Carly’s Voice (39 page)

I wont be able to play the game

I will end up scaring the other kids and I will feel bad inside and you will make
me feel this way for a test

How does that help me?

Don’t tell me it shows you what level I am at because you know what is going to happen

I try so hard to stop my behaviors but it is too hard

I can’t walk by food without having a fight with my self

You want me to spell but it takes a lot of concentration just to hit one letter on
the keyboard

It is so hard to be me

And you would not even understand

I wish I could put you in my body just for one day so you can feel what its like

All my friends are double my age because it’s hard for me play with kids without scaring
them

I was asked why I like MSN so much. It’s because I can talk to people without them
seeing me hit the table or screaming

I want to clear something up. Just because I am hitting the table or screaming does
not mean I am not reading or listening.

I wish I could go to school on MSN.

I could do the work but no one would have to be distracted by my behaviors.

And I could pay attention more to my work

I hate when people ask me to do things that they already know I can or can’t do

Like ask me to spell “chips” for a chip

It makes me feel like I am stupid

“spell your name.” Good have a chip

“spell your name.” You did not get it right I guess you are not smart

How does that make you feel?

My mom asked me a question that no one ever asks me

What do I want?

I want not to feel what’s happening in my body

I want to stay at home

I want to be like every other kid

I cant sit for long times or even walk past an object with out having fights in my
head

I know I can’t take the object but my mind is fighting with me

I want to be able to go to a school with normal kids but not have to worry about them
getting upset or scared if I can’t help myself and I hit a table or scream

I want to be able to read a book by myself without having to tell myself to sit still
and not close the book and follow each word and concentrate

I want to sit at a table with my mom and dad and not be worrying about what my body
might do that I might not be able to control

I want to be able to talk to people and have them understand me the first time

Not respell over and over again

It’s too hard

What I want is to have some one programming for me that knows what I am feeling inside

What I want is to be like taryn

But I cant

Because I am Carly

Carly’s words were a painful reminder that no matter how much effort it took for us
to manage her life, it took twice as much for her to live it. There was a limit on
how hard we could push her, knowing the magnitude of her internal struggle. But it
was always hard to tell where her OCD left off and either her autism or teenage manipulation
began. I didn’t want to misconstrue gripping pain for teenage stubbornness.

The assessment was scheduled and canceled several times before we finally scrapped
the idea. No one had the heart or stamina to force the issue, and in the end, Carly
could control the agenda by just not typing.

In fact, Carly’s OCD
had
been getting worse since the incident
at Cedarview. The outside world only sees the manifestations of autism and OCD. I
could not imagine what it looked like from the inside, and she had not been able to
articulate it very clearly. OCD is an anxiety disorder, her doctor told us. The first
step is to bring the anxiety down. Despite our trying various medications and therapy,
however, it continued to be her prison.

Some months later, Carly would give us a peek into what lay underneath her flailing.

“I feel the pain course through my body and its unbearable,”
Carly complained when Barb asked her to discuss her tumultuous outbursts she had
been having at school and home.

“Does hitting your head make you feel better? It’s very dangerous. You can injure
your skull, your brain,” Barb said, referring to Carly’s tendency to flop to the floor
or stand next to a wall and bang her head. Rooms in our house were pockmarked with
dents from outbursts that came on quicker than we could restrain her.

“It helps me cope”

“What can we do to help?” Tammy interjected.

“Back off and let me be. Most of the time I am having a power struggle with myself.”

“What does that mean?

“I tell myself to stop but I can’t. Have you ever yelled at your boys to clean up
their room but they don’t. It’s like my body. It does not always do what I want it
to. It feels like my insides are being ripped out of my body and the longer I don’t
do it or get it, the more it hurts. The pain is unbearable. That’s why I cry and bang
on the floor. I wish it would just go away. I try the breathing [exercise] but it
doesn’t work. I act up because I feel so trapped inside myself. I don’t spell not
because I don’t want to. I just can’t get myself to and I act out because I can’t
explain or communicate what I need.”

As Carly’s therapist suggested, Tammy and Barb reminded her of the relaxation techniques
she could use to convince herself that her mind was playing tricks on her. Given the
severity of her
outbursts, however, this remedy felt like we were putting a Band-Aid on a compound
fracture.

It seemed to me that Carly’s existence was some grand-scale Whac-A-Mole game. No sooner
would we tackle one challenge, the next popped up. I was beginning to agree with Tammy;
it wasn’t Carly’s autism or even her lack of voice that was the real trouble—it was
her obsessive-compulsive disorder. It plagued her every waking moment and inflicted
physical pain.

“It’s not fair, I know,” Tammy told her.

“You’re telling me,”
Carly replied.

Howard had become adroit at helping Carly de-escalate from her outbursts. He could
quickly spot the telltale signs, such as Carly’s back going rigid, her bleating
uh-huh
sounds, and the possessed look in her eyes. If we were home, he’d rush her down to
the family room, where she would lie on a thick foam massage mat that would vibrate
when activated. I had created meditation playlists for her iPod, and the sounds of
pan pipes and the perfume of scented candles wafting through the house indicated Carly
was in the basement attempting to re-enter the stratosphere. The frequency and intensity
of Carly’s obsessive bathroom ritual in particular was driving me crazy—and it was
growing. By this point in Carly’s life, I had hoped to be well beyond this kind of
struggle, but I was cast as a supporting actor to this hellish drama, particularly
in the middle of the night.

“Go by yourself, you’re a big girl. You have been going to the bathroom by yourself
for seven years,” I would complain to her. “You don’t need me. Just go to the washroom
and get back in bed,” I’d say, my temper rising.

But no.

“Dad you do it,” she seemed to say. “Dad you do it. Dad you do it. Dad you do it.
DadyoudoitDadyoudoitDadyoudoitDadyoudoit DadyoudoitDadyoudoitDadyoudoitDadyoudoit
DadyoudoitDadyoudoit
DadyoudoitDadyoudoit DadyoudoitDadyoudoitDadyoudoitDadyoudoit DadyoudoitDadyoudoitDadyoudoitDadyoudoit
DadyoudoitDadyoudoitDadyoudoitDadyoudoit DadyoudoitDadyoudoitDadyoudoitDadyoudoit
DadyoudoitDadyoudoitDadyoudoitDadyoudoit DadyoudoitDadyoudoitDadyoudoitDadyoudoit
DadyoudoitDadyoudoitDadyoudoitDadyoudoit DadyoudoitDadyoudoitDadyoudoitDadyoudoit
DadyoudoitDadyoudoitDadyoudoitDadyoudoit.”

On one occasion that spring, after our third excursion to the bathroom, I helped her
back to bed and sat on the edge, my back turned to her. I heard her breathing deeply
to calm herself. “Oysh, Carly. I know you’re fighting it. Sorry I scolded you.” How
often had I said that over the years? Then I added, “I know you’ll win one day.” My
back was turned to her. I felt a soft, small hand on my T-shirted shoulder. I thought
she might be comforting
me
and I swallowed hard.

Without a clear understanding of Carly’s academic strengths and deficits, the staff
at the Learning Center continued to take a hit-or-miss approach to a grade-appropriate
curriculum, mixing behavioral therapy and academics. It was not a perfect situation
but the best we could do at the time. Tammy’s lymphoma had recurred and she was going
through another six months of treatment and all the anxiety that comes with the condition.
“It isn’t as much fun this time,” Tammy deadpanned.

Other than the placement test, Carly had rarely put up resistance to the decisions
we made regarding doctors, therapists, tests, and activities. She went along with
whatever plan we had come up with without complaint. School, however, was a different
matter, and as 2008 wore on, she took a scorched-earth approach. Carly turned a deaf
ear to my entreaty to work hard in the hopes that one day she
could
go to public school.

“Dad does not know what he is talking about,”
Carly griped to Barb
and Howard one afternoon. She had been in a cranky mood all afternoon and Barb was
trying to understand what set it off.
“I know I don’t know everything,”
Carly continued,
“and he is right, I am not trying hard at school. But I said many months before I
did not like the Learning Center. But he puts me there any way. All the kids at my
school are younger then me. I want friends. I want to be challenged by kids, not by
silly staff. I want to be with typical kids.”

“Whoa, Carly. You have a chip on your shoulder. Dad is trying to get you a good education,”
Howard rose to my defense.

“I do not have a chip on my shoulder. I want him to get it. It’s always his way. He
says I have influence, but I don’t. He’s got to stop. Or I’m going to stop caring.
He’s never seen the school. He’s talking out of his ass.”

If Matthew or Taryn had spoken to me that way, they would have spent the rest of their
teenage years in their room. I cut Carly much more slack, just happy that she was
willing to voice her opinion at all. Besides, I was more amused than offended with
her proper use of slang. And she may have had a point—what teenager wants to go on
field trips with seven-year-olds? Carly saw her twin sister Taryn styling her hair,
painting her nails, and going out with friends while her time was spent in the company
of children, being monitored and cajoled by therapists. It
was
unfair. But Tammy and I saw no other option, and we felt we had already run a marathon
when it came to providing the right schooling for our daughter. So we steeled ourselves
to Carly’s stubbornness and left her in the patient hands of the staff.

Although we didn’t have the fortitude to begin exploring new schools for Carly, we
did finally get around to contacting Ashley Evans, an occupational therapist Barb
had been telling us about for a few years. Ashley would be able to help Carly master
some self-care skills she found challenging due to her motor-planning issues. We had
always wanted to bring Ashley onto the team, but it was one more task
that kept slipping to the bottom of an endless to-do list. As a teen, Carly wanted
to be able to do some of the things other people could do naturally—like tie a shoe,
fasten a bra, or make cookies. Ashley worked with Carly to painstakingly teach her
muscles to cooperate with her brain by breaking each step down into minute increments.

Ashley’s secret weapon, however, was her yoga training. At the end of her weekly session,
Ashley spent twenty minutes teaching Carly basic yoga poses and meditation. Tammy
and I fully supported any means of relaxation that didn’t come out of a prescription
bottle. I came home some evenings to find the basement lights dimmed, the scent from
an aromatic candle wafting through the house along with the sounds of new-age music.
I could hear Howard, Ashley, and Carly’s short, raspy chants of “ommmmmm.” A few months
later, the OT introduced Tibetan singing bowls to the routine. I just looked at Tammy
and shrugged, happy to have another inventive and caring spirit working with Carly.

Although Carly’s scholastic progress stalled during 2008/2009, her emotional progress
was undeniable. After our successful trips to LA, we began including Carly in the
family’s extended trip to Cape Cod for our summer vacation. Carly had spent July at
Extreme Sports Camp in Boulder—a camp for teens on the ASD spectrum. There she amazed
all of us by learning to rock climb, knee-board, traverse a ravine on cables, and
zipline; yet another breakthrough Tammy and I witnessed via video. The week after
returning from camp, the family—Howard and his wife and toddler son in tow—headed
to Cape Cod for two weeks. The Cape had a magnetic pull on my family since my childhood,
and Tammy and I had been spending time there together since we started dating. We
wanted Carly to experience the Fluffernutter-soft sand dunes and salt air of the
beach community we visited each year. Although we stay active when we’re there, Cape
Cod has a sleepy quality I wished I could bottle up for the remaining fifty weeks
of the year.

Our friends, the Gillmans, had been joining us for the prior five years, so each summer
we rented the same large home. The sprawling colonial was host to family, visitors,
dinners around the huge dining table, and a lot of teasing. With Carly maturing and
Howard’s help, we could now have Carly be a part of this tradition.