As I sit here on the eve of her IEP meeting, combing through notes, preparing to fight, I’m reminded about what the fight is about.
Maggie is smart. She understands everything. But the school system tests using motor skills and verbal skills, both of which are extreme deficits.
If only they could see what I see – what her speech therapist sees. Reading, writing and literacy are all complicated, but possible.
The other day, sitting in front of her Tobii, she read an entire book to me. I didn’t activate a single page of the book. Each page is programmed into the computer and when she looks at the words on the page, the computer’s voice reads them. She read every page. In order. I helped her “turn the page” (another button to activate on the screen), but other than that she read her first book. It was called My Puppy. And she was able to do that because we read to her every night and because she works on reading with her speech therapist every week. And there it’s not just reading, it’s directing the reader, communicating about the book, about the task and it’s beautiful.
So I’ll go in and fight. And they’ll tell me this video isn’t relevant because it’s in a controlled setting. And I’ll tell them “but she can read!” And they’ll look at me like I’m delusional. And I’ll tell them “but she can read!” And they’ll tell me that she needs to be able to do this in a classroom with teachers who they refuse to train on how to support her on her communication device and that she needs to respond to questions to make sure she’s actually reading – you know how all kids read. And then they’ll ask, “how can we be sure she’s reading instead of just accidentally activating the words?” And I’ll say, “because what is the harm in believing? If you presume competence and you’re right – you did your job. If you presume incompetence and you’re wrong – you can’t have done a worse job.” And they’ll put on Maggie’s permanent file that I’m difficult to work with. And I hope, in this case, I’m always difficult to work with. It means I’m doing my job.
And then I’ll go back home and my daughter will read me a book, and whatever they said won’t matter any more.