When writing about my autistic daughter, Emma, I am often struck by how other people view what has been written. "She sounds just like my four year old," is something I have heard more than once. One walks a fine line between not wanting to exaggerate the tiny steps of progress Emma makes and the desire to write honestly about her life as we witness and interact with it.
For example, if I list the milestones Emma has crossed since her first round of stem cell treatments, this past March, one cannot help but come away with an impression of miraculous recovery. It is understandable how many reading our posts might conclude it must all be due to the stem cell treatments. And while there may be truth to that, it does not tell the entire story.
In June we embarked on an aggressive anti-bedwetting campaign, complete with alarms, pads, booklets we read and conducted to memory, kept elaborate charts, making note of the times she urinated, how much and whether it was in the bed or toilet. One of us slept beside her for three months, meaning the other, usually my husband Richard, slept in her twin bed with his newfound "bunk mate," as Richard came to refer to our cat, Merlin. We rewarded Emma with praise and stars and documented everything on our blog.
In August, when it seemed diapers were a thing of the past, we embarked on another campaign to teach her to sleep in her own bed. Again, this took fortitude and determination, with all of us agreeing we needed to cooperate together to ensure success. As difficult as it was for all of us, it was all the more so for Emma. As of three weeks ago Emma is now sleeping through the night in her own bed, getting up to pee as needed, returning to her bed and staying there until "it's light out." A phrase that may be our undoing, as the days grow shorter and the nights longer, but we'll deal with these problems as they arise. For now, she stays in bed and is sleeping longer than she has since her diagnosis.
Upon our return from Panama, where Emma had her second round of stem cell treatments, she seems to understand more, has an increased interest in being read to, tolerates more situations with increasing ease and has sustained eye contact. It sounds almost miraculous. And in many ways it is.
But if I then give a detailed description of a day spent with her - such as last weekend when we went not only to the Bronx zoo, but to a nearby playground afterward - and describe how she never once acknowledged the hundreds of children around her, much less exchanged eye contact or words, all the while carrying a two foot long stick which she refused to release even when on the monkey bars, then her utterances, her overall deficiencies, appear glaring. If I insist then on adding how she made bizarre whooping noises and whenever the doors to the subway closed with the accompanying ding-dong sound, Emma cheerfully sang out, "Gank - You!" replicating the exact tone of the warning sound, one is left with a very different sense of who she is. Yet both would be accurate and correct.
A balanced view is the goal of my writings. I endeavor to write neither an exaggerated version of Emma's abilities nor of her deficits. The trouble is, it isn't always easy. A mood, a less than ideal night with too little sleep, work stresses, marital stresses -- all effect how Emma comes across on paper. There's no way to really portray her with all her idiosyncrasies without it seeming somehow off. I read past posts and barely recognize her or us. The edges are smoother, the disagreements remain just that and not the melodramas they can feel to those intimately involved. Perhaps it is a positive thing. In the end we are the stories we tell, we become the edited versions we choose or in this case we choose to tell for Emma. Who knows what she would say, were she able to. Perhaps one day she will be able to do so and will choose to. Hers will be a very different story than the one I am telling.
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