I was having dinner with friends a few weeks back. They have an adult daughter with autism, and their daughter has also been diagnosed with a rare syndrome. My friend described her conversation with a new social worker: "So the social worker asked the name of K's syndrome. I told her what it was, but it was clear she hadn't heard of it before, so she struggled to write it down. Then she asked again. And then she asked me to spell it. So I finally said to her, 'You can learn how to spell the name of this syndrome, and you can Google it and find out the symptoms. Or you can get to know my daughter. The people who have been most effective in working with her haven't known her diagnosis. They've known her."

We went on to talk about the dangers of thinking that any human life can be captured by writing down a list of characteristics, be they physical, emotional, or developmental.

I had that conversation in mind when it was time to rewrite Penny's IEP, her Individualized Education Plan, last week. I knew teachers and administrators at her school were performing a battery of tests in preparation for the meeting. I knew they were going above and beyond–they are required to evaluate 2 of 6 areas of development. But at this school they always do 4, and per my request, they did all 6. The question remained, how would they, and how will we, measure this life? This little girl? This friend and classmate and daughter?

We received 35 single spaced pages written by seven different people at the school. The pages reflected classroom observations, one-on-one sessions, phone calls and meetings with us, and dozens of standardized tests. They gave us numbers–Penny's vocabulary is like that of a typical kid in first grade, her fine motor skills like a typical four-year old. Her language scores are high, her visual processing scores are low, and so forth. But the thing was, these educators put Penny in context. They used the tools at their disposal for her good. They saw the tests as a mean to the ends of serving her. For instance, we learned that she rarely was able to understand a "novel" task in a testing session, but if the test-giver was allowed to explain how to do a problem, and if Penny had a chance to practice and get another explanation, she would then "perform" very well. In other words, this is a kid who needs to be taught, and if you teach her, she learns.

Her new IEP includes all the standard kindergarten educational goals. She's learning how to write lower case letters and read sight words and sound out other words and kick a ball on the playground and jump rope. And she's doing it all not in the context of a diagnosis of Down syndrome, but within a school culture that values her, with teachers who are doing everything they can to help her learn. They've made me grateful for Penny's diagnosis and grateful for measurements and standardization because they measured her life, and they put their numbers in boxes, but they didn't reduce Penny to test scores. They just used the test scores to reflect upon who our daughter is and how she learns best. Which means they are allowing her to become who she has been created to be. They are helping her become whole, and we are very grateful.