Excerpt from "Three Times the Love"
INTRODUCTION
Three Faces of Autism: A Day in the Life
Nicholas wakes up at two a.m. and gestures that he wants to get up.
"Come on, honey," I whisper. "Lie here with mommy a little bit longer." But no; he’s up and nothing can dissuade him. He doesn’t convey this in words. Since he stopped speaking as a toddler, he shows us what he means through sign language—strong, eloquent gestures of his arms and hands. He can’t tell us how he feels, but he can show us. When he was recently ill with a stomach blockage, he took our hands and placed them over his belly with an anguished look. This was clear enough, though we dream of hearing words.
As I start to get up, he heads into the kitchen and comes back with a box of Ritz crackers in the shape of various dinosaurs, sitting down and picking systematically through the entire box until he finds the stegosauruses—the only ones he will eat. Then he turns to Randy’s computer manual and begins paging through it, one of his favorite activities. It has left the pages dog eared and moist. He’s not really looking at the pages, but something about this activity seems to soothe him—he can do it for hours.
But not today. After a few moments, he looks at me and gestures that he wants to watch a Sesame Street video, one he loves so much that he often kisses the screen and sways to and fro when he hears his favorite song.
His activity wakes his brother, Hunter, who also rises and begins toe-walking across the room to his computer to begin one of his games. Toe-walking and stimming—self-stimulating behavior involving twirling, turning, and twisting objects—are the main manifestations of his autism. Like Linus in Peanuts, he drags behind him a blue blanket, which acts as a pacifier and helps him remain calm.
Hunter speaks only occasionally and often won’t respond to his own name, as if he isn’t entirely certain what "Hunter" means. As he walks into the other room, he begins emitting a high-pitched scream—unnerving since it seems to emerge for no known reason.
Our third son, Zachary, is now awake and begins his day by climbing out of bed and searching for his Dr. Seuss books, which he recently has begun reading aloud to anyone who will listen. Our most verbal and high functioning child, Zachary speaks in snippets and occasionally engages us in meaningful conversation. For a few months now, he’s been letting us know when he feels sick by announcing: "head broke," meaning his head hurts or even "I need ice" when he thinks he has been injured. He can’t describe the pain but at least he can give us the location of where it hurts."How are you today, Zachary?" I ask him, and he repeats "How are you today, Zachary."
His skills of repetition are uncanny. He is unable to say "Hi, mom" but he can repeat an entire TV show, word for word. He also speaks of himself in third person. If he sees a photograph and we ask "Who’s that?" he says, "That’s Zachary."
We have one son on each end of the autism spectrum and one in the middle. In terms of language and relatedness, Zachary is the highest functioning, Hunter is intermediate, and Nicholas has no language. But they are all progressing.
Randy and I lie in bed a few moments longer, looking at each other in mutual weariness as our boys begin the day on their own complex, private paths. We’ve only slept three hours, but that is going to be it. Randy has a long commute and a full workday ahead of him; it’s a school day for the boys, and a full schedule of important therapies. That means I’ll have to maneuver all three through breakfast, dressing, and into the minivan without major meltdowns or crises.
The boys require major assistance getting dressed for school—not their favorite activity. It can be a challenge chasing after them once we get on a sock or shoe. Zachary voices his displeasure by shouting out "No school!" as he runs from us, so we usually dress him last. We often persuade him to go by telling him that Dr. Seuss also attends school in the same building. When this isn’t effective, we say, "It’s the law; you have to go," though that doesn’t work as well.
Sometimes we wonder why he’s so fervently opposed to going to school. Did something happen to him the previous day? Was someone mean to him? But he can’t tell us. Our boys are locked in a world all their own, and our days are devoted to breaking through, drawing them out to join us.
I head to the refrigerator and grab a Diet Coke with caffeine while Randy makes coffee. In various rooms, I hear the ping of a computer game, Big Bird singing on Sesame Street, and Green Eggs and Ham being read aloud by Zachary. It is 2:15 in the morning, and thus begins another day.
This is not simply our life, but that of thousands of families across the country who find themselves consumed by the deep love and immense commitment that are part of raising children with autism.
We had never even heard of the disorder before the birth of our sons, and then we suddenly found ourselves raising three boys with autism. It was difficult enough to have them correctly diagnosed, but even afterward it was hard to find any information on the condition. The Centers for Disease Control and Prevention have been collecting data only since 2001—and that was the year our sons were born.
Autism can place an immense strain on families, who have to reorient their expectations for their child’s future while becoming advocates on everything from education to effective therapies.
We have seen the weary faces of parents who struggle with their disabled children, emptying their retirement savings, fashioning their own treatment plans between full days of work and never enough sleep.
We understand what it’s like because we have been involved in this struggle ourselves for seven years.
Had we known what we know now, we might not have been stymied by a medical establishment that insisted our sons were normal, by school systems that were baffled and unwilling to accommodate children with special needs, by the morass of treatments, advice, and dead ends.
As we researched and struggled year after year, we also discovered a desire to raise autism awareness, to reach out and advocate for other families so they’d know they weren’t alone. The thought of other parents coming behind us and hitting the same wall of indifference and confusion sickened us. At least our struggles might benefit more than our family. And so we decided to write this book, to give other parents the benefit of our experience.
As we continue to work our way through the tunnel toward the light, our boys have taught us so much about courage, persistence, and spirit. They have reminded us why we wanted a family in the first place. It is here that we can offer solace, support, and unconditional love when the outside world is threatening and confusing.
As parents of special needs children, there are a number of things we can’t afford to do—to become ill, to take a day off, or most importantly, to become discouraged.
Since each case of autism is unique, it’s impossible to create a cohesive plan that every family should follow. But through our years of intense research and trial and error, we have come up with a map of our own—including our experience with treatments, educational strategies and financial realities—that we hope can assist other families as they embark on their own journeys.
We fought hard to bring our sons into the world and now we are fighting just as hard to help them—and other families like ours—make their way through the difficult but sometimes awe-inspiring terrain of autism.
An Excerpt from our Award Winning Book "Three Times the Love", published in both 2009 and 2010.
"Three Times the Love" by Lynn and Randy Gaston
Published: Penguin / Avery (2010)
ISBN: 1583333797
