Thursday, May 23, 2013

The Alex Project: Part 1 - Starbucks, Staircase, Laughter

If this were a movie it should open today, May 20 in my office.  Perhaps the camera would come from the sky, through streets of canopy oaks and through a college town into my office window. 

There you see April, Alex’s aid, sitting on a chair alone, listening intently.

In front of her, in a circle around a computer is me, then Alex in his wheelchair, tilted back a little but as close to the screen as his chair will allow.

Next to us on the unused part of the desk are remnants of the breakfast I brought and fed Alex. He’s so skinny and since his movements are so limited he can’t get himself food or easily have food delivered so I do my best to drown him in calories every time I see him. 

This past Saturday my daughter selected Alex’s menu: Panera macaroni and cheese with a brownie followed by a Starbucks caramel crunch frappaccino and brought it to Alex's group home where he lives with profoundly disabled, mostly nonverbal people. 

Alex calls the people he lives with “clients” and I tease him that it sounds like he lives in a hair salon.  He thinks its funny too, like the people who live there would book themselves for a long stay in a small house.

In the year I’ve worked with Alex I’ve seen hundreds of people look over him, through him and around him. I’ve heard people talk for him, over him and around him as well, so I’m listening very carefully. I’ve learned to sit and not interrupt him and offer say for him what I think he was about to say.

He takes a deep breath and swallows hard.

“Find the one from my exam about the home schooling.” He didn’t get the sentence all at once, but he got it out, twisting himself with effort.

I nod my head. I know what he means.

I downloaded over 3000 student bloopers from history exams into an excel spreadsheet and have worked on sorting them by era and key word and the idea of hunting for one particular blooper is mindnumbing. 

And not what we’re working on right now.

First we need to make the cover.

He says he doesn’t know how to do art things so I pull up a page of templates. His eyes widen. He can’t hold a pencil,  a cup, pen, spoon or a brush but he can do art, I know he can, and I want him to have this and say he designed it.

Alex picks the image he wants to convey – stairs, because they symbolize all the obstacles he has to face.

 I nod and agree and pop a few images up.

Alex asks for this color, then that one and after a few decisive responses he has a big part of his project done, but not the biggest part.

 In order to finish his work for my class he has piles of work to go through  but our attention is taken away by voices coming from the office next to us. A student is talking to a professor about his grade. I’m not sure the conversation was private; if so the student didn’t do a good job of using his inside voice.

The student asked why his grade couldn’t be an A and the professor said something about a print out of grades that show the student didn’t earn an A, wasn't anywhere near an A and in fact had done not a single bit of A work all semester. 

The student isn’t satisfied begs outright for a grade change based on nothing but the fact he was willing to beg until the professor caved in.  

A long “buuut whyyyyy?” crossed from the other office to mine and that’s all Alex can take and he throws his head back and laughs loudly.

I try to cover for his laughter by reading a line from the spreadsheet in front of us, of a college history exam where a student wrote that Columbus came to America and met Napoleon. 

Alex laughs at that, and so do the rest of us in the room. 

He nods his head, use that one for our project, and I mark it for the second round. . 

Fun is fun, but we have work to do.