Some experiences set events in motion in ways totally unexpected. I did not think babysitting as a 13 year old would shape my future so directly. The Hayes family lived across the street. They had two children,lively 18 month old Amanda, and 8 year old Jason. I particularly loved working for the Hayes. Both parents were English teachers. They had a whole room lined floor to ceiling with bookshelves. After the children were in bed, I was allowed to choose anything I wanted from the shelves and read until my eyes were itchy. Also, the family sailed and I often went out sailing the Great Lakes or Georgian Bay with them to help crew, but also prevent the children from drowning themselves in their enthusiasm to be part of all and any action. Jason was very active and full of fun. He easily learned how to sail, tie knots and eagerly listened to any story I was willing to make up. Jason could build anything and was constantly at war with little Amanda who wanted to knock down his elaborate constructions. But Jason did not have many friends and did not roam with the noisy pack of little boys who raced through the neighbourhood. This was so different from the confident sailor and eager collaborator for adventures planned within his family. Still, I thought Jason was a typical, well-adjusted second grader.
One day I arrived to look after the children just as Jason arrived home from school with a face like a thundercloud. He flung his school bag on the floor, shouted rudely at his mother, and pushed Amanda down on his way to his room. The door slammed. Mrs. Hayes was on the verge of reprimanding her son, when she saw a crumpled paper amongst the contents of Jason's school bag, which were spread over the kitchen floor where they had landed. "Oh no" she said, and bent to retrieve it. She spread the paper out on the table. It was Jason's report card. His marks were represented in the form of a graph, where the class averages were in blue, grades above the average in green, and those below, in red. An angry red line slashed across Jason's report. For a moment Mrs. Hayes looked defeated, but then she looked very angry indeed.
I suppose because I was there comforting Amanda, Mrs. Hayes decided to explain to me. She told me that Jason had a learning disability. He was having difficulty learning the same way as the other children, although he was just as smart. Reading was particularly hard for him. He had few successes at school. Mrs. Hayes had become an expert on learning disabilities. She was an advocate for Jason in a school system which, at the time, had little interest in students with special needs of any kind. She had specifically asked the school to mail Jason's report card to her. She knew that all the children would open their envelopes in the school yard and compare marks. She had wanted to spare her already fragile son that indignity. My 13 year old self had a glimpse of the frustration, pain and loss a mother could feel. This was clearly an educated, loving family who immersed their children in words, books and learning. I thought that children who did not do well in elementary school were either not stimulated at home or perhaps just "slow".
I had never heard the term "learning disability". My high school was populated by the typical groups: the jocks, acid-heads, "shop" boys, smart kids, cheerleaders, "bad" kids. We all desperately tried to fit in somewhere. The "dumb" kids were always persecuted. We never stopped too think about why any of our peers did poorly at school, except to conclude that it was "lack of application", as our parents and teachers told us, or lack of ability, to be pitied.
That year I learned a lot from Mrs. Hayes. I read my first journal article. I did essays for school on learning disabilities, the brain and intelligence. I became interested in special education. That was the year too that my friends and I started to dream about what we might become. I thought maybe a teacher, or a special education teacher. But it did not seem quite right for me. The more I learned about learning disabilities and other special needs a common theme seemed to emerge, language. I started then to think about language. What did it mean to not be able to understand or express yourself with ease? How did we learn to speak? The concepts were difficult for me to grasp. I found out there was actually a profession that was all about language, a speech pathologist! From that time on the die was cast for me. I wanted to be a speech pathologist.
I lost touch with the Hayes when I left home to go to university. I often wonder how things turned out for Jason. Well, I like to think. You never anticipate what can profoundly shape your life. Thank you Jason.
Tuesday, November 3, 2009
Monday, October 12, 2009
We Need to do Better
I was visiting the long term care facility to evaluate a patient. He was aphasic after suffering a stroke and was to come to the outpatient rehabilitation facility where I worked for ongoing treatment. As I walked into the day treatment centre, I was stopped by a woman in a wheelchair smiling broadly. I recognized Margaret, a woman I had treated the previous year.
I was pleased to see her looking well and happy. Margaret squeezed my hand and produced a stream of unintelligible jargon while looking at me expectantly. Realizing I did not understand, she shrugged her shoulders. I looked around for her husband Peter, who had always been nearby to translate when Margaret’s communication failed. I didn’t see him, so I asked “Where’s Peter?” Margaret’s eyes filled with tears. She shook her head, touched her throat, and banged her hand on her chair. I understood immediately.
Margaret and Peter were hard-working immigrants who were the caretakers for an apartment building. They worked side- by- side daily. They kept to themselves. Margaret had suffered a massive stroke which had left her with global aphasia and a dense right hemi paresis. Her language skills had been decimated. When she tried to speak it was generally rapid, fluent gibberish which came out. She was very frustrated. Her husband Peter was always there. He seemed to know what Margaret was trying to say and would participate in every session. They were in perfect synchrony. Peter would provide words for Margaret, but it was clear who was providing the content! Through facial expression, gestures, and a whole series of accompanying noises, Margaret confirmed or rejected Peter’s words until her meaning was conveyed to her satisfaction. Slowly Margaret gained in confidence and made adjustments to her altered circumstances.
As that winter progressed, I began to notice that Margaret was not looking as well-groomed as she normally did. Peter, a small wiry man, was even thinner than before and had developed a chronic cough. I urged Peter to see a doctor about his cough. Margaret nodded her head vigorously, gestured to Peter’s ever-present cigarette package in his shirt pocket, and made a strong, loud noise. They had obviously had this discussion about Peter’s smoking and his seeing a doctor before. Peter was annoyed, and muttered about it not being the right time, glaring significantly at his wife. Time passed, but Peter’s cough did not. I was very concerned and asked the social worker to pop in to see if she could help with some respite care for Margaret so Peter could be treated. Reluctantly, Peter and Margaret agreed.
There was a reason Peter and Margaret kept to themselves and did not socialize. Their life revolved around helping their adult son who was a diagnosed paranoid schizophrenic. Sometimes he did not take his medication. He became paranoid, unpredictable and abusive. The little family had closed ranks, to deal with their lot in life, in isolation and silence. That was just the way it was, no choices. We found out that lately Peter had been settling Margaret into the car in the parking garage with a thermos of coffee, quilts, and a flashlight, while he did his rounds. He was afraid to leave her in the apartment with their son. Respite was arranged for Margaret and Peter finally received treatment for what was discovered to be laryngeal cancer.
Margaret came for therapy from her respite home by herself a few times. Without Peter, I wondered how well she would communicate. When so much is lost it is amazing how the human will to connect survives. With no usable speech at all, Margaret told me her son had been getting much worse. He often disappeared for days. He sometimes tied pillows around his body, under his clothes, and carried a kitchen knife around, sure that he would be attacked on the street. She wanted him hospitalized, but with the recent changes in mental health care, the emphasis was on community and family. Margaret made a disgusted sound. Now Peter was ill, she was in care and her son was on the streets.
I did not see Margaret again until our chance meeting. She was telling me Peter had died. I expressed my sympathy. Margaret told me her son had not been seen since Peter died. He was still sick and, she feared, alone. She gripped my hand hard, and stared emphatically. Just then some of her friends called her to join the group. It was obvious that she was well-liked and cared for. Margaret turned to go, giving me a last, hard look. I was happy for her but I agreed with her, we have to do better.
I was pleased to see her looking well and happy. Margaret squeezed my hand and produced a stream of unintelligible jargon while looking at me expectantly. Realizing I did not understand, she shrugged her shoulders. I looked around for her husband Peter, who had always been nearby to translate when Margaret’s communication failed. I didn’t see him, so I asked “Where’s Peter?” Margaret’s eyes filled with tears. She shook her head, touched her throat, and banged her hand on her chair. I understood immediately.
Margaret and Peter were hard-working immigrants who were the caretakers for an apartment building. They worked side- by- side daily. They kept to themselves. Margaret had suffered a massive stroke which had left her with global aphasia and a dense right hemi paresis. Her language skills had been decimated. When she tried to speak it was generally rapid, fluent gibberish which came out. She was very frustrated. Her husband Peter was always there. He seemed to know what Margaret was trying to say and would participate in every session. They were in perfect synchrony. Peter would provide words for Margaret, but it was clear who was providing the content! Through facial expression, gestures, and a whole series of accompanying noises, Margaret confirmed or rejected Peter’s words until her meaning was conveyed to her satisfaction. Slowly Margaret gained in confidence and made adjustments to her altered circumstances.
As that winter progressed, I began to notice that Margaret was not looking as well-groomed as she normally did. Peter, a small wiry man, was even thinner than before and had developed a chronic cough. I urged Peter to see a doctor about his cough. Margaret nodded her head vigorously, gestured to Peter’s ever-present cigarette package in his shirt pocket, and made a strong, loud noise. They had obviously had this discussion about Peter’s smoking and his seeing a doctor before. Peter was annoyed, and muttered about it not being the right time, glaring significantly at his wife. Time passed, but Peter’s cough did not. I was very concerned and asked the social worker to pop in to see if she could help with some respite care for Margaret so Peter could be treated. Reluctantly, Peter and Margaret agreed.
There was a reason Peter and Margaret kept to themselves and did not socialize. Their life revolved around helping their adult son who was a diagnosed paranoid schizophrenic. Sometimes he did not take his medication. He became paranoid, unpredictable and abusive. The little family had closed ranks, to deal with their lot in life, in isolation and silence. That was just the way it was, no choices. We found out that lately Peter had been settling Margaret into the car in the parking garage with a thermos of coffee, quilts, and a flashlight, while he did his rounds. He was afraid to leave her in the apartment with their son. Respite was arranged for Margaret and Peter finally received treatment for what was discovered to be laryngeal cancer.
Margaret came for therapy from her respite home by herself a few times. Without Peter, I wondered how well she would communicate. When so much is lost it is amazing how the human will to connect survives. With no usable speech at all, Margaret told me her son had been getting much worse. He often disappeared for days. He sometimes tied pillows around his body, under his clothes, and carried a kitchen knife around, sure that he would be attacked on the street. She wanted him hospitalized, but with the recent changes in mental health care, the emphasis was on community and family. Margaret made a disgusted sound. Now Peter was ill, she was in care and her son was on the streets.
I did not see Margaret again until our chance meeting. She was telling me Peter had died. I expressed my sympathy. Margaret told me her son had not been seen since Peter died. He was still sick and, she feared, alone. She gripped my hand hard, and stared emphatically. Just then some of her friends called her to join the group. It was obvious that she was well-liked and cared for. Margaret turned to go, giving me a last, hard look. I was happy for her but I agreed with her, we have to do better.
Tuesday, October 6, 2009
Stephen
Whenever I see rhododendrons I smile and remember Stephen. Stephen was a fair, red-headed, freckled seven year old. He was full of mischief and fiercely independent. Stephen had cerebral palsy. His speech was limited and very unclear and this had secured him a place in the language class. When he arrived that first day he came with his parents. Stephen launched himself into the classroom, promptly tripping over his toes, but saved from falling by his ever-vigilant mother. His father looked up at us and said, with typical Yorkshire understated style, “Lad’s a bit unsteady on his pins.”
It very quickly became apparent that Stephen’s unsteadiness did not present any obstacles in his mind. He wanted to do everything by himself. We anxiously weighed every decision, to give Stephen as much independence as possible, while hovering unobtrusively trying to prevent skinned knees, or worse.
Stephen missed no opportunity to test the limits, giving us heart-stopping moments, and resulting in frequent “time-outs” for Stephen. Stephen particularly hated the feeding therapy he needed at lunch time. He would have much preferred to eat quickly and messily and go to play, rather than learn to bite, chew, and swallow with care. It became a race. Stephen would attempt to bolt into the lunchroom unsupervised, grab a tray, and rush on wobbly, giraffe legs around the room shouting , “I don’t like this dinner!” hoping to dump it into the rubbish bin before we caught up. He often succeeded or ended up in a tangle of legs, tray and dinner. It was an exercise in frustration for all of us. Finally relative peace was negotiated when it was agreed Stephen start lunch thirty minutes before the bell so feeding therapy did not interfere with Stephen’s independent lunch activities.
Another point of contention was the bathroom. Stephen wanted to stand at the urinal like the big boys. The shiny, five foot high porcelain wall was an irresistible lure. However, the coordination and stability required was beyond him at that time. The potential for injury was high, and this was reinforced almost daily by Stephen’s mother’s reminders in his communication book to “accompany Stephen in the bathroom at all times!” We were careful and it appeared, in this at least, that Stephen had accepted the limits. When it seemed like he could go in with the other children, use the stall, and emerge unharmed, we relaxed and let him go alone. After a while we noticed that Stephen’s hair at the front was always wet after a trip to the bathroom. We asked him why he was wetting his hair ? Stephen looked at us innocently and said, “I’m not.” Wanting to get to the bottom of this mystery, we peeked around the corner after Stephen disappeared into the bathroom one lunch time. There was Stephen, standing feet wide-spread at the urinal. He was intent on accomplishing his goal. To steady himself he carefully braced his forehead on the porcelain wall of the urinal in front of him. With a look of satisfaction, he completed his task. What he had not taken into his calculations, was the automatic flush time of the urinal. There was not quite enough time to remove his forehead before the water came. Undaunted, Stephen washed and dried his hands and patted his head with the paper towel before emerging. We didn’t say a word, sure that eventually Stephen would learn to move more quickly.
The year progressed with many battles and bumps. Finally it was the final field trip and picnic of the year. Stephen had not actually been allowed to go on any field trips with the class that year. His mother just felt they presented too many dangers. But on this last trip, she relented, after many assurances that proper precautions would be taken and, I am sure, a constant barrage from Stephen. We were going to a “stately” home and rhododendron garden nearby. The mansion was on top of the hill and the gardens flowed down the hill, a path wound down through the gardens to the picnic area and playground at the bottom. The entire hillside was covered with rhododendron trees of every colour possible. When we arrived the flowers were in late full bloom, the entire hillside was a blaze of colours, and many petals had fallen, making the path a colourful carpet as well. Stephen quickly wriggled away from the partner he had been assigned, and took off, running wildly down the petal-covered path. It looked like his speed plus the steepness of the path were going to combine to cause a serious accident. We were just about to take chase when Stephen skidded to a stop, bent down and scooped up an armload of petals. He turned to us, his face shining, and said, “Miss, look what I made!” and we smiled.
Rhododendrons make me think of Stephen, and smile.
It very quickly became apparent that Stephen’s unsteadiness did not present any obstacles in his mind. He wanted to do everything by himself. We anxiously weighed every decision, to give Stephen as much independence as possible, while hovering unobtrusively trying to prevent skinned knees, or worse.
Stephen missed no opportunity to test the limits, giving us heart-stopping moments, and resulting in frequent “time-outs” for Stephen. Stephen particularly hated the feeding therapy he needed at lunch time. He would have much preferred to eat quickly and messily and go to play, rather than learn to bite, chew, and swallow with care. It became a race. Stephen would attempt to bolt into the lunchroom unsupervised, grab a tray, and rush on wobbly, giraffe legs around the room shouting , “I don’t like this dinner!” hoping to dump it into the rubbish bin before we caught up. He often succeeded or ended up in a tangle of legs, tray and dinner. It was an exercise in frustration for all of us. Finally relative peace was negotiated when it was agreed Stephen start lunch thirty minutes before the bell so feeding therapy did not interfere with Stephen’s independent lunch activities.
Another point of contention was the bathroom. Stephen wanted to stand at the urinal like the big boys. The shiny, five foot high porcelain wall was an irresistible lure. However, the coordination and stability required was beyond him at that time. The potential for injury was high, and this was reinforced almost daily by Stephen’s mother’s reminders in his communication book to “accompany Stephen in the bathroom at all times!” We were careful and it appeared, in this at least, that Stephen had accepted the limits. When it seemed like he could go in with the other children, use the stall, and emerge unharmed, we relaxed and let him go alone. After a while we noticed that Stephen’s hair at the front was always wet after a trip to the bathroom. We asked him why he was wetting his hair ? Stephen looked at us innocently and said, “I’m not.” Wanting to get to the bottom of this mystery, we peeked around the corner after Stephen disappeared into the bathroom one lunch time. There was Stephen, standing feet wide-spread at the urinal. He was intent on accomplishing his goal. To steady himself he carefully braced his forehead on the porcelain wall of the urinal in front of him. With a look of satisfaction, he completed his task. What he had not taken into his calculations, was the automatic flush time of the urinal. There was not quite enough time to remove his forehead before the water came. Undaunted, Stephen washed and dried his hands and patted his head with the paper towel before emerging. We didn’t say a word, sure that eventually Stephen would learn to move more quickly.
The year progressed with many battles and bumps. Finally it was the final field trip and picnic of the year. Stephen had not actually been allowed to go on any field trips with the class that year. His mother just felt they presented too many dangers. But on this last trip, she relented, after many assurances that proper precautions would be taken and, I am sure, a constant barrage from Stephen. We were going to a “stately” home and rhododendron garden nearby. The mansion was on top of the hill and the gardens flowed down the hill, a path wound down through the gardens to the picnic area and playground at the bottom. The entire hillside was covered with rhododendron trees of every colour possible. When we arrived the flowers were in late full bloom, the entire hillside was a blaze of colours, and many petals had fallen, making the path a colourful carpet as well. Stephen quickly wriggled away from the partner he had been assigned, and took off, running wildly down the petal-covered path. It looked like his speed plus the steepness of the path were going to combine to cause a serious accident. We were just about to take chase when Stephen skidded to a stop, bent down and scooped up an armload of petals. He turned to us, his face shining, and said, “Miss, look what I made!” and we smiled.
Rhododendrons make me think of Stephen, and smile.
Friday, September 25, 2009
Helen
Helen was a pleasant woman in her 40s who had been admitted to the neurological ward for tests. I was a diversion in an otherwise long day. I arrived with my bag of language tests and started setting up to begin.
That year I was working as a research assistant. My supervisor would arrange with fellow physicians to ask patients if they wanted to participate in a research study about language understanding. I was to obtain patient consent and conduct the tests. The research was interesting and working with the patients rewarding. There was plenty of time to chat and the patients seemed to enjoy the experience.
Helen was younger than most of the subjects I had seen thus far. She told me she was from a small town and had two teenage children. As we worked we exchanged details about our lives. I noticed an abnormal twisting movement in her hands and a slight tremor in her voice. I asked whether a family member had travelled to the city with her. She paused and told me she had come on her own. I expressed that it must be hard to be alone at such a stressful time. Quietly Helen said, “It is better to be alone right now. Everyone at home says I’m crazy. Maybe they’re right.”
Helen told me that for the past three years she had been depressed and anxious. This had coincided with her separation from her husband. It wasn’t friendly. She had started having trouble with her voice and experiencing “mood swings”. She was called hysterical and prescribed antidepressants. Everything was attributed to Helen’s difficulty dealing with her family problems. Her children were spending most of their time with their father. They didn’t know how to help their mother,, and found her sudden bouts of irritability or sadness disturbing. She could not reach any agreements with her husband and divorce seemed inevitable. Whatever self confidence Helen had was being slowly eroded. She told me she had trailed from doctor to doctor, certain there had to be a solution, certain what she was experiencing had a physical cause. Helen described herself as a normally cheerful, confident person until this illness had started. None of the local doctors seemed to have anything to offer her. Uncertainty began to grow in her own mind, maybe they were right. Maybe she was crazy. She then started to have some trouble walking. She would lurch unpredictably. “You can imagine what people in a small town said about that!” said Helen with some humour. Finally she was referred for tests. Helen said, “One way or another I will know later today, then I’m going home to see my kids.” We finished the testing and I said I would stop by to say goodbye tomorrow before she left for home.
The next morning I saw Helen in her street clothes getting ready to leave. She was radiant. “Did you have good news?” I asked. “The best”, Helen replied, “I’m not crazy!” She continued, “It turns out I have Huntington’s Disease. It explains everything for the past three years. I knew I was right.” I was silent. I did not know what to say in the face of such a devastating diagnosis. Helen didn’t notice my reaction. She told me that the doctor had explained everything and she knew it was going to be really hard but for now she was just so relieved. She said that doubting her own knowledge about herself was the worst thing imaginable. Now she would go forward, renew her relationship with her children, and deal with her illness. Helen smiled and left.
When you work with adults you sometimes get to share some important and private moments. You hope you can listen well, offer acceptance, help. What to say, how, when is not always clear. Often our patients end up being our teachers. I still remember Helen.
That year I was working as a research assistant. My supervisor would arrange with fellow physicians to ask patients if they wanted to participate in a research study about language understanding. I was to obtain patient consent and conduct the tests. The research was interesting and working with the patients rewarding. There was plenty of time to chat and the patients seemed to enjoy the experience.
Helen was younger than most of the subjects I had seen thus far. She told me she was from a small town and had two teenage children. As we worked we exchanged details about our lives. I noticed an abnormal twisting movement in her hands and a slight tremor in her voice. I asked whether a family member had travelled to the city with her. She paused and told me she had come on her own. I expressed that it must be hard to be alone at such a stressful time. Quietly Helen said, “It is better to be alone right now. Everyone at home says I’m crazy. Maybe they’re right.”
Helen told me that for the past three years she had been depressed and anxious. This had coincided with her separation from her husband. It wasn’t friendly. She had started having trouble with her voice and experiencing “mood swings”. She was called hysterical and prescribed antidepressants. Everything was attributed to Helen’s difficulty dealing with her family problems. Her children were spending most of their time with their father. They didn’t know how to help their mother,, and found her sudden bouts of irritability or sadness disturbing. She could not reach any agreements with her husband and divorce seemed inevitable. Whatever self confidence Helen had was being slowly eroded. She told me she had trailed from doctor to doctor, certain there had to be a solution, certain what she was experiencing had a physical cause. Helen described herself as a normally cheerful, confident person until this illness had started. None of the local doctors seemed to have anything to offer her. Uncertainty began to grow in her own mind, maybe they were right. Maybe she was crazy. She then started to have some trouble walking. She would lurch unpredictably. “You can imagine what people in a small town said about that!” said Helen with some humour. Finally she was referred for tests. Helen said, “One way or another I will know later today, then I’m going home to see my kids.” We finished the testing and I said I would stop by to say goodbye tomorrow before she left for home.
The next morning I saw Helen in her street clothes getting ready to leave. She was radiant. “Did you have good news?” I asked. “The best”, Helen replied, “I’m not crazy!” She continued, “It turns out I have Huntington’s Disease. It explains everything for the past three years. I knew I was right.” I was silent. I did not know what to say in the face of such a devastating diagnosis. Helen didn’t notice my reaction. She told me that the doctor had explained everything and she knew it was going to be really hard but for now she was just so relieved. She said that doubting her own knowledge about herself was the worst thing imaginable. Now she would go forward, renew her relationship with her children, and deal with her illness. Helen smiled and left.
When you work with adults you sometimes get to share some important and private moments. You hope you can listen well, offer acceptance, help. What to say, how, when is not always clear. Often our patients end up being our teachers. I still remember Helen.
Monday, September 14, 2009
Rudolph
Six year old Jaime was raging. I could hear the screaming and crying as I came down the hall towards our classroom. It was lunchtime. Most of the students were out in the playground but Jaime had obviously been kept in, not an uncommon occurrence. Jaime had a hard time both accurately understanding what was said to him and using good sentences when speaking. It was faster sometimes to respond with his fists than to struggle to explain himself. The frustration was never very far away. I wondered what had happened this time?
I could also hear the calm murmurs of Donna, the teacher. Donna and I shared this classroom in an Ontario public school where we were responsible for nine severely language impaired students. Donna was a master teacher. Students blossomed under her care. She was particularly skilled when it came to helping children accept responsibility for their own behaviour and make better choices for themselves. I was learning so much from her about avoiding confrontation and fostering collaboration.
I entered the classroom quietly. I was surprised to see Jonathan, normally a quiet, cheerful student, standing across the room casting angry looks in Jaime’s direction. Jaime himself was standing in front of the Christmas mural the class had been busy creating. Santa, his sleigh and eight reindeer, headed proudly by Rudolph, had been flying across the front bulletin board. But Rudolph was no longer leading Santa’s sleigh. Jaime was standing at the front of the room. His little chest was heaving. His face was red and tear-streaked. Rudolph was in tatters on the floor. It was no mystery about who was responsible. Jaime himself was covered in red paint and large chunks of torn reindeer were clutched in his hands. Donna was calmly saying, “Jaime, you need to use your words. You need to tell me why you tore up Jonathan’s Rudolph. You were supposed to paint it.” This provoked a fresh torrent of tears and shrieks. “Use your words,” said Donna again. Jaime struggled to begin. “Him him say no, no, no.” shouted Jaime pointing accusingly at Jonathan. “Jonathan said ‘no’?” enquired Donna. Jaime took a deep breath and tried again. “Him say no, no good. It good! Me do it good!” Jaime insisted. “Did Jonathan say he did not like how you painted Rudolph?” guessed Donna. “ Yes”, said Jaime, with some relief. “But me do it right! It really, really good, and him say bad.” Jaime reported sadly. “O.K. Jaime. I understand you are angry, but you need to say ‘sorry’ to Jonathan for tearing his drawing.” Donna said firmly. Turning to Jonathan she said, “Jonathan, Jaime did his best and I am sure his painting was nice too. You need to say you are sorry to Jaime for saying his painting was not good.” Jonathan glared mutinously across the room and said hotly, “But he ruined my Rudolph! He painted him red all over.” Jaime’s voice rose once again as righteous indignation coloured his face, “Yeah! Me paint like the song say, ‘Rudolph-the-red-reindeer’!”
Donna and I quickly composed our faces as we realized the simple comprehension error which had led to Jaime’s current predicament. Apologies were made. Jaime and the ruined reindeer were cleaned up, and the boys went out to play. The mural was repaired and this year the Rudolph leading Santa’s sleigh did not just sport a red nose but was a beautiful red all over.
I could also hear the calm murmurs of Donna, the teacher. Donna and I shared this classroom in an Ontario public school where we were responsible for nine severely language impaired students. Donna was a master teacher. Students blossomed under her care. She was particularly skilled when it came to helping children accept responsibility for their own behaviour and make better choices for themselves. I was learning so much from her about avoiding confrontation and fostering collaboration.
I entered the classroom quietly. I was surprised to see Jonathan, normally a quiet, cheerful student, standing across the room casting angry looks in Jaime’s direction. Jaime himself was standing in front of the Christmas mural the class had been busy creating. Santa, his sleigh and eight reindeer, headed proudly by Rudolph, had been flying across the front bulletin board. But Rudolph was no longer leading Santa’s sleigh. Jaime was standing at the front of the room. His little chest was heaving. His face was red and tear-streaked. Rudolph was in tatters on the floor. It was no mystery about who was responsible. Jaime himself was covered in red paint and large chunks of torn reindeer were clutched in his hands. Donna was calmly saying, “Jaime, you need to use your words. You need to tell me why you tore up Jonathan’s Rudolph. You were supposed to paint it.” This provoked a fresh torrent of tears and shrieks. “Use your words,” said Donna again. Jaime struggled to begin. “Him him say no, no, no.” shouted Jaime pointing accusingly at Jonathan. “Jonathan said ‘no’?” enquired Donna. Jaime took a deep breath and tried again. “Him say no, no good. It good! Me do it good!” Jaime insisted. “Did Jonathan say he did not like how you painted Rudolph?” guessed Donna. “ Yes”, said Jaime, with some relief. “But me do it right! It really, really good, and him say bad.” Jaime reported sadly. “O.K. Jaime. I understand you are angry, but you need to say ‘sorry’ to Jonathan for tearing his drawing.” Donna said firmly. Turning to Jonathan she said, “Jonathan, Jaime did his best and I am sure his painting was nice too. You need to say you are sorry to Jaime for saying his painting was not good.” Jonathan glared mutinously across the room and said hotly, “But he ruined my Rudolph! He painted him red all over.” Jaime’s voice rose once again as righteous indignation coloured his face, “Yeah! Me paint like the song say, ‘Rudolph-the-red-reindeer’!”
Donna and I quickly composed our faces as we realized the simple comprehension error which had led to Jaime’s current predicament. Apologies were made. Jaime and the ruined reindeer were cleaned up, and the boys went out to play. The mural was repaired and this year the Rudolph leading Santa’s sleigh did not just sport a red nose but was a beautiful red all over.
Saturday, September 12, 2009
The Patient Boy
“It alright miss. I be fine”, almost 8 year old Kenny reassured me. Wasn’t this the wrong way around? I should be reassuring him. But this was typical of this remarkable boy. It was 1978, and it was my second year working as a speech therapist in a city in the north of England. I had been given a wonderful opportunity that year. The health authority I was working for was opening a language class in a local school. This was a self-contained, special class for children diagnosed with, “developmental dysphasia”, as we called specific language-based learning disabilities then. I was to be the full-time speech therapist working with two special education class teachers. I was so excited. I could treat the students every day. I could be involved in their classroom. Surely I could make a real difference?
The first day of school I met Kenny. I was struck by the quiet patience with which he moved around the classroom and found his seat amid the noise, some tears, and cheerful chaos that marks the beginning of the school year. Silently he nodded during attendance, put up his hand to point at the date on the calendar during circle time, and quietly lined up at the door when the teacher announced recess.
As the students ran into the playground, Barbara, Kenny’s teacher , announced, “He was supposed to go to residential school for dysphasic children this year you know. His parents don’t want to send him away from home, so they wanted to try this class first, but if he does not talk this year, then he has to go.” I had not yet seen the students’ school records so I was surprised that a non-verbal child was admitted to the language class. I blurted out, “”You mean he does not speak at all?” Barbara explained that she had been told that Kenny struggled to start his words, only tried a few words and even those words were really difficult to understand for anyone who did not know him well. So he tended not to try to talk much. However, she went on to explain that in many other ways he showed that he understood what was going on, was beginning to read and the psychologist had determined Kenny’s intellectual skills were “at least within the average range.” I couldn’t wait to get started.
Kenny cheerfully came into the treatment room with me. I turned on the tape recorder, ready to figure out Kenny’s speech problem, and asked Kenny his name. He looked at me sweetly and shook his head. I asked him how many brothers and sisters he had. Kenny held up three fingers. I asked him where he lived. Making sure I was watching, he walked over to the window, pointed down the street and waved his arm to tell me it was many streets away then he made a car noise, the first sound I had heard from him, mimed driving and so told me he came on the bus. He then sat down, waiting for me to continue, satisfied with our conversation thus far. I turned off the tape recorder.
This started a journey for both Kenny and me. I was pretty sure Kenny had what was then known as “developmental verbal apraxia”, where he just did not know how to organize and sequence speech movements. But I had never seen a child with apraxia. What I knew about apraxia was what I had learned about apraxia acquired by adults after a brain injury. I searched for resources I might use, but I was still faced with what could I do to help Kenny now? He couldn’t wait for me to feel prepared. Kenny and I explored what sounds he could make. He was amazingly tolerant as I asked him to repeat, move his jaw this way, stuck tongue depressors in his mouth to show him where to put his tongue, grabbed his face to try to support his movements. We sat side by side in front of a mirror practising; Kenny copying my movements as we said words over and over again. Kenny always tried, never whined or complained, repeated as many times as he was asked and patiently waited while I hesitated, changed ideas and tried to modify activities as we went along. We all chose words together: Kenny, his family, his teachers and me. There were lists at home, in the classroom and in the “speech” room. Kenny and I made up a set of hand gestures to help him remember certain challenging sounds. We were making up therapy as we went along. I was often unsure, and worried, as I frantically tried to find information, and speak to other therapists to guide me. I felt unprepared to treat a child who had such a severe speech problem. But there was no one else and Kenny’s faith in what we were doing together never wavered and I was humbled by his endless patience. We were all delighted as Kenny slowly found his voice and used his words.
In the spring of that school year, the application for admittance to the residential school arrived for Kenny again. It was decided that I would travel down with Kenny’s family to visit the school and report on his progress. It was a beautiful setting: Cozy dormitories, lovely classrooms, devoted and skilled teachers and therapists. But the children seemed so young to be away from home. Kenny held on tightly to his mother’s hand. Kenny attended a class that day and saw the team of therapists and educators. I was so proud of him as he answered questions and tried everything. The headmistress of the school told us they were all very impressed with Kenny’s progress that year. I held my breath. They went on to say they really felt they could help Kenny and he could start in September. Kenny must have seen my face. He patted my arm and smiled, “it alright miss. I be fine.” And he was. He had found his voice.
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