Disconsolate

Yesterday Emma’s beloved gymnastics was cancelled at the last minute. This is unacceptable to Emma. First of all she cannot understand the reasons for such a thing to occur. That the instructor called, just minutes before they were to leave, was baffling. What could possibly have come up? Then the reasons for the cancellation – that they didn’t have enough people to help with the birthday party which was planned and going on at the same time as Emma’s lesson was not something she (or quite honestly I) could comprehend. Emma was disconsolate. Richard told me it took a long time before he could go anywhere else with her, her sadness was so great.
When Emma is disappointed, it is not the disappointment of a neuro-typical child. It is unlike anything I have ever witnessed. It is as though the world were ending – and perhaps to Emma it is. To live in a world where there is so little chatter, in your head or externally, is to live in a kind of silence I cannot know.
Before I left for Aspen I was reading a children’s version of the story about Helen Keller to Emma. It is called “Helen Keller A Light For the Blind” by Kathleen V. Kudlinski. When I began reading it to Emma, I thought it too advanced for her, but on the third day of reading it I brought out a different book, a picture book. Emma was snuggled into her bed as usual, but upon seeing the picture book shook her head. “No,” she said.
“Oh! Do you want me to read Hellen Keller or this book?” I asked holding it up.
“Helen Keller”, Emma said to my surprise.
“Okay. Good idea,” I said, putting the picture book away.
I cannot know what Emma likes about Helen Keller, but I know as I read it, there are a great many similarities between Helen and Emma, many more than I would have initially assumed. Up until she was 18 months old, Helen Keller lived and grew as any normally developing child and though Emma showed signs of her autism from the beginning, they became much more pronounced between 13- 18 months of age. Helen Keller became increasingly frustrated with the sudden dark and silent world which enveloped her. She could not understand it or anyone around her and it frightened her. Eventually her fears manifested as frustration and anger. When Annie Sullivan came to live with the Kellers, she was kind, but strict and forced Helen to do a great many things she didn’t want to.
As I have read about Helen Keller to Emma I can tell she’s listening by the way she cranes her head to look at the page and even more so, when there is a page of illustrations. One evening she even reached her hand out to touch the illustration of Helen Keller feeling water running through her hand. I wondered if Emma recognized something in the story and identified with her. Helen was a terrified angry child until she was able to begin to “see” the world with Annie Sullivan’s help. Does Emma identify with the terror and anger? I can’t know.
But when Emma’s gymnastics class was inexplicable canceled, something she’d been looking forward to all week, the only way she could express her devastation was by screaming and crying.
By the time I spoke with Richard, it was already the evening on the east coast and Emma was fine, having gone to her next favorite thing – The Snake Bite Museum. (Which is what she calls the American Natural History Museum because on the fourth floor there is a glass case with a boy sitting against a log who has been bitten by a rattle snake. The display helpfully advises how to avoid being bitten by a snake.)
When I spoke to Richard, I could hear Emma singing cheerfully in the background.
All was well once more.