The Spirit Catches You and You Fall Down

This book is required reading for Family of the Special Needs Child, a class that is perhaps becoming my favorite this semester. That is a bit premature. I have only had two classes and the first few chapters of this book are not due to be read for a few weeks but I couldn't help myself. I was overcome by curiousity. And despite the fact that my Math for L.D. professor said our required reading is engrossing, I haven't gotten to the engrossing part yet. I wanted to read.

Here is the thing. If you are a teacher. Or a healthcare worker. If you are in any kind of public service. If you are in fact a human being living on this planet. You need to read this book. It is sad. And powerful and remarkable in so many ways. It was written by Anne Fadiman, a Western Ma. local. There is truly something in the water around here. If you live in western Ma. you are a blogger or a poet or a lyricist or a novelist or a playwright, You almost don't have a choice. And yes, I realize it is a bit silly to include blogger there. I guess I am giving myself airs.

This poignant tale is the story of the clashing of cultures between the Lees, an Immigrant Hmong family from Laos and the American medical team they encounter in California, when their youngest daughter begins to suffer from epilepsy. Fadiman does an extraordinary job weaving together the story of the Hmong people, the Lee family and the experiences of the small county hospital that provided services for little Lia. There is no bad guy here, just immense cultural difference and confusion. Everyone involved is doing what they believe is best for the little girl. But things go terribly wrong. Of course I haven't finished the book, I am trying not to, but I have a fairly good idea about how it ends.

Our class has been having these great discussions about the Special. Ed. process and the American education system and how to navigate it as a family, as an immigrant family, as a parent with special needs etc. And yesterday when a friend of mine from Uganda (who happens to be a single mom with a child who has special needs) came to visit I was reminded again of how difficult it is for so many reasons, how important cultural awareness and sensitivity is. And I am not talking about being politically correct. I am talking about being aware that there are differences and not to assume that our way is understood. There needs to be a better way to help families understand the process. Our class is pretty much devoted to that idea. Our system of transitioning children and families into Special. Ed. mostly doesn't work. How can we make it work? That is one of the things I love about my program. It is very critical. Occasionally one of my professors feels the need to remind us that they believe that Special. Ed. is a very good thing they just know it needs to be better.