Touche'

As a parent, I wanted only what was best for my child. Education, I believed, would be her “ticket” to success. It was just a few months ago when I realized that my child’s academic education was only the small print on that “ticket” I held so desperately tight. She was mainstreamed into the general student population since kindergarten. I have always had to fight the battle of the IEP (individualized education plan) for my child. Either she was too far advanced intellectually or her blindness was too great a disability for the education systems to understand. Many a sleepless night would pass as I read law books and parent books. Just the mere task of understanding the “law” was daunting at best. Over the years, twenty of them at this point, I learned the law and I learned how to be an advocate for my daughter.
It seems rather odd to condense twenty years of my child’s life into a single paragraph, so much has happened during that time. So many things were learned and relearned. So many perceptions were made and then changed. So many hopes and dreams seemed to flit away like a wisp of down on a warm summer breeze. Yet those same hopes and dreams, that seemed so illusive, were still there. They were tucked securely in the recess of my heart, nestled warmly between the love for my child and the tenacity of a mother. They were merely hibernating.
Although I had been advocating life skills for seven years, it took the words of Dr. Richard Jackson, (Associate Professor Boston College/The Lynch School of Education, Teaching Practices Liaison/National Center on Accessing the General Curriculum (NCAC) CAST, Inc) to help the IEP team see the errors of their ways.
Following a review of my child’s proposed IEP and a recent Carroll Center for the Blind evaluation, Dr. Jackson dissected the IEP documents with the precision of a surgeon’s scalpel. He addressed areas of long-standing concern (life skills) which, up until this point, had been largely ignored by the local district. Here was a student that had participated in graduation ceremonies with her peers in June, holding 27 academic credits when only 22 were required. A student who could take an 8x11 sheet of paper and fold it precisely in half and then again in quarters, but who could not fold a T-shirt. A student who could navigate successfully through a high school housing 700+ students, yet could not cross a street alone.
I noticed several things as Dr. Jackson spoke to the team members. I could see the shadow of shame curl around their minds. They were thinking now. They were finally hearing the facts from someone other than the parent, the negligence and discrimination of the past seven years slapping them coldly in the face. One would think I would have leaped with joy at this revelation. Yet I could no more leap with joy than draw a well-honed blade from its sheath to slit mercilessly across their throats. The deed was done. The shame, a tangible thing, was felt by all save my child and I. I pitied them and their ignorance. In the brilliant light of a “consumer’s” humble words, their ignorance was shown for all of its unsavory horror.
I remember hearing their attorney clear his throat when Dr. Jackson concluded his findings and recommendations. He requested a brief recess to “privately discuss items of concern.” The tension in the room was palpable. None, save my child’s Teacher for the Blind, could meet my stare. Each member looking away as I attempted eye contact. Out the window their gazes would travel or down to the mound of papers piled before them, anywhere instead of at me. My child’s hand reached under the table to find my own. Her soft touch upon my hand sent a river of warmth and understanding through my body. My tension evaporated like the morning dew on a warm spring day. She has a way with her touch; it eases the mind and soothes fears.
For a brief moment, it was just she and I. I leaned close to whisper comforting words. Before I could utter a single word, the door of the room opened with a resounding thud and the attorney for the school district reentered. He took his seat and without fanfare informed the district that without the necessary personnel it was law, that in this instance, the school district would have to provide tuition for my child to attend a facility that could meet her identified needs. For a moment I thought I heard a chorus of angels singing, “hallelujah!” I know I heard several members of the IEP team exhale their pent-up breaths. It was surreal, every detail imprinted upon my brain. The hopes, dreams and wishes I had so carefully and tenderly tucked away began to wake. The tiniest of movements, a flutter of life, a sure indication that promise was lifting the veil of uncertainty. Amber was going to the Carroll Center!
As the end of the twelve-week independent living program drew to a close, I knew that Amber was making remarkable strides. Each Friday night as the bus pulled into the driveway, Amber nearly bounded out of the bus. She would relate all of her accomplishments for each program she was participating in, categorically stating, “I am so comfortable up here, Mom.” “They really understand me.” “I am learning so many things.” The skills she was learning were coming home with her. She was washing her own clothes as well as folding and hanging them. She was loading and unloading the dishwasher. She was scheduling her own appointments and arranging for transportation. She was making the family dinners. She was putting on make-up! I saw the progress. Moreover, I saw the potential for a great deal more. Her twelve-week program concluded and another eight-week program was authorized, but what did the future hold for her? Was she ready?
During the drive up to Newton, I felt a great deal of apprehension as I attempted to prepare myself. There would be an entire month of “no services” before Amber could return to the Carroll Center. The fear of the unknown was making me feel sick to my stomach, that queasy kind of sick when one has not eaten all day or perhaps drank too much coffee. I wasn’t sure what to expect. Would she be ready for an independent life when all of the hard work was done? Would her hopes, dreams and goals find reality? My mind was a whirl of questions, expectations, fears and hopes as I pulled into the circular drive of the Carroll Center.
What was once a private residence of a wealthy family, donated to the Boston Archdiocese, the Carroll Center, offers a safe and warm welcome. The pristine setting seems to wrap itself around visitors as they enter the grounds. Small cottage-like buildings (located strategically throughout the grounds), are used for storage now but housed servants and groundskeepers long ago. A Victorian mansion stands majestically against a wooded backdrop, its beauty remaining evident even in its transformation to Raeder Hall, the main dormitory for the Carroll Center’s clients. The barn, once housing a line of champion horses and elegant carriages, now serves as the main education building. The stall area has been converted into a computer center and the loft area expanded to house administrative offices and classrooms. The technology building, the newest addition to the grounds, sits just to the east of the barn. Aesthetically designed, it blends smoothly with the historical feel of the facility and its grounds.
My hands were like ice as I pulled my car into a parking spot. I snuffed out my cigarette quickly and angrily as I thought, “Just get a grip!” I am usually well prepared for anything, but today, I felt like I was stepping into the unknown. I entered the main building quickly, forgetting the fact that if I did not hold the door as it shut, it would slam rather loudly. Before I could open the second door, I nearly jumped out of my skin at the resounding “BANG!” as the outer door slammed shut. I moved quickly down the hallway into the “fishbowl,” a waiting area of sorts that can be observed from nearly every vantage point in the barn. I glanced at my watch and saw it was nearly 10:45. I quickly asked the receptionist if she knew where Amber would be. I’m not sure if it was just impatience that the receptionist heard in my voice or if she, like Amber, knew that I was apprehensive. She lifted her head just enough so that I could see her face. Before me sat a young woman of perhaps twenty-five, with a smile that could have knocked out Mohammed Ali. It didn’t matter that beneath the soft gray glasses were eyes unseeing, it was her smile. The intense apprehension I felt seemed to drain from my body, leaving me suddenly exhausted. I had to chuckle; the release of tension was palpable. As I laughed, her smile became more brilliant. She said, “Amber will be due in the main assembly in about five minutes. Will you be observing?” I felt like a bumbling idiot as I nodded, suddenly realizing that the receptionist was waiting for an answer to her question, after all she couldn’t see me nodding. I managed to say, “Yes, I would like to observe.”
One by one, clients began entering the main assembly. I observed each of them individually, mentally comparing him or her to my child. Where were they in their search for independence? How old are you? Where did you go to school? Are you recently blinded or blind since birth? Have you ever had a date? Are you afraid?
I heard her before I actually saw her. Chatting away with her O&M instructor (Orientation & Mobility), my heart swelled with a mother’s love and pride as I watched her move through the hallway towards the “fishbowl.” I saw another client approaching the same area from another direction and had to mentally stop myself from calling out a warning. I thought for sure they would collide and someone would get hurt. Like a ballet, each merely paused, allowing one to pass the other.
Amber’s face was lit like the North Star on a clear night as she entered. She called out; “Measure!” and the other clients began to chuckle. Then someone called out “En guarde’!” and there was more laughter. They all began to move towards one corner of the room without the use of their canes; opening a door, they stepped beyond my view. When they immerged from the annex, each wore a helmet, padding and carried a foil. I smiled thinking, “Ok, this is what Amber has been chattering about for the past twelve weekends.”
He walked with a marked limp and ever so slowly. He ran his hand over his sparsely covered head that glistened under the soft lighting of the room. His smile was contagious. His voice was calm and soothing as he greeted each client individually. I had known that Eric had suffered a stroke in December and that he had just recently returned to the Carroll Center to teach. Two individuals accompanied Eric; one person carried a large camera with a tripod and the other a microphone with volumes of cable.
Eric took his place at the head of the room, he glanced my way and smiled. I acknowledged his greeting with a smile of my own. In a soft and reassuring voice he told the clients that the local Boston cable hostess was doing an interview based on the Boston Globe article that had been written the week before. It took only a few minutes for the cable folks to set up their equipment and they wasted no time beginning the interview. “ Eric, why do you teach the blind to fence? What is the purpose?” In a soft and soothing voice Eric explained, “Fencing, an innovative idea of Father Carroll, was incorporated into the rehabilitation program to help blinded persons develop balance, dexterity, and coordination necessary for cane travel. The clients learn self-confidence and self-awareness. They learn how to adjust quickly, in a world of ever-changing situations.” He went on for about 10 minutes, giving the history of the fencing program and how he came to be the instructor. I was in awe listening to his words. It now made sense to me. I understood why Amber talked incessantly about fencing classes, and why she felt so good afterwards. I had, up to that point, assumed it was just a “gravy” class for Amber: something fun to do, instead of one of the more challenging classes. My desperate grip on that “ticket” of academic education began to loosen.
She stood there with her legs modestly spread. Her hips seemed set in place, something I have always watched as her cerebral palsy affects her from the waist down. Her back was arched softly and her shoulders were squared to her hips. The helmet she wore obscured my view of her face, yet I knew she was smiling. The bulk of the starch white vest that protected her torso, caused her tiny frame to appear bigger than life. In her delicate little hand she held a four-foot long foil, on its tip a small bright red ball of wax to blunt its tip.
Eric made his way to her, I saw her wiggle slightly with excitement. She knew she was his first opponent and she was ready for him. Leaning close, he gave quiet instructions to Amber, instructions that only she and whoever was standing next to her could hear. I struggled to make out the words being shared, but could hear nothing but soft murmurs. Eric straightened up and stepped back several paces. He asked in a bold voice, “Amber, are you ready?” Amber shouted, “MEASURE!” at which point she stepped forward, her arm extending with fluid grace, her foil gently brushing Eric’s shoulder. She stepped back bringing her foil in one swift movement upward to her face, holding the foil in this position she boomed, “READY!” Eric called out, “En guarde’!” The two foils came together one resting upon the other. The razor sharp singing of metal on metal caused my skin to dimple with gooseflesh. Someone shouted, “Fence!” and with speed that I never realized she had, Amber parried to the right of Eric’s foil. With a small lunge forward, her foil parlayed to Eric’s right. It was slow motion as I watched her foil slice through the air, the metal of her foil sounding like a crescendo as it sang along a path that only she was aware of. I watched in amazement as Eric tried to lunge out of harm’s way, yet her aim stayed true. She had either heard his movement or anticipated it, either of which I am not sure. I watched the tip, that blood red tip, as it hit home against the center of Eric’s starch-white padding. In the blink of my mind’s eye, I saw it rip cleanly through the padding and find his pale flesh. The foil bowed severely, like a sapling in a windstorm, the blood red tip pushing against Eric’s padded chest. “Touché!” Eric shouted. Amber retracted her foil and tore off her helmet; a tumble of curls caressed her brow and flushed cheeks. Her smile could have lit the East Coast, its brilliance so inspiring. Her joy and self-confidence had erased any fears I had of her readiness for independence. Amber was ready. The only thought in my mind as I watched my child soar with success was the soft echo of Eric’s words, “Touché.”