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Authors: Debra Ginsberg

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BOOK: Raising Blaze
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My eyes were burning with tears by the time I finished reading and I had to resist a strong impulse to tear the report into tiny pieces. I was deeply disturbed by this damning document on many levels, but the worst feeling I had was that of betrayal. I had very little confidence in Dr. C. and felt that his assessment was largely a load of crap, but the account given by Sally, the person I had trusted the most, wounded me deeply. Dr. C. had clearly based much of his interpretations on Sally’s information and I had to go through it all a second time to try to understand what she had told him. The words assaulted me like little daggers coming off the page.

He wouldn’t think to find himself if he got lost.

He is a little stranger this year than he was before.

He is one of the most disabled children in the classroom.

If this was how Sally felt, why hadn’t she told me? She had been Blaze’s teacher for the better part of four years and I considered her an ally. This year, especially, I had opened up to her and shared my fears. I believed that she had been frank with me and had kept me informed. But her description of Blaze painted him as dangerously off-kilter and out of touch with reality. It was possible that Dr. C. had misinterpreted her words or taken them out of context (he certainly had with mine), but there were quotation marks around her most damaging comments. I couldn’t imagine that he had made them up. I wondered if she had always thought of Blaze as one of the most disabled children in her classroom or if she’d only come to feel that way this year. I had no doubt that Blaze could sense her feelings. If she thought he was “strange,” as she apparently did, I was sure that Blaze would act as strange as possible for her.

I felt like a wife who has just seen the lipstick on her husband’s collar. I wanted to march into Sally’s room immediately and confront her with Dr. C.’s report but I couldn’t. I had absolutely no intention of sharing that document with anybody from the school—ever. I didn’t just disagree with Dr. C., I felt he was dangerously off base. I had taken such great pains to explain to him why and how Blaze would react to a testing situation and he’d completely misconstrued what I’d said. He’d come up with a diagnosis of autism based on Sally’s report of Blaze’s classroom behavior, his own interpretations of what I’d told him, and Blaze’s refusal to participate in any of the tests he’d given. What struck me as most ridiculous, though, was that in the space of two months, Dr. F. and Dr. C., colleagues at the same HMO, had come up with two completely opposing reports. I rejected both of them and decided that I would never set foot in the psychiatric department of that institution again. Nor was I particularly disposed to searching out another psychologist. I was finished, for the time being. I didn’t believe that Blaze was autistic just because Dr. C. had managed to tweak reported data to match a few entries in
The Diagnostic
and Statistical Manual
. Nor did I believe that he had dyslexia or ADD or any other disorder that would make him easy to classify. Yes, he was different. Yes, it was a challenge to understand him. Certainly, it was proving difficult to educate him. But if I were to believe the conflicting opinions of the professionals who had seen Blaze to this point, I would be convinced that my son was mentally retarded, intellectually gifted, autistic, and emotionally disturbed. This was why these doctors and reports, especially the most recent, were dangerous. I could only guess at what would happen if Blaze were saddled with an inappropriate label. Eventually, I felt sure, he would
become
his diagnosis.

I buried Dr. C.’s report in my own personal files. My doubts about Sally and her assessment of Blaze, however, refused to be as neatly dispatched. I no longer felt particularly comfortable around her, nor did I trust her reports of Blaze’s behavior, good or bad, when she offered them. I began staying longer during my volunteer times, slinking out of the quiet room when I was finished with the reading, to sit at a desk in the back of the room and watch what was going on. I didn’t hear any siren noises coming from my son, but I believed that he probably reserved his worst behavior for when I wasn’t there. Still, I saw no evidence of the crazed child described in Dr. C.’s report. Rather, I saw a frustrated, isolated boy who was getting less and less positive reinforcement for being in school. I wondered if Blaze had been with Sally for too long, if, perhaps, they both needed a break from each other. But despite my new misgivings about Sally, I still hadn’t met anyone more qualified to teach Blaze. It was a conundrum and I tried to imagine what would happen in fourth grade where the stakes would apparently be raised once again. Fourth-graders were considered well out of babyhood and into increased academic and social expectations. I wondered how Blaze would cope with being a veteran in Sally’s class while negotiating another new teacher in the regular. As it turned out, I didn’t have to wait long to find out.

Sally pulled me aside one recess shortly before the end of the school
year and said, “I think you should know…It’s not common knowledge yet, but you’ll probably find out soon enough and I know you want to plan for next year….”

“What is it?” I asked, alarmed.

“I won’t be teaching this class next year,” Sally told me. “This class isn’t actually going to
exist
next year.”

“What?”

“No more special day class here,” Sally said. “The district has decided to combine the SDCs, so all the kids here can transfer over to the other elementary school for next year. Of course, that’ll mean Blaze too.”

A string of expletives formed in my mouth and I swallowed them quickly before they could tumble out. “There’s no more special ed at this school? Is that what you’re saying?” I asked, deliberately ignoring the acronyms that everybody in special ed seemed to be so fond of.

“Well, there will still be help from the resource specialist.”

“Who’s
that
?” I asked, my head spinning from this new information.

“It’s a pull-out program. The kids go see her for an hour or so a day for help with their classwork. Nothing like what the kids would get in an SDC.”

“So I’m supposed to just pull Blaze out of the school he’s been in since kindergarten? Away from everything he knows? So he can be in a special-ed program I don’t even know anything about?”

Sally said nothing, struck temporarily mute. I imagined she was searching for the right words. Something between empathy, professionalism, and reason, I guessed.

“And where are you going?” I asked her.

“I’m going to regular ed,” she said, a smile bursting like sudden sunshine on her face. “I’m going to be teaching first grade.”

“You want that?” I asked her.

“I asked for it. I’m burned out here,” she said, and it was my turn to
be mute. So she was sick of special ed. And why wouldn’t she be, I thought, looking around. It didn’t take a whole lot of insight to know that hers was probably a thankless job. Her considerable teaching skills would most likely produce shining, tangible results with a group of happy little six-year-olds.

“First grade is lucky to have you,” I said, sincerely. “I hope they know that.”

There was a brief silence between us and for one horrible moment, I was sure I was going to burst into tears and struggled to hold back the flow.

“What am I going to do with Blaze?” I asked her.

“It’s a good program at the other school,” Sally said weakly.

“No,” I said, shaking my head. “No, I’m not going to send him there.” I felt a sudden anger clutching at my throat. “When were they going to tell us parents about this?” I asked Sally sharply. “Were we just going to show up with our kids in September and have them shipped off to another school?”

“Oh no,” Sally said. “They’ll send a letter, you know, over the summer.”

I gave her a hard look. It was pointless to continue the discussion with her. She had already checked out. I was on my own.

“I guess I’ll go talk to Dr. Roberts,” I told her.

Sally nodded and bent down to pick up some stray scraps of blue construction paper. I turned away from her and headed out to the playground.

 

Two days before the end of the school year, I met with Sally and Dr. Roberts. It was a quick meeting, resulting in only one paragraph of notes, not one word of which reflected the contentiousness of the preceding conversation.

The IEP Team met to discuss Blaze’s placement for the 97–98 school year,
Dr. Roberts wrote.
Blaze’s mother requests that Blaze be withdrawn
from the special day class starting in the fall of 1997, so that he can remain at his school for the 97–98 school year. The IEP Team discussed concerns related to Blaze’s difficulty attending to reading activities and written work. Blaze fatigues quickly when engaged in reading and writing activities. Blaze is able to tell the information that he knows but has difficulty with completing worksheets. Blaze’s special-education needs will be discussed in the fall prior to beginning the school year. Debra Ginsberg has offered to assist the general-education teacher during the next school year, if her schedule permits.

If my schedule permitted. As if I had, or could have, a schedule that wasn’t primarily dedicated to Blaze. I was sure of only one thing as I signed the form. In less than three months, Blaze and I would be starting fourth grade together.

F
or Blaze, fourth grade begins well. For me, it is a little rockier. Blaze is very pleased to be out of Sally’s class. I’ve spent the summer explaining how important it is for him to be on his best behavior now, and I’ve underlined the need for a fresh start. I’ve told him that I will be coming to school with him. This will be to help him, I explain, but it will also mean that he won’t be able to get away with anything while I’m there.

Blaze’s new teacher, Grace, is wary, both about my involvement and Blaze’s abilities to handle a regular-education classroom. She has doubtless been extensively briefed by Dr. Roberts, who has made it clear that she thinks this placement is a mistake. I can’t say that I blame her entirely, but, instinctively, I feel that this is the only option. And instinct is all I’ve got to go on at this point.

Grace tells me that I can’t start coming to class for at least a couple of weeks because she needs to establish a rapport with her class. “Fine,” I tell her, “but I don’t want to wait too long. I want him to get off to a good start.”

Grace hesitates before she says, “I understand why you want Blaze in this class and I think it’s great that you’re going to come in here and help him, but you can’t be with him all the time. I want him to learn.
I don’t want him to just sit around all day doing nothing if the work is too hard for him.”

I give her a long look and decide that she is sincere. “We have to try,” I tell her and hear a hint of desperation in my own voice. “It’s either this class or he’s going to stay home.”

Two weeks later, Grace lets me in and I take a seat next to Blaze at one of the half-dozen hexagonal tables in the room. She introduces me as “Blaze’s mom” and tells her students that I will be “helping out in the classroom.” The children give me confused looks at first, not knowing quite what to make of me (I am Blaze’s mother, after all), but within a couple of days they absorb and accept my presence among them.

 

Blaze’s fourth-grade classroom is nothing like the fourth-grade classroom I occupied two and a half decades ago, yet when I sit next to him now, a few weeks into the year, visceral memories of my own school experience come flooding back to me. Despite the fact that I have distinct recollections of my earliest childhood, fourth grade is the first clear memory of school that I have.

We had just moved, the summer before the school year started, from London, England, to Brooklyn, New York. It was something of a culture shock. The school building was old and seemed huge. Every sound echoed off the walls and floors. The lunchroom was loud and close with the smell of baloney and ketchup. I was vaguely nauseated at lunchtime for the entire year. The fact that my groovy parents packed my lunch with peach nectar (instead of chocolate milk) and cream cheese sandwiches (instead of something normal like baloney) didn’t help matters.

Despite the fact that my mother had registered and introduced me as Debra, nobody managed to call me by my proper name. I was “Debbie” until I went to college, despite my best efforts to the contrary. (Elementary schools are obsessed with diminutives. There’s an
almost pathological need to shorten the names of everybody in sight, both adults and children.)

Physically, I was small for my age and almost painfully shy. I had a British accent, which, added to the fact that I was a new girl, turned me into something of a curiosity. I tried not to speak too often because every time I did my classmates would demand I repeat the words. “Say
castle
again,” they said. “Say
milk shake;
say
can’t
.”

My classroom was dark and smelled ancient. To me, it seemed that my teacher was at least as old. She was often unwell and, in the sharpest memory I have of my childhood, I can still picture the way she leaned over the sink one afternoon and vomited into it.

Every Wednesday, we had a citizenship assembly and students were expected to wear the colors of the flag. Every Tuesday night, I went into a panic trying to search for clothes that were red, white, and blue. I wanted desperately to blend and to fit in and sensed, somehow, that this very desire marked me as an outsider.

It was the academics, however, that proved to be the most difficult adjustment. For the first time, I was unable to glide through class with all the right answers. Penmanship, something I’d never had to consider before, was taxing and I struggled to make my hand form what seemed like impossibly complex cursive letters. But my real downfall was math. Multiplication tables sent me into a sweaty panic and division was impossible. Numbers became such enemies to me that even learning to tell time was a hellish experience. My father, something of a math wizard, spent hours poring over homework sheets with me, expressing utter disbelief at my lack of the facility he possessed in spades. My fear of math precluded any real interest I might have developed in the subject. Every math class I took from then on was a phenomenal struggle. One of the happiest moments of my academic career was the day I passed the last math class I would ever have to take to satisfy the requirement for my college degree. Facetiously dubbed “math for poets,” the class had given me at least as much anxiety as I’d
had in fourth grade. When I finished, I offered silent thanks that I would never have to worry about math again.

That is, until now. As I watch Grace write her daily math puzzler (
What number added to the following number will create a number with
t
he same digits in reverse order?
) on the blackboard, I am gripped by the same primal fear that held sway over me twenty-five years ago. Once again, I am small and scared, in a strange place where every noise jangles my nerves and sets my heart beating like crazy. In those days, the safest place to be was deep inside my own head where I could make up elaborate but quiet fantasies to sustain me. I look at Blaze with these sense memories dancing through my head and have a small moment of epiphany.

To be sure, Blaze is a separate entity and I am in no danger of exchanging my own identity with his. Yet, I wonder, couldn’t it be similar for him? He is less capable than I was of quieting the sensory overload that is school and his coping mechanisms are less acceptable, even inappropriate. But for the first time since his school odyssey began, I can truly feel, in body and mind, what he must feel every day.

The recess bell rings and the class erupts into a flurry of eager activity as twenty-five nine- and ten-year-olds struggle to keep themselves in their chairs until Grace dismisses them.

“Table two, you may line up,” Grace intones. “Table three, I see papers on your table, please put them away. Table four, you may line up. Table one…”

Blaze is soon surrounded by a cluster of little girls who talk all at once.

“Blaze, are you coming with us?”

“Blaze, do you want to go to the swings?”

“Blaze, will you sing us that song again that you made up?”

I watch as my son is enveloped in a swirl of pink-plastic barrettes and flowered stretch pants and I smile. Every day, without any prompting at all from me or their teacher, the same three or four girls
collect Blaze at recess and lunch and include him in their circle. Between them, they make sure that he never eats alone and never drifts away from the playground. They make certain he copies his assignments and if he balks, they write it down for him. They also report to me. I leave school at lunchtime and when I come back to pick Blaze up a couple of hours later, “Blaze’s girls” surround me and offer their impressions of his day.

“Blaze did a great job in art today,” Sara will tell me.

“Blaze wouldn’t clean up when the teacher told him to,” Jenny offers.

“We have a reading assignment,” Sierra says. “I put it in Blaze’s notebook.”

Blaze reacts to the attention with bemused detachment, but he goes with them, he talks to them, he
relates
to them. Without knowing it, they modify his behavior more effectively than the most skilled psychologist. When Blaze spouts a non sequitur or goes off on some metaphoric tangent, the girls give him a blank look and instantly redirect the conversation. They never treat him with condescension. I don’t understand where this serendipity comes from, nor can I figure out what Blaze has done to deserve it, since he has never tried to elicit their friendship. But I am so grateful for these amazing little girls that I am often brought to tears.

I watch Blaze shuffle out to recess with his entourage now and smile again. Grace tidies her desk briefly and comes over to me.

“There are treats in the teachers’ lounge,” she says. “Let’s go. Or are you still stuck on the math puzzler?”

“I can’t help it,” I tell her. “This is a particularly difficult one.”

Over the last few weeks, Grace and I have become friends. I have enormous respect for her. Without ever raising her voice, she maintains total command over two-dozen boisterous fourth-graders. One withering look from her is enough to silence the most vociferous dissenter, but when she speaks, it is always with kindness. Unlike my own
fourth-grade teacher, she is young and pretty with perfectly manicured nails and—despite the fact that she is expecting her first child—never throws up in the sink. It is her love of teaching, however, that wins her the most points with me. Grace is not afraid to try different approaches with kids who don’t grasp basic concepts right off the bat. When a struggling student finally masters a subject, she becomes genuinely excited. For this reason, the third-grade teachers often recommend her for their tough cases. Indeed, this is how Blaze ended up in her class.

For her part, Grace likes the fact that I am realistic about Blaze’s problems as well as my own. She is delighted that I’ve admitted my struggle with math and has taken it on herself to reeducate me at the same time as she teaches my son. We spend recess together, strategizing over how best to help Blaze with the academic workload and discussing her upcoming lesson plans.

Slowly, I’ve opened up to her. For the first time with a teacher, I’ve shared some of my fears and doubts about Blaze. I feel I can trust her.

“We’ve got to make sure that he gains some independence,” Grace says. “He has to be able to take care of himself—that’s the most important thing. What about sixth-grade camp? I don’t see him being able to go at this point.”

“Sixth-grade camp?” I ask, baffled.

“The sixth-graders all go away to camp for a week at the beginning of the year,” Grace says. “It’s sort of a rite of passage.”

“Sleep-away camp? Without parents?”

Grace laughs. “Of course without parents. It would be terrible if Blaze missed that. It’s such a great experience.”

I shake my head. “I can’t see him going away for a week by himself,” I tell her honestly.

“Well, it’s a couple of years off,” Grace says. “We’ve got to get him ready.”

I don’t tell her that I’m not sure if Blaze will ever be ready to spend
a week away from home in the company of strangers, but I feel comforted that she wants to prepare him for it. She’s taken a proprietary interest in Blaze and I couldn’t be happier. The only dark lining in this silver cloud is the fact that Grace is due to deliver in December and will be on maternity leave for the second half of the year. I plan to learn as much from her as possible before this happens.

“I’m thinking of taking Blaze for another evaluation,” I tell Grace. I would never have shared this kind of tidbit with anyone at school before, but I trust Grace enough to seek her opinion. “I’m not happy with the report I got from the last psychologist I took him to.” This isn’t entirely true—I’m actually still furious, albeit quietly, about what I feel was a complete misinterpretation by Dr. C.

“What are you hoping to get out of it?” Grace asks me.

“Maybe I can get a real diagnosis this time,” I tell her. “I want to go to somebody who’s seen a lot of children. Somebody who might have seen somebody like Blaze before. I guess I’m looking for someone to tell me what to do about school….”

“Because you can’t come to school with him forever,” Grace says, reading my thoughts.

“Yes,” I tell her. “But I would if I could. You know I would.”

 

Blaze paces back and forth in the waiting room. My father and I don’t bother telling him to stop this time. We are, after all, in the office of Dr. S., a child
psychiatrist
, an actual M.D. as opposed to the psychologists we’ve seen to this point. Let Blaze act as nutty as he wants, we think. This is why we’re here. Maybe, I think, if Blaze
really
acts strange, I’ll feel justified in bringing him here in the first place. I haven’t coached Blaze at all for this meeting. I want him to act as true to himself as possible. I don’t care if he talks nonsense or asks Dr. S. the same question ten times. I won’t mind if he covers his ears with his hands or asks the doctor to place the phone in the desk drawer because he can’t stand the thought that it might ring unexpectedly and loudly.
If Dr. S. is worth his salt, he’ll understand just who Blaze is and he’ll be able to tell me, in practical terms, how I can best help my son navigate a path through the complicated avenues “out there,” beyond the confines of home.

Blaze interrupts my thoughts as he begins obsessing about two lights on the wall. What do they mean? Why are they on the wall? I tell him that the red one lights up when you first enter and summons the doctor. The green one flashes when he comes out to see you. My father and I have to explain this to Blaze five times and still he wants to know why they are there.

Finally, the doctor emerges. I am relieved to see that he is relatively plain-looking—no disturbing physical features like crooked teeth, a too-shiny bald head, a speck of food somewhere on his face. This would drive Blaze to distraction, I think, and then stop myself short, realizing that it would actually drive
me
to distraction. I wonder, fleetingly, how many times I project like this on a daily basis and why it takes a visit to a psychiatrist to draw my attention to it.

“Blaze and I will go inside and have a little chat,” Dr. S. says, “and then we’ll all meet together afterward.”

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