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Raising a child with autism
Even when she's right here, my daughter can seem a world away — a feeling her caregiver, whose daughter really is a world away, knows all too well
 
Distance can take many forms. 
Distance can take many forms.  (Thinkstock)

Having wrestled the boys to bed, I return to the kitchen to find Vangie reading my daughter Erin the Disney story Lilo and Stitch. I begin to load the dishwasher as Vangie's soft voice floats over the kitchen island.

"Ohana means family," Lilo said. "Family means nobody gets left behind."

I pause and glance over at my daughter cuddled beside Vangie, the woman who has helped us care for Erin and our three younger sons for the past four years. Vangie has a 15-year-old daughter in the Phillipines whom she has not seen in 10 years. Vangie came here to work, and regularly sends money back to her parents and siblings, who care for her daughter. I wonder if Lilo's words strike her as they do me. If they do, there is no visible hesitation and she does not miss a beat in the story. She well knows that it is best to keep a steady pace with Erin, who stares at and studies Vangie's mouth — entranced as much by the consistent production of words as by the story itself.

Erin is 12. She has an autistic spectrum disorder. Because of this, she is drawn to repetition in a variety of forms, and is captivated by predictable progressions: the recitation of words, the tapping of fingers, the rotation of ceiling fans. I have come to accept, somewhat, that Erin is as thrilled by the telling as the tale itself. Erin has always loved books — being read to, as well as flipping through the pages, studying the text, pouring over the illustrations. In a book the words keep coming and the pages keep turning. It's all very predictable and reassuring in that way. However, not all stories are as predictable as the mechanisms through which they are told. And neither Vangie nor I have any idea how the stories of our daughters will end.

Desperate to become a U.S. citizen so that her daughter can live with her here, Vangie applied for a green card years ago. Since then, she met an American, originally from her country, to whom she is now engaged. As she prepares her application for citizenship through marriage, she can simultaneously submit a petition to have her daughter come live with her. However, she only has until her daughter turns 18, when she will no longer be classified a minor and deemed too old to enter the country as her mother's daughter.

Vangie talks with her daughter weekly. She knows her progress in school, how she gets on with her peers, school girl crushes, and social outings. She charts her growth through photos, noting new hairstyles, dresses, how much she has come to resemble her own mother. She has celebrated birthdays, graduations, family milestones — all at a distance. It's impossible to say how much she has missed while striving to give her daughter something better. Because in the end, Vangie's daughter is a world away.

Sometimes I can't help but feel this way about Erin, too. Though she has been right here beside me all along, I have spent much of her childhood distracted, trying to figure out a way to reach her. Over the years I have enlisted a small army of specialists to help us "break through," to teach her how to walk, to talk, to play, and to interact in some sort of meaningful way with her family and the world around her. I've read the books, attended the conferences, implemented the diets, and explored the alternative therapies.

The theory goes that if left to their own devices, children with autism might fold in on themselves, so tantalized by their own experience of the world they may be unable or unwilling to look beyond themselves. Without the right therapy, they will lack the tools to ever purposefully interact with others. Whatever their cognitive abilities, they must be constantly pried from their comfort zone, whether their fascination be lining up match box cars, discussing the solar system, or studying sunlight as it falls through a window.

When Erin was 18 months old, before we knew but had an inkling that something was not right, we brought her to a neurologist, who, after a brief exam, hastily scribbled down the number for Early Intervention and directed us to call immediately: "With these kids you have a window and if you don't act now you could lose her." His words terrified me. Erin sat bouncing on my lap, happily paging through a magazine, which at the time seemed all so typical — how could I possibly lose her?

The years since have been a constant struggle to avoid finding out the answer.

Some days Erin is more with us than others. We do all we can to keep her engaged, to keep the dialogue and connections going. As our family grew, we hired Vangie to help us keep Erin's down-time to a minimum, and to keep her from retreating into her own world. When I become frustrated with the unpredictable nature of Erin's days and nights, Vangie's endless patience and calm amazes and inspires me. But as I have learned, she has more experience with a life of waiting to connect with a child, and living with the uncertainty and hope that it will ever happen at all.

In Vangie's book there are no hard and fast answers or definitions of family or love or how one relates to the other. It's an unpredictable story with an unforeseeable end. As mothers we do the due diligence, we file the petitions, submit the paperwork, enlist the experts — we do what they say we have to do to get our children back, but still we are left to wonder will we really ever find them — will we reach them — in time.

 
Eileen Flood O'Connor

Eileen Flood O'Connor is a writer and mother of four children, the oldest of whom has an autistic spectrum disorder. She graduated from the University of Virginia, holds an MA in literature from University of London and attended Columbia School of Journalism.

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