By Amy Giles
Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing the dawn will come.
~Anne Lamott
"What color is this?" Maggie asks, holding the crayon in front of her face. I am frozen in suspended animation on the staircase, waiting.
Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing the dawn will come.
~Anne Lamott
"What color is this?" Maggie asks, holding the crayon in front of her face. I am frozen in suspended animation on the staircase, waiting.
Watery sunlight streams through the window, washing over my two girls, their legs folded beneath them in matching Ws on the kitchen floor. A kaleidoscopic bucket of broken, discarded crayons sits on the floor between them, as pixie dust swirls around their golden silhouettes.
"Purple," Julia answers.
I ease backwards down the stairs to erase my presence, careful not to make any sudden noise that might break the fragile truce unfolding, where an older sister has taken it upon herself to pull her younger sister out of her dark spell. A five-year-old, who in just a few short weeks has learned the principles of Applied Behavior Analysis (ABA) and is applying them in her own kitchen-floor play therapy with her baby sister, who was recently diagnosed with an autism spectrum disorder.
The ink is not yet dry on Julia's reams of paperwork. A parade of evaluators, therapists, doctors, and a full committee have all weighed in and unanimously agreed: Julia is officially a preschooler with a disability, squashing any last hopes we may have held that she was simply delayed and would eventually come around. I still haven't grasped the full impact of this diagnosis. Will she go to college? Will she get married? Is she even capable of sustaining any kind of relationship? Will I ever have a meaningful conversation with my daughter? Instead, I ask all of them, "What will become of my child?" My eyes plead with them for a shred of hope, but they cannot answer me. "No one has a crystal ball," they tell me with a sympathetic shrug.
The heartache of her diagnosis is so debilitating I believe the gaping wound will never heal. Every time I see Julia trapped within, lost internally, unable and seemingly unwilling to communicate, every time I see her stimming (self-stimulatory behavior) around the house, humming and grunting and thrashing into furniture to self-soothe, every time she explodes in frustration because no one, not even her own mother, can understand her, I feel that wound is torn open, again and again, all day long. I develop a persistent nervous twitch under my left eye, branding me so my anguish is both internal and external for the world to see.
I grieve, day and night. I mourn for Maggie, who should have had a playmate in her sister. Instead, my sensitive firstborn tries to protect me by shouldering more responsibility for her sister. She has a preternatural ability to look deeply into my soul and feel my pain viscerally, as if it were her own. I mourn for our family and the new uncertainty of our future. But mostly, I mourn for Julia who may never know a life where everything is possible. I rock my second born in my arms at night, staring at the stars and the moon outside her window, and ask out loud to God, my ancestors, the universe, anyone who will listen, "What will become of my child?"
We enroll Julia in a special education class over the summer. The principal is not sure this is the appropriate placement for her; Julia doesn't even respond to her name. She may need something even more restrictive than a self-contained class with a one-on-one aide, but we will review her progress at the end of the summer. Julia spends two and a half hours a day at school, five days a week, and is pulled out for speech therapy, occupational therapy, and physical therapy. But it's not enough and the district agrees to an additional fifteen hours a week of ABA therapy at home. At three years old, Julia is working from seven in the morning to as late as five in the afternoon.
My husband and I sit in with the ABA therapists and learn to emulate their words, their strategies, even their intonations. They have given us the special education manual to our child. We're learning a new language and are slowly cracking the code to break through to Julia. Where before she had only looked past me, through me, or around me, we now begin to see flashes of eye contact, those beautiful orbs the color of the Aegean Sea that now glance at me hesitantly, for only a heartbeat at a time, but with new clarity and awareness. Her tantrums decrease from hours to minutes. Her speech therapist tells me Julia has blown her away; she never thought she'd see such significant gains so quickly. I cry in response, heaving sobs, because it's the first time I'm allowed to feel hope.
***
That was seven years ago. Today, Julia is in a mainstream class. Her IQ and language skills are in the high average to superior range. Her diagnosis has evolved from PDD-NOS to Asperger's. She was accepted into her school's enrichment program designed specifically for students who are identified as academically talented. Julia sits next to Maggie at the dinner table, sweeping away her sister's long strands of hair so she can whisper — loudly — in her ear. Maggie's shoulders shake with laugher, possibly even relief. The girls are making up for those lost early years. Julia's teachers are working on her "calling out" without first raising her hand. I can't help but smile with pride. My greatest fear — Julia not communicating — has been turned completely on its head. Now, we can't get her to stop talking.
My seven-year twitch is all but forgotten.
"Purple," Julia answers.
I ease backwards down the stairs to erase my presence, careful not to make any sudden noise that might break the fragile truce unfolding, where an older sister has taken it upon herself to pull her younger sister out of her dark spell. A five-year-old, who in just a few short weeks has learned the principles of Applied Behavior Analysis (ABA) and is applying them in her own kitchen-floor play therapy with her baby sister, who was recently diagnosed with an autism spectrum disorder.
The ink is not yet dry on Julia's reams of paperwork. A parade of evaluators, therapists, doctors, and a full committee have all weighed in and unanimously agreed: Julia is officially a preschooler with a disability, squashing any last hopes we may have held that she was simply delayed and would eventually come around. I still haven't grasped the full impact of this diagnosis. Will she go to college? Will she get married? Is she even capable of sustaining any kind of relationship? Will I ever have a meaningful conversation with my daughter? Instead, I ask all of them, "What will become of my child?" My eyes plead with them for a shred of hope, but they cannot answer me. "No one has a crystal ball," they tell me with a sympathetic shrug.
The heartache of her diagnosis is so debilitating I believe the gaping wound will never heal. Every time I see Julia trapped within, lost internally, unable and seemingly unwilling to communicate, every time I see her stimming (self-stimulatory behavior) around the house, humming and grunting and thrashing into furniture to self-soothe, every time she explodes in frustration because no one, not even her own mother, can understand her, I feel that wound is torn open, again and again, all day long. I develop a persistent nervous twitch under my left eye, branding me so my anguish is both internal and external for the world to see.
I grieve, day and night. I mourn for Maggie, who should have had a playmate in her sister. Instead, my sensitive firstborn tries to protect me by shouldering more responsibility for her sister. She has a preternatural ability to look deeply into my soul and feel my pain viscerally, as if it were her own. I mourn for our family and the new uncertainty of our future. But mostly, I mourn for Julia who may never know a life where everything is possible. I rock my second born in my arms at night, staring at the stars and the moon outside her window, and ask out loud to God, my ancestors, the universe, anyone who will listen, "What will become of my child?"
We enroll Julia in a special education class over the summer. The principal is not sure this is the appropriate placement for her; Julia doesn't even respond to her name. She may need something even more restrictive than a self-contained class with a one-on-one aide, but we will review her progress at the end of the summer. Julia spends two and a half hours a day at school, five days a week, and is pulled out for speech therapy, occupational therapy, and physical therapy. But it's not enough and the district agrees to an additional fifteen hours a week of ABA therapy at home. At three years old, Julia is working from seven in the morning to as late as five in the afternoon.
My husband and I sit in with the ABA therapists and learn to emulate their words, their strategies, even their intonations. They have given us the special education manual to our child. We're learning a new language and are slowly cracking the code to break through to Julia. Where before she had only looked past me, through me, or around me, we now begin to see flashes of eye contact, those beautiful orbs the color of the Aegean Sea that now glance at me hesitantly, for only a heartbeat at a time, but with new clarity and awareness. Her tantrums decrease from hours to minutes. Her speech therapist tells me Julia has blown her away; she never thought she'd see such significant gains so quickly. I cry in response, heaving sobs, because it's the first time I'm allowed to feel hope.
***
That was seven years ago. Today, Julia is in a mainstream class. Her IQ and language skills are in the high average to superior range. Her diagnosis has evolved from PDD-NOS to Asperger's. She was accepted into her school's enrichment program designed specifically for students who are identified as academically talented. Julia sits next to Maggie at the dinner table, sweeping away her sister's long strands of hair so she can whisper — loudly — in her ear. Maggie's shoulders shake with laugher, possibly even relief. The girls are making up for those lost early years. Julia's teachers are working on her "calling out" without first raising her hand. I can't help but smile with pride. My greatest fear — Julia not communicating — has been turned completely on its head. Now, we can't get her to stop talking.
My seven-year twitch is all but forgotten.
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