For those of you who don’t know me my name is Carly Fleischmann. I am a fifteen year old autistic girl who, as you can see and hear, has found her inner voice. I feel honoured and privileged to be introducing a woman that really needs no introduction, but don’t tell her that or I might be out of a job. Rumour has it I’m getting paid in potato chips. Yum yum.
Let me go back to being serious for a moment. I have been doing a lot of research to prepare for Temple’s introduction and I couldn’t believe similarities we both seem to have. Just like me and many children with autism, Temple’s mother sat in the doctor’s office when Temple was a little girl and she was told that Temple had autism. Temple’s mother asked what caused the autism. The doctor responded with a response that many doctors told mothers up until 20 years ago. He looked right into Temple’s mother’s eyes and said it is caused from bad parenting and lack of love from the mother. Temple, like me, was nonverbal at the time and her mother, like my mother, could not accept the fact that her child would never be able to communicate. Temple, from that point on, went through an intense therapy program. It was not ABA but some people would argue that it could be considered the first ABA program ever made.
With intense speech therapy, a nanny working non-stop on social skills, and a mother with a will to educate her daughter, Temple was able to communicate. Even though Temple was able to talk, it did not mean the fight for her was over. Temple, like me, was given an opportunity to attend school but challenges and skepticism lay around every corner. Temple was able to do what a lot of doctors and educators thought would be impossible. She graduated school with a PhD in animal science. She has gone on to write books on a variety of subjects including animals, social skills and of course, autism.
Living with autism, myself, has been hard at times and the gains are great, but challenging to get to. However, being able to see someone who is able to walk a mile in the shoes I’m already wearing, gives me more than hope for myself and for the hundreds of thousands following with, and behind me.
I have to be honest with all of you here today. I usually am able to write a speech or a story in my head, and then type it out. However for this speech today, it has been a hard process for me. I thought it was because of my autism but I realized it’s my admiration for Temple Grandin that made it so difficult. A wise man once said to dream of greatness is just the first step but actually attaining it is, like they say on tv, priceless. Most children my age would say that they look up to pop stars, reality tv stars, and sports stars but I’m proud to say the person I look up to is Temple Grandin. So without further adieu the woman who really needed no introduction, my idol, Temple Grandin.
I seem to hear Carly’s voice for the first time on each occasion I read what she has created. It’s been six years that she’s been writing and with each epistle, I’m still left somewhat speechless myself. Carly and Howard stepped down from the stage and Temple made her presentation, but I was so busy playing and replaying Carly’s introduction in my head that I only half-listened to Dr. Grandin’s speech.
Carly was finding the perfect opportunities to share her message. Technology helped ease the burden of communicating—software with word prediction, more sophisticated image-based programs, the iTouch, and then the iPad all improved Carly’s ability to converse. With the growth of social media channels, Carly was able to reach people in ways that would have been impossible just five years earlier.
And the public wanted to be reached. The media’s interest in autism was growing, sparked by startling statistics of one in 110 children being diagnosed with ASD every year. The condition was being likened to an epidemic.
It was through this confluence of technology and public interest that we came to meet Holly Robinson Peete. She and her husband, ex-NFLer Rodney Peete, had started a foundation known as HollyRod that provides funding and services to those affected by Parkinson’s disease and autism. Their son RJ was diagnosed with autism at age two and Holly had become a passionate spokesperson for the cause. Holly began following Carly on Twitter and the two had exchanged a few emails. On one of our trips to LA, we met with Holly and her son. We had lunch at an outdoor market on the kind of bright afternoon that reminds you why everyone in LA has a smile. Holly was passionate about her work at HollyRod and completely down-to-earth.
Shortly before Carly was to introduce Temple Grandin, we received a call from the executive director of HollyRod, informing us that Carly had been selected to receive a Youth Champion award from the foundation at their annual gala, DesignCare. The event was to be held in July, just before Carly was to leave for sports camp. Tammy graciously thanked them and said she would see if there were any way to attend, but she wasn’t optimistic. One trip to LA with Carly every year was about as much logistical juggling as she could handle.
Tammy and Carly checked out the DesignCare website later that evening and realized the magnitude of the honor. The annual event draws hundreds of donors. “Carly could go straight to camp from LA if Sheila comes with us,” Tammy said, referring to the young woman who was to be Carly’s aide at camp that summer.
I reflected on the effort it would take to coordinate and make the trip. Wasn’t summer supposed to be a break? On the other hand, I knew Carly felt honored—as did we—for the recognition. Furthermore, I looked forward to hearing the acceptance speech Carly would inevitably have to write. Her desire to be a voice for those who couldn’t communicate combined with her unfailing perfectionism resulted in an eye-opening experience each time she undertook such an effort. I was getting to understand and appreciate Carly more from the writing she did for strangers than in all the conversations we had and all the sessions with Barb and Howard. I knew many families with children living with autism who never heard meaningful language from their kids. I considered us fortunate in our misfortune; although Carly’s life was a daily battle, her voice was a gift.
“So, let’s do it,” I exhaled, somewhere between a sigh and a statement of resolve. Missing opportunities such as this only breeds regret later.
Taryn would be at camp. Matthew, who was entering his junior year of university, had to stay in Toronto to work at his summer job. He was doing research in a psychology lab at the Hospital for Sick Children. Relatively speaking, Tammy, Sheila, Carly, and I were a small crew to transport.
During the flight, Sheila was able to calmly talk Carly through one bout of bleating, back arching, and head banging in her seat. Even with Carly’s growing sense of self-awareness, to this day she cannot articulate what sets off these eruptions. Otherwise, the flight was uneventful, though I didn’t dare relax until we arrived at the hotel. I don’t think I’ll ever be totally calm when I travel with Carly.
Tired from the trip, everyone slept through the night. The next morning, we spent our one free day walking by the beach in Santa Monica and Venice. Sheila had never been to Los Angeles, but we wanted to keep the pace calm and save our energy for the event the next day. At Holly’s suggestion we stopped by the venue for the gala to give Carly a chance to see where she would be sitting and to walk up on stage. Practice doesn’t make perfect, but it does take the stress levels down just a notch. The event was taking place at the estate of a prominent businessman and friend of Holly and Rodney’s.
“The award show and entertainment is taking place on the tennis court,” the event manager directed us. “It seats six hundred with room for a double stage and a runway for the fashion show.”
I looked at Tammy, giving her a silent “holy crap” look. Sheila, Tammy, Carly, and I found the section in which we would be seated and practiced walking up onto the stage several times. Carly seemed calm, her stimming and noises almost nonexistent, but my stomach tightened at the thought of everything that could go wrong in the few feet between our seats and the stage where we would stand to accept the award.
Having cleared the hurdle of the rehearsal, we went over to our friends’ house to hang out. Their son was also nonverbal and yet wrote beautifully using a keyboard. He had
sent Carly a poem about living with autism earlier that year. Tammy and I wondered aloud why we couldn’t seem to find anyone similar to Carly in our city. Would Carly have to move to LA to have friends?
The next day passed peacefully and quickly. Tammy ran out to buy a new pair of shoes, feeling somewhat intimidated and under-accessorized by the magnitude of the event. Sheila and I took Carly sightseeing, relaxed by the pool, and napped. My niece Sydney, who was in LA for the summer for an internship, joined us with her boyfriend, Ben. Getting ready for the formal affair brought me back to my wedding day. The women were in one hotel room blow-drying, nail painting, hair straightening, and getting dressed, while Ben and I were in the other quickly putting on our suits and waiting impatiently.
When we arrived at the event, Carly, Sheila, Syd, and Ben found a quiet spot in the garden where dinner was being served while Tammy and I wandered around the silent auction and said hello to the handful of people we knew. I had hoped to gaze longingly at Eva Longoria, who I heard was going to be there. I didn’t notice her until much later in the evening, and by the time I realized it was her, my celebrity crush had walked past.
As darkness fell, we were asked to make our way down the hill to the tennis courts, which were now fully festooned for the entertainment and award show. Carly’s award was to be one of the first of the six awards being given out, and I calculated how we might make a run for the exit immediately after if she couldn’t hold it together for the rest of the evening.
Just before Carly was called up to accept the award, a short video about her was played. It was neither melodramatic nor sugarcoated, but seeing the film the production company had artfully edited using our home video, family pictures, and excerpts from the 20/20 segment had a jarring effect on me. In reality, Carly’s life had come together in small increments over the past fifteen years like a mosaic, one tiny tile at a time. All within three or four minutes, her struggles, her breakthrough, and her dream of being a voice to autism all played out. I felt as if I were a witness to my existence, as were the hundreds of strangers sitting around me. I reached over to hold Carly’s hand and could tell she was focusing hard to keep her composure.
The video ended and we were called up. Holly and Rodney hugged us as if we were long-lost relatives and thanked us for making the trip out. In all the excitement I had forgotten to think about how I would express my appreciation in that short moment on stage before Carly’s speech. Holly turned to the audience and told them that Carly had prepared a short acceptance speech and the lights dimmed slightly as the screen filled with her words, the stadium speakers giving life to the voice of her computer:
I feel deeply honored to be receiving this award tonight. I just have one question. Does anyone know if I can trade this award at a convenience store for a bag of chips? I love chips. L.O.L.
Ok, I’m ready to be serious. Are you? I don’t think many people thought when I was a young child that some day I would be getting my first A in a mainstream advanced grade 10 English class or introducing Temple Grandin to over a eight hundred people or even finding my inner voice and being able to share it with all of you tonight. In the last four years of my life I have found, and I am proud to say, started using my inner voice to type and to share the truths, secrets and myths about autism. I was asked, a while ago, if I get sick and tired answering questions to my over 15 thousand fans and followers on Twitter Facebook and my blog. The way I see it, how is anyone really going to know the truth about living with autism unless someone with autism talks about it? They say autism is one of those things that even doctors and experts don’t really understand yet. So, like I tell my readers, why go to a duck to find out what’s wrong with the horse when you can go right to the horse’s mouth?
It hasn’t always been a smooth road for me to travel and I still find myself traveling over many bumps in the road to get to where I want to be but luckily for me, I have many caring people traveling beside me. I would like to thank my mom who has taught me to fight for what I believe in. She does this by helping me fight and helping other families with autism get what they need to give their child the opportunity to find their inner voice.
I would like to thank my dad who would climb a volcano oozing lava or swim across the ocean just to read me a story or spend time with me.
There are two other people in my life I would like to thank, Barb, my speech pathologist, who has been with me for longer than I remember and Howard, a man who every child with autism should have stand beside them. I owe a lot to these two for believing in me so much that I started to believe in myself.
Ok, enough with the mushy stuff. I promise I am almost done. Just 112 more pages to go. LOL. I believe it’s time that children and adults with autism have a chance to find their inner voices. It is time that people around us get educated about autism and what it is really about. It is time that we all start believing in the possibilities. Because of this, I would like to share my award tonight with everyone living with autism. Many small steps have been started in the right direction but maybe it’s time for us all to take that one big leap.
I would like to thank Holly, The HollyRod Foundation and Lori for giving me the opportunity to be here with you tonight. Their generosity and caring has made me feel like a real celebrity. I would also like to thank all of you for this honor and award tonight on the behalf of people living with autism everywhere.
Thank you.
While the speech played, I stood behind Carly, who pursed her lips, putting her right hand to her ear in the pose that was her trademark. I wrapped my arms tightly around her waist to make both of us feel more secure and Tammy wrapped her arm around me—the three of us stabilizing one another.
When the speech was done and we had thanked our hosts one last time, we returned to our seats, receiving pats on the arm and smiles from audience members as we walked by. Despite her lack of broad expressions, I could feel Carly was basking in the glory. She sat quietly for the rest of the awards ceremony and when the music started for the entertainment that followed, Carly rocked in her chair, a small, pleased smile on her face.
We departed early the next morning—Carly to sports camp, Tammy and I to return home. At the airport, I watched Carly and Sheila pass through security and waved as they disappeared into the throng. Carly had on her worn knapsack and pressed through the mob with her impatient, swaying gate. Sheila walked quickly to stay next to her, guiding her through the crowd. I thought to myself, since Carly’s first tentative words five years earlier, her voice had become strong and distinct. Her actions, though often sidetracked by uncontrollable compulsions, were directed and purposeful. I knew that while she would always need someone at her side to guide her, she had a newfound momentum to her life.
“How far up the ladder will she climb?” I had asked Carly’s doctor, years before.
“We’ll just have to wait and see,” she had replied.
I turned, slinging my carry-on over my shoulder, and walked the other direction toward my gate.
25
I Am Carly
Q: kpm @CarlysVoice: Do you think you’ll ever be independent?
A: I don’t know if I will be fully independent. I still am working on lots of my issues. but I surprise my self every year so u never know.
The 2010–2011 school year started with the hope and promise and tingling nerves of a first date. Carly came downstairs wearing close-fitting designer jeans and her favorite Pink by Victoria’s Secret T-shirt. Howard had learned to iron her hair, allowing wisps to spray forth over one eye. I took to calling him Mr. Howard, with mock affect.
“Morning, C,” I said. I had already walked our dog, Nelly, and was sitting at the table, sun streaming across my newspaper.
Carly flopped heavily onto the kitchen chair next to me as Howard brought over the whole-wheat tortilla with low-fat mozzarella I had prepared minutes before. This was Carly’s favorite breakfast. It’s actually her only breakfast thanks to her need for repetition. For the first time in her life w
e had to watch her weight. Carly had gained nearly fifteen pounds due to a medication her doctor was trying in an effort to decrease the OCD outbursts. “No dip today, okay, Carly?” I told her more than asked.
After a summer that included receiving her award from Holly-Rod and two months at two different summer camps, Carly was about to start high school as a ninth-grade student.
“Let’s start with five classes,” Elaine suggested when we met over the summer. “And we’ll try to stagger them so they don’t all require lots of writing and don’t all land on the same day. One will be a resource class; like a study hall where she can catch up on some of her work.”
Western Secondary has three levels of education: gifted, academic, and applied. Carly was enrolled in two gifted, the most vigorous of the three levels, and one of each of the others. In the coming weeks, we would settle into a schedule with two assistants escorting Carly to school. Sheila, who had been working with Carly for over a year, had recently finished teachers’ college but agreed to put her job search for a full-time teaching position on hold to work with Carly in the mornings for the school year. Howard finished the day and stayed on until bedtime. Carly only went to Darlene’s house on the weekends now. I am nothing if not practical and know that despite her gains, Carly’s erratic sleep patterns, her obsessive compulsivity, and the string of therapists that accompany her fifteen hours a day are too much to have in our house 24/7. I love my daughter, but I needed some space if I was to continue to do so.
She was not happy about the respite situation, but told us that she understood why we needed a break from her and she loved us despite the circumstances. Guilt is a powerful tool Carly had mastered with the deftness of a Jewish grandmother. But when she told us this, this time, her sincerity allowed me to cut myself some slack.
The fall was filled with Carly highs and Carly lows. She participated in activities and events at school along with her classmates, but her OCD continued to imprison her. Carly attended her first school dance at Halloween dressed as a skeleton, the only costume we could agree upon. She wanted the Sexy Ladybug; we wanted modesty. Howard escorted her and watched as her classmates beckoned Carly to the dance floor, holding her hands and swinging her around. Such a simple act of acceptance no one might have dreamt of a few years earlier.
Carly’s Voice Page 31