Last August, I was hired to be a shadow aid for Sam, a first grader who had Prader-Willi Syndrome. I read everything I could get my hands on about Prader-Willi (see the link on the right), so badly did I want to know all about Sam before the school year began. I generated pages of questions for Sam’s mother about how what he likes, what he doesn’t like, how he responds to this, how he responds to that. This was in mid-August; Sam’s mom was stressed out (at the time I had no idea) with trips to the OT, the PT, the SLT, Grandma’s house, orthodontia, assessments, and the baseball games to which Sam’s older brother was devoted. I began asking away–learned that Sam loves anything having to do with animals, basketball, and trains. He loves stories, and could listen to them for hours. Sam loves having jobs to do, and will do them with pride, which is conducive to his diagnosis: Sam regularly needs to get his body up and moving around–or else, he will simply fall asleep!
I tucked this information into my mental notebook. The rest of the questions, Mary simply told me “You’ll know when you meet him.” She had a difficult time describing Sam’s emotional world, only that it was topsy turvy at times and it was our job to keep a safe, consistent routine for him with lots and lots of positive feedback. Okaaay, that was easy since that was my entire job description in the world of Early Childhood Education.
But this was First Grade! How would I be able to keep Sam motivated to learn to read and write and keep up with the demands of the classroom? I met with Marti, the wonderful first grade teacher. We hit it off right away. It was almost scary how much our temperaments, our outlook, our ideas were alike. “We’ll just play it by ear,” she told me. And that was pretty much our mantra for the year. Little did I know that this was the attitude that was necessary for educating Sam. The best-laid plans might go kablooey, but going with the flow and taking advantage of small teachable moments–lots of improvisation, experimentation, and keeping it light–were just what Sam needed.
