Carly’s Voice (24 page)

“Anything else you want to see?”

“Ground Zero.”

Now I was really stunned, but Taryn just smiled in sort of a knowing way, leaving
me to wonder if she and her sister had some sort of unspoken connection.

“What is Ground Zero?” I asked.

“Plane crashed.”

“How did the plane crash?”

“Bad men.”

We were experiencing firsthand some of the knowledge shock that Mel saw routinely
at Cedarview. Of course, the news items such as the 9/11 terrorist attacks were ubiquitous,
but we couldn’t conceive, given how Carly behaved, that she was aware and processing
news events.

Carly went on to say,
“I want to go to the fire ellen is going to.”

“I don’t know what that is,” I responded, eager to see where she was heading.

“tomorrow she said she wanted to go to the fire,”
said Carly.

“She means Ellen DeGeneres,” Howard clarified. “She was watching her show this afternoon.”

“Hmmm. What fire did Ellen want to go to?” I asked. “Oh. Do you mean the big forest
fire burning in California? We are not going to be near there.”

“we are going to the US, rite?”

“Yes, we are. But it’s a very big country. We are going to be on the East Coast and
the fires are on the West Coast.”

“but ellen going to the fire”

“Yes, Ellen lives in Los Angeles, which is in California.”

“we should make afire in NY.”

Was she joking? Confused? I know I was. Conversations with Carly continued to be murky
and I sometimes felt as if I were in a half dream state.

“No, you don’t understand. The fire in California is burning down buildings, forests.
It’s a very BAD thing.”

“then why is she going”

“She is probably going to try to help people there whose houses have burned down.
She will go and try to raise money for them and to cheer them up.”

“can i give them money”

“You are so sweet, Carly,” I said. “We can see if there is a charity that is taking
donations and we can make a donation. Would you like that?”

“yes.”

I gave Carly a tight hug, an act we called “squeezie hugs”—more from the side than
front, which was the only way she was willing to do so. I felt a rush of pride mixed
with surprise at her empathy and generosity of spirit—a trait not found in teenagers
in general and supposedly not in those with autism specifically. I imagined she learned
altruism from her big brother. Matthew had been unusually charitable from a young
age, and seeing how Carly had been
absorbing her surroundings long before she could write, it wasn’t a stretch to think
she picked up on some of her sibling’s good qualities. After Hurricane Mitch in 1998,
Matthew held a fundraiser in his fourth-grade class. I think it was a bake sale. By
the time he graduated high school, he had done a series of annual events for causes
such as muscular dystrophy (which was slowly paralyzing his best friend), various
natural disasters, and autism, earning him the Governor General’s award for community
service. Of course, as his parents, we were moved. But clearly at least one of his
sisters was also paying attention.

In addition to Carly’s earnestness, I began to see a refreshing, teenage vibe in her
conversations. Along with their introspective chats, Carly and Mel struck up the same
kinds of conversations friends routinely have.

“Today is your birthday, Mel,”
said Carly.

“Yes, I am 29. Do you think that’s old?”

“Yes.”

“Well, I don’t feel any older than I did yesterday. What did you do in Toronto this
weekend?”

“Went to the Science Center.”

“Did you see anything cool?”

“Yes”

“What was your favorite part?”

“Iiked the static ball.”

“Me too! Did you try it out or did you watch other people?”

“I tried it.”

“Did your hair stand up?”

“Yes.”

“What else would you like to talk about, Carly?”

“Your birthday.”

“What do you want to know?”

“Are you going to have a party?”

“I wish! Maybe I’ll go for dinner with my boyfriend somewhere. I’m not really sure.
Do you think I should have party?”

“Yes.”

“What kind of party?”

“Dress up.”

“Like a costume party?

“yes.”

“What should I dress up as?”

“A rabbit.”

“Kinda like Elle Woods.”

“Her outfit was awesome.”

“You’re right. It was pretty nice.”

“What would you dress up as?”

“Wesley Snipes. Do you like my ring?” Mel continued.
“Yes”

“Do you know what it means?”

“It means your going to get married.”

“Do you want to help me research wedding stuff on the Internet today?”

“Sure.”

“What should we look up?”

“Wedding dresses.”

The two sat, side by side, at the cluttered desk in a disused office on the ground
floor of the house. The staff had put aside work space where Carly could leave her
computer and academic materials, shielded from the maelstrom created by eight young
adults living with autism under one roof.

Mel searched wedding dress sites and Carly glanced around the room, her eyes occasionally
resting on the computer screen for an instant or two. Except for Carly’s occasional
squawks and table slaps, one could have mistaken the two for close friends or sisters
sharing an intimate moment. On occasion Carly covered her ears and made Carly noises.
MMMMM. MMMMMM WAH.
In time, Carly would inform us that she was able to hear and listen, despite these
irritating sounds.

“Which dress do you like best, Carly?”

“First.”

“’Cause it’s the prettiest?”

“It’s okay”

“Just okay? Is it too boring for you?”

“Yes”

“What do you like? Big fluffy dresses like a princess?”

“Yes”

“What do like you better, sparkles or lace?”

“Sparkles.”

“Me, too! Hey, Carly, what’s your favorite band?”

“Greenday,”
responded Carly.

I hadn’t realized she took any interest in bands, much less had a preferred group.

“What is your favorite song?”

“Time of Your Life.”

“What is something you are scared of?” Mel asked, changing gears again. Whenever she
sensed a conversation stalling, she would pepper Carly with questions and push her
to stretch.

“I am scared of being alone.”

“I am scared of being alone, too, sometimes! I also sometimes am scared that people
don’t like me.”

“I like you.”

“Thank you, Carly. I like you, too. If you could go on vacation where would you go?”

“San Francisco Zoo”

“Remember when we went to the zoo together? What was your favorite animal there?”

“The orangutan”

I thought back to Dr. Stephensen telling us that Carly was climbing a ladder. How
far up she would go was the great unknown. I hadn’t seen the doctor in many years,
since we had moved on to other specialists who focused on autism specifically. Carly
was indeed climbing up that ladder. And rather than a step stool, it seemed to be
of the extension variety.

But because of Carly’s inconsistent willingness to write and inability to control
her outbursts, it was often hard to measure where on that ladder she was standing.
Her therapists would read magazines, textbooks, and newspapers to her. Or they might
watch TV and listen to the radio, even for a few minutes at a time. Carly would rock,
often hands over her ears—particularly right hand to right ear—making humming or mooing
noises. The staff persevered, never sure what Carly was retaining or what she was
thinking. When Mel got her chatting, however, we learned she had near-perfect recall
of facts. In fact, her knowledge appeared to far exceed the materials they covered
in their lessons.

“Mel you are boring,”
Carly complained.

“Why?”

“Cause you make me work.”

“Okay, well, working is a good thing, right?”

“No”

“Why do you say that?”

“Are people content working?”

“I think some people like their jobs and some people don’t. That’s why it’s important
to figure out what you like to do.”

“ok, but do you like your job?”

“I love my job. I really liked taking psychology in university, but sometimes, to
get to where I wanted to be, I had to do things I didn’t like, like math. I hate math.
Is there anything you like about working?”

“I make a recipe.”

“Anything else?”

“I like talking on MSN”

“What else?”

“I like reasoning”

“What don’t you like?”

“I hate Thinking Basics,”
she said, referring to a textbook Autism Resources had her working on.

“Why?”

“it’s too easy.”

“I agree. I have harder Thinking Basics books at home. Should I bring them to try?”

“No”

“What about the sexuality program, do you like it or hate it?”

“Mel, I know about sex.”

“I know you know about sex. I don’t think you get it, though.”

“I do”

“Then if you get it, let’s do a pop quiz. Name three types of birth control.”

“Pill. Condom. Diaphragm.”

“How does the birth control pill work?”

“it tricks your body into thinking it’s pregnant.”

“Okay. Let’s talk about a recipe to make next week,” Mel said, sensing Carly’s teenage
discomfort. “You tell me the ingredients and method, and I’ll bring the ingredients
with me next Thursday and we’ll cook in the kitchen.”

“I want to make spaghetti”

“Carly’s famous pasta.”

“tomato sauce. Noodles of any kind. Mushrooms. Nice peppers. Garlic 1 large clove.
Parmesan.”

“Awesome. I’ll bring the ingredients and we’ll make it next Thursday for lunch. What
should we do now, academics?”

“Academics.”

“Okay,” said Mel taking out the science textbooks they had been reviewing. Although
not following a specific lesson plan, every day they studied from junior high–level
material. “What is cell theory?” Mel asked.

“The cell theory states that the cell is the smallest unit of living material,”
Carly responded.

“What is serotonin?” Mel read from the text.

“It’s a neurotransmitter.”

“And what is dopamine linked to?” Mel asked her.

“Alzheimer’s.”

After receiving the latest installment of their weekly discussion, I called Mel. “Is
this for real?” I asked. I seemed to ask that frequently where Carly was concerned.
“She sounds more grown-up than Matthew!” I had an ear-to-ear grin.

“Yeah, she gets it,” Mel said. “Problem is she won’t do the work consistently, so
it’s hard to see where she’s at.”

Carly was showing us a stubborn side, refusing to do work she felt was too easy or
beneath her and making it virtually impossible to determine a baseline on which to
create a lesson plan. Lacking a clear trajectory, Mel and the team did their best
to cobble together an eclectic range of topics to keep Carly attentive. This left
me with the extreme ends of emotion: excited about her intelligence and frustrated
by her inconsistencies.

“If you were going to university or college, what would you want to major in?” Mel
wanted to know.

“Psychology,”
Carly answered. I mused at how she had grown from wanting a job in a bagel store
several years before to the more challenging and sophisticated goal.

“Okay. What kind of stuff would you want to learn about in psychology? Do you even
know what psychology is?” asked Mel.

“the study of human behavior,”
Carly seemed to say with an eye roll.

“How do you know all this stuff?” Mel asked, genuinely perplexed.

“Look Mel, I’m an academic genius,”
Carly responded.

We all laughed at the attitude that was emerging in Carly’s voice. From within the
chaos came a trickle of strength and self-confidence that had to be nurtured somehow.
What might be chided as arrogance in an adult we welcomed gladly from our child.

“Ha ha,” replied Mel. “I know—but seriously, you weren’t born with all that info in
your head. You had to learn it somewhere. How did you learn?”

“I read.”

The truth was that Carly never read on her own. She lacked the fine motor skills to
hold a book and turn the pages. Furthermore, she was more likely to stim or rip a
book apart if left with it unsupervised, so it was unclear to me how she was obtaining
this knowledge.

“How long does it take you to read a book?”

“A moment,”
Carly answered. Years later we would learn this was no overstatement. Carly had an
uncanny ability to glance at a page and respond to questions of comprehension with
90 percent accuracy at times.

“How do you remember all the facts in the book?”

“I just do.”

“Can I ask you, do you read a lot about autism?”

“Yes.”

“You must have read about applied behavior analysis?”

“Mel i know ABA”

“Okay. You know that with your knowledge, you could become a psychologist working
on autism research? How come you never told your parents or Howard or Barb any of
this stuff you know? Do they know you know all this stuff?”

“They love me.”