Flat Rock Summer

Time slips away and months go by. I did not get done what I had planned. It was a summer of children moving, traveling, and a host of other family distractions.

When I was growing up our parents were not so involved in our lives, even when we were very young. Children went out to play, and were called home for meals and homework by mothers on front porches throughout the neighborhood. The group of neighbourhood mothers always seemed to know where we were, and what we were doing, as we found out if we stepped a toe out of line, the news reaching the relevant parent with lightening speed, and certain punishment. Today parents have complex, busy lives, revolving around their children: with daycare, after school programs, piano, dance, gymnastics, hockey, soccer, scheduled play dates. Parents are involved in all aspects of their children's lives. My own mother would often shake her head, as I loaded the kids into the van, and zoomed off to another activity, or to pick up or drop off my children and their friends. She sometimes would say she didn't know how I did it. She really did admire her modern daughters, but there was an implied questioning, and in my ears, criticism, of why we did all these things? Were times really so different? Did the world demand such vigilance? I heard these silent questions, and I was always annoyed at how she did not seem to understand.

It has only been very recently that my mother has shared some parts of her past. In my mind's eye I see four small girls from long ago. In the early 1930s in Montreal, children swam in the river from "Flat Rock" in Lasalle. It was a long walk from Verdun, miles and miles. Much of it was on dirt tracks, after the paved part of Bannantyne Road ended. Most hot summer days, my mother and her friend, both just six, and her older sister and her friend, age ten, would set off to Flat Rock for the day, alone. They walked, their wax paper packet of tomato sandwiches made, packed and carefully carried by the big girls. My grandmother cleaned offices at night. She needed to sleep during the day. My grandfather had been killed in an industrial accident two years before. Limited insurance depleted, and no social assistance in existence, my grandmother worked. My mother's two year old sister played quietly by the bed, or napped in her crib. The other two girls were expected to play outside, the older sister in charge.

So on hot summer days, with the lure of a cooling swim, they walked. My mother does not remember the walk to the swimming spot well. The swimming and splashing with friends, and the taste of the warm, soggy, but delicious tomato sandwiches, are vivid for her, as is the walk home. I visualize the tired little legs going slower and slower, as they trailed through the fields, lunch a distant memory, her big sister's admonishments to hurry ringing in her ears. I feel the joy and relief they must have felt, on the few occasions when the girls were allowed to catch a lift part of the way, with the milkman or bread man. The delivery men would take the opportunity to allow their horses to gallop on the dirt trails, as a break from their steady, slow clomp through their rounds. Sometimes they would allow the girls to hop on the side steps of the delivery wagons, and take them on a splendid ride, closer to home. But this was a rare treat, and I imagine how long it would take such little girls to walk so far summer day after summer day, alone.

So I shake my head, and say I do not know how you did it Mom. I hope you are not annoyed that I don't seem to understand.

On Language Facilitation

I was with two friends the other day, both speech-language pathologists, both with young families. I was catching up on news and photos of the little ones. It gives me enormous pleasure to hear of their antics, especially what they say. My friend was relating a story about another of our friends, also a speech-language pathologist. On a recent visit, her son had become a little fractious, so she had produced a toy from her private practice equipment for him to explore. Without missing a beat, his mother started to narrate what he was doing with short, repetitive, intonated phrases. She was irresistible to the toddler; he imitated, commented, and shared her excitement. At one point she looked up and said, “Sorry. I can’t help myself!”

I smiled. We speech-language pathologists, when we become mothers, become instant zealous converts to the wonders of language facilitation techniques. We learn these things in our classes and practice in our clinical placements. Many of us work with young children when we graduate, and these techniques, this knowledge, becomes the focus of our treatment. We believe it. It is best-practice, and the evidence is overwhelming. But I don’t think anything prepares you for the power of these techniques like using them yourself, daily, with your own children. It is also humbling to realize how difficult it can be to remember to give your child time to respond, to talk about what you and they are doing, to repeat, to get down to your child’s level, and to revel in communication as it develops. We are busy. Life is fast. We do not even realize we have negotiated most of the day in silence, except for instructions and reprimands. Language facilitation though has lasting benefits, embarrassing and useful.

When my eldest daughter was three, we were stuck in a huge line at the fruit and vegetable store. The baby was fussing and I was jiggling the stroller to calm her and trying not to drop the items I had balanced on top of the stroller canopy. My three year old wandered just out of reach to the huge barrels of nuts near the cash. I looked over to see her up to her elbows in the nuts. She was enjoying the clicking, crashing noises as she picked up armloads of nuts and let them slide through her fingers. The busy cashier was throwing me filthy looks. Everyone was staring. I tried a hissing whisper. The little imp heard me very well, but ignored me completely. The baby was fixing to howl. I jiggled the stroller harder. With a contortionist’s reach, I grabbed the three year olds’ hood and yanked her away from the nuts, anchoring her to the counter in front of me with my knee. I was furious. She, however, was unperturbed and unrepentant. As I was paying, she hauled her chin up over the counter by standing on her tiptoes. She announced, loudly, and with perfect clarity, “Mummy, how does it make you feel when I don’t listen? I like the nuts!” As some people grinned, the cashier still scowled, and the baby howled, we made our escape. I regretted even encouraging her to talk at that moment.

Yet I observed this same daughter, years later, working at summer language camp, effortlessly imitating, recasting, redirecting and supporting the communication of the language delayed four year olds in her charge. She said to me, partly accusingly, “You did all these things to us for years and years!” I admit it freely, but consider it one of the gifts I was able to give my children. I know it is not always easy, not always immediately rewarding, but worth it? Without a doubt.

Hearing vs. Listening

She sat quietly, hands folded in her lap, watching. The conversation was lively and fast. The occasion: a visit to a cherished grand-daughter's new apartment, following a celebration restaurant dinner with two of her daughters and grand-daughter. Everything had been seen and admired, house warming gifts received, flowers carefully put in water and prominently placed on the piano. Dinner had been lovely; the restaurant not too loud early in the evening. Now there was some catching up to be done; what the various cousins were doing, summer plans, family gossip.

It was nice to be there, but at 80-and-a-bit it had already been a long outing. She said, "I'm not hearing all you're saying!" The daughters heard, and for a few minutes directed the conversation to their mother. They had heard this many times before. It often meant, they knew, "I don't understand." Talk of emails, Facebook postings, computers, travel plans swirled around her, confusing in their unfamiliarity. But some of this talk was expected, the daughters reasoned. Not often did they see each other and surely topics could include things not everyone was interested in? The daughters and the grand-daughter were so careful to help: guiding her on stairs, bringing groceries, calling, visiting, making sure she knew she was loved.

She couldn't hear all that was being said. And she wanted to, even if she didn't understand. She was interested, She was as sharp as ever. She was not content to let the tide of conversation wash over her with no discernible form. Her eyes started to water. She felt alone, isolated. The conversation faltered as the tears, hastily brushed away, were noticed. "I couldn't hear you." she said. "I was trying so hard to be a part of it all, but I couldn't hear you enough. I think I am just tired" Everyone was immediately contrite, apologies were made, goodbyes, hugs and congratulations passed around and the evening was over.

The daughters were kind, solicitous, careful as they tucked her into the car for the ride home. Next time, they suggested, please say, "I can't hear you well, I need to see your faces." She nodded, embarrassed. The elderly woman had picked a comfortable chair arranged around the coffee table with the others. But she was not seated where she could see everyone's faces as they talked. The light cast shadows on the faces she viewed from an angle. Had she been sitting facing the sofa, the light behind her on the other side, she could have heard more words, felt more involved. That small modification and perhaps slightly louder voices, more careful speech, could have made the difference.

These environmental modifications and communication oriented strategies are part of our treatment plans. In some cases, these are the only things we can change for our patients. Small things can have powerful impacts on communication and also social-emotional well-being. But they are not always easy to put into effect, with all the best intentions, care and love a family has. We clinicians need to be patient and understanding. We need to provide patients and families with as much explanation, repetition, modeling and support, for all strategies or techniques we provide, as they need. There is no room for judgment. No timetable for mastery.

I, of all people, should have known better. I didn't. I'm sorry Mom.

Learning Disability?

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.

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.

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.

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.