The Four Walls of My Freedom

by Donna Thomson

  About this time, another mum at Hornsey told me that her daughter was having speech therapy at a place called the Cheyne Centre. More and more hallway chat seemed focused on a miracle worker called Helen Cockerill who used a technique called Special Time to get non-verbal children talking.

  I managed to get an appointment at Cheyne and we arrived at the appointed hour in front of a Victorian brick building that faced the river Thames. Looking up, I groaned at the number of steps leading up to the entrance doors. “It’s a listed historical building,” the receptionist apologized. “The heritage department won’t let us install a ramp.” Like every other parent coming to the Cheyne Centre, I carried Nicholas’ wheelchair up the stairs, then returned to the car, scooped Nicholas up in my arms and ferried him to the lobby. A young woman in jeans and a blonde ponytail greeted us with a broad smile and a friendly Yorkshire accent. “Hello, chicken,” she said to Nicholas, “I’m Helen.” She led us downstairs to a basement warren of peeling hallways until we reached a door decorated with picture symbols resembling hieroglyphics. The small room was filled with toys, and Nicholas arched his back and kicked out his legs, as if pumping his knees would make the play come faster. Helen sat cross-legged on the floor with Nicholas looking out from the crook in her legs. I left the wheelchair in the hallway as Helen began speaking directly to Nick. “Your playtime here is called Special Time, Nick. I will help you, but we will play as if I am not really here. You will tell me what you would like to play with and I will help you. I will count you down to start. Ten…nine…eight…” The room silent now, Nicholas began to slowly look around. His eyes lit on a Lego train set. Helen said quietly, “You are looking at the train set, we’ll go play with it. The train goes Choo! Choo!” Nicholas smiled. “You’re smiling, you want more.” As I watched Helen and Nicholas in a bubble of intense listening pleasure, I thought how wonderful, how seductive and how rare it is to have such complete attention of another person. No wonder Nicholas was smiling!

  Later, when we got home, I plopped Nick down into the armchair in our family room and flicked on the television while I tidied up the toys and dishes that we had abandoned on the floor earlier that day. “Ahhh,” said Nick. “What?” I asked, not bothering to look at him. “Ahhh,” he repeated, now looking at the lamp on the table beside him. “What — you want me to turn on the light?”

  “Ahhh.” I turned on the lamp and returned to scraping some crumbs off the carpet. “Ahhh,” said Nicholas again, looking hard at the lamp. “What, you want me to turn OFF the light?”

  “Ahhh!” said Nick, giggling now. “Ahhh! Ahhh!” Light on! Light off!

  I telephoned Jim at the office and cried, “Nicholas is talking! He told me to turn the light on and then to turn it off!” I was laughing, I was so happy.

  When I think of this experience in the context of the Capability Approach, a couple of personal truths are revealed. When we arrived in London, I had been clear and unequivocal on the central capability of independent physical function for Nicholas. He was a toddler and action is a toddler’s modus operandi. The fact that he did not achieve the goals that I set for him offered me an early lesson in humility where parenting is concerned. But it was also a lesson in understanding the Capability Approach. Perhaps independent physical function wasn’t so central to a life Nick valued after all. Would Nicholas have experienced a communication breakthrough if he hadn’t been to Conductive Education boot camp where self-reliance was the imperative? Probably not.

  But our experience of throwing out old truths and finding new pathways for growth was made possible by choices that could be considered mistakes. The fact that the Hornsey Centre staff valued functional goals for Nicholas over and above the integrated goals of “Nick in our family” turned out to be harmful to me as a mother. The wellbeing of children and their parents is so deeply interconnected that usually parents cannot separate the two. Certainly, I couldn’t. In the case of children with disabilities, this extreme closeness lasts much, much longer into adulthood. When a mother experiences a quality of love that is desperate and feels hopelessly inadequate at times to meet her child’s needs, her sense of wellbeing is very poor. I used to wonder why, in aid poster images of African mothers holding their starving babies, these mothers were never looking at their offspring. When I felt that I was failing Nicholas, I averted my eyes from him too. Systems in place to assist children with disabilities must examine their programs through the lens of family. Parent supports, or lack of them, must take into account their rebound effect on children.

  The fact that Hornsey staff measured success by standards other than Nicholas’ own personal bests could have been harmful to Nick. But Nick has always been a resilient and positive person. His response to angst-ridden teachers was to fall off his bench laughing, so that he found himself often banished to the hallway, still chuckling. I sized up our situation and saw that Nicholas had learned to be an actor in his own life. He hadn’t learned to play with a toy by himself, but he had learned to initiate, to imagine and to be more fully human. After Conductive Education, a report with “smiles a lot” would never be in the cards again. And certainly, the independent spirit combined with the early communication skills Nick gained in these early years of life made belonging and social ease much easier for him later on.

  After two years at the Hornsey Centre, I decided to put Nicholas back into a regular neighbourhood school setting in London. I knew about a school in nearby Hampstead that had already admitted a young boy with disabilities similar to Nick’s. An elevator had been installed in the building, and the boy’s mum told me she’d managed to secure a range of supports. I filed an application for Nicholas and proceeded to wait for a reply. A letter finally arrived. I ripped it open, only to find the familiar words: “We are sure that Nicholas’ significant needs could be much better met elsewhere.” I tried to reason and then plead with the head teacher, but to no avail. I was angry and desperately worried about our future without a plan. I hadn’t counted on being turned away. Carol Greenaway, our educational psychologist and kind co-strategist, came with me to visit a couple of special schools on offer. In the parking lot after the visit, we looked at each other over the car roof and shook our heads simultaneously. When we were informed by the teachers that parents were not welcome to make unannounced visits to their children at school, we knew these places were out of the question for Nicholas. “God knows what they get away with!” Carol exclaimed and I couldn’t have agreed more.

  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 experie
nces 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 overcam
e 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.