At night, I couldn’t fall asleep. I lay in bed for hours, creating escape fantasies in my imagination. We’d move to an island. We’d fly away, fall down a rabbit hole, take a balloon to Oz. When I did fall asleep, I had recurring nightmares. In the worst one, Blaze was lost and I couldn’t find him no matter how hard I looked. In the dream, the landscape was divided into many different levels, which I had to climb up and down. One was dry, one was snowy, one was wet. On each level were people who’d had contact with Blaze in some fashion. There were old teachers and new teachers, neighbors, psychologists. Mr. Davidson was there on one level, surrounded by the parents of his students. My family was nowhere to be found. I kept trying to get these people to help me find Blaze, but everyone sort of gave up after looking only a short while. Some even tried to distract me so that I wouldn’t think about him anymore. I felt betrayed by all of them, but especially by Mr. Davidson. “Wasn’t he with you last?” I asked. “Didn’t you see where he went?” Mr. Davidson turned around and walked away. My panic escalated as the dream wore on and I woke up, my heart pounding, my eyes dry and painful.
In his own room, Blaze wasn’t faring much better. I’d wake up at two, three, four o’clock in the morning and hear music seeping through the wall. He was awake in there every night, listening to Miles Davis’s Sketches of Spain, creating his own sleepless escape.
By January 2001, I had attended three very long IEP meetings with Dr. Jean. The staff was, unsurprisingly, much more conciliatory with a lawyer present, but continued to present evidence that Blaze was a seriously handicapped child whose needs clearly exceeded their capabilities. I knew what direction they were headed. The district didn’t want to pay for a private school and, if we proved that they did not have an adequate program for Blaze, that is exactly what they would be forced to do. For them, the best bet was to prove that Blaze belonged in one of their SH (severely handicapped) programs and ship him out. Pretty soon, I told Dr. Jean, their case would be fairly airtight because Blaze was having a nervous breakdown.
“I’m losing him,” I told Dr. Jean. “And I won’t be able to get him back this time.”
Although we never mentioned it to them, the district needn’t have worried about funding a private school. There was precious little available in the way of specialized schools. My choices were limited to two: a school that admitted exceptional children with learning disabilities but no behavior problems and a school that catered to children with severe behavior problems. Blaze didn’t fit either category. It was a Gordian knot, getting tighter and more tangled by the day.
Just before the third and final IEP meeting, I finally stopped wallowing and made a decision. I had come to pick Blaze up from school early one Friday (by then it had been determined that he couldn’t last a whole day) and waited outside the office for Mrs. M. to escort him over to me. I saw them approaching before they saw me. Blaze looked more miserable than I’d ever seen him. His eyes were downcast and his shoulders were slumped. Mrs. M. steered him toward the office and then caught sight of me, waiting. The two of them stopped before me.
“Not a very good day, I’m afraid,” Mrs. M. said.
“Blaze?” I said.
Blaze looked at me and, suddenly, his eyes filled with tears. “Oh, Mom,” he said. “Mom, I’m sorry. Don’t be mad at me.”
“Oh, honey, I’m not mad at you,” I said. “Come here, I’m not mad.” I put my arms around him and he buried his head in my shoulder, sobbing, his whole body shaking. “It’s okay, Blaze, it’s okay, honey,” I said, but it clearly wasn’t okay. Nothing was even remotely okay. I stared daggers at Mrs. M., and she smiled and shrugged her shoulders. “Well, I have to go now,” she said and her smile widened. She gave Blaze an awkward pat on the back. “Have a nice weekend!” she said and walked off.
When we got home, I sat with Blaze on the couch for an hour in silence while his eyes continued to leak out tears. I held him and stroked his head. He was completely exhausted. Finally, he said, “Mom, are you sure you’re not mad at me? School is just too hard for me. I’m sorry.”
“It’s all right,” I told him. “I’m really not mad at you. You don’t have to go back to that school again.”
“Do you mean on Monday? I don’t have to go to school on Monday?”
“You don’t have to go back to that school ever. You’re going to stay home with me. We’ll do school here. I’ll teach you. You’re finished with that school and with Mrs. M. What do you think of that plan?”
“That’s good, Mom. That’s very good.”
1/26/01
Ginsberg, Blaze
Continuation of three-year review
IEP Team Meeting Notes
Parent rights were offered and signed. Introductions were done. The purpose of this meeting is to finalize some points of the IEP.
The technology specialist gave his report. He stated that when he did his observation Blaze was distractible and difficult to keep on task. Blaze is tuned in even though he appears to be disengaged. The technology specialist feels a spell-check is very important.
The school psychologist reviewed his report again. A neuropsychological evaluation was completed on Blaze. Blaze experiences sensory overload in the classroom. He tends to shut down in the classroom.
Blaze needs information presented to him using a multisensory approach. He cannot process information that is not relevant or meaningful to him. He benefits most from one-on-one instruction that is meaningful and functional. He has difficulty with abstract thinking. The curriculum needs to be integrated. Blaze is overwhelmed with too much sensory input. Too much inclusion is difficult for Blaze.
Blaze’s mom and advocate indicate that Blaze is very stressed right now. Consequently, they have kept him home for the last few days. Home schooling does not entitle Blaze to services.
[This school] is not working for Blaze right now. A transition plan for Blaze needs to be implemented. Mom states that Blaze is ready for a change. The school psychologist and the special-ed coordinator do not feel that a home [program] would be a good option for Blaze. It is their recommendation that he begin to transition now into a new program. He could transition slowly and start with a shortened day. Blaze’s case carrier is concerned that allowing Blaze to stay home may reward negative behaviors. Blaze’s mom feels he really needs the opportunity to de-stress so that he is emotionally ready to go to a new school. Blaze’s grandfather feels Blaze has gotten into some bad behavior habits. He needs the time at home to relearn some good behaviors.
Blaze will be on “home hospital” for the month of February. He will begin school in a special day class placement on February 26. During the month of February, Blaze will visit [his new school].
The team discussed his handicapping condition. His original condition was speech and language impaired. This is not an accurate description of Blaze. The team decided his handicapping condition will now be multiple disabilities (MD).
[ Chapter 14 ]
HOME
March 2001
Blaze has been out of school for almost two months. When I made it, the decision to keep him at home seemed desperate and extreme. Never once, in his eight years of schooling, had I seriously considered removing Blaze from school. I felt sure that there would be some sort of reaction from the district office, although I had no idea what that might be. Please send him back to school? Maybe. We’re sorry, we were wrong? Perhaps. Of course, there was nothing of the kind forthcoming from the school or the district.
After the last IEP meeting, wherein Mrs. M., Clark, and the special-ed administrator had vigorously tried to dissuade me from taking Blaze out of school (not their school, mind you, just school in general), I made arrangements with Mrs. M. to pick up Blaze’s books and a month’s worth of classroom assignments.
When I arrived at her classroom, she greeted me with the same ridiculous fake smile she always gave me during IEP meetings, as if we were really secret buddies and could never let a little thing like my child get in the way of
our friendship.
“Oh, you know, the children were disappointed that they didn’t get a chance to say good-bye to Blaze,” she said. “Maybe you could bring him around to say good-bye.”
I stared at her in disbelief. There were so many names I wanted to call her, so many epithets I wanted to hurl in her direction. I held all of this back, but for the first time I could remember, I was actively rude to a teacher.
“Can I get those books?” I said. “I’d like to leave now.”
On my way out, I ran into Clark.
“Howdy,” he said. “How’s it going?”
“About as well as could be expected,” I said.
“Well, good luck,” he said. “We’ll be in touch.”
I haven’t heard from anybody at the school since then. It’s almost as if Blaze and I have dropped off the radar and disappeared. Had I known it was this easy to create our own island, I might have tried it earlier. It is peaceful here. Both Blaze and I have finally started sleeping through the night and, slowly, we are patching the stress fractures that have occurred over the last few months. But islands are known for isolation as well as peace. These days, I feel like I might as well be living on Mars for all the contact I have with the outside world. I have been working at home for some time, with most of my professional relationships taking place through the phone or e-mail. There is hardly any need for me to leave the house, other than to go shopping or run errands. And now that Blaze is no longer in school, I have lost all connection with what my father used to call “out there.” Of course, I do see various members of my family on a daily basis, but then again, none of us have ever been representatives of the real world.
This isolation worries me a little. For now, removal from the fray is allowing me an opportunity to recharge and Blaze a chance to heal. But I suspect it won’t take long for either one of us to forget how to negotiate the social contracts “out there.” This has never been Blaze’s strong suit, anyway. If I lose myself in our little world, we’ll both be falling without a net. But these vague fears are pale compared to the impossible stress of the last few months, so I’m allowing myself the time to drift, to avoid making any long-range decisions. My primary concern now is making sure that Blaze learns something while he is home with me and doesn’t lose any of the academic skills he has worked so hard to gain.
Six weeks ago, my entire family pitched in to help me. As they had so many times before, my own personal village joined forces in an attempt to raise one child. After dinner one evening, we gathered for a family meeting and my father made an announcement.
“As you all know, Blaze has been released from school for the time being,” he said. “Before he starts at another school, it’s very important that he develop some good work habits. He was so off track at this school that he wouldn’t even stay in class. Nobody knows how much he knows or what he knows, but one thing’s for sure: he hasn’t learned anything this year except how to behave badly. It’s our job now to help him get into some good habits and learn some basics. We’re all going to have to devote some time to Blaze every week. Every one of you has a special skill you can teach him and he has a unique relationship with every one of you.
“Debra has the toughest job here because she’s the one who is going to have to do most of the work and the one who is going to spend the most time with Blaze. But all of us have to help her. So how about it?”
There were no dissenters in the ranks.
Over the next few days, we hammered out a schedule. Maya took two mornings a week to teach Blaze music. After a few abortive attempts with the violin (too much fine motor coordination required there), Maya found an inexpensive cello, an instrument that Blaze was much more comfortable with. Because cello was not Maya’s instrument, she signed up for lessons as well.
My realtor sister Lavander expressed doubts about her abilities to teach Blaze anything of value.
“I’m not an artist like all you people,” she said. “I don’t write or play music or act or anything. What am I supposed to teach him?”
“That’s why you’re perfect,” I told her. “There are altogether too many arty types around here. You’re the most organized person in this family. I need you to show him how to write clearly and legibly, how to fill out a form, write a letter, enter information in a check register.”
“But that’s so easy.”
“Not for him, it’s not.”
When Lavander showed up for her first Friday-afternoon session, she brought paper, envelopes, stamps, an old check register, sharpened pencils, and a list of assignments for Blaze. All of this was neatly tucked into a folder with one of her business cards clipped to the outside. It was a beautiful thing.
My brother, Bo, the baseball coach, took charge of Blaze’s physical education. Once a week, he showed up and took Blaze out to the batting cages to hit and catch. Bo also versed Blaze in the fine art of male chauvinism. As a result, Blaze came back from his sessions glowing and invigorated, the remnants of red licorice staining his lips, spouting his new mantra: “I can’t tell you what we did, it’s between us guys.”
My actress sister Déja decided to work with Blaze on playwriting. The two of them disappeared into his room and generated several one act plays together, which they would then act out.
My mother, who had recently begun developing her nascent talent as an artist, offered to teach Blaze how to mix color and how to approach an empty canvas with excitement as opposed to the fear of failure that he’d held since his days in kindergarten.
Aside from me, my father spent the most time with Blaze. On Mondays and Thursdays, he worked with Blaze on practical math skills. (“He can’t even make change for a dollar,” my father said, shaking his head in disapproval. “We’ve got a long way to go here.”) I listened to them work and shuddered, having intense flashbacks to my own fourth-grade math lessons with my father.
“No, that’s wrong,” my father said. “You forgot to carry the one again.”
“No, I didn’t,” Blaze said.
“Yes, you did.”
“No, I did—oh, yeah, I did.”
“Do it again.”
“Okay, Papa.”
“Why did you skip that problem?” my father asked.
“I don’t want to do it, it’s got a remainder of two.”
“What are you talking about?”
“I don’t do remainder twos.”
“Why not?”
“Remainder two is boring. I like remainder seven better.”
“Don’t be ridiculous, Blaze. I’m not one of your teachers, you can’t get away with that crap with me. ‘I don’t do remainder two!’ What, are you kidding? Do the problem. I don’t want to hear that nonsense again.”
“Okay, Papa,” Blaze said, laughing.
The rest of Blaze’s education was left to me. After a week of wading through his seventh-grade textbooks and worksheets, I realized I was unable to teach the chaotic combination of science, history, and language arts that was laid before me. I’d had no time to prepare, no lesson plans, no time to brush up on my own skills. I didn’t even know where Blaze was on an academic level. He knew the difference between DNA and RNA, but he didn’t understand the concept of natural selection. He knew, and understood, the entire Bill of Rights, but he had no idea what the Revolutionary War was. He knew all the parts of speech, but he started sentences without capital letters and refused to use any kind of punctuation. I figured it would take me months just to untangle the strands of his knowledge and lay them in the right direction. So I fell back on what I knew best—words.
For me, reading was the key to everything else. I reckoned that if I could just get Blaze reading and comprehending what he read, the rest would come.
We started by going through the seventh-grade syllabus, which contained all the usual suspects: Tom Sawyer, The Outsiders, Old Yeller, and The Hobbit, among others. I started every one of these books with Blaze and even finished Old Yeller, but he didn’t connect with any of them. It was
agonizing trying to read with him when he was clearly getting nothing out of the text. Finally, I asked him what book he wanted to read.
“Romeo and Juliet,” he said.
“Shakespeare?” I said. “You want to read Shakespeare?”
“Who’s Shakespeare?” he said.
“Shakespeare wrote Romeo and Juliet.”
“Oh, okay. Then I want to read Shakespeare.”
Fine, I thought, we’ll read Shakespeare. What the hell. I bought three books. The first was a narrative version of Romeo and Juliet in a kid-friendly format. The second was a play, written in modern English. The third was Shakespeare’s version. I started with the narrative version. Before we began, I gave Blaze a lesson about sixteenth-century England and who Shakespeare was. I explained iambic pentameter and why it was difficult to read Shakespeare in the original. After he’d absorbed all of this, we began to read, alternating pages.
From the first page, Blaze was totally involved in the story. Every so often, we’d stop and have spirited discussions about the action and the motivations of the characters. Blaze took more interest in the minor characters than the two principals and asked me what was the deal with Mercutio anyway, why was he so mad at everything? And Lord Capulet, why was he so disrespectful to Juliet? That Lord Capulet is an idiot, Mom, don’t you think? He understood the love story and could even appreciate the tragic elements of the play, but, ultimately, Blaze was fascinated by the action on the periphery. This, I thought, was not a huge surprise.
Raising Blaze Page 27