Carly’s Voice (15 page)

Standing in the living room, preparing to leave, I noted the quiet of the house. A
bit melancholy, but peaceful, unlike the other facilities we had visited. Those places
were filled with the sounds of autism, as uncontrolled and startling as the birdcage
at the zoo. Though worn, this house was calm.

We drove home in silence, as we always did after the disturbing experiences that life
with Carly brought. Both of us were too gouged and raw to talk. I was haunted by the
images of Carla lost somewhere inside herself. She looked as empty as a discarded
vessel. But what if she were full of thoughts and dreams, or worse, anger? Not a something,
but a someone.

Carly, please forgive me for asking you to stay here. Please don’t hate me forever.
Please don’t feel abandoned and lose hope and start chewing your hands raw until they
need to be taped up.

My sense of desperation gave way to a new emotion: fear. Hands-gone-cold, short-shallow-breath
fear. Like claustrophobia, I felt boxed in unlike ever before.

But I could not say a word to Tammy. She looked out the window of the passenger seat,
silent. Matthew and Taryn were kids, and Carly was Carly, and Tammy was sinking, and
I had to be strong. In this moment, I had no words. And small talk would be as distasteful
as dancing at a funeral.

As I drove, I tried to force Carla from my mind, instead filling it with thoughts
about my evening routine with Carly. Dinner, then a bath, then into bed to read. After
toweling off, Carly would insist on applying a cloyingly sweet-scented skin cream,
so she could breathe in the fragrance. One dab on the front of each hand and then
the back. On each forearm and then just above the knee. Always in that order, or the
disruption to the routine would send her into a frenzy and we’d have to start again.

Then into her bed with its heavy quilt, as if the weight could stop her restlessness.
What will we read tonight, Carly?
The Gypsy Princess
,
Ramona the Pest
,
Harriet the Spy
? She sat up, hands over her ears.
Brrr. Brrrr. Brrrr. Mmmmm.
Did she listen? She didn’t run away, so I believed she did. I would stop reading
for a moment and scoop her in my arms in a bear hug, just to feel her as my child.
She was small and thin for her age. Her eyes slightly down-turned but beautiful. Her
skin fair and soft. As I held her I imagined we were having a silent conversation.
Sometimes I would whisper to her, “I know you’re in there, Carly. I know you understand.”
Though I knew no such thing.

I tried to block out the images of respite care and dreary houses and strangers watching
over my daughter. And mostly to not think about the sadness I felt when I saw Carla.
I cannot bear to think these two girls shared a similar fate. If I lathered on enough
body lotion, held her tightly enough, read loud enough often enough, could I stop
Carly’s descent?

I gripped the steering wheel, whitening my knuckles, staring straight ahead. I didn’t
say a word. My muscles tight, I sat rigidly. If you saw me like this, you would not
be able to tell what I was thinking, if I was thinking.

As I escaped into my silence, I wondered if Carly and I were really so very different.

Experts tell us that those afflicted with autism live in their own spheres. Their
universe looks odd to us, and ours is overwhelming for them. But the families with
autism also live in a netherworld. We are not a part of the autistic child’s domain,
nor are we fully a part of society. I noted that friends could pack up the kids and
take off, coming home relaxed and recharged. That would never be us. We lived life
as one giant special provision, and it felt like a force field was holding us back
from joining in.

I just wanted to be normal. Nonexceptional. Not requiring a précis, an introduction,
or an explanation. It felt like we always needed an excuse for why we preferred the
secluded booth at the back of the restaurant where Carly’s noises would go unnoticed.
Or an apology for why I was cranky or sleepy in the middle of the day. Or a reason
why we couldn’t attend an event at someone’s house for fear of Carly blowing through
the house like Hurricane Rita. Our
friends were always welcoming of us, but they needn’t have worried about our accepting
an invitation with Carly. There was nothing restful about a dinner party where Tammy
or I were on duty to keep Carly corralled—away from anything that could be stained,
broken, or mangled.

This sense of self-imposed isolation was often a topic of conversation between Tammy
and me. Once at a large family event in Boston, I looked around the room surveying
all the other guests with their children. The adults mingled, laughed, and danced.
The kids jumped around to the music and ran in and out of the crowd. We had left Carly
at home with her babysitter, as family trips without help weren’t even imaginable.
Matthew, who was twelve at the time, had left the noisy party to wait outside. He
found large crowds and loud environments overwhelming. Taryn, who
lived
for parties, was having a blast playing with her cousins and dancing. Only one out
of all five of us seemed able to jump in. Tammy and I stood at the edge of the crowd,
and looked on. We did not belong. It seemed like everything about us was just weird.
Our Portuguese water dog hated to get wet, our cat was on antidepressants for “inappropriate
urination,” and attending family events was
work
, not pleasure. I began to wonder if there was anything
not
odd about us.

We fought the slippery slope that could lead to isolation. We tried to do what other
families did. What people on TV shows and movies did. What we did ourselves, in the
years BC, Before Carly.

One summer when the girls were still small, we took the entire family on vacation
to Vermont. Another summer it was a cottage by a lake in upstate New York. We kept
to ourselves for the most part. Carly would take short walks and swim. While Carly
was still a toddler, she could fit in a bike trailer and happily doze and watch the
world whiz past. But the risk of meltdowns or food flinging kept us on guard and on
the move.

In 1999, we packed up the van and drove to Lake Placid. We
stayed in a small cluster of cabins that had the reassuring smell of pine paneling
and dampness. The screened-in porch faced a lush green yard that sloped down to a
lake. We had become accustomed to searching for venues with gradual water entries
so Carly could slowly wade in. The weather that summer was unseasonably cold, but
it didn’t stop the kids from splashing in the water and scrunching their toes through
the puttylike silt on the water’s edge. We explored the Olympic Village where Tammy,
Matthew, and Taryn rode the bobsled track that had been turned into a cart ride. Carly
dozed in her oversized stroller, so I waited at the bottom. In the evenings, we sometimes
stopped at Mountain Mist, a soft ice cream stand near town. The hand-painted signs,
screened service windows, yellow bug lights, and white-uniformed, fresh-faced girls
serving the swirls of ice cream on Styrofoam-like cones hadn’t changed in half a century.
I felt like my father, taking my family on a 1960s road trip.

I only recall one reality jolt during that week: a full-plate-toss freak-out at lunch
in a small-town luncheonette. The impetus for the outburst is of little consequence—it
seldom is. The result, however, required a hasty retreat, an apology with gazes averted,
and a large tip for the unfortunate waiter who was left with the mess.

On our way home, we drove through Vermont. My wife had heard about the Shelburne Museum
and thought it would keep our mismatched clan’s attention for a few hours. We were
encouraged by everyone’s good spirits and so attempted one of the exhibits, the large
period home belonging to the museum’s founder. With the requisite warning to Taryn
and Matthew not to touch anything, we pushed Carly up the ramp in her oversized stroller.
“You can’t bring the stroller in,” a security guard as old as the house said.

“It’s kind of like a wheelchair for her,” I explained. “My daughter has a disability.”

I had gotten used to trying to give context to those for whom
Carly was a mystery. Her legs, arms, and hands work, maybe too well. She’s
hyper
-mobile. “I think it’s better for everyone if my daughter stays in her stroller,”
I said. For a moment his rheumy eyes squinted slightly as he looked at Carly. I was
hopeful he would concede as Tammy and the other two started to walk past him.

“Sorry,” he repeated, standing blocking the entrance.

“You don’t allow disabled people in?” I asked. A hint of sarcasm.

“Strollers have to stay out,” he stonewalled.

“It’s the only way she can get around without getting into trouble,” hoping his sense
of empathy for the collectibles on display would eclipse his commitment to following
the rule book.

“We don’t allow strollers into the house,” he concluded.

I left to take a walk while the other three wandered in. There are battles worth escalating
and others worth just swearing about later.

As Carly got older, family holidays became more daunting. As we were now no longer
able to constrain her, it meant that someone had to constantly be holding her hand.
And since sending her off to play with her siblings was not an option, it meant we
all had to keep moving, like nomads. Staying home where we had a team of people to
help us seemed like a more restful option.

One summer we went with our friends the Shepherds to the mountains north of Montreal
called the Laurentians. Their two eldest children were close in age with our kids
and often played together. Their youngest was around two, and we reasoned that we’d
have similar needs, since both families had one kid that would require extra care.
“We can ask Mari if she’d be willing to come,” Tammy suggested. “She can watch over
Sam and Carly if we want to go out with the other kids for a little while. At least
we’ll be able to eat dinner without chasing Carly.”

We knew some families traveled with their nannies, but it was something I rolled my
eyes at. It struck me as bourgeois and a little
affected. However, when we were presented with the alternative of not taking a summer
vacation, or worse, taking one by ourselves without the help, it seemed like a brilliant
solution.

While not a completely relaxing week, the experience opened our eyes to the possibility
of entourage vacations. Having extra hands made getting through the day easier. Carly’s
lack of sleep meant, in fairness, we had to choose between either giving Mari extra
time off during the day to nap because she had stayed up with Carly at night or staying
up with Carly ourselves. But it was a trade-off that for us no longer seemed odd or
onerous. The reward was that I had a few beautiful photographs of Carly sitting by
the lake, gazing dreamily at the sunrise, we have memories that we still talk about,
and we got to behave like we imagined others did, if even for just a week.

The pursuit of normal means compromise. You get a vacation, but not without help.
You can sleep at night, but not relax during the day—or relax during the day but be
up at night. You can take two kids go-karting, but not the third. Almost normal.

As we had survived the two-week break and even enjoyed ourselves, we attempted it
again the following year. This time, Howard joined us as Carly’s one-on-one camp counselor.
He took her on paddleboats, horseback riding, and go-karting. His job was to keep
her in constant motion while we relaxed. At twenty-three years old, he didn’t seem
to mind.

On one of the first afternoons, as the adults were hanging out by the lake and the
other kids were building cities out of sand, Howard and Carly jogged down the lawn
toward us, with Carly in her swimsuit. We had not known Carly to be much of an athlete,
but Howard had been taking her to community swim, and she seemed to enjoy it. I watched
in horror as Carly darted down the dock several hundred yards
ahead
of Howard. Before anyone could move, Carly ran off the end of the dock and jumped
into the cold lake.

Tammy and I jumped to our feet with a gasp as Howard calmly walked down the dock.
I looked on in utter amazement as Carly crudely dog-paddled alongside the dock back
toward land.

“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.”