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.

Mommy Dearest...

During Boost Camp (a conductive education camp where Sam first learned to balance and sit on a bench with no strapping up, to sit cross legged on the floor, and where he said his first sentence, "I don't like this."), Sam complains a lot. He likes Boost. He knows it helps him and he is excited to go every day. He enjoys his friends and helpers and shouts merrily when we arrive, after an hour's drive, to the camp. (Doyle Park Elementary School, gods bless them for lending it to Boost).

It helps him to see that other kids with disabilities have a hard time doing things. Even so, they still work very hard to sit, stand, walk, play, eat and talk. Even though he is proud and enjoys the outcome, it is insanely hard for him. Imagine if your body fought you when you tried to take a drink of water. If the cup weighed eighty pounds and your throat was swollen almost shut and you were nauseous but very thirsty, so you had to drink. You might give up and let the cards fall where they will--especially if all around you healthy people were drinking out of light cups and saying, 'come on you can do it.' But look--here are three or four others with swollen throats and heavy cups--you can try together to slake your thirst. Now it is doable. Sam likes it, likes feeling normal, but there is great wailing and, literally, gnashing of teeth during the tasks.

Generally, I keep the pressure on even when he is crying, yelling, and saying, "ANGRY! ANGRY! ANGRY!" (His enunciation of angry is amazingly good. He also learned instantly to use his communication device to say "I'm Mad!" appropriately). He is proud when he finishes his tasks, despite complaints. So when Sam yelled and complained walking with only the handles, but not the arm troughs, on his walker, I said, "I know it is different from what you are used to, but you have to do it. Stand up and quit moaning. Straighten your arms." I made him walk from the car to the door of the classroom. Imagine my horror when I went to take off the handles and discovered that the left side was bloody by the screws. He had scratched up his arm and it hurt. He wasn't only complaining about a new harder task. The walker gashed his arm. I am going to hell. Oops. I am already there.