Humility and What I (don't) Know

Boost Camp, a month of five hours of physical therapy called Conductive Education, which we bracket with two hours of driving, is over for '09. Sam works sooooo hard. As do I and my mom, who comes down to help so I can take an hour or so off during the day. The other kids (eight of them this year) are also physically handicapped. Most of them have cerebral palsy, some also have seizures, some have genetic disorders. Some are exceedingly functional but have some trouble walking or balancing. Some have much more pervasive issues. The kids, most of whom spend a lot of time watching able bodied people succeed and have fun, get to watch people like themselves work, play and succeed. It is an amazing month with inspiring parents, grandparents, caregivers, Conductors and high school or junior high volunteers cheering on our kids.

This year we saw a monumental change in two of the girls. One in particular brought me such a sense of humility. Her grandma always awes me because she has sole care of this teenager who does not speak, seizes, uses a feeding tube, and has a myriad of other things going on. Her mother is not alive. This girl, I thought last year, was not very present or alert. Her tongue thrusting and self injurious behavior led me to believe she didn't notice or care about much.

Boy was I wrong. This year she is alight with interest in the world. She has started eating. At 14 years old, after tube feeding for over a decade she wants to and is eating. She follows directions and responds appropriately to questions and directions. She uses a switch to communicate. She is less self-injurious (perhaps because she is less frustrated, who knows). Often it looks as if these kids are not looking or listening because their heads are twisted around, their eyes are not focused on what we are pointing to. Nonetheless, all the kids at Boost, respond by reaching and getting what we are talking about (a switch, a communication device, a ring or bar).

All in all, I am humbled as I realize that I know nothing about what is happening with these non-verbal kids who are stuck inside themselves. They have whole worlds which they don't get to share. One of the other moms and one of the conductors both told me that often these kids play inside their heads. What a difference from the attitudes of educators I have encountered who imply that these kids are simply lacking intelligence. In fact, one past implied that since Sam looked back and forth quickly between his choices, he simply could not communicate. I truly wish Sam's teachers will be more in line with the Conductive Education philosophy.