When Tammy and I went to meet Darlene, she enthusiastically gave us a tour, pointing out plans she had for improvements that would enable Carly to have room to work with her therapists, a fenced-in backyard, a deck, and her own bedroom and bathroom. Darlene had large, serious eyes and a demeanor that suggested she knew the drill. But along with a tough exterior, she showed tremendous empathy for Carly’s situation and a keen interest to be more than just a landlord, but a mentor as well. Darlene had two grown children of her own, which I found somehow reassuring.
The school and respite plan looked perfect on paper. If I could compartmentalize the raw emotion of handing my child over once again to a complete stranger, then this arrangement looked plausible. A good thing, too, because it was the only option we had. A move like this would require a final stamp of approval from Dennison Children’s Services, the agency that had been funding Carly’s respite care—a stroke of a pen, we were assured. After a flurry of emails, phone calls, and meetings to review the proposal, Dennison Youth Services granted consent.
Carly had been home for three weeks now, and already we were feeling the strain. Once again the house was filled with streams of therapists, noise levels at the pitch of a dog kennel, and Carly’s boundless energy. Any guilt at having Carly leave our sight was mitigated by the stress of having her home full-time. I didn’t dare ask how she felt about being told she would still need respite. This wasn’t a decision in which she had a choice. None of us did.
After a few overnight trials, however, we were pleasantly surprised at how easily Carly transitioned to the situation. Howard spent a few extra hours with Darlene and Carly, and we arranged for shifts of Autism Resources workers for evenings and weekends. Momentum built quickly and within weeks, Darlene and staff were taking Carly swimming and for outings to the country, shopping, and exploring the city. We noticed as the spring wore on that Carly seemed to look better. Not that she was ever heavy, but with increased activity and better eating habits, her body slimmed down. Her complexion looked smoother and brighter, her hair thicker. As best we could tell, she seemed happy.
We began thinking that if Darlene was up for it, this was a far better alternative to Parkdale in the fall when Carly got home from camp. Despite our months of effort to launch Parkdale, it was no longer a palatable solution. If Carly wasn’t in our home, we felt better that she was in someone’s home, not an institution. Darlene’s house was host to an ancient dog named Abuksheesh, a huge aquarium of exotic fish, and her photographs and collections of artsy tchotchkes. And Darlene’s elderly neighbors with tomato plants in their yard sure beat the ones in Parkdale, with track marks on their arms.
With a plan in place, Tammy pressed for justice. The police investigation of Carly’s allegations crawled along. The detectives had interviewed all the staff at Cedarview. “Was it possible for the man in question to have access to Carly’s room? Was she ever left unattended? Were there times when there was no other staff on the floor where Carly’s room was?” We were not made privy to the responses, but all of the above were possible. Carly’s room was at the end of a short hallway, out of view of the other bedrooms. Night staff did not routinely stay on the floor where the bedrooms were; they were responsible for doing laundry and other chores after the residents were asleep. In our minds, with staff often attending to other duties during the evening, we were confident that the accused could have had access to Carly’s room without anyone else knowing. In fact, when we spoke with a staff member the day we took Carly home, she encouraged us to pursue the matter with police. We took that to mean she knew something.
The investigation, which required looking for DNA on Carly’s bedding (which had been washed frequently), took several months. Not surprisingly, none of the employees had witnessed anything, and the forensic work turned up no evidence. The staff member who had encouraged us to call the police entered an official statement that she did not see how the man could have had access to Carly’s room.
A month or two had passed, and Carly was sufficiently calm to broach the topic of her abuse again. She agreed to speak with police, if they came to our house. The investigators, a man and a woman, arrived and sat in our kitchen alongside Tammy and Barb and repeated many of the questions they had put to Carly at the police station. Again, she gave the same description of events she had recounted to Tammy and her therapist several months earlier. In between typing her answers, she cried and slapped the table, clearly in distress. But over several sessions, she persevered. Her description was consistent, and it sickened us every time she recounted it.
The victim in these types of abuse cases, we were told, is not a reliable witness—and one like Carly who has autism and is nonverbal is particularly problematic. Tammy and I were infuriated, as Carly was in fact the only one who could speak up and right the wrong. She could not only be an advocate for herself, but in doing so set an example for other victims. And yet it seemed the law could not protect the most vulnerable. As the case weakened, our conviction to support our daughter grew. In removing Carly from Cedarview, we had pulled the knife out, but the wound would take years to heal. Since she had returned home, Carly had been plagued with nightmares and bedwetting, both of which her doctors believed to be consistent with trauma. We encouraged her to write about her experience and talk to a psychologist.
One of the specialists we sought help from was Dr. Nancy Robards. Nancy, one of Canada’s top experts in autism, had recently agreed to start seeing Carly again even though much of her time was absorbed by her role as researcher. We had consulted with Dr. Robards and her team many years earlier when Carly was first diagnosed and had kept in touch. Parents like us know the value of networks and connections. Sometimes it’s all we have.
Carly had a fondness for Dr. Robards. It was easy to see why. Nancy’s warmth and commitment was apparent from the first moment we walked into her offices years before. She had a patient manner of listening to Carly and a thoughtfulness that gave us hope when we were feeling especially hopeless. We never left an appointment without a clear action plan. On the rare occasions we had to call her on her personal cell phone, we were never made to feel like we were intruding, although sometimes I wondered if I would be as accommodating.
One afternoon after a particularly restless night, Carly wrote a note to Nancy.
“Dear Cool Doctor,” Carly began. She had taken to calling Dr. Robards the “Cool Doctor” because she spoke directly to Carly, treating her as an ally in her treatment, not a patient. She continued,
I need your help. Last night I had a really bad nightmare. I did not feel safe the whole night afterwards. Even though it was a dream it reminded me of what happened at Cedarview. I started freaking out and I could not stop.
My mom came in the room and told me to stop and even told me I cant go to L.A if I act like this way. But how do I tell her it’s not my fault. She has a preconceived notion that it’s easy to behave or that it’s in my power to stop it. If only that was true.
I wish I could turn my dreams off. But I can’t. And I am too scared when I wake up. I don’t find I sleep well any more. I find when I’m not in a deep sleep the dreams come.
I need new night time medicine. The liquid meds don’t work. They make my body silly.
My dad does not think you will be able to find any thing else to help me sleep but I can tell you this one is not working.
I have faith in you.
Barb thinks I should talk to a professional about my dreams and what happened to me.
I am scared to, but I agree.
Please, please, please help me.
Your cool patient,
Carly
Through Dr. Robards we met a therapist who had helped victims of abuse and, in particular, young adults with autism. Beth was a godsend. She would come to our house and meet with Carly, Howard taking a backseat on the couch while the two women talked. These discussions were private—a piece of our daughter’s world we would never see. In the months that followed, the therapy he
lped Carly find some peace and she seemed more relaxed. Her sleep improved, although an uninterrupted eight or nine hours with Carly is something we never rely on, even now. Over the coming months, she complained less frequently of nightmares and moodiness.
While Carly worked hard to make sense of and peace with her trauma, we found little satisfaction in the delivery of justice. About eight months after Carly left the respite program, Tammy and I drove up to the local court handling the matter for a meeting with the Crown Attorney. We met together with the judge assigned to the matter and the police for a case review. They said upon examining all the facts that there was insufficient proof to proceed with an indictment. The witnesses were inconsistent, our daughter would be seen as unreliable, and there was no DNA or physical evidence. “Unless anyone else comes forward or new evidence is found, I don’t have enough to prosecute,” the Crown Attorney concluded.
While the case may be legally closed, it will never be closed for me. On good days, I can forget that I dangled my daughter in the mouth of the lion. On the bad ones, the guilt rises through me, a vapor burning my insides. Several years later, Carly told us she would one day be able to come to terms with the hurt and move on. Despite the betrayal and torment, she loved us and forgave us. Once again I realized how much I had to learn from my daughter. Perhaps one day I, too, will forgive. But just now, I’m the last on my forgiveness list.
Just a Girl at Heart
November 18, 2008
Hi Gaby
What yoga studio do you go to
I have been doing yoga for a month and a half and I am getting really
good at it
I can’t wait for our sleep over
I had a movie party with my sister Taryn and it was so much fun
We had lots of food and the cool thing was I got to spend time with my
sister
Don’t tell her but she treated me like a normal sister at it and I even
forgot I had autism
What kinds of foods should we have at the sleep over
I just got a really small computer that i can take any place and look
normal
Do I need to bring any thing to school
Do we go on any trips
I really can’t wait to see all of you
your computer savvy pen pal
Carly
November 28, 2008
Hi guys
I really want to celebrate my birthday with you three
I dont have that many real friends here and I thought it would be cool
to celebrate with all of you
I have never done that before
I normally have to celebrate with Taryns friends or family that rather
hang out with Taryn then me. I thought this year it was going to be
different. But its fine as long as my mom is ok.
Eric I have to tell you the fiz in my body went away. My cool doctor
put me on a new medication and I have not been feeling the fiz any more. It sill might be there but I cant feel it. I don’t know when I am going to see you so can you get skype on your computer so we can talk? Its so cool and I am really good at it.
Gaby I would love to meet your yoga teacher. I am getting taught by my O.T she is good but I think I want a real teacher soon. when I eventually come to LA can we go to a yoga studio? I also want to do yoga on a beach. We don’t get to do that here all are beaches are covered with snow and its cold outside. Oh, ya Gaby i love pizza and when i do come we for sure have to have it at our sleep over.
I am going to ask my dad to get the book you guys are reading. He and
I read a book together at night and it would be cool to read that one.
Maybe I can do some of the work you guys are doing here.
I’m hoping I get to see you soon
Your overly patient waiting friend,
Carly
December 25, 2008
Hi guys
I hope you are having a good Holiday. I am having a great time. I went to see the movie Madagascar 2 with my brother. It was ok. I went horseshoeing with Howard and his wife. Howard fell down and could not get up it was so funny.
Eric i dont know when I am going to come to LA. now. i was hoping to guilt my mother into just taking me for my birthday but she is really sick. I heard my mom talk to Carol her sister in the kitchen and she told her that she is sick and she is going to lie to my sister, brother and me. I was sitting watching tv and i heard the whole thing. No one thinks i can hear them if they are whispering but i can hear every thing. You know what i mean, Eric. I have been thinking about it a lot at night and i even have been waking up because of it. I know she will be ok but I am still a little scared.
Gaby when do you leave Cogwheels? Can you give me your new email? Whats the other school like that you go to? I have been using a weighted blanket and it’s been helping me sleep at night. Ashley my OT is getting me a bigger one and that should help me sleep even better. How big and heavy is your blanket?
Neil the beaches here have snow all over them and some have ice. I really want to do yoga on a beach but its cold out side. I did do something cool today called snowshoeing. You put metal bars on your feet and walk on the snow. I liked it and i went tobogganing down a tall hill. It was scary but lots of fun.
Your overly patient friend that was
wishing she was with you,
Carly
22
Good Enough, Isn’t
Q: BarryV @CarlysVoice: sometimes when u set high goals and dont achieve them it hurts more than when u set a small goals.
A: That is true but if u don’t set high goals for your self you will never meet your full potential. I would of never spelled.
The years on the hazy cusp of adulthood are hard for most teens. Being fourteen or fifteen is an abstract phase of life, with neither the independence of adulthood nor the carefree freedom of childhood. Carly was finding this limbo to be particularly trying.
With Carly home from Cedarview, settled at the Learning Center, and a respite program in place, Tammy and I thought the rest of 2008 would be a time to catch our breath. Although we knew she might resist the full-time ABA school program, we knew Carly was not prepared for the rigors of a mainstream school—even if we could find one that would accept her with all of her exceptionalities. “It doesn’t matter how smart you are if you can’t control your outbursts. The other kids find it too distracting,” I explained.
While she would head off to school without too much resistance, once there, she refused to type and made fairly lame efforts to comply with the program the team had put together. Since Carly was unable or unwilling to use her computer spontaneously, the staff created a curriculum with multiple-choice solutions. At least she could point to the correct answers. We attributed some of her listlessness to the fact that she didn’t want to be in the school in the first place. “I want to go to school with Taryn,” she would tell us.
“Taryn goes to Hebrew day school!” I tried to explain. “She takes Hebrew, French, and a full curriculum. It’s not the right place for you.” I wondered where exactly was the right place for Carly.
“I think she’s bored at school,” reasoned Tammy. “Why don’t we ask them to give her an academic assessment in a classroom setting so she can see what level she’s at, and if she can handle a class environment.”
It seemed like an intelligent idea to all of us except Carly. At least we would know what kind of curriculum she could handle at the Learning Center and perhaps she’d be able to sit for a lengthy period after all? If so, maybe she could handle a public school at least on a part-time basis.
Despite the logic, Carly had a lengthy, circular conversation with me one afternoon that spring that left me both annoyed and bored. I ducked in and out of my office for meetings in between staving off Carly’s rebuttals of why she shouldn’t have to take a placement test.
[2:20:52 PM] Carly says:
i dont want to go to school and take the assess
ment test tomorrow
[2:22:37 PM] Arthur says:
why not? It will help them come up with a better program for you.
[2:23:38 PM] Carly says:
i want to go to the public school nearby
[2:24:50 PM] Arthur says:
you are getting too old for that school. and they don’t have the right type of class for you. Carly, PLEASE try tomorrow. Please try to work with the teacher and students. we are trying to understand what you are capable of doing. so that we can find the right type of school and class for you. do you understand?
[2:25:49 PM] Carly says:
that school is not for kids like me
[2:25:58 PM] Arthur says:
No? why not?
[2:27:35 PM] Carly says:
they have some thing wrong wi th them
[2:28:30 PM] Arthur says:
they need a special way of learning. but many of them are just as smart as you are.
[2:30:07 PM] Carly says:
no it makes me sad to see them. i don’t want to go. i am not going. Howard said they have normal kids but tell them to come here i am not going. i am going to write Claire and tell her i am not going.
[3:46:49 PM] Arthur says:
i know. you have been telling everyone that. but i think you are being very stubborn. you want to be like other kids and learn. the only way to do that is for us to assess how much you can do.
[3:51:57 PM] Arthur says:
are you still there?
[3:52:51 PM] Carly says:
i never get a choice in what I want to do. you said go to cedarview, i went. i don’t want to go to that school.
[3:53:30 PM] Arthur says:
okay. i understand how frustrated you must feel. will you let me explain something?
Carly’s Voice Page 26