Packing Charlie's Lunch on 9/11 (#74)
Little Things on Charlie's Mind (#76)

Something To Be Bothered About: Seeing Disability (#75)

On the 3rd day of the new school year, Charlie has already established a routine: A whiney wake-up (through which I get him dressed and give him his medicine, after which he rolls himself so tightly up in his blue blanket that it is possible to walk into the room and not note the boy in the bed coverings). Then comes a giggly spell; this occurred while we were still at home, with Charlie gleefully running down the stairs and calling for "minis-waffohs." We left with plenty of time for Charlie to take his time to loiter in the backseat of the black car.
We were across the street from his school and I heard a wailing, which only grew louder as Charlie and I neared the school entryway. There, on his stomach on the floor, lay one of Charlie's classmates, two aides at his side: "I want my mommy, I want to go home, I want my MOM!!!"

I touched Charlie's head as one of the aides rose from her knees and said, "Hi Charlie, how are you?" "I'm ine," he said, eyes rolling to the side. "Uh, he has an extra snack in a brown paper bag for his afterschool program," I put in.

I fell into step with another mother as I returned to my car, the shouts of the other child continuing. She glanced at me, arms folded across her chest. "Hard getting started, I guess," she said. "Yeah, we've been there," I said neutrally. My mind said, That could just as easily be Charlie, you know that. Remember. "Some of these things are kind of harder for kids with autism," I added. "So long," she said, "as it doesn't bother anyone." And we got into our cars. And I was bothered.

Charlie is in a special education autism classroom in a public elementary school for grades K-2. The school's walls are lined with children's artwork; parents bustle and chat at the doors. Charlie's classroom is located right in the same corridor as the other classrooms, across from the cafeteria/gym where he attends school assemblies and danced with the other kids at last year's Halloween party.

Today was his first taking the bus to an afterschool program. I hurried amid the trucks and traffic and under the railroad tracks to pick him up and found him in fine spirits, looking intently at someone else's sweet roll snack. He had fallen asleep on the bus and had to be woken up and had sneaked in a cupcake--forbidden food for Charlie, who is on the gluten-free casein-free diet--I shrugged and told the director not to worry if he ever eats something he shouldn't, that I just appreciate knowing about it. The building also houses an after-work program for adults with developmental disabilities. They sat at long tables, some in wheelchairs, some drooling and needing an aide to wipe it up, one rocking on the floor. It was very quiet. Two ten year-old boys in wheelchairs sat doing homework and a few other kids, a bit older than Charlie, sat with puzzles and snacks.

I suspected that Charlie, who tends to run in circles in big spaces lit by fluorescent lights, was one of the most active. I also suspected that, while Charlie might seem quiet lively and alert in this setting, he would be quite the opposite in an after-school program for typical children,who would talk and play ball and move away from a somewhat hyper, not very verbal 8-year-old boy who tried to take a bite of their cookies without one word of warning. And if a hurricane came into the building, I more than suspected that, while Charlie could swim, could do something to save himself, what about those adults at those tables, so quiet, their very faces calling out with so many stories yet to tell?

I hope to learn some of their stories in the weeks to come, as I walk among them when I go to pick up Charlie. Theirs, and Charlie's, are faces that are too easily hidden because society prefers not to see them; because society is bothered by "them." Thanks to so many hours of education and therapy, Charlie may have some chances that his fellow after-school-and-work-companions may not have had access too. Charlie's story is intertwined with theirs because he is "developmentally delayed," he is "different," and it is easier for him to be in this afterschool program than at one where kids with backpacks as shiney-new as his learn about the wonders of science, or do art projects, or refine their skills on the basketball court.

I intend always for Charlie to learn about science and art and do sports as much as he can. And if he cannot, or if he can learn only a little, it will be a great moment. Just as it was to see his big brown eyes under the fluorescent lights this afternoon and to look, for a moment, into those of the man in the wheelchair, with his great head and smaller body. I will do my best to let the world know about that moment before it passes into silence, because it will be a great moment when we can both not be bothered and be bothered, that we once hesitated to look and hear the faces and the voices of the disabled, of children with autism, of Charlie.
Big brown dog friend


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