When our twins were born in 1995, we were ready for a fresh start. First we had coped with the sudden passing of my wife’s mother in 1989. A few months later, our son was born and was soon plagued with respiratory issues. Then over the next four years came a series of miscarriages.
Finally after a course of treatment for what’s known as a luteal phase defect, my wife gave birth to our daughters. We considered naming them after the medication that enabled their successful birth, but Clomid and Progesterone Fleischmann would have been a cruel fate, so we settled on Carly and Taryn.
Taryn left the womb smiling. With a dark cap of hair and laughing eyes, she was cracking jokes before she could speak. Carly, who had been the feistier en utero seemed to look around and say, “I’m in the wrong place.” This world would never be in step with our little girl. By two years old, Carly was diagnosed with autism, developmental delay and oral-motor apraxia, a neurological condition preventing speech. “Stay in her face,” our developmental pediatrician said. “It will be like climbing up a ladder. How far she goes only time will tell.”
So we climbed what would be a well-greased ladder. Physical and occupational therapies to help her stand, walk and eventually, feed herself. Behavioral therapy (known as Applied Behavior Analysis) to help Carly learn basic skills, master her sensory integration issues and cope with a world that seemed to be screaming at her. Taryn was speaking, dressing herself, going to play groups and dance classes. Carly went to therapy sessions, bleated, screamed, and never ever stopped moving. Her actions were feral and if not tightly monitored, destructive. Left unattended she emptied containers of baby powder, smeared peanut butter on the furniture and overflowed bathtubs. One evening she slipped out of the house undetected at dusk and crossed four city blocks before we found her stripped naked at her favorite park.
Nights were an endless, gauzy whir of remaking her bed, tucking her in and practically holding her in place until she’d finally drift off to sleep at 4:00 or 5:00 AM. Her rocking and bouncing where so steady and violent, we were obliged to reinforce her bedframe with steel bars after she shattered the solid oak bed. To this day I don’t know how we survived 10 years on two or three hours of sleep each night.
By seven or eight years old, it was clear that Carly would not make the types of gains we had seen with other children struggling with this mysterious condition. “You may want to consider residential placement, when the time comes,” our psychologist recommended vaguely. I’m sure she was being sympathetic, but this was not the insight either my wife or I wanted to hear. So with few options and an illogical belief that there was a more human, capable and intelligent Carly somewhere inside this whirling dervish, we persevered. After all, she was demonstrating signs of academic capacity at the special needs school she attended and with her therapists with whom she worked every afternoon and weekend.
In March of 2005, Tammy, Matthew, Taryn and I were away for spring break (we had long ago abandoned the notion of a true family holiday due to the logistics and trauma of travel with Carly). As we travelled from the rim of the Grand Canyon toward Phoenix, my cell rang. “Carly’s been typing all day,” said Howie, Carly’s devoted behavioral therapist and companion. He and Barb Nash-Fenton, Carly’s speech-language pathologist had been toiling away all morning when Carly grabbed her augmentative communication device and tapped out the words, “help-teeth-hurt.”
They were breathless and giggling like children as they repeated the story to us. We wanted to believe them, but without seeing it for ourselves we were skeptical. Given our years of noisy silence we could sooner believe the family cat could type.
But type Carly did. Although the early years her communication would be halting, terse-phrased and sometimes non-existent, she had found what she would eventually call her “inner voice.”
Seven years later, I can hardly recognize the girl that was to have spent her life in an institution. Carly now attends a mainstream high school where she is enrolled in the gifted program. She has over 50,000 followers on Facebook and Twitter with whom she corresponds regularly. Carly is a passionate advocate for those living with autism and other challenges. Of course Carly still struggles with the tangle of challenges caused by autism. But as she says, “I have autism, but it will not define who I am or how I will live my life.”
I often reflect back to a conversation we once had when Carly was 12. She found herself governed by powerful impulses, tingling in her arms and legs and the frustration of being unable to speak and slow to type. “Dad, you need to fix my brain,” she implored. But after 17 years of struggle and incredible triumph I see a young woman who cannot speak but has the ability to move people with her words. I can’t help but believe that not all that is broken needs to be fixed.
Arthur Fleischmann lives with his wife Tammy Starr and their three children in Toronto, Canada where he is the President and co-founder of john st. advertising, one of Canada’s top communications firms. Carly now attends a gifted program at a local public high school. Carly’s Voice, her memoir written with her father is published by Simon & Schuster and released in March 2012. In it, Carly gives remarkable insight into the world of severe autism in her own words. Carly may be followed on twitter (twitter.com/CarlysVoice) Facebook (https://www.facebook.com/pages/Carly-Fleischmann/68996682748) or on her blog (www.carlysvoice.com)
