The Four Walls of My Freedom (11 page)

By now, Nicholas was five years old. It was late June, and we still didn't have a school place organized for September. One day, in desperation, I telephoned Robinsfield School, the elementary state school at the end of our street. I knew Robinsfield wasn't wheelchair accessible in the least, but I was grasping at straws. I remember describing Nick's needs to Sheila Sansbury, the head teacher, then sighing, “I suppose there's no way you would want my son.”

“
WANT
him, He's in!” she practically shouted. “Our school
needs
your son.”

“But your school isn't even wheelchair accessible,” I spluttered.

“Architecture, dear!” she sang. “It's only architecture!”

June Simson, the special education director for our area of London at the time, was sceptical at first about the workability of having Nick at Robinsfield, but she decided to allow the experiment of his placement to go forward. A “good” bureaucrat, June would eventually become a powerful asset in accessing the supports Nick needed and dreaming up workaround solutions for even the most intractable problems.

A caterpillar, battery-powered stair climber was purchased to bring Nicholas from classroom to cafeteria and playground. Two support workers were hired to job-share in assisting Nicholas with all aspects of his school life. A part-time specialist teacher was identified to help Nick learn his reading and talking computer skills. With help, Nicholas learned alongside his peers. He learned to understand the natural world and to imagine experiences outside his own. Robinsfield was the best little school in the world and he was its star pupil.

In 1996, we moved back to Ottawa. I knew that I wanted to replicate Nicholas' Robinsfield experience in Canada, so I arrived home armed with a video showing snippets of Nicholas learning and playing in his neighbourhood school alongside his able-bodied London peers. A date was set in late August for the
IPRC
(Independent Program Review Committee). This group would decide where Nicholas would be placed in school and what kind of supports he would have. I knew that Nick's needs would be considered, but so would shrinking budgets. I had prearranged for a video monitor and had prepared handouts for the committee, which included photos and testimonies of Nick's mainstream success story. It felt like a parole hearing and the prisoner was me. I decided to exude confidence, middle-class entitlement and prayed that Nicholas himself, along with the English accents of his mates would work a charm offensive. It worked — he was assigned the school of my choice, Churchill Alternative Public School. The alternative schools in Ontario are modelled after the British Infant School system, so Nicholas would have the same active, experiential learning as at Robinsfield. There would be plenty of opportunity for chatter and experiments, with room for his wheelchair at tables of organized chaos. I was triumphant and hopeful for the next phase of Nicholas' school life.

At Churchill, Nicholas was blessed by terrific teachers, a wonderful nurse and an educational assistant who became expert in the technology that allowed Nick to speak using his special computer. During grade five medieval studies, Nicholas played the part of a feast guest, speaking his lines on cue through the computer: “Mmmm, this is good pheasant!”

It was no wonder that after four years at Churchill, a change to middle school seemed akin to free-diving. Adding to our anxiety was the fact that Terry, Nick's educational assistant, announced plans of a move to Toronto in order to pursue disability studies. We chose to continue Nicholas in the alternative system. However, Summit Alternative School was not a roaring success. Despite best efforts by the educational assistant there, teachers were bemused by Nick's presence in class. Primary-school chums who used to welcome him onto pickup hockey teams at recess, now ignored Nick's presence in the hallways. Girls checked their makeup, boys checked their iPods. Nicholas' hip was a problem and surgery, I knew, was imminent. After one year, I decided to move Nicholas to a special school for grade eight. Indeed, Nicholas spent most of his eighth grade in hospital because of surgery and other medical problems. Probably, that was a good thing, given the level of academic rigour. For Nicholas, learning wasn't a feature of the school year in 2001.

The following year, there was one option for Nicholas in the special school setting. The Ottawa Technical Learning Centre purported to offer students with physical disabilities a safe haven for studying the provincial curriculum. It turned out to be neither safe, nor studious. “The Unit” for teens with physical disabilities was located upstairs, separated from the vocational high school on the main floor. When I suggested that Nicholas should attend a class in English literature, the director responded that I find a community volunteer to accompany him downstairs for the duration of the class. No staff members were available for such excursions. Neither was anyone available to change Nicholas when he had an unscheduled bowel movement. He would have to wait until “changing time,” due to staff shortage. The final straw was when a sympathetic teacher reported that Nicholas was part of class that studied “beading.” Students were taught how to string beads to make jewellery. Nicholas has neither hand function nor vision. He stared at the ceiling throughout that class and thought (probably) about Harry Potter. I taught Nicholas to be polite and he didn't complain, but I did. He was out of there the following year.

Not only was Nicholas' new high school on the other side of our city, but the exclusion he suffered within the school walls was the source of great loneliness in our family. In grade nine, Nicholas spent a long time in hospital, but no one from school except for his adult helpers came to visit. Other parents weren't neighbours, so no one brought food to our door. It was a lonely time.

We lived directly across the street from a Catholic high school. I had spoken to the principal on several occasions and he was amenable to the idea of having Nicholas attend, but he was wary and made no guarantees. “We would do our best,” was his guarded refrain. Finally, the bitter experience of the previous year forced me to swallow my fear and say, “We would like to come to Notre Dame.” Once again, the best solution to learning and belonging turned out to be on our own street. The Catholic ethic meant that students were assigned to be buddies to Nick during lunch hour. Nicholas was encouraged to become the sports reporter for the school paper. He was active in each of his classes and struggled to complete his homework on time. At the end of his final year, Nicholas was nominated for a “Spirit of the Capital Youth Award.” Cathie Healy, special teacher and special friend, prepared his nomination letter. She wrote:

It is an immense pleasure to recommend Mr. Nicholas Wright for a Spirit of the Capital Youth Award in the area of Academic Perseverance.

Nicholas is an exceptional young man who came to Notre Dame High School two years ago. His presence has enriched the community of Notre Dame. Each day he extends to all a genuine love of life that reminds us to appreciate all that we have and to take advantage of the opportunities that are presented to us. Nicholas has an unwavering ambition to succeed to the best of his abilities and this dedication to fulfill his potential is an ongoing source of inspiration to all who have the privilege of knowing him.

Nicholas has multiple disabilities. He was born with cerebral palsy which means that he must face every day with pain that is exhausting and unrelenting. Joint dislocations caused by his bones growing faster than his muscles cause agonizing spastic pains. He has very limited use of his limbs. He also has great difficulty speaking. He can articulate some words and with the use of an amazing technological device, the Dynavox, he can communicate by utilizing a set of head switches. Nicholas also has cortical visual impairment, seizure disorder, abnormal tone difficulties, nutritional difficulties and developmental delays. He has a specialized wheelchair and his own change room where a plinth and a power lift are located. It is important for Nicholas to be moved from his wheelchair to the plinth so that he can stretch out his limbs. He has a full-time educational assistant, Mr. Nash, as well as a registered nurse, Mrs. McDonald, who provide needed assistance each day. His educational team further includes: speech-language pathologists, occupational therapists, a physiotherapist and an itinerant teacher of the visually impaired. Nicholas' difficulties and the assistance needed to meet these difficulties are noted as realities of Nicholas' day each and every day. It may seem that given the extent of Nicholas' challenges that it would be impossible for him to demonstrate academic perseverance. The fact that Nicholas demonstrates formidable academic perseverance on an ongoing basis is the marvel that led to this nomination.

Nicholas' official placement as noted on his Individual Education Plan is “Regular Class with Resource Support and Monitoring” which means that Nicholas is fully integrated into regular classes. He has a timetable and courses in keeping with other students his age. He attends classes, participates in discussions, studies, does homework, completes assignments and takes tests. He follows modified programs in his courses and he works extremely diligently to meet the expectations of these modifications. He is an exceptional auditory learner and he has a fantastic memory. Most importantly, he is actively engaged in his learning and keen to gain as much as he can from his classes. In cooking class, Nicholas became the chief food sampler and actively participated in cooking labs. In religion, he painstakingly put together an oral presentation which was loaded onto his Dynavox and delivered in front of his class. It took a great deal of courage for Nicholas to make this presentation as he is naturally shy, but he rose to the occasion and received many accolades. In drama class, Nicholas overcame nervousness to rehearse, don a costume, watch for cues and play a role in a dramatic performance. He loves literature and is a natural in English class. His English teacher indicated that a poetry poster assignment surpassed expectations and was used as a model for others to follow.

Examples of high achievement and academic perseverance could easily be made for Nicholas in all of his classes. It is important to note that Nicholas not only seeks to achieve in his regularly assigned classes, but he is an active participant in extra-curricular activities. He has written sports reviews of Notre Dame's athletic teams for our newsletters and he has made submissions to our yearbook. He is able to access a word processor by using a cable that is attached to his Dynavox. This system allows him to express his views quite well but he must be very patient as the process is very labour-intensive.

Nicholas is a well-rounded young man with many interests. Anyone who meets Nicholas will quickly learn that he is an avid sports fan. His three favourite sports are wrestling, hockey and soccer. He is a great supporter of Notre Dame's sports teams and regularly attends home games. He also enjoys watching intramurals. He is fiercely competitive and fiercely loyal.

The descriptor provided by the “Spirit of the Capital Awards” states that a student who is being considered under the category of academic perseverance must be “excelling in school and expressing genuine interest in both helping others and overcoming odds.” Nicholas excels in his classes. On report cards, teachers note his unfailing positive attitude, his great efforts to put forth his best work, his wonderful sense of humour and his willingness to express his opinions honestly and sometimes forcefully. He certainly helps others. Students learn from Nicholas; his solid determination to succeed allows others to realize that there are no excuses not to try one's best. Nicholas motivates others. He has never returned to school with unfinished homework which is a record that many of his peers can only admire. He models best practices at all times as his class work always reflects effort and thought.

In terms of overcoming odds, not enough can be written to adequately express the degree to which Nicholas has overcome and continues to overcome odds. Mr. Nash has worked extremely closely with Nicholas as his Educational Assistant and he expresses awe in the fact that although Nicholas has faced so much adversity in his young life, he radiates good cheer. He meets every daily strain with incredible fortitude and resilience. Unbelievably, his morale never seems to falter and he goes into every class with the brightest of smiles. A person cannot help but feel better when around Nicholas. Mr. Nash observes that Nicholas “is so full of life, everyone who takes time to get to know him can be nothing but enamored with him.”

Nicholas' nurse notes that not only does he overcome daily physical handicaps but he also handles the normal personal adjustments experienced by any sixteen-year-old young man. She says that in her view, he is not a patient; he is a teenager who has hopes and dreams and who is working hard to realize them.

Nicholas Wright is the physical embodiment of perseverance and it can be argued that this perseverance stems from personal courage. Nicholas' physical conditions undeniably take a toll on his body and can sap him of energy. Nonetheless, he finds reasons each day to laugh. His school year is not without interruptions. At times he has needed to be hospitalized due to medical complications, but his awesome willpower to fight for health is partially based upon his desire to return to school. If academic perseverance implies a firmness of mind in face of extreme difficulty, then Nicholas has a mind of steel.

Two very close friends are Alex and Sam Allard. Alex is in grade nine and Sam is in grade seven. These brothers have developed a close bond with Nicholas and they spend many lunch hours and after-school hours with him. Alex and Sam describe Nick as their “big buddy” who is funny, easy to get along with and very talented. Alex states that in his opinion Nick has “the courage of a lion and the energy of a monkey.” The brothers are hopeful that Nicholas will be chosen for this award because “it would make his day and he would smile and that smile will light up the world.”