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Authors: Debra Ginsberg

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BOOK: Raising Blaze
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I was a mess—tears everywhere, throat closing up, hiccups. I could hardly breathe. I was so proud of him, so relieved, so drenched with emotion, that I thought I would suffocate. Through the blur, I wondered if I was alone or if other parents felt the same way I did—that everything involving our children was painful in some way. The emotions, whether they were joy, sorrow, love, or pride, were so deep and sharp that in the end they left you raw, exposed and, yes, in pain. The human heart was not designed to beat outside the human body and yet, each child represented just that—a parent’s heart bared, beating forever outside its chest.

Blaze received much praise before I could even get to him. As he filed out with the rest of his class, several adults patted him on the
back, gave him a high five, or told him what a great job he’d done. I only knew half of these people. Some of them were teachers, but as for the rest, I had no idea.

“Are you Blaze’s mom?” I heard through my daze and turned to see one of the sixth-grade teachers I barely recognized.

“Yes,” I said.

“What a wonderful poem that was,” the teacher said. “Totally original. I’m very impressed. Most of this stuff was cookie-cutter writing. Blaze has a real voice.”

“Yes,” I said. “Yes, he does.”

Mr. B. came up from behind me and squeezed my shoulder.

“He was great,” Mr. B. said. I didn’t trust my own voice to stay steady, so I nodded and moved away quickly, before I could embarrass myself by bursting into tears.

 

A couple of days after Blaze’s performance, Mr. B. told me that Dr. Roberts would be resigning her position at the end of the school year. I felt an unexpected wave of disappointment. When I stopped by her office (which was always open to me) to chat, she was full of congratulations.

“Blaze did such a fine job at the authors’ tea,” she said. “He has come such a long way. A couple of years ago, it wouldn’t have seemed possible.”

“I had my doubts,” I confessed. “But Blaze always surprises me.”

“Well, he has a wonderful support system,” Dr. Roberts said.

“Yes,” I countered, “but I actually came here this morning to talk about you. I heard a rumor that you’re going to be leaving us.”

“Yes, I’ll be leaving at the end of June,” she said. “I know the person who’ll be replacing me as administrator and she’s terrific. I’m sure everything will be fine in the transition.”

“It’s not that so much,” I told her. “We’ll…we’ll miss you.” I couldn’t imagine having said such a thing to Dr. Roberts a few years
earlier. I was frankly amazed that I was saying it now, but it was true, I
would
miss her. For all my internal raging and disagreements with her, she had remained a steady presence in Blaze’s school career. Although it had taken me a while to believe it, she cared about Blaze and wanted what was best for him.

“And I’ll miss all of you too,” Dr. Roberts said and smiled. Never one to talk much about herself, she moved right along. “I was thinking about all that you’ve done in the classroom this year,” she said, “and I was wondering if you’d be interested in working in our preschool program as an aide.”

“What?”

Dr. Roberts went on to describe the class, which was an early-intervention program for severely handicapped three- and four-year-olds (“Sometimes a little older,” she said). The children had a wide range of disabilities, Dr. Roberts told me, and the program was designed to help them learn skills for use in the classroom. The idea was that, when these children reached kindergarten age, they would be able to spend some, if not all, of their time in a regular kindergarten class.

“I really think you’d enjoy it,” Dr. Roberts said. “There’s such a wide range of modalities in that classroom. And you’d be wonderful with the children.”

Before I had the chance to ask too many questions, Dr. Roberts whisked me off to the classroom in question to have a look. The class was in Sally’s old room, I noted, and was now filled with several very small children and a multitude of aides and teachers, none of whom looked older than high school age. The atmosphere was one of tightly controlled chaos. Everyone seemed to be moving and speaking at once, although there was clearly a method to the madness.

“Show me blue, Vincent.”

“Oops, no, try again!”

“Do you need to go potty, Jake?”

“Show me green.”

“Good job!”

“Jake, do you need to go potty?”

“It’s circle time, Steven. Go to circle.”

“Show me red. Nope, try again! Show me red.”

“Circle time, Steven.”

“Jake?”

“Yay! Red! Good job!”

“Everybody out of the way! Jake needs to go potty!”

An aide rushed by, holding a tiny boy by the hand. His feet barely brushed the floor as they hustled into the bathroom.

Dr. Roberts looked at me somewhat apologetically. “There would be a little toileting involved,” she said.

“You mean taking kids to the bathroom?” I asked.

“Well, yes, some of these little guys have a harder time with potty training, so we help them out with that.”

“That doesn’t sound too bad,” I said like the novice I was.

“Oh, good,” Dr. Roberts said.

Back in her office, Dr. Roberts had me fill out the necessary forms for employment and rounded up the principal for an impromptu interview. Slightly baffled, the principal asked me a few perfunctory questions, stressed the need for confidentiality in special education, shook my hand and said, “Welcome aboard.”

I felt slightly as if I was being rushed into the job before I might have the chance to change my mind, but this trepidation was tempered by the thought that this was a job I ought to take. One didn’t get that many opportunities to perform real service, I thought, and here I was being offered the chance without even trying. It seemed like a sign of some sort.

“When would you want me to start?” I asked Dr. Roberts.

“Oh, we, um, need people for the summer session,” she said. “So that would be in about three weeks.”

“Oh.”

As if to sweeten the deal, Dr. Roberts added, “You’d be working next to Blaze’s classroom this summer and you’d have the same hours. And I’ve just found a summer school aide for Blaze. She’s a psychology intern and very bright. I think it will be a great match.” Dr. Roberts gave me a small, enigmatic smile. “She’s also quite lovely to look at.”

“Oh,” I said. “Well, that will certainly appeal to Blaze.”

 

During the last week of school, I gave Dr. Roberts an understated but elegant pin that reminded me of her and a letter thanking her for all she’d done for me and Blaze. A couple of weeks later, I received a card from her in the mail.

It has been a real pleasure to know you and Blaze
, she wrote.
I have appreciated the benefits of the positive approach your entire family takes, as each person helps Blaze to grow while making it clear that he is well-loved. You have done a great job of supporting him this year. He is in good hands as a member of your family.

Coming from Dr. Roberts, I thought, these words of praise meant more than the sum of their parts. I only wished it hadn’t taken quite so long for me to realize it.

E
very inch of progress Blaze had made in fourth grade was lost by the end of the first month of fifth grade. It was astonishing how rapidly everything fell apart. I had been so sure that placing Blaze in a regular fifth-grade classroom was the right thing to do, but it turned out to be one of the worst decisions I’d ever made where my son was concerned.

Blaze’s success in fourth grade had convinced me that he’d be all right in a regular class and this was reinforced by how well he’d done in summer school. Mr. Davidson was the teacher for that summer-school class, along with the aide that Dr. Roberts had hired, and Blaze had accomplished quite a bit. As I reacquainted myself with “Ring Around the Rosie” and the joys of pudding snacks with my preschoolers, Blaze produced a folder’s worth of written work and learned some basic math facts in his classroom two doors down.

Some time in July, Mr. Davidson took me aside and reiterated what Dr. Roberts had told me a few months earlier.

“I think Blaze would do really well in my class in the fall,” Mr. Davidson told me. “Kids like him make my class successful.”

“I don’t know,” I said. “I really think it’s important for him to be around the kids he’s come up with through the grades.”

Mr. Davidson gave me a look that said he didn’t think this was
nearly as important as I did, but what he said was, “I’m not trying to sell you on anything, you understand. Just something to think about.”

“I will,” I said and I did, but only briefly. Dr. Roberts had promised that Blaze would have an aide in the fall and I would be working at the school, able to keep an eye on Blaze, but still allow him the independence he needed. This was my plan and I thought it was a good one.

Unfortunately, there were a couple of key people missing from this plan. One was Grace or even a teacher
like
Grace. The other was Dr. Roberts.

 

Blaze’s fifth-grade teacher was pleasant, but she was definitely not in line to be my buddy. Like most of her colleagues, she suffered from the big-class syndrome and was clearly under pressure to produce kids with high test scores and winning essays in strictly defined categories. Blaze didn’t come close to fitting her model student. This pressure wasn’t necessarily coming from her, but from the other parents.

Since having Blaze in the “mainstream” environment of fourth grade, I’d come to know some of these parents, although not in a social sense. I got to know the moms and dads as we stood outside class waiting for our kids to be released for the day. I heard their complaints about the homework (too much, too little, not academically challenging enough), the classes (What do they need to take art for? They should have more sports here), and the teachers (too distant, played favorites, didn’t challenge the kids, didn’t produce high grades, and so on). But one of the biggest complaints I heard was that the “lower” kids were mixed in with the “higher” kids and therefore dragged everyone down.
Lower
was a euphemism for
special
(which in itself was a euphemism) and
higher
was a politically correct way of saying
my kid
.

Special-education law springs from the Individual with Disabilities Education Act, enacted in the 1970s with endless addenda ever since. The law states (and any parent with a child receiving any special ser
vices whatsoever will have seen this at least once) that every child has the right to a “free and appropriate” public education in “the least restrictive environment possible.”
Least restrictive
is interpreted in many different ways, but most commonly means that the child should be “included” in regular classes as much as possible with as few adults shadowing him as possible. Just like everybody else, in other words. The theory behind this is actually a very good one. It assumes that a special-needs child will learn practical social and academic skills from her “normal” peers while the normal kids will learn compassion, tolerance, outside-the-box thinking, and other qualities not normally fostered in a regular classroom. In some early-education programs (the one I worked in was one example), there was even “reverse mainstreaming,” where kids from the regular-ed classes would spend time in special ed for those very reasons.

The concept of mainstreaming was anathema to most of the regular-ed parents I met. Not wanting to seem terribly politically incorrect, most of them wouldn’t come right out and say, “I don’t want
those
kids in class with mine,” but the implication was there.

“It’s ridiculous to hold the whole class up because one child is reading on a third-grade level…”

“They’ve got those special-ed kids in there now and you know what
that
means….”

“I’m not saying they shouldn’t be in school, you understand, but shouldn’t they be in their
own
class?”

Without knowing that I was a parent of a special-ed kid, parents bitched and moaned to me all the time. If I felt compelled to tell them that my son was in special ed, I often got looks of dismay, embarrassment, even irritation, as if I shouldn’t have been listening and by doing so, I had violated some sort of code.

All this is to say that in fourth grade and in the beginning of fifth, while Blaze was “passing” as a regular-ed kid and I as his “normal” parent, I finally understood the kind of pressure most of these teachers
faced. No doubt it would have been different if I’d been living in an area with a lower average income and a different demographic. In that case, poverty and disadvantage would have created their own pressures. This was why my area was one that was regarded as highly desirable by most teachers, even though most of them couldn’t afford to live where they worked and had long commutes. Ultimately, I think, many of these teachers were caught between administrative directives and parental pressures, leaving them very little time or inclination for special-needs kids.

Blaze’s fifth-grade teacher certainly fit this profile. She seemed a nice enough woman and I believe that she tried to integrate Blaze into her class as much as possible, but she simply didn’t have the tools or the time. This translated into an odd sense of helplessness that hovered in the air between us every time I spoke to her. Nor was there any of the camaraderie I’d had with Grace or even Mr. B.

Because Blaze’s teacher couldn’t provide the academic support he needed in her class, he spent almost the entire morning with Mary, the resource specialist. Mary’s job was to provide one-on-one tutoring and extra study time for the aforementioned “lower” kids who were struggling with a regular academic load. Most kids came to see her for twenty- or thirty-minute blocks of time but Blaze spent hours there at a stretch.

Mary and Blaze had gotten along well enough the year before when I’d gone with him on his visits to her small office, but without me there (and because they spent much more time in a small space together than they should have), deep fissures began to appear in their relationship. Mary prided herself on her take-no-prisoners style of instruction (“You think
I
like reading?” she’d tell a recalcitrant sixth-grader. “Well, I don’t, but it doesn’t matter, I have to read, and so do you. So just do it already.”), which was amusing for about five minutes, but then became very depressing.

I held open the possibility that Mary might once have been a
talented educator, but by the time Blaze got to her, she seemed burned out and resentful. Blaze was intimidated by her and complained about her almost constantly. She was mean, he said, and she yelled at him. Don’t exaggerate, I told him, just do your work for her. She made him write the same sentence over and over, he said, until it looked right. He resisted looking up a word in the dictionary so she made him sit for an hour until he produced the definition of
navigation
. She sent him outside, made him sit on the bench, wouldn’t let him go to recess. And it wasn’t just him, Blaze said, she was mean to everybody, especially Matt, who often worked alongside him in her office. Matt was frequently in tears, Blaze reported.

Don’t make trouble, I said.

Sometimes Blaze would stop by my classroom on his way to Mary’s office and gaze longingly at the preschoolers. He wanted so badly to just chuck it all and go back to the joys of circle time.

“Can’t I stay here with you, Mom?” he’d ask.

“Blaze, you’ve got to go to Mary. Go on, now.”

“I can’t go there, Mom. She’s evil.”

“She is not! Don’t say that.”

“She is. She’s an evil beast,” he said, but off he would go, looking miserable and defiant at the same time.

Mary demanded that Blaze spend part of the morning writing in his journal. When I read his entries, I was disturbed by how sad they seemed.

9/14/98

Devin sometimes plays with me at recess. Sometimes we play ball with a soft ball. At class time I think about her.

9/17/98

I wish I could fly, but I can’t. I can only fly on an airplane and go to San Francisco. I don’t think it’s fair that I can’t fly. But I don’t have wings.

9/18/98

When I was three years old, I had pajamas that looked like they had a hood and they had a zipper. They went all around my body. I had two pairs. One was light blue. Another was dark green. The zipper on my light blue pair broke and my aunt said, “What a bummer.” I remember this story but my mom does not.

9/19/98

I am such an idiot. Just a cow. I belong at America’s Dairy Farm.

9/21/98

One time I was at the beach. There was a high tide. It came in like crazy and splashed the road.

9/23/98

When Matt was upset, it felt like there was loud music in my head. When he cried, it felt like drums went off. I wonder if Mary felt that too. When we work quietly, it feels like Für Elise by Beethoven.

Blaze’s afternoons weren’t much better than his mornings. The aide Dr. Roberts had promised worked with Blaze for less than three hours at the end of the day and there wasn’t much love lost between him and Blaze from the start. Blaze mostly acted out in the afternoons, tossing books around, stomping out of class, and refusing to do work of any kind. His new aide, a young man with a distracted air about him, had no clue how to reach Blaze and didn’t make much of an attempt, besides. Slowly but steadily, Blaze began to spin out of control at school and I didn’t know what to do to help him.

And of course, Dr. Roberts was now gone as well. The scope and complexity of Dr. Roberts’s job finally became clear to me when I found that she’d been replaced by two people: a special-education administrator and a school psychologist. Dr. Roberts had been pulling
double duty all those years and it became apparent to me why she’d finally called it quits.

Helen, the administrator, was all business and began her tenure by brandishing the motto, “Things are going to change around here.” I found myself in the awkward position of being this woman’s employee
and
a parent of one of her special-ed students. It was difficult to talk to her about Blaze. I didn’t feel that she understood him or his school history. Helen was also a big believer in zoning and thought every attempt should be made to keep Blaze at his home school. This was a complete reversal of Dr. Roberts’s feeling that Blaze should move to Mr. Davidson’s class. But after only a few weeks of fifth grade, I knew that Blaze wasn’t going to be able to stay where he was. By the end of September, he was spending his afternoons circling the classrooms with his shoes off, muttering, “I hate the evil beast. The evil beast must be destroyed.”

Clearly, things were not working out.

I scheduled an IEP meeting with Helen, Mary (a.k.a. “the Evil Beast”), and Mr. Davidson to arrange for Blaze to spend the first half of his day in Mr. Davidson’s class. While brief, this meeting was easily the most entertaining I’d yet attended, because it consisted mostly of Mary and Helen sniping at each other. Such a lack of decorum would never have occurred on Dr. Roberts’s watch.

Mary complained that she didn’t have the resources for a kid like Blaze. Helen warned her that resources weren’t the issue here. Mary then said that Blaze’s aide was “useless.”

“Personnel issues will be dealt with outside of this room,” Helen snapped. “This is neither the time nor place.” I kept my eyes fixed somewhere between Helen and Mr. Davidson, afraid that if I looked at my father, who was in his usual position next to me, I would start laughing uncontrollably.

But Mary was only just beginning. She yanked out some of Blaze’s “work samples,” consisting mostly of angry-looking scrawls, and thrust
them across the table. “There,” she said. “That’s all he’s capable of.”

Mr. Davidson, who had also quite obviously been enjoying the interplay between the two women, suddenly stopped smiling and picked up the papers with an expression of extreme distaste.

“This isn’t right,” he said in his rumbling baritone. “I worked with Blaze in summer school and I’ve seen him do much better than this.
Much
better. I don’t even know what this is.” He then gave Mary what I could only describe as a ferocious stare. There was an intense silence in the room for a few seconds and then Helen picked up her pen and said, “All right, let’s wrap this up, shall we? I don’t think anybody disagrees that Blaze should move to Mr. Davidson’s class for the mornings.”

There were immediate and simultaneous murmurs of assent from everybody in the room.

The director feels very strongly about Blaze remaining for the afternoons to maintain contact with the peers at [his home school],
Helen wrote in her notes. I signed the form and passed it to my father. Dr. Roberts would never have referred to herself on an IEP form, I thought to myself and, for some unknown reason, this made me smile.

 

When we left the meeting, Mr. Davidson walked out with me and my father.

“I know we agreed to mornings,” he said, “but I’d really like to have the kid for the whole day.”

“You sure about that?” my father said.

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