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.

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.

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.