Duchenne disease. A spring break reflection.
A friend of ours has Duchenne disease. His parents include one of my favorite teachers. They have been going through very tough times – highlighted in the local newspaper: http://www.princegeorgecitizen.com/news/local/hope-on-the-horizon-1.916734
I’ve signed the petition to support an escalation in research. More significantly, this news has had me reflecting a lot about what I/we do in education as his current life expectancy is late teens/early twenties and that means most of his life may be spent ‘in school’. Sometimes ‘we’ worry about getting our learners ready for ‘what’s next’ we can overlook ‘what’s now’.
My first instinct was to think whether or not I would even enroll him in school. But then I realized that was short sighted – especially with many schools supporting differentiated & more-meaningful instruction (If you haven’t seen the pic, google “friends don’t let friends hand out worksheets”).
Teaching for the ‘now’ is having me think about Noah for everything I teach and plan. Is what I am doing meaningful? Is each day a worthwhile learning experience?
My current statement when asked if I can provide ‘work for a student who will be absent for a vacation’ or similar is that my classroom environment cannot be duplicated in a ‘take away’ format. My new statement needs to include making the learning environment relevant and meaningful for students such as Noah – rich in intrinsic rewards; deep meaning; or, as one student said it one day: is learning supposed to be this fun? With a dash of ‘thinking you are going for recess when in reality it’s the end of the day. I’ve had these moments, but now they need to become the norm.
Noah will not be benefitted by a regular dose of worksheets an textbooks, but will benefit from ‘disruptive classrooms’ with geniushour, self organized learning environments, perhaps a dash of flipped classrooms and …. ???
And a learning journey communicates and reflected via a portfolio, not a collection of numbers and letters next to learning outcomes and task-completions lists.
Noah enters school age soon. I’ve got just a bit more time to get things ready. Hope to get some help!