Crisis Turned Into Case Study, Over Christmas

by Helene Louise  

This past holiday season, in and around the usual activities like trimming the tree, cooking for my family and wrapping presents, I did something I’d never done before — I spent a considerable amount of time developing a case study to be used as a learning activity in a university classroom.

Further to my presentation at McGill University’s School of Physical and Occupational Therapy last year, I was asked if I could help develop a case study or “Professional Reasoning Seminar” that could be integrated as a learning activity along with my presentation. I thought it was such a wonderful idea to develop a scenario whereby students would read a clinical write up of a case involving a young girl recently diagnosed with a pediatric stroke, then read the parent’s perspective of the situation as I’ve described it in my book, and then, hear me talk about the themes in my book in a way that I think is most relevant and empowering to young people who will soon be joining the workforce.

In terms of the writing process in this case, initially I found it terribly difficult to look back through my old files to revisit the specific challenges we faced when my daughter was first diagnosed and write about it in a very clinical way, without the themes of hope and perseverance that I’ve derived from our experience since then.

But, as the hours went by and I saw the case study taking shape on my computer screen, knowing what I know now, how much hope and potential there was even when I couldn’t see it, my discomfort slowly turned into a quiet sense of triumph — that fifteen years later we have come so far and I’ve somehow found the strength to turn what was such a difficult period in my life into something that has the potential to make things better for other families in the future.

This week, I had the privilege of speaking to a new group of students and afterwards, the opportunity to watch and answer questions as they worked in groups to develop strategies and solutions for the young patient in question. To some, it may seem strange that I would spend part of my Christmas holiday working on turning what was a personal period of crisis so many years ago into a case study. But, having the opportunity to start the new year seeing my efforts used so constructively was a gift indeed...!


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Bilingual Adapted Protractor Instructions

by Helene Louise  

In September, I shared how we adapted a protractor to help my daughter better succeed in math class (Teamwork for Back-to-School Success). Given the interest there has been in this document, I’ve updated it to be bilingual - English and French. Here it is...

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En septembre, j’ai partagé comment nous avons adapté un rapporteur afin d’aider ma fille à mieux réussir dans son cours de mathématiques (Teamwork for Back-to-School Success). Étant donné l’intérêt que ce document a suscité, je l’ai mis à jour en le rendant bilingue - anglais et français. Le voilà...

adapted protractor en-fr.pdf


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Visit to Marianopolis College

by Helene Louise  

Today I was very grateful to have the opportunity to make a presentation to a group of students at Marianopolis College, one of Quebec’s top pre-university colleges here in Montreal. In comparison to my presentation at McGill’s School of Physical and Occupational Therapy earlier this year, the group of students today was much younger and much more diverse in the sense that they have not yet chosen an area of specialization. I wondered what I might talk about given that focusing on the challenges of navigating the rehabilitation network in this case was unlikely to be of any interest or relevance to them.

In the end, I decided to focus on the importance of staying open to the possibility that something good might happen even when faced with well-informed expert opinions to the contrary and a mountain of seemingly insurmountable challenges. I talked about how when my daughter was first diagnosed, I was also told that she would likely never walk and that there was nothing I could do about it. But, that by working with her and encouraging her just the same, she eventually did learn to walk, to the point that now, she is free to imagine her life full of activities as it might otherwise have been, with minor adaptations as required.

At the end of the presentation, a student came up to me and said that the story of my daughter and me as I had just told it, was the story of her and her mother. And, just like me, when she was a baby, her mother had been told that she would likely never walk. But, just like me, her mother had worked with her and encouraged her just the same and there she was, so many years later, having just walked across the classroom to come and talk to me. The similarities in our experiences were incredible, right down to the fact that her mother had spent an entire summer helping her learn to ride a bike, just as I have done with my daughter, to the point that now, she too is free to imagine her life full of activities as it might have been otherwise, with minor adaptations as required.

I didn’t have any particular expectations when I set out to write about my experience in the context of this project. I only hoped that it might be helpful to someone in some small way, in a way that I wish I could have been helped when I needed it the most. But as it turns out, this project continues to be helpful to me too in so many surprising ways. The warm response from the students today who have their entire university and working lives ahead of them and very little in common with what I have lived, and at the same time, the immediate understanding and compassion I felt with the student who approached me to say her story so closely resembled mine, remind me that there is always much to be learned and much to be appreciated, even when you’re not expecting it. 


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En français...enfin!/In French...finally!

by Helene Louise  

(For English text, see below)

Je suis très contente de pouvoir écrire que mon livre, The Little Dark Spot: How I Came to Terms with My Baby’s Stroke, est maintenant, enfin, disponible en français! La petite tache noire : Comment j’ai fait face à un AVC diagnostiqué chez mon bébé est maintenant disponible sous forme numérique auprès Amazon (incluant Amazon.ca et Amazon.fr).

Je tiens à remercier mes chers amis francophones qui sont toujours prêts à répondre à une série interminable de questions sur les nuances de la langue française, et Cécile Latizeau pour ses révisions et corrections attentionnées au cours de la dernière année.

En plus d’accomplir quelque chose qui était très important pour moi, je peux facilement dire que cet exercice a été une façon exceptionnellement efficace d’améliorer mon français!

Ci-dessous, vous trouverez un extrait ainsi qu'une sommaire. Bonne lecture...!

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I am truly happy to be able to write that my book, The Little Dark Spot: How I Came to Terms with My Baby’s Stroke, is now, finally, available in French! La petite tache noire : Comment j’ai fait face à un AVC diagnostiqué chez mon bébé is now available as an ebook on Amazon (including Amazon.ca and Amazon.fr). 

I am very grateful to my dear French-speaking friends who are always so willing to answer my endless series of questions on the nuances of the French language, and to Cécile Latizeau for her thoughtful revisions and corrections over this past year. 

Besides accomplishing something that was really important to me, I can easily say that this exercise was an exceptionally effective way to improve my French!

Below, are an excerpt and overview. Happy reading...!

la petite tache noire sommaire.pdf la petite tache noire.pdf the little dark spot-overview.pdf the little dark spot.pdf


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Teamwork for Back-to-School Success

by Helene Louise  

adapted protractor instructions.pdf

In a world where success so often seems measured by large-scale achievements, I still seem drawn to the smallest ones, the kind that most people wouldn't even bother writing about. In my presentation "The Importance of the Tiniest Things", I talked about how to me, it's the tiny things—a single smile, a kind word, a finger that one day, after months of effort, moves even just a fraction of a millimeter—that can make the difference between despair and perseverance, between frustration and hope. And in my book, I wrote about the first ten years of coming to terms with my daughter having suffered a pediatric stroke and all the tiny triumphs that were ours to celebrate. 

Although she is now well into her teenage years and doing infinitely better than I could have ever imagined, there are still challenges to be overcome. For example, in high school the concepts are becoming increasingly complex and the time pressure of exams ever more intense. But for my daughter, because of the stroke, the more stressed she feels, the less her affected hand responds, often ending up completely unresponsive and closed-up in a fist when she needs it the most. This has been particularly troublesome during math tests for which she needs to use a protractor. She can use her left hand to mark the angles with a pencil but having to hold the protractor in place with her fist means she is covering up most of the protractor with her hand, making it very difficult to see through it and measure accurately. So, one of our occupational therapy objectives this summer was trying to figure out how we might adapt a protractor for her.

When we arrived at the rehabilitation centre for her appointment, her occupational therapist asked if two of the students working there this summer could join us. I of course said yes and to my surprise and delight, when they walked in I realized that they were students from the class at McGill University that I had made a presentation to earlier this year. At that time, I had been invited to share my story with the students in the hopes that my experience might be helpful to them, and now, a few months later, here were two of those same students ready to help me! 

We all put our heads together and after much discussion and brain-storming, decided that the best way to adapt the protractor would be to somehow extend the base of it so my daughter could hold it steadily in place, without her hand getting in the way of the lines. To operationalize this idea, I then turned to my dad who, with his practical knowledge and workshop full of tools and miscellaneous doodads, came up with what is pictured in the photo above.

When I showed the final product to my daughter's occupational therapist, she said that this solution could actually be of great help to many other kids facing dexterity issues for different reasons. So, my daughter and my dad headed back into the workshop to document the process. I've attached the resulting "adapted protractor recipe" here in case there are other families and occupational therapists who might find this helpful.

All in all, everyone's contribution to this process might seem so very small when considered on its own. However, all of our tiny efforts together, the students at the very beginning of their careers, the centre staff in the middle of their careers, me as a mother and then later, my dad with his practical know-how, all came together to solve what might seem like something small to others but to my daughter, opens up the possibility of being more successful in school, feeling more capable, along with the long-term contribution to her self-esteem that that certainly brings.  

It might be ever so tiny as an achievement in the big world, but I truly do find real beauty and a sense of shared success in all of that. 


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