Carly’s Voice
Page 16
(10:54:52 AM) Carly says:
good
hoy
my sister
(10:56:58 AM) dad says:
Taryn? she is at camp still.
(10:57:34 AM) Carly says:
miss her
(10:57:43 AM) dad says:
you will see her next month. she is staying at camp for two months this year.
(10:59:24 AM) Carly says: mel needs to give me s
r
chr
mel please
(11:02:26 AM) dad says:
what do you need? i dont understand.
(11:02:53 AM) Carly says:
cheesie
(11:03:35 AM) dad says:
ask mel for cheesie.
(11:06:12 AM) Carly says:
today my sister starts camp
(11:06:28 AM) dad says:
your sister has been at camp all month. but today is what’s called “visitors’ day.” Mom went up to visit Taryn at camp today. then Mom will come get you tomorrow.
It was a midweek visitors’ day this year and Tammy drove up with the mothers of several girls attending the camp, staying overnight at a lodge nearby. I never knew how much information to give Carly. Not because I questioned her comprehension. I now knew she heard and understood everything. But I was becoming acutely aware of how much she did know. Even broaching the subject of Taryn attending camp in Algonquin Park and spending time with her mother during visitors’ day while Carly sat in an air-conditioned house working made me sick with guilt.
(11:07:58 AM) Carly says:
are you going
(11:08:14 AM) dad says:
No. I am working today, and then going to the airport to pick up Matthew. Matthew was away for a month also. he will be home this afternoon. he wants to see you tomorrow too.
If possible, I now felt worse having to remind Carly that Matthew was attending a summer school program in Europe. Talk about the haves and have-nots. Usually the two don’t exist so closely in the same family.
(11:10:29 AM) Carly says:
he wont remember me
Was she being literal or ironic? Understanding nuance would be one of the toughest challenges of chatting with Carly. And it wasn’t like I could quickly ask, “Are you kidding?” without adding suffering to her already laborious efforts of typing.
(11:10:46 AM) dad says:
what do you mean!! of course he remembers you. he loves you. he has asked about you while he was away!!
(11:13:10 AM) Carly says:
mel trys to get me to type
(11:13:24 AM) dad says:
yes. because the more you type, the better you will become at it. and then you can type all the time so we can understand you.
(11:14:04 AM) Carly says:
very hard
(11:14:07 AM) dad says:
i know. but i promise you, it will get easier. now, i am a very fast typist. but i did not used to be!
(11:15:25 AM) Carly says:
say md
no
(11:16:07 AM) dad says:
really. if you type every day, you will become very fast. and it will be like speaking with your voice.
(11:18:07 AM) Carly says:
say really mel really
(11:18:28 AM) dad says:
what do you mean? i didnt understand you. you want me to tell Mel something?
This was all getting too Fellini-esque for me.
(11:20:18 AM) Carly says:
mel needs to take me to you
(11:20:44 AM) dad says:
you miss me? i will see you tomorrow afternoon. today i need to work and then get Matthew. sorry Carly. but it wont be long until i see you. what else are you doing today?
I hated when she asked to come home. It made me feel like I had swallowed a bowling ball. I hoped she would go off on another tangent.
(11:21:43) dad says:
are you still there? do you want to talk anymore?
(11:23:56 AM) Carly says:
mel needs new cars
Whoosh. Next topic.
(11:24:09 AM) dad says:
really? is her car broken or just getting old?
(11:26:44 AM) Carly says:
mel yes she started today
(11:26:56 AM) dad says:
she started what? looking for a new car? or you mean the car started today?
(11:27:39 AM) Carly says:
working
because she missed me
(11:29:12 AM) dad says:
yes! while you were at camp last month, i’m sure she missed you.
(11:30:10 AM) Carly says:
i am happy
(11:30:29 AM) dad says:
i’m glad. You are more comfortable at Cedarview than at camp?
(11:32:32 AM) Carly says:
mel really needs a job
(11:32:44 AM) dad says:
you are so funny. Mel has a job! she works with you, doesnt she??
(11:33:22 AM) Carly says:
just kidding
(11:33:31 AM) dad says:
you make me laugh! you have a good sense of humour. i think you are happier now that you are not at camp. are you able to sleep better?
Carly had spent a few weeks at an overnight camp and had just returned to Cedarview. Camp Kennebec was an integrated setting with some kids struggling with a variety of disabilities and other “typical” campers living alongside them. It was an imbalanced justice, but we tried to give to Carly some semblance of what we offered Taryn and Matthew. In the past, she seemed to enjoy her experience there, but this summer she hit a wall and spent most days crying or resisting all efforts to get her engaged. I finally had to pick her up a week early and bring her back to Cedarview.
(11:34:40 AM) Carly says:
her car is ugly
(11:34:50 AM) dad says:
dont be mean! i’m sure Mel’s car is fine! it only has to get her from one place to another.
(11:35:30 AM) Carly says:
pretty much
(11:35:51 AM) dad says:
you didnt answer me, are you able to sleep better? i hope you are able to sleep at home tomorrow....
(11:36:12 AM) Carly says:
yes
really
(11:36:46 AM) dad says:
oh good. Carly, I need to go soon. I have a meeting for work in a few minutes. but then when i get home with Matthew later, i will turn on my computer again. Would you like to speak with Matthew today?
(11:38:12 AM) Carly says:
got mel real
upset
(11:39:01 AM) dad says:
why was she upset? because you made fun of her car? ha ha.
(11:39:16 AM) Carly says:
yes
never make fun
(11:41:11 AM) dad says:
thats right. you shouldn’t make fun. did you apologize to her?
(11:42:09 AM) Carly says:
bye i love you
At least this farewell had more optimism than her typical “I’m done”; that had a fatalist quality that made me uneasy.
(11:42:14 AM) dad says:
bye carly. i love you too. and i will see you tomorrow.
Although the conversations had a loopy quality, I was grateful for the chance to get to know my daughter, albeit from afar. One of the most heartwarming emails read, “hi dad. it’s me carly. can we go for a walk just you and me. can we talk on msn [instant messaging]?”
Yes, Carly. We can talk and talk and talk. As much as you want.
Finally.
14
A Roar Is Not Just a Roar
Arthur started to circle her. Arthur’s head turned to Hooowie the owl. His mouth opened and said, “You stupid owl. This is a puny little girl.”
The girl moved her head slowly and said, “Who are you calling puny?”
Every one around her was in shock. See, as you know humans never—and I mean never—are able to understand what we say. And here is a human that can.
Arthur s
tared into her eyes. He turned to all of us not with a look of shock, like what we all had on our face, but with a look of satisfaction. He said in his deep voice, “The prophecy has come true.”
We could not believe our ears. I could not take it any more. I stood up as tall as I could and said, “Just because a human can hear what we can say does not mean that she is the chosen one.”
Arthur whipped his head around. His eyes opened as big as my body. His mane shone bright in the moonlight and then he said in only the voice a lion can use, “Carlito are you saying you think she is not the one?”
I tried to stand up taller but it’s hard when your legs start to tremble and your heart beats so fast that the rest of your body starts to shake. But I managed to stand my ground and look at Arthur straight in his eyes and say, “Yes that is what I am implying.”
I could not believe it. I, a gecko, one of the smallest creatures in the jungle just looked the king in his eye and told him off.
—Excerpt from The Elephant Princess
“Carly is becoming more human,” Taryn said to Tammy, missing the irony that Carly lived at a farm half the week. There was no trace of cruelty in Taryn’s observation; she was making a blunt observation. In fact, Taryn had always been uncannily perceptive. Several years earlier, when she was around nine years old, Taryn and Tammy were running errands at a shopping plaza frequented by the elderly Jewish population in the neighborhood. “A lot of those women are really educated, you know, Mom,” Taryn commented upon seeing a young Filipino woman escorting an old woman with a walker. She commented pensively, “They come to this country to forge a better life for themselves and end up holding an old Jewish lady’s hand.”
Taryn’s comment referred to the fact that Carly was becoming more expressive and engaged than she had been during the twins’ first decade together. The conversations with Mel went from awkward and simplistic to colloquial and, at times, heartfelt. Their dialogue became a dominant topic of conversation in our household. Within a few months of meeting Mel, Carly’s conversations became more mature and introspective.
In the late summer of 2007, we were planning a trip to New York City to see a neurologist about Carly’s inability to speak. The doctor was noted for his work with kids with autism. Tammy and I were still convinced that there was a physiological glitch we might uncover, one that if cured could help Carly both speak and be less hyperactive.
Tammy, Carly, Taryn, and I were going to make a weekend out of it, and we asked Carly what she’d like to see in the city, not sure if she was even aware of the sights of Manhattan. Carly was home from respite, and after dinner, we sat at the kitchen table, Taryn lounging like Cleopatra on the cushions that padded the window seat of the bay window. “What do you want to do in New York?” I asked Carly.
“The lady with the torch,” she replied.
“How do you know about the Statue of Liberty?”
“I know stuff. The Zoo. Will Matthew be in the cage?”
This was the beginning of what would become a long tradition of Carly ribbing her brother about being an ape. Generally it accompanied a jab about his smell, something I have never noticed, but a scent that Taryn described flatly as “boy.”
“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?”
&nb
sp; “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.