Carly’s Voice

by Arthur Fleischmann

  [3:53:55 PM] Carly says:

  no

  [3:54:23 PM] Arthur says:

  if you won’t have a conversation and listen to me, then i cannot help you. i need to explain something!

  [3:56:05 PM] Arthur says:

  tomorrow’s session at the school is what’s called an assessment. it is Marion and Claire’s way of seeing what the best way is for you to learn. then we can figure out what school program will work for you.

  [3:58:46 PM] Carly says:

  ok they can do it here. i dont want togo to the school

  [4:02:25 PM] Arthur says:

  i understand that. but they cannot do the assessment in our house. we cannot ask 5 or 6 people to come over just because you don’t like to see other kids with autism. and Carly, I think you are being selfish—you don’t want other people to avoid you because you are autistic!

  [4:05:29 PM] Carly says:

  why not we have done it beforeeeee. i never ask for much and i am askinggg

  [4:26:34 PM] Arthur says:

  I know, you do not ask for much. you are not a greedy person. If you really refuse to go take this assessment, we will not make you. But, if you do not do the assessment, we cannot figure out what kind of schooling you are capable of. So where does that leave us? That is why we are doing the assessment.

  are you still there?

  [4:34:23 PM] Carly joins conversation [4:36:51 PM] Carly says:

  i can t work in a sad place.

  [4:37:44 PM] Arthur says:

  you will be in a class room. i think if you have a good attitude, you will do fine. and then we can discuss your options for education. but this is an important first step

  [4:43:06 PM] Carly says:

  it’s just too sad for me to go I will cry

  [4:45:10 PM] Arthur says:

  why will you cry? you will be with a boy and a girl who are your age. They do not have autism. you will work with them.

  [4:49:07 PM] Carly says:

  i will still hhhear them

  [4:49:39 PM] Carly says:

  iiiiiiits sad

  I could see this would go on forever. “Maybe she should be a litigator,” I told Tammy later. “She’d just wear the other side down till they were like, ‘Fine! I’ll pay anything, just please let me out of here.’”

  Seeing that she wasn’t getting anywhere with me, the next day Carly sat down at her computer with Howard and Barb and drafted a letter we later termed the rant. It was directed at the program director of her school, but I think it was more of a cathartic explosion of pent-up emotion. In her note, she continued to refuse assessment, but also gave us a better understanding of why. Teens are often a mystery, but when we could get Carly to open up, she gave us excellent perspective. Her note read in part:

  I do want to go to school but I cant

  Its not that I cant do the same work as all the other kids

  I went to school before and even did well on tests

  But I could not stay in class because of all my behaviors

  I was hard for me to sit in the class without banging or screaming or standing

  I tried so hard to control it

  But it is too hard to do when I need to spell and do other things at the same time

  My dad said that is why we see the doctor in the hospital she is trying lots of medication to see if she can help me

  You say you to want to help me

  But how can you when you don’t know what its like to be me

  You don’t what it feels like when you can’t sit still because your legs feel like they are on fire

  Or it feels like a hundred ants are crawling up your arms

  How can you help me when you don’t know?

  My dad and mom say that every one takes tests to help let people know what level they are at

  But I have taken lots of test and I know what I can and cannot do

  You want me to be in a room with three kids and concentrate on playing a game I probably cant do in the first place and at the same time try to control my behaviors

  You don’t have to be smart to know what is going to happen

  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 w
ould 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 DadyoudoitDadyoudoitDadyoudoitDadyoudoit 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.

  Carly was thrilled to hang out with the Gillmans’ kids, who were seventeen and nineteen, and Taryn and Matthew. Howard, true to form, kept them hopping from parasailing to Ski-Dooing, making my credit card sweat. Tammy was recuperating well from her cancer treatment and found she had the energy for long bike rides—which the adults were keen on, the kids not so much. The town we stay in had preserved its sweetness without being cloying. Friday night there were concerts at the band shell in town—a main street lined with centuries-old inns, the Ben Franklin Five and Dime, a few pubs, and an ice cream store on every corner. It was one of those perfect holidays so memorable it feels like a physical possession.

  As the late summer evening sky went deep purple and the parents sat on the back deck talking, our kids crowded around the dining room table to play Monopoly. Carly engaged in banter with her brother and our friends’ son, who was one year older than Matthew—playfully flirting.

  “Would you have imagined this five years ago?” Karen asked, having known us since Carly was an unstoppable swirl of energy. It was a rhetorical question.