Going Home

The young man in my office struggled to explain, "I wait, wait, wait. Then Papa. And like this." He clasped his hands together, a look of great joy on his face, to show me how happy he had been to see his father. He continued, "We come here. And me this". He gestured to the healing sutures covered with soft downy hair over his ear. "Now, God. Me. Better," he explained, gesturing towards his crucifix.

It was a story worthy of a miracle. The young man was in his mid twenties. He had developed a sudden aphasia accompanied by an intense headache, and eventually loss of consciousness. He was discovered to have an arterial venous malformation, a tangle of blood vessels in the brain. He probably had been born with it and had never known. It was bleeding into his brain, causing the aphasia. An emergency surgery had saved his life. But there was a problem. There was another malformation. The surgeons wanted to remove that one also, before it ruptured. The young man politely refused. When he was discharged from the hospital he was referred to out-patient rehabilitation, including speech therapy.

He had a significant expressive aphasia with severe anomia, the ability to retrieve words. There had been improvement. It was early days, so prognosis was positive.
Our first session, he told me he was going to go home to find his brother, so would not be attending therapy long. I was dismayed. He wasn't recovered from surgery. He needed another surgery. Could he not delay his trip?

He shook his head and told me his story. He was from a troubled Central American country. As rebels were rounding up older boys and men to serve as soldiers in the bloody civil war, his father and he set out on foot to escape. His mother and brother stayed behind. Somehow he and his father became separated in Mexico City. What followed was a testament to perseverance and faith. Every day he scoured the poorest parts of the city trying to find his father. He waited outside various factories at shift changes, watching workers' faces, searching. It was not clear to me how long this went on or how he survived. He was only a teenager then. He told me he had been sick during his search, pointing to his head, indicating pain. He told me he almost gave up. One thing he was sure about, God saved him. And then when he was ready to give up, God helped him find his father.
So now he was sure God would provide again. He told me his mother had died. His younger brother was with his aunt. He needed to get him and bring him to Canada. He had no doubts.

This is definitely the hardest part of the evidence-based therapy model to both understand and accept. We know, in theory, that the client's perspective accounts for an equal slice of the pie to our clinical judgment and the available evidence. But in practice, it is much harder to see the client's perspective as an equal partner. Is it not our job, our responsibility, to educate and convince? When clinicians are trying out their fledgling wings of clinical experience, thus relying heavily on available evidence, this seems especially true. It is hard to remember and appreciate the client's vital role in the success of treatment. I think as experienced clinicians we are often very good at "hearing" our clients, and supporting their participation in their own treatment. But how good are we at communicating those skills to our younger colleagues?

My sister is a gifted educator. She recently reminded me that long-established models of change and motivational interviewing strategies must be taught. How vital this information and opportunity to practice it is for students and young clinicians. In speech-language pathology we need to do a better job at ensuring this knowledge, these skills, are handed down to the next generation. When a client is not ready to consider, or begin to plan for change, it is not our job to press on presenting evidence and offering our clinical expertise. It is our job to let the client know that if and when they might be ready, we will be able to offer support. And we must do that without judgment.

For my client, I was probably one of the few people, given his current communication skills, who could listen to his story. I am not sure how well I understood. Our communication was largely single words, short phrases and gestures. I was not sure how good his English was. But I was sure of his decision to refuse treatment, and his great faith. I wanted to argue, to insist, to make him accept treatment. I wanted to say we knew what was best. But what he needed was to tell his story, know he could come back when he was ready, and then leave.

I watched him walk away. It was hard.

Hawaii

I am in Hawaii and it is gorgeous. The ocean, cliffs, trees, the breeze and nearly constant sunshine. I have been here a few times. My husband has been many times. He assures me that it is the perfect place to hold scientific meetings, where some participants are from Asia and many from the western U.S. And if it turns out that some golf can occur, well all the better! We certainly appreciate the break from our drab and cold late fall or frigid winter. The people here are unfailingly pleasant. They are obviously proud of their state and share their enthusiasm for the sights and history.

Maybe because I have some mobility restrictions myself, I have taken many guided tours of historical landmarks, botanical gardens, read books on Hawaiian history, and just talked to people more than the average tourist. I know Hawaii has some significant challenges. The local industries of pineapple, sugar cane and coffee are now negligible in the state's economy, having departed to places with cheaper labour and greater yields. Retaining their youth to live and work here is difficult. Tourism has exploded. While providing a new economic base, plus jobs and many career paths, both in tourism and services supporting tourism, a tourist economy it is not without cost. Everything is expensive here. I am told land costs and housing are alarmingly beyond the reach of many. Hawaii has the highest incidence of diet related diabetes in the nation. And then there are the drugs. Crystal meth is a huge concern. I am also told a new rash of heroin use is on the rise. Heroin mixed with rat poison and drain cleaner.

I do not want to imply that Hawaii is not worth visiting. To tourists these problems are largely invisible. Hawaii needs its tourists and works hard to attract them. Facilities are superb. Staff is plentiful, courteous, and enthusiastic. The roads are excellent and small towns have that unhurried sense of time standing still. Hawaii feels safe and welcoming.

Yesterday my friend and I went on a road trip. We ended up at a small, locally owned hotel with a wonderful terrace. The hotel has a large beach area, part of a mile long stretch of public beach. I sat and watched the beach while my friend went for a walk. Mostly families and tourists enjoyed the lovely beach. But I noticed the restless youth with slightly unfocused gazes. Some were in small groups, but others just standing alone. One young woman turned brown as a nut, painfully thin, in filthy shorts and a bikini top, twitching slightly, obviously high but trying to function, trying to not attract attention, but standing out in stark contrast to other slim, healthy young women sprawled in the sand and enjoying the surf.

I have young adult daughters, and as a parent experience anxiety that influences or circumstance or poor choices could always conspire to place my daughters in danger. I feel no superiority that we are somehow immune. I am only grateful for my three healthy, whole daughters and desperately sorry for this lost child.

We watched a beautiful sunset, the sushi was amazing and the local staff friendly and chatty. Hawaii is beautiful, and overall the feeling here seems to be hopeful for the future, which will undoubtedly be shaped by tourism. I will certainly come again if I can.

I want to tell that young girl that in the midst of this paradise, she was seen and it mattered.

School Board Therapy

It was a good thing I was sitting down. My knees were vibrating. My stomach was in knots. I was hoping my voice wouldn’t shake too. I wasn’t the focus, although it did not feel like that to me. It was supposed to be a “pre-hearing”, whatever that was. Nothing to worry about, the lawyer said. But it was in a law office. There were lots of people in suits. It was scary.

The two parents were sitting tight-faced on one side of the table, flanked by their lawyers. We were on the other side, myself, the school principal, a school board official, and school board lawyer. We were there because the parents were contesting the school’s decision to not offer their son weekly speech therapy in school.

I was a public school speech-language pathologist. I was assigned ten schools, eight elementary schools and two high schools. Most of my schools had at least one dedicated special education class, in those days before integration. I traveled around to my schools weekly. The caseload was impossible. In this particular school, in this particular class, I was helping the classroom teacher to incorporate the students’ various language goals into the daily curriculum. A couple of students were receiving some very limited, short, individual therapy sessions. The parents of the student in question wanted individual therapy for their son. Their son had a diagnosed speech and language disorder. He was “coded” to receive special education services. Didn’t that mean all required services, the parents reasoned?

The parents’ lawyer asked me whether, in my professional opinion, wasn’t it a better use of my time to provide services to his clients’ son, who was “less handicapped” than a more severely impaired classmate , who might not benefit as much? There were a lot of questions about test scores, percentiles and age levels, as if these indicators were the only and absolute factors to decide who was helped, and who wasn’t. I was horrified. I tried to explain the complexities of clinical decision-making. The lawyer persisted in asking for “yes” or “no”. I remember the school-board lawyer taking over the discussion. There was a lot of talk about individual education plans, classroom support and consultation. At the end, no one went away happy.

Were the parents justified in their legal challenge? I understood why they felt compelled to do it. It wasn’t personal. For me it underlined the urgency in our profession for research in treatment efficacy, outcome measurements and the need for research to reflect more clearly the complexities of making functional changes for clients with communication challenges. Research had to reflect that clinically, “normal” is not just a number. It also made an indelible impression on my professional life. It is sometimes hard, faced with clinical realities, to think of research as having anything to do with the real world of daily practice. The need to continue to read, study, and struggle to apply research to practice was thrown into sharp focus that day. Fast forward twenty five years.

We know a lot more about communication, development, the brain. Educational practices evolve. Evidence-based best-practice principles are pervasive as we train the next generation of health care and educational professionals. Creativity is key. With delight, I see changing service delivery models, development of “ecologically valid” rubrics for assessment and outcome data, use of standardized assessment tempered with client input, real world possibilities factored in. We know more about what works, what is ideal for certain communication challenges. But life is rarely ideal.

In recent years at A.S.H.A convention, I attended a seminar on language sample analysis. I usually attend anything the Wisconsin group do, though I realize S.A.L.T. database research is not to everyone’s taste. Usually the small room is not over full. This time the room was packed. Afterwards there was a line of people wanting to ask the presenters questions. One young woman had a fistful of papers, obviously a language sample, she wanted help with. She began by saying that her student had increased his MLU and some of the other measures had improved, but how was she going to make him perform within one standard deviation of the mean? The room echoed with others asking the same question. The presenter said the group will always look at anyone’s transcript, but really just to check the coding and make sure the programme was able to do the analysis accurately. The purpose of the database project was not meant to be such a definitive indicator of all “normal” in expressive language. The young woman turned to leave and we walked out of the room together. She was almost in tears. I observed that her student seemed to have improved. She said yes, but the parents were challenging her “numbers” on the transcript analysis, and saying she wasn’t doing her job, because their son’s “numbers” weren’t “normal” yet. A formal complaint to her employer had been made. I asked whether her employer was supporting her in presenting the whole clinical picture, not just a number? She laughed and said it was all about the number, the score, the percentage.

When I hear stories like this I wonder, what have we done in twenty five years? What this young clinician was obligated to do was not evidence-based best-practice. If we want to attract young clinicians to school based work and retain them, there’s still work to be done. I’m just saying….

Five Years

It’s been five years. I was at work that day. I had just finished seeing a client. I was putting away toys and thinking about what I needed for the next child coming after lunch. My colleague stopped in the doorway. She asked, “Don’t you have a daughter at Dawson? Is she at school today?” Her voice sounded funny. I looked up. She continued, “There’s something going on at Dawson. My friend texted me that there’s shooting.” The world slowed down. I reached to the back of a shelf where we kept the CD-radio we used for summer camp. I couldn’t understand why it would not plug in, until I saw my hand was shaking. My office filled with my colleagues.

We listened. It was excited, fractured, dramatic reporting. There was one gunman, or several gunmen. There was shooting with automatic weapons outside and inside the college. Students were laying on the pavement shot or running for safety. There may be gunmen in the metro. I remember calling my daughter. First the phone rang, but then the calls would not go through. We didn’t know they had closed down cell phone transmission around Dawson. I called and called. It seemed to take forever. Finally she answered, her voice high and breaking. She was on Sherbrooke Street across from Dawson. She did not have her bag, her books, her bus pass. My normally self-possessed daughter just kept saying, “What should I do, what should I do?” I was on the way out the door to find her somehow. She said her friend’s father had arrived and she would come to my office. She held it together until she saw me. We both cried and held on to each other. She said, “Mom, I was so scared.”

She had been in one of her art studio courses that morning one floor down and a few doors from the cafeteria where the shooting ended. Her instructor usually gave them a break right around noon. It was late today. When they got their break she and a few of her friends stayed in the classroom working while the others went for coffee . Suddenly a few more students rocketed into the classroom saying someone was shooting. They could then hear gunshots. They hid behind some equipment trying to be still, trying to be quiet. They could hear footsteps in their corridor and the doors of neighbouring classrooms being opened and slammed shut. They wondered if someone with a gun would find them and shoot them. When the door to their classroom opened they were paralyzed by fear. It was security checking and locking classrooms. A police officer led them from the classroom to the safe corridor they had established on the street outside. They were told to take nothing, be quiet, and run.

It was a difficult time. My daughter was alternately angry, sad, fearful, and outraged. As information started to flow the questions came. How could this happen? Where did he get so many automatic weapons? How could his family and friends not know he was going to do this? And why did he do this? I had no answers for her. She was outraged by endless media interviews of students speaking of their relationship to the student who died. She said, “But they didn’t know her!” or “They weren’t at school that day.” Somehow she felt that student’s privacy was being invaded. A memorial of flowers and tokens of remembrance grew along the college fence. A few days later my daughter asked if it would be right if she put flowers at the site. She knew who the young woman was, but she had never spoken to her. I tried to say it was good to show respect. This horror happened to all of them and radiated out beyond the college, the city or even the country. She needed to grieve for Anastasia, for the students who were injured, and for herself.

I drove her and her friend to Atwater market. They bought their flowers. They wanted to go by themselves so I drove them to Dawson. I watched them walk down the street clutching their flowers and each other. It broke my heart.

I don’t remember the gunman’s name. I think I refuse to remember his name. I do remember Anastasia’s name. That is as it should be.

Anniversary

Alan and I have been married thirty-five years this week. Being married to Alan is as natural, and essential, to me as breathing. We will likely go out to dinner and vie for supremacy in the ongoing really soppy or really tasteless greeting card contest waged over many years. We do not always exchange anniversary gifts. It depends upon whether one of us has a great idea. Alan is most definitely better at finding those truly unique and thoughtful gifts.

About ten years ago though I had a wonderful plan. My husband loves music, all sorts of music. His tastes are eclectic and his knowledge vast. He particularly loves a good guitarist. He mentioned in passing that Colin James would be playing in Montreal that year. I secretly schemed to get tickets for him. I went online to buy the tickets. This was the first time I had ever purchased anything online. I went to events in Montreal, clicked on Colin James, clicked on the date, got a whole page of events, saw the title “Millencolin” and clicked “buy”. I figured, given that it was the first year of the new millennium, that was the name of Colin James’ concert tour. Remember please those who are rolling their eyes, in my defence, I thought I was still on Colin James’ website.

The tickets in hand, we headed to the Metropolis on concert night, leaving our second daughter babysitting our youngest. We know this great Montreal concert venue, so we arrived very early and went up to the balcony. Our seats were terrific. Below us on stage the drum had a skull and crossbones on it. We wondered who could be opening for Colin James? Perhaps he was trying to appeal to a younger crowd? As the place started to fill up, I realized that no one around us seemed to be much over sixteen. Lots of black shirts, spiked hair, piercings and safety pins. The kids looked a lot like one of our daughters. We thought Colin James appealed to a much broader age group. Perhaps the older fans were downstairs? Now the place was packed. Fog carpeted the stage as the dry ice was set free. A skinny kid bounced onto the stage and shouted “Are you ready Montreal!” The crowd roared, the opening band raced to their places, and started. It was the worst, loudest, heavy metal, make- your- ears- bleed , music I had ever heard. The kids were on their feet. The area in front of the stage was a seething pit of kids jumping in the air waving their fists. Muscular men in t-shirts marked “security” were circulating trying to keep kids from hanging dangerously over the balcony. My husband, lover of all music that he is, was stoically trying to wait it out. I began to think something was terribly wrong. I said, “Just stay here a minute, I am going to check something out.” I pushed my way downstairs.

Kids were still streaming through the front doors. Management had made a narrow passage between the ticket booth and a large security guard so they could ensure everyone had a ticket. I went up to the security guard and gently tapped him on the shoulder. I said, “Excuse me. I hate to bother you, but this isn’t Colin James, is it?” To my eternal gratitude, the young man did not laugh out loud. He composed his face and replied, “Uh no, this is Millencolin a Swedish heavy metal punk band.” I blushed and stammered and tried to explain that I had made a mistake. They must have felt sorry for me. The security guard offered to go upstairs to get Alan. The ticket- taker leaned over and said helpfully, “Don’t worry. We wondered when you arrived, but then we thought you must be the band’s parents!” I didn’t know whether to laugh or cry. Soon Alan came downstairs; the security guard seemed to have no trouble finding him in the crowd. We thanked the staff, and still blushing I headed for the door. But there was to be no fast escape from my humiliation that night. The Metropolis staff stopped us, and with great courtesy, gave us our money back.

On the way back to the car, I apologized profusely to my husband for the disappointment and the failed gift. My highly amused husband replied, “Are you kidding? This was the best gift ever! You NEVER screw up. I ALWAYS screw up. I am going to get mileage out of this for years!” His grin stretched ear to ear. I said testily, “Oh, well, that’s alright then. But you don’t have to be so damned pleased with yourself!” He chuckled all the way home.

Our daughter was very surprised to see us so early. She asked us what happened. Alan replied, “Ask your mother.” Throwing him a dirty look, I said defensively, “It wasn’t Colin James. How was I supposed to know Millencolin was a group? It COULD have been the name of Colin James’ concert tour!” My daughter dissolved into helpless laughter. Snorting hoots of, “Mom, you are sooooo lame!” followed me all the way upstairs as I withdrew, trying to preserve some of my much tattered dignity. My husband and daughter howled with laughter as he recounted, for the first time, the entire story.

The story is now a treasured part of family history and has been told to many an appreciative audience. I don’t mind. These stories, where everyone in turn gets to play a starring role, are part of the glue holding marriage and family together, the more embarrassing, the better. It turned out to be the perfect gift.

The next summer, Colin James came to the jazz festival. I managed to get the right tickets this time.

Happy Anniversary love.

Mam

I have been thinking about role models lately. My almost 18 year old is a camp counselor this summer. Her little 7 to 9 year old charges absolutely adore her. I hear her say things in a confident self-evident way such as, “You know if you give one a strawberry, they all need exactly the same thing, or such drama!” I lightly said, “So, do you feel sympathy for me yet?” She looked at me wryly and said, “Not yet.” But she knew what I meant. She has two older sisters, and is well acquainted with the sibling lament, “It’s not fair!”

It is so interesting to watch your own children reflect the world as they understand it, and have the heady experience of influencing others. You realize their role models are many and diverse. Like most women of my generation, I wanted my girls to be exposed to what I saw as strong women role models. In my mother’s generation, many women did not work outside of the home. They did not have much education, and rarely “careers”. My generation rejected these traditional roles so vehemently, revolution did indeed result. In our estimation, these women could not be role models for our daughters. But in our march towards change, I think we missed something important.

I spoke to my mother- in- law in Wales today. We call her Mam. She stands barely five foot tall and seems unchanged in the thirty- five plus years I have known her. She turns eighty nine soon, though you would not believe it. She comes from a generation and a time that seems so old fashioned that I imagine scenes from a Henry James novel.

When she was two, her mother died from septicemia. She had scraped her arm on a rusty nail in the outhouse at the bottom of the garden. In those days before penicillin, she became ill and died quickly. My mother- in- law remembers very little about her. She recalls the sound, starched smell and whiteness of her floor length apron, worn over her every day dresses, as she did her daily chores. The tickle of those skirts on Mam's toddler cheek as she played on the landing is a single abiding memory. She and her three older brothers were left in the care of their dock- worker father. He did his best, but was ill-prepared to take on the housekeeping and mothering role at a time when household responsibilities and provider roles were strictly assigned. After a few years of unsatisfactory housekeepers, the family decided to do without that support, and Mam started to take on the role her family situation had decided for her. At six she was standing on a chair mixing vegetables into the night's supper stew before she went to school. They all helped, but she was the girl, so she would look after the house and the boys, of course.

This destiny may have been set, and Mam did her duty, but there was nothing weak and docile about it. Mam remembers with great indignation how the schoolmaster used to dismiss her from the discussion about jobs the students might have. He would say, "Not Jean of course, as she'll be needed at home!" She would stamp her foot in defiance. And the time she totally over rode her practical and thrifty father when he went to buy her sensible laced boots. She would have those desired patent leather shoes, just this once. There was a brief respite from housework when women were recruited to the war effort, but she was soon married, her first son on his way. She cared for her father for the rest of his life, while bringing up four sons, with her husband, in her mother's small house. She lives there still.
When I first met Mam, this quiet spoken, little Welsh woman who seemed to be constantly in motion, serving the many men in her life, I was ready to be outraged. After all, I was Canadian. I had grown up with two sisters. I was part of the women’s liberation generation. I tensed every time Mam popped up from her dinner to run and get something for one of the boys. I glared if my husband watched sport with his father and brothers as Mam and I did the dishes.

But slowly I learned to understand the complex story I was witnessing. Mam was the main character. The family revolved around her. There was respect, humour and great love. It was never discussed, it was just understood. Mam loved her husband for sixty years. She brought up four good men. She did what needed to be done, with no regrets, quiet grace and great strength. The example is not in the roles filled, but how the life is lived.

Recently she was debating the merits of having knee replacement surgery; her arthritis of the knee has slowed her down. She told us, "They only last ten years, and you cannot kneel you know. " We asked her why she needed to kneel. She retorted, "Well how will I wash the kitchen floor then?" A modern woman’s role model? Absolutely.

But I Need to Hit Him!

But I need to hit him!
I swear I turned my head for just a second. Michael launched himself across the game board we were using at Nick. The board, pieces, cards went flying. I caught Michael mid leap, holding him securely. He struggled wildly saying, "But I NEED to hit him!". Nick repeated over and over, at higher and higher volume, "It's four spaces for red!". Krista wandered over to check out the window blinds while Jackie retrieved and lined up the scattered game pieces.

Michael was more "traditionally" language impaired; short sentences, poor grammar, disorganized explanations and descriptions, thus not often communicatively successful with his grade one peers. The other group members had reasonably good sentences and grammar, and excellent vocabularies. Social language skills were harder. Knowing when to talk, what to say, sharing attention and looking and generally letting others know they were engaged and participating. The group had been a good experience. The students were learning to wait, listen, look, initiate, take turns. Sometimes they needed a lot of support to set them up for success; reminders to look, adjustments of body posture, models of what to say. In this group, Nick was the "rule policeman". It was important to him that the correct number of spaces were moved, the order of turns exact, and the timing of the game, according to his internal timetable, be respected. He was constantly "helping" the others move their pieces and telling them what to do. We were working on helping Nick think about why his friends did not like this and modeling different strategies. Michael's sense of fair play was particularly affronted by Nick's interference. Today Michael, in his excitement to play, had taken Krista's turn. She did not notice. As I turned to her to guide her to notice, indicate, and tell her friends appropriately, our "rule policeman" sprang into action. He took Michael's piece off the board, and substituted Krista's red piece. But he did this silently, not looking at Michael, not saying "Hey, it's Krista's turn!" It was too much for Michael. Chaos.

In terms of social interaction and reaction, Michael was appropriate. In terms of game rules, Nick was correct. But in terms of social language comprehension and expression, what a mess.

Social language group therapy is challenging. Even in a small, highly structured therapy group, there are so many factors contributing to the smooth, natural looking social experiences we take for granted. For our social language impaired students, nothing can be taken for granted. In school and at home they are often told what to do, but these instructions may be only superficially understood. "Wait your turn"' , "It's not your job to tell the rules"', "Look at me when I am talking to you!". They struggle to comply, but often do not remember. After all, the pieces are not in the right order, he didn't move the right number of spaces, and who should I look at again? So confusing.

Is it possible to break down these subtle, fluid social skills, teach them, then build social language competence? I believe it is, but it does require constant examination of your perceptions of social success and failure, and a willingness to try and try again. Michelle Garcia Winner has it right I think, when she puts such emphasis on perspective taking. Your social success depends upon being able to appreciate and react to others' perceptions of your behavior, and your understanding of their motivations and thus behavior. This is true for all of us. Imagine if your brain just does not make those connections by itself? The speech language pathologist has a responsibility to address social language impairment as vigorously as sentence structure and grammar impairments. It is as crucial to communicative competence.

But was it wise to mix the social language impaired students and the expressive language impaired students in the same therapy group? Maybe not, in this case. It was also not wise to conduct this group without support, a therapy assistant makes for more effective treatment. Things you learn through experience.

It is encouraging to see more clinicians taking up the social language challenge. Evidence based treatment means integrating the client's perceptions and needs into the treatment plan, along with the best evidence and our best clinical judgment. This therapy is difficult, the concepts slippery, the implementation a definite work-in-progress! But the field demands our effort, and the children deserve it.
Michael didn't hit Nick. Play resumed. Everyone went home happy. I needed a cup of tea.