“What the hell?” I asked Howard.
“Carly loves the water,” he said matter-of-factly. “She’s been swimming like that for a few months now.”
I began to realize that Howard knew Carly far better than I did. As she reached the shore and stripped off her wet bathing suit, Howard answered before I could ask: “She hates wet clothes,” he explained, as if introducing me to a stranger. I wondered how many parents need a twenty-three-year-old kid to help them make sense of their child.
For a few years, taking a trip with Howard to support Carly seemed to work. But when Howard got married, traveling with us became more challenging. And as Carly headed into adolescence, her behavior became more erratic and chaotic. Vacations together were anything but time off. We had started to meet other families through the autism advocacy work Tammy did who were clawing their way through a similar path. “You and the other kids still deserve a life,” one said to us. “Just go away without Carly. You have a nanny and therapists.”
The first time we did, I noticed Carly seemed agitated when she saw our suitcases in the hall. “Do you think she cares that we’re leaving her behind?” I asked.
“Please don’t ask that,” Tammy answered.
The winter holiday period seemed to be the worst for us. The change in schedule, high expectations of joy, and lack of support staff due to the statutory holiday all conspired to make the Yuletide gray. But clearly we were not alone in the struggle to maintain a semblance of a normal family life. One year, a friend’s twenty-year-old autistic son had what she termed a freak-out. Maybe it was the color of Aunt Rose’s sweater or the parsley in the stuffing. It never really matters what sets off a person with autism. Whatever it was resulted in six police officers escorting the young man—who can become violent, much to his own remorse—to the local emergency room in handcuffs, where he had to be sedated. She later sardonically posted on her Facebook status, “So this is Christmas.”
Like our autism brethren, we learned to spend time with our other kids, together in twos and fours though seldom as five because if it were five, then it would be six—Carly always had a helper in tow.
Tammy and I did our best to institute date night, even if it was just going out to a movie to sit in the dark quietly and not move.
And as Carly grew from toddler to child to adolescent, we formed our own odd reality. It was a place of good enough. Not perfect for her, certainly not perfect for us. But compromises are the staff of life. I stopped thinking of us as a traveling sideshow. While not typical, for us, this was about as normal as it would get.
Another Dream
The same dream I have at least once a month. Just a different situation. Carly is perseverating, stuck in a spin cycle of some repetitive behavior. The socks all have to be out of the drawer, or the plates all have to be off the table, or she has to wash her hands five more times, soap on the front, soap on the back, then repeat. Classic OCD. This is part of the dream, but it is real life, too.
I am roiling with frustration. In my dream this has been going on all day and I’m at my busting-open point. Probably because it has also been going on all day for real. I yell, “Stop. E-nough,” and slap her just hard enough to hurt me. “This is not fair,” I plead.
“No, it’s not fair,” Carly cries. Then, “Mom. MOM. Dad slapped me.”
We look at each other in utter disbelief at the words from the broken machinery of her mouth.
I hug her in tears that will not stop. Now I am the one perseverating. We run to tell Tammy of how a slap cured Carly.
I’m beginning to dread sleep, but wonder if it will be the only place I will ever hear my little girl’s voice.
Part II
A Voice Inside
And after the fire a still small voice.
—1 Kings 19:12
9
Breaking the Silence
Q: @CarlysVoice: Carly, do you think what you are able to do is a miracle?
A: No, it took me a long time and a lot of hard work. Even before i spelled I communicated with picture symbols and had a lot of therapy. It did not happen over night and i worked so hard to get to this point.
“Carly’s been writing all day,” Howard said excitedly into the phone.
“She’s been doing what?!” I yelled back.
I was swerving down Route 64 from the south rim of the Grand Canyon toward Flagstaff. It was March 10, 2005—spring vacation—and Tammy and I had decided to take Taryn and Matthew away for a break in the routine. Years before, Tammy and I had fallen in love with the isolating openness of the Arizona and New Mexican desert. Somehow the ocean of multicolored sand interrupted by sun-toasted red clay mesas and grandfatherly Saguaro cacti brought us peace. We had made several trips to the Southwest in the years before autism framed our life. Now that Carly was ten years old, we needed solitude more than ever.
As we descended the mountains and drove south watching the outdoor thermometer in the rental car rise from just above freezing to nearly 80 degrees, my cell phone rang. The reception was frustratingly broken. As best I could make out, and what I repeated to my wife and children, was that Barb and Howard had been working with Carly all afternoon, and she had been typing out words and short phrases on her voice output device. To date, they had been using the electronic unit as a sophisticated picture book with a voice. Carly would touch the picture of the items or activities and the digitized voice would approximate a conversation. It was primitive, but less so than Carly’s frustrated wails, finger pointing, and grabbing.
We lost the phone connection. I sat silently, absorbing the news, when the phone rang again moments later, and I put it on speaker so we all could hear Howard.
He told us that he had spent the afternoon clearing items from the voice output device to free up memory in anticipation of Barb arriving for her appointment with Carly. “I was going to delete the alphabet function,” he said. “She isn’t using it for much. We need more space for additional pictures and symbols.” Had he deleted that, what happened that afternoon might never have happened. Or at least not for many months.
He reported that Carly was restless and cranky that day; whining, running around the room, unwilling to complete her tasks. “What do you want?” Barb asked, her voice edged with exasperation. “Sit down and help us understand what you need.” Barb corralled Carly back to her chair at their worktable. To their astonishment, Carly reached across to grab the device and touched the alphabet screen, slowly tapping out the letters “H-E-L-P T-E-E-T-H H-U-R-T” with her right index finger.
Barb and Howard were stunned. In the past few months, with the help of therapists, Carly had learned to identify images and colors, and even developed basic math and vocabulary skills. In addition, they had worked with her on fine motor skills like cutting, pasting, and drawing—all the things that should come naturally to a small child but were seemingly impossible tasks for our autistic ten-year-old.
But she had never spontaneously expressed herself or communicated feelings of any kind. Nothing that had happened in previous days would have prepared them for what they just witnessed.
At first speechless, Barb and Howard hovered over Carly as if she were waking from a decade-long coma. Howard ran upstairs in search of Tylenol, thrilled to comply with her plea for help. Carly ran behind the couch and vomited.
Howard bounded back down the stairs. They cleaned Carly up, hugged her, and cheered, tears in their eyes.
After years of isolation, the miraculous breakthrough had them floored with joy.
And now Howard was trying to recount this to us through a bad wireless connection. Feeling somewhat confused by the news, we said good-bye, agreeing to phone when we reached the hotel later that afternoon.
“Well?” I turned to Tammy as we continued driving. The other kids were silent in the backseat. Anyone who knew Carly as we did would be incredulous. Spelling independently? Words with meaning? Not Carly. How could she? She was a girl who still had toileting accidents. A child whose only
words were garbled sounds, and whose tantrums and destructive acts were her strongest skills. This is not a child who writes, we thought. This is not even a child who understands. Carly is “cognitively impaired.” Isn’t that what all the doctors had been telling us for ten years?
“Do you think it’s possible?” Tammy asked, one eyebrow cocked and a dubious smile on her face.
“I know how badly Barb and Howard want it to be,” I said, feeling both eyebrows rise. “It’s possible they’re exaggerating. Or that they helped her.” I bit my lip and tried to digest what I had just heard myself say. I’ve heard that denial is a way of coping with grief. But I also think it works when we are confronted with something that violently disrupts our worldview. It wasn’t that I doubted Barb and Howard’s veracity, but what they were telling me was as incomprehensible as learning that a relative believed to be dead was in fact alive. My heart and head raced as I played the scene out in my mind over and over.
We drove in an electrified silence. Matthew and Taryn had stopped baiting each other in the backseat of the rental car. They recognized that this was not a trivial moment and were temporarily shocked into uncharacteristic muteness.
“There must be some sort of syndrome that affects, you know, people who work closely with disabled people. Sort of a Stockholm syndrome,” I finally offered. Tammy and I trusted Barb and Howard completely, but we weren’t sure if we could imagine that Carly was writing exactly as they were telling us.
“They wouldn’t do that,” Tammy said. Or was she asking?
We drove on in a pensive quiet for a while longer. “What exactly did he say again?” Tammy asked, as if the event was slowly seeping into her consciousness. I repeated the story over and over as we picked at it like investigators exploring a mystery.
“Figures,” I finally concluded. “We’re three thousand miles away and Carly finally has a breakthrough.” But I was smiling as I thought of Carly; possibly for the first time in a long, long time.
Tammy and I had supported the therapists’ efforts to find some means of helping Carly communicate, but neither of us had much hope of Carly ever becoming proficient at any of these skills. She remained trapped in a noisy and chaotic muteness. As we watched our other children mature into their ’tween and teen years, Carly was still a mystery to us; the child we didn’t really know. One of her psychological-education reports noted that Carly seemed to have receptive understanding of about fifty words by the time she was six or seven. If that trend continued, she should have understood only about one hundred to two hundred at the point she spelled for Barb—approximately the number of words in a well-versed two-year-old’s vocabulary. We really had no idea, though, what she did and did not understand.
When we returned home from our trip, we quickly realized that this small portal into Carly’s world would be one that opened and closed, randomly and capriciously. Days would pass and she wouldn’t type a single word with Barb or Howard. And never with Tammy, her siblings, or me. In fact, it would be months before I would actually see Carly type at all, further fueling my skepticism. In my head, I knew what Howard and Barb told me was true, but who could blame me for asking why, if she could type, did she consistently refuse to do so? The following months left me in a hopeful limbo.
At Barb’s suggestion, we labeled everything in the house to help Carly learn how to spell. “We’re going to take a whole new approach to teaching her,” she said. “We need to move away from sign language, pictures, and symbols. This kid needs to type.” Barb would now shift her meticulous, painstaking approach from matching words and pictures, and coaxing tiny syllables from Carly’s mouth, to labeling her world with words and letters and forcing her to type them out. It all sounded so promising and deluded at the same time. But Barb, like Howard, has a way of proselytizing. They don’t so much suggest as tell. Both share a calm intensity and patience that is required of those who work with the disabled. But, unlike any other team of therapists we had worked with, their creativity in coming up with new solutions and ideas suggested that they never stopped thinking about Carly, even when they were off the clock.
So through the summer of 2005, stickers began appearing all over our house. Mirrors, windows, doors, and cupboards were marked, making our house look like a bizarre 3-D how-to manual. To this day, I still come across random stickers on pieces of furniture, nooks, and crannies like archeological artifacts. Barb looked for ways to make Carly use letters and words, even when she wouldn’t type. “Write out a list of choices on a piece of paper,” she told us. “Make her point to what she wants.” Over time, we realized Carly knew far more than we had imagined. Howard and Barb cooked up schemes to force Carly into the world of words. They handed her a juice box without a straw and made her point to the word straw before giving her one. Anything she wanted she would work for.
With Howard and Barb, Carly began to have occasional short conversations, tapping out one letter at a time with her right index finger. It could sometimes take an entire hour for Carly to complete a three-word sentence. But they were words. Words with meaning.
One afternoon while working Carly accidentally hit one of her therapists, Dina. When Howard explained that Dina was hurt, Carly spontaneously typed “sorry” with no help. We had been told that children with autism don’t exhibit empathy. Over time we would start questioning many things we had been told about Carly.
Was it possible there was more to Carly’s personality than we had thought? After all, Carly was autism. Autism, tantrums, and neediness. When you raise a severely disabled child, you begin to see the flaws above all else. There were momentary smiles; infrequent heartwarming acts of love, such as a snuggle and a giggle. But there was a wall that couldn’t be breached, locking her in and us out. Bit by bit, now a few stones were beginning to crumble.
After Carly had been writing for about a year, we started to see more clarity and complexity in her writing. Startlingly, for the most part, her spelling was correct, her diction and grammar almost flawless.
When Barb showed up for her session one afternoon, Howard informed her that Carly had been writing in full thoughts all day. Barb gave him her inquisitive look, her head half-turned, a slight furrow in her brow. She didn’t exactly doubt him, but she needed to see exactly what he meant with her own eyes.
So when Carly returned from the bathroom that afternoon, she took hold of her DynaWrite and tapped out, “Look I will work for food.” I think Barb and Howard fell off their chairs. Rather than a few basic words, our daughter had full cogent thoughts. Even more, she had an attitude. A colleague of mine has an adult brother with autism. We used to joke that he and Carly probably sat in their rooms at night scheming and laughing at the rest of us. Although they didn’t speak, perhaps they had full-blown dialogues going on in their heads. I paused to ponder this observation and realized we had probably not been far from the truth.
“Will you type for Taryn?” Barb asked her later that afternoon.
“No way,” she wrote.
Barb smiled at Carly’s use of typical ’tween slang. Barb and Howard pushed on, curious to see where this would go. After an explosive bout of whining and crying, Carly returned to her computer and painstakingly responded, “you are mean. Ill stop spelling. Stop. I want to play.”
When Carly couldn’t come up with anything specific to do, Barb suggested they go outside. “Outside,” Carly readily spelled.
“How about taking a drive to my house?” Barb asked.
The floodgate of words had been opened, and Barb wanted to see what else would flow forth. They climbed into Howard’s car, thinking they could contain Carly in one place and get her to write more. “I want to go Barb house for food,” Carly offered. Her teachers were eager to comply. Once on the road, however, Carly flipped out. It started with a plaintive whine and sobbing and then escalated as Carly grabbed at Howard, who was in the driver’s seat, while she was buckled in behind him. She flopped back in the seat of the car over and over, screaming and crying, throwing h
erself hard against the constraints of the safety belt.
“What’s wrong? What’s going on?” they asked over and over.
When they finally arrived at Barb’s several minutes later and turned off the car, Carly calmed sufficiently to respond.
“You need a seat belt,” Carly observed. Sheepishly, Howard acknowledged he hadn’t fastened his when leaving our house.
Once at Barb’s house, the duo couldn’t help but push Carly further to see what else she might have to say. We had already learned that for Carly, food is a great motivator. Salty snacks are king. Popcorn, French fries, crackers, even pickles are her weakness. The Ruler Supreme of all motivators was Lay’s potato chips. I think we could get her to walk across a fire pit of burning coals for a single chip.
“Carly, type five words and I’ll give you the chips,” promised Barb.
A small, sly smile seemed to cross Carly’s face.
“Five words,” she typed.
Barb and Howard burst out laughing, shaking their heads in disbelief.
“Okay, you win,” said Barb, doling out five chips.
“Just give me the bloody chips okay,” typed Carly.
“How did she learn that expression?” asked Howard in amused shock.
They moved to Barb’s den to give Carly a well-deserved break. However, when Carly noticed Barb’s husband, Barry, relaxing on the sofa with his newspaper and a bowl of popcorn, her impulsive nature took hold and she grabbed violently. “Stop,” said Barb. “If you want something, you must ask for it.” She pushed the DynaWrite in front of Carly. Carly flew into a rage and threw herself on the floor. The flopping, kicking, and crying were nothing new to Howard and Barb. But Barry, not having been calloused by firsthand experience with Carly over the years, quickly gave in to her demands and handed her the bowl of popcorn.
Carly’s Voice Page 11