Today you’ll read with kids one at a time, it says. They get to choose a story to bring to you for five to ten minutes. If a child makes a mistake or substitutes or deletes a word, but the story makes sense—let it go. If a child makes a mistake that doesn’t make sense or changes the story significantly, ask that child to try that part again. At the end of the note, Sally says, Please don’t take it personally if a child initially resists reading to you. Transitions are hard, but the kids will get used to you quickly.
Sally has included a list of twelve children who will come read to me in the little, glassed-off quiet room. Blaze is one of them. This should be interesting, I think.
Jake enters the room first. He’s a big fourth-grader, full of pouting attitude. Jake falls heavily into a chair beside me, slaps his paperback down on the table, and folds his arms across his chest.
“I don’t wanna read,” he tells me.
“Okay,” I start. “What do you want to do?”
I’ve said the wrong thing. Jake gives me a confused smile. Rookie, his smile says, you’re not supposed to make it this easy.
“I mean, is there another book you want to read?” I ask quickly, trying to cover.
“No,” Jake says. “I want to go to sleep. I’m tired. I’m always tired in here.” He puts his head down on the desk and begins mock snoring.
“Jake,” I say a little more firmly. “You’ve only got ten minutes in here with me, so let’s make the best of it. Sit up now, please, and let’s read. This looks like a good book. What’s it about?”
“I don’t know,” Jake says, his voice muffled by his sleeve.
“Then maybe we should read it,” I say.
“I’m not gonna read,” Jake says. “I’m too tired.”
I wait a few beats. “Jake,” I say, “should I tell Miss Sally that you’re tired and maybe you need to spend more time in here with me?”
Jake lifts his head and glares at me. I’ve hit a nerve. He picks up the book and opens it but stares at me, sullenly. When he opens his mouth to speak, I expect him to defy me again, but he says, “Are you Blaze’s mom?”
“Yes,” I tell him.
“He’s weird,” Jake says.
“I suppose he is, a little,” I tell Jake, thinking, weird by special-ed standards, that really takes doing. “But we’re all a little weird in our own way,” I add. “Let’s get started on the reading.”
Finally, Jake complies. I’m surprised by how good his reading seems. He’s reading from a fourth-grade novel and he has no trouble pronouncing any of the words. I’m impressed until I realize that he isn’t really reading, he’s only saying the words on the page out loud. He has a complete lack of inflection in his voice and when I ask him to tell me what has happened in the last paragraph, he can’t.
“I’m only supposed to read,” he says. “I don’t have to talk about it.”
“Yes, but—” I start to tell him about understanding the story and how important that it, but he’s out the door. Our time is up.
Katie is the next one in. She’s in second grade and reading on a kindergarten level. She’s brought me a picture book and struggles over cat, the, and ball. She rubs her eyes and pulls at her shirt.
“Are you Blaze’s mom?” she asks me in a surprisingly husky voice.
“Yes.”
“He’s nice,” Katie says. I wait for the other shoe to drop but it doesn’t. Katie struggles through a few more three-letter words and then slides out. She sends Tommy in and Tommy is followed by Alex who can’t read at all—not a word. He’s memorized some portions of the book he brings me, but that’s it. He seems pleased with his effort. Blaze is the next one on my list. He saunters in and takes a seat next to me. He hasn’t brought a book to read.
“Hi, Mom,” he says. “Do you like the quiet room? What are you doing in here?”
“I’m reading with the kids,” I tell him. “Where’s your book?”
“What book?”
“You’re supposed to bring me a book to read.”
Blaze looks at me, bemused, as if to ask why he would possibly need a book or anything else resembling schoolwork while he’s in the quiet room with me. “So, Mom, what do you want to talk about with me?” he asks.
“I don’t want to talk, Blaze, I want you to pick out a book and read it to me.”
“I don’t want to read,” he says. He sounds almost insulted. We tango back and forth for a few minutes on the question of what book he will read and then I reach behind my chair and pull one out from a stash Sally keeps there, probably for this express purpose.
“I don’t want to read that book,” he says.
“You’re going to stay in here until you read something to me,” I tell him. “You can’t get away with this kind of stuff with me.”
We argue for almost the entire time that he’s in the quiet room, but, finally, Blaze reads something to me. It’s only a few sentences and he stops every third word for a non sequitur, but it’s something. I’ve been in here for an hour and I’m completely exhausted.
I have no more kids after Blaze leaves. The rest on my list are absent or busy working with Sally or with one of her three aides. I crack open the door of the quiet room and peer out into the classroom, hoping to catch a glimpse of insight. I see a couple of kids working on computers, oblivious to everything around them. I see Sally teaching a lesson about what lives in the ocean. Jake still looks angry. Alex looks as if he’s perfected the art of sleeping with his eyes open. Blaze is tapping his pencil on the desk, softly at first and then louder and louder until Sally tells him to stop.
The bell rings for recess and all the kids rise at once. Were it not for Sally’s stern admonishments, they’d all try to press through the door at the same time.
“Bye, Mom,” Blaze says perfunctorily and is out of there with the rest of them.
“Thanks so much for your help,” Sally says brightly. “How’d it go?”
“I had the most trouble with Blaze,” I tell her. “So, not bad, I guess. I’ll be back tomorrow.”
“Oh no, you don’t have to come every day,” Sally says.
“It’s okay,” I tell her. “I want to.”
I follow Blaze out to the playground, trying to be as unobtrusive as possible. I scan the swings, jungle gym, sandpit, and blacktop. He’s not in any of those places, not playing with any groups of kids, not even playing by himself among the others. I spy him, finally, walking the perimeter of the baseball field on the outer edge of the playground. He’s just walking, head down, alone, deep into the recesses of his own mind. I feel angry seeing him like this—not at him or anyone at the school, but at myself for being so long away, for drifting to the other side of a great divide that has opened between us. I feel sadness too, and not the wistful, photogenic kind. This sadness constricts, closes my throat, forces my hands into fists at my side.
My tall shoes totter on the spongy grass as I walk over to Blaze. He sees me coming and stops.
“What are you doing?” I ask him.
“Nothing,” he says guiltily.
“Why are you all the way over here by yourself?”
“I like it here,” he says.
“Why don’t you find somebody to play with?”
“I don’t want to find somebody to play with.”
“It looks weird, walking around by yourself.”
“Mom, aren’t you going home? Are you going to be here all day?”
“Yes, I’m going home. But, please, come back to the playground.”
“In a minute,” he says. “Okay, Mom? In a minute.”
I kiss him good-bye and turn to leave. But with every step I take off the grass, through the playground and off the school grounds, I have to fight an almost uncontrollable urge to run back, grab my child and take him home with me where I know he will be safe.
Quitting my job was not the magic bullet I’d hoped for where Blaze was concerned. Although I could now see what was going on at school for myself, Blaze’s problems the
re remained the same, regardless of the fact that I was physically present. In Sally’s class, Blaze was openly defiant and most of the time he simply refused to work.
“He is learning,” Sally told me, “but I can’t tell you what he knows or how much. I can’t even tell you how he’s learned it. He can do basic math, but he must have sponged it because he never gives any indication that he’s paying attention.”
As I continued to volunteer in Sally’s class, I became more familiar with her kids and their behaviors. Blaze had certainly been a quick study in this arena and had managed to mimic every inappropriate behavior he saw, whether this was pencil tapping, making odd noises, or banging his books together. He was a one-sided mirror of his class, reflecting only the negative. Added to this were his own quirks: fear of fire drills and loud noises, and difficulty writing. Despite the fact that he found imitating them so interesting, Blaze had formed no friendships with the children in Sally’s class. He continued his solitary treks around the baseball field at recess and when I occasionally found myself on campus at midday, I noticed that he ate lunch by himself as well.
While these behaviors were bad enough, they paled in comparison to what was going on in Mrs. Noel’s class in the afternoons. Now that I had no day job, I was able to pick Blaze up from school every day. I came a few minutes early and snuck around the side of the classroom to observe. Blaze seemed completely out of touch with the teacher and with his classmates. He was always in the back of the classroom, lost in his own world. I tried talking to Mrs. Noel, but I felt as if I was butting up against a brick wall. Blaze was completely unable to handle the academic demands of third grade, she told me, and therefore it was difficult to include him in her lessons. I asked her if there was anything to be done about the fact that Blaze didn’t seem to have any friends and spent so much of his time alone in a crowd. Mrs. Noel assured me that Blaze’s classmates were “very tolerant of him.” She gave me several wide, fake smiles and used my first name often when she spoke to me: “Well, I’ll tell you, Debra…My feeling is, Debra…Did you know, Debra…” I found this disconcerting and more than a little annoying.
At home, I pulled out the Yellow Pages and looked under the heading of schools. I had no idea what I was looking for and didn’t see much to begin with. There were a couple of private schools named after famous people with learning disabilities, a Waldorf school on the other side of the county, and a smattering of Montessori schools, most of which only went through second or third grade. I called a few of the schools and discovered the monthly tuitions were double what I was paying for rent. It was clear that I wouldn’t be able to pay for a private school on my waitress income. I knew that several school districts subsidized private-school education for special-education students whose needs were not being met in a public-school setting, but Blaze’s school district prided itself on having one of the highest standards in the county for both academics and special education. They weren’t about to finance a costly private school education when they felt that they were quite capable of doing it themselves, thank you. I could hire an educational advocate (essentially a lawyer versed in educational law) to argue a case for private school, but there was no guarantee that an advocate would succeed either. In any case, advocates charged an average of $100 per hour ( I called a few just to be sure) and none of the advocates in my area worked on a pro bono basis.
Sally confirmed all of this for me when I raised the issue of alternative schools with her during recess one day.
“The only programs that this district has considered in the past are the ones that are more for kids with—kids who have—meet the criteria for severely emotionally disturbed,” she said. “There’s one a few miles from here, if you want to check it out.”
“No, I don’t,” I told her. “Blaze is not emotionally disturbed.”
“No, I don’t think he’d do well there,” Sally told me.
“Well, what if I hired an advocate?” I asked, knowing full well I couldn’t, but wanting to gauge her reaction anyway.
“That’s certainly your right,” she said, “but before you got Blaze placed somewhere, he’d have to have a diagnosis. An advocate would have to present that diagnosis coming in.”
“Do you have any suggestions for me, then?” I asked her. Although I’d always liked Sally, I had developed a new respect for her since I’d started volunteering in her classroom. The sheer effort and emotional output she offered every day was staggering, yet I never saw her level of energy flag. Watching her teach was like watching a math genius work a dozen puzzles all at the same time. It was more than impressive. Although I was wary of teachers in general, I trusted her more than I trusted anybody else at the school.
Sally couldn’t recommend any private schools, but she did say that it might be easier to develop a more effective educational plan for Blaze if it was clearer exactly what his problems were and how they could best be addressed. It couldn’t hurt to have him reassessed, she said. The professionals were learning more each day and it could only help his teachers to have additional strategies for teaching him. So, despite the fact that I’d always disliked labels and wasn’t entirely sure that it would benefit Blaze to have one, I went in search of a diagnosis.
Once again, I took Blaze to the center for school problems to visit the same psychologist we’d seen when Blaze was in kindergarten. My reasons were fairly simple; I’d been in total agreement with Dr. F.’s assessment of Blaze the first time around, for one thing, and for another, money was still an issue. I just couldn’t afford to take Blaze anywhere else.
I was spared filling out another medical history form as Dr. F. decided to refer to his original notes. I felt much less optimistic than I had when I’d brought Blaze in four years before. I told Dr. F. about Blaze’s success in first grade, decline the following year, and the mess he was in currently. I shared my fears about Blaze’s social development and the fact that he didn’t seem to have made any social connections, much less friends, in his peer group. I blamed his teachers. If they were better equipped or more empathetic, I said, they would be able to reach Blaze. It couldn’t be that difficult, could it?
Dr. F. spent less time with Blaze than he had the first time around. After half an hour, I was summoned into his office. Blaze was sitting in the doctor’s chair, playing with the computer.
Dr. F smiled broadly as he spoke to me. In his opinion, he said, there was nothing really wrong with Blaze, although he was certainly unusual and had a unique angle on the world around him. My son, he told me, was also a gifted manipulator and had created several strategies to avoid performing tasks he felt were too difficult. Blaze had difficulty with his handwriting, Dr. F. said, and also showed some difficulty with complex addition and subtraction. Dr. F. believed that these difficulties were somehow related to Blaze’s endocrine problems, but he couldn’t tell me how. When I told him that Blaze’s endocrinologist steadfastly maintained that there was no connection between the medical and learning problems, Dr. F. shrugged. “We doctors are not always in agreement,” he said. I certainly agreed with this and with almost everything else that Dr. F. said, just as I had the first time. Dr. F. promised to write a helpful report for the school and offered one last opinion about our situation.
“You realize,” he said, “that if you were very wealthy, Blaze would probably just be considered charmingly eccentric.”
I thought that this was one of the most insightful observations I’d ever heard from a professional, but I didn’t see how it would provide any concrete help unless I discovered a quick way to become rich.
I received Dr. F.’s written report a week later and, once again, I shared it with Dr. Roberts and Sally. This time, even the normally reserved Dr. Roberts had difficulty concealing her disdain, telling me that it was one of the most unprofessional reports she’d ever seen. For one thing, there was no mention of any tests, Dr. Roberts said. Did Dr. F. even administer any? The report was carelessly written and rife with spelling errors and incorrect dates
. All of this showed a basic inattention to the assessment, she said, not to mention that the body of the report said nothing useful.
Blaze is a young boy of above average intelligence, the report said, who presents with a moderate dysgraphia and mild dyscalculia the nature of which suggests these parts of his development “stopped” at roughly the same time his growth curve flattened. These deficits are not extraordinary, however, and in and of themselves should not pose a difficult remedial issue. Rather, it is this examiner’s opinion it is Blaze’s personality in combination with these difficulties that are proving confusing to his educators.
Both Dr. Roberts and Sally felt that this was a vast understatement of Blaze’s problems. Sally, especially, was irritated that Dr. F. had not interviewed her by phone as he had the first time and hadn’t taken into account any of the school’s evaluations. But it was Dr. F.’s final summary that irritated them the most.
Blaze’s neuropsychological profile is that of a bright young boy who has profited from parts of his educational experience but remains “frozen” in other domains. It may be that this is related to the same factors affecting his growth curve but whatever the etiology, it is clear he has developed little in visual-integrative tasks or in specific areas of motor function.
In and of themselves, these academic problems should not prove overwhelming. It is this examiner’s opinion that the consternation occurs in trying to tease out behavioral versus cognitive contributions to his academic problems. He is by personality a highly eccentric, idiosyncratic youngster whose approach to common problems is anything but common. While this creativity can be a gift, it is also used to hide from situations he finds uncomfortable, particularly those that highlight his weaknesses.
Raising Blaze Page 13