Nora's Colors of the Wind
Nora's Colors of the WindMay 10, 2016, Marilyn Lord
Nora is someone who enters a room so intensely that it is impossible to forget the first time you met her. For me that day was the start of this school year. I was participating in the vocational training program offered at ACES in a volunteer partnership with our local school district's adult transition program.
As I guided Nora and several of her classmates on a tour of ACES, Nora pressed ahead for a more comfortable lead position. Her eyes darted like hummingbirds under furrowed brows. Nora stretched to see around corners as her job coach, Kate, rapidly flipped through a ring of miniature visuals dangling from her lanyard to reveal the precise one to slow Nora's pace. If I were asked to guess Nora's thoughts that day, I would imagine the narration to be: "Ok, I see. Right. Mmm-hmm. When are we getting to something I'm interested in?"
Then she saw it. The mirrored wall of our main vocational training room where several of our clerical tasks are practiced. Nora immediately morphed into an actor dramatically contorting in various stop-action poses to reproduce a scene from her memory. Though I have considered covering up the mirror to prevent the competition it creates with the preferred thoughts of some students, ultimately, I decided the mirror is just another environmental condition over which they will learn to gain power -- and with the help of their job coaches -- they do.
Nora's mother, Eman, confirmed that her daughter's greatest pleasure is to retreat to her room and bring characters to life through dress up. Her favorites are the Disney Princess wigs and costumes. Eman said that for many years the only language Nora offered was dialog from those movies. Sometimes Eman uses that dialog herself to motivate Nora toward a desired action. Just like another parent who famously used this strategy, Eman might use the voice of Cinderella's stepmother and admonish: "Stop complaining and go do your chores." Nora always responds with a smile and continues with her work.
The only functional interest Nora possessed throughout her childhood was her mastery of the computer. By age 8, Nora had learned Microsoft Office with only a minimum of instruction. Her passion for Disney animation and the people behind the voices filled hundreds of files that she created. However, turning this technical knowledge toward a more useful vocational path proved to be much more challenging for her family and teachers.
Nora's mother went on to describe how Nora lived two experiences, sometimes impersonating the gentle princesses, and sometimes becoming incredibly violent. Through most of her teen years it was everyone's number one priority to prevent Nora from hurting herself and hurting others -- her hitting, biting, breaking objects and pounding holes were just so frequent. "I was suffering," Eman said, "Nora was suffering." "I wanted change, and the angel we found in our first ABA supervisor, when Nora was 14, brought it to us. The injurious behaviors are almost gone now," she said.
Nora's apparent behavioral complexity would compel anyone who doesn't jump to conclusions to want to understand her better. However, Eman told me that people do jump to conclusions. One example occurs when she and her daughter take a walk around the lake in their neighborhood. "People sometimes edge away from Nora as they pass like you would when passing a dog you're afraid of," Eman said. "It hurts."
Observing Nora in her early days of the vocational program, I could see how fear could be the choice someone might make. Nora once met my polite request for the removal of her sequined Disney cap and fur trimmed checkered vest that was concealing her uniform with a clenched jaw and hand. Only a thin thread of self-control and Kate's quiet centering reminder about the benefits of complying ended the suspension of time as we awaited Nora's decision. At moments like that, Nora would seemingly "come to," and with effort, push out the words "I'm. Sorry. Kate."
I saw, too, that a smile and appreciative look into Nora's eyes could lead to a moment of deep connection. At those times, Nora would hold the hand I offered in thanks, as well as my gaze, much longer than is normal for her. Though her smile is usually reserved for a glance at her reflection, an authentic connection can rise above all fantasy for Nora, too.
After only a handful of months in the program, Nora is now entering performance data on computer generated spreadsheets for reports that go to our Chief Operating Officer. She does this in tandem with Kate with such attention and effortless navigation that we are looking for more ways to benefit from her natural interest. Her focus is our only indication that she enjoys this task, otherwise, in typical Nora-fashion, she would likely call it "boring" -- her occasional description of other clerical duties.
This trait of "telling it like it is" with a single word zinger is part of what makes Nora so interesting. However, she has also adapted in substantial ways to an office environment. Her uniform is no longer hidden beneath her eclectic street clothes. The lanyard of visuals is gone as now Kate only needs two: "Yes" and "No", to silently remind Nora of where she's at behaviorally. To see Kate's eyes shine with pride at all the progress, while Nora seems not to notice anything spectacular is going on, is like watching a match made in heaven.
I have not asked Nora which Disney Princess she favors -- it would not be "work appropriate" or age appropriate for that matter. But Pocahontas and the lyrics of "Colors of the Wind" do come to my mind. I think the cautionary message to ones who assume to know so much, could be the true way Nora embodies a Disney princess. Perhaps if Nora had the words, she would be advising us the same way the fictional Pocahontas did; Look beneath the label and find the real truth. This leaves her family, teachers, and therapists, to take on the role of John Smith. To first acknowledge that Nora has opened our eyes to look closer for unexpected things, and also to show her that there is another kind of life outside her thoughts where it is also possible to live happily.
At age 19, Nora is early into her adulthood. There are more discoveries and crossings of the great divide we call autism for us all to make. I am just grateful to be an observer of a small part of it as it unfolds in Nora.