked mostly by Blaze’s school schedule. Southern California had none of the pomp and flourish of the changing seasons elsewhere. It was warm, then hot, then not as hot. Occasionally, it was rainy and cool. I was glad when second grade came to an end and expected that the next would be a better year for Blaze.
I was busier than I’d ever been. Representing the agency I worked for, I traveled to several writer’s conferences. I spoke in public about the function of a literary agency and what writers could do to improve their chances of getting published. I wrote notes for my talks. I bought a briefcase. At night, I read proposals and manuscripts. I spent my thirty-fourth birthday in Chicago at an international book fair, discussing foreign rights with people from all over the world. I’d never been to a book fair before. I’d never even been to Chicago.
When Blaze went back to school for third grade, I was in the midst of writing a novel. I didn’t bother trying to register him in a regular-education classroom. He would be with Sally again for the first half of his day and then move into a “regular” classroom in the afternoons. I disliked his new third-grade teacher, Mrs. Noel, immediately, but fought not to show it for Blaze’s sake. I reckoned that, no matter how professional a teacher might be, if a parent was a pain in the ass, there would have to be some resentment toward that parent’s child. Blaze needed all the warmth he could get at school, I thought, and so I swallowed my belief that Mrs. Noel was utterly insincere and felt unfairly saddled with a problem kid from special ed who disrupted the harmony of her classroom and upended the perfect curve of her standardized test scores.
At the end of September, the IEP team met to discuss Blaze’s progress. It was easily the most dismal meeting I’d yet attended. Sally had typed her report this time so as to fit a maximum amount of bad news on the page.
Blaze continues to feel stressed in response to academic and social expectations,
she wrote.
He often reaffirms his schedule and well-being by questioning peers and adults. He has difficulty conforming to quiet time in either classroom and complains that the floor is hurting his feet or pretends to be a machine. He is sensitive to usage of common words such as fire, very, boss. Extreme difficulty relating past events continues. Blaze often uses phrases inappropriately or refuses to talk about subjects without an easy response. Continues to vocalize repetitive inappropriate language, currently exhibiting perseveration with vocalizing strings of numbers.
Sally told us that Blaze’s academic performance was slipping, that he wasn’t tracking words on the page, he had no written output, and difficulty following directions. Mrs. Noel said very little, except to mention that she’d seen almost no evidence of any academic gains where Blaze was concerned and that his behavior in her classroom was disruptive. To me, she seemed mildly annoyed that she’d had to attend this 7:30
A.M
. meeting at all.
Dr. Roberts asked how Blaze was faring at home. As usual, there was a great disparity between my report and the school’s. My father, who usually just listened during these meetings, weighed in with some thoughts of his own.
“I spend a lot of time with Blaze,” he said, “and it’s true, he does say things that are difficult to understand at times. But when I’m with him, he’s not allowed to speak nonsense and he knows it. He can’t get away with that stuff around me so he doesn’t. So if he says something like, I don’t know, whatever you wrote here, I tell him, ‘Stop talking nonsense,’ and he does.”
“My dad is the enforcer,” I said, smiling. “Blaze really listens to him.” I didn’t mention that, at home, Blaze had recently created two lists of words: the good list and the bad list. Words on the bad list included
true, nonfiction, no, cute, shut up, never
, and
very
. The good list was much shorter and contained
Texaco
and
yes
. Whenever I mentioned a word on the bad list, Blaze would complain loudly. I would
make deals with him to remove certain words I used all the time from the bad list if I promised to never utter some of the others. It had turned into a game, one he seemed to enjoy. Clearly, the game wasn’t going over too well at school where nobody had a clue what the hell he was talking about.