One of the things parents of Autistic children must learn is that they must be “all in” when it comes to taking on the lifelong gauntlet that is caring for their child. Quite often, parents feel like they are on an island, by circumstance or by choice, to do it all, and provide for all their child’s needs. Parents by necessity become the ultimate resource for their child’s care and development. But as the article below illustrates, and as John Lennon said in his song Beautiful Boy, “life is what happens when you’re busy making other plans.” We must care and support ourselves and our partners, before we can give of ourself to our children, both typical and developmentally delayed.
We will be stressed, we will be challenged, we will lose sleep and have our nerves frayed. We too need to be taken care of periodically; to have the burden made lighter even for a brief moment, and to be recharged, renewed. We need to be whole and to be loved in order to give that love and attention to our children who will need it more.
Support each other. Support our children.
The ‘swamp’ of autism: a challenged marriage and a child without a voice
Please click on this link to view the video about Carly’s Voice:
“I joked that the only thing I’d ever thought about writing is a suicide note.”
Arthur Fleischmann offers a little laugh as he says this. He’s talking about his decision to write a memoir, Carly’s Voice: Breaking Through Autism,with his 17-year-old, non-speaking autistic daughter. After ABC did a story about the life-altering breakthrough Carly had at the age of 10 – when she typed out the words “help teeth hurt” on a computer – publishers approached him to write the story.
Mr. Fleischmann’s wife of almost 25 years, Tammy Starr, hasn’t been able to read the book, which chronicles the hardships of their lives as the parents of three children, a 22-year-old son, Matthew, and fraternal twin 17-year-old daughters, Taryn and Carly, who was diagnosed with severe autism when she was 2. “The book is too painful to read,” Ms. Starr says.
Mr. Fleischmann says, “I didn’t want the gauzy optimism so many working-through-hardship books have. You had to go through the swamp with us to be able to experience the breakthrough.”
That “swamp” was the heartbreaking discovery that their child was so disabled their lives would never be normal again. Medical assessments of Carly from an early age are included in the book. The clinical language is chillingly stark. Doctors held out little hope for her to lead a productive life. She needed therapy to accomplish the most basic skills – rolling over, crawling, walking. She has never been able to talk. The description of Carly as a young child is unimaginable to most – emptying out closets, stripping off her clothes, braying, having tantrums, smearing feces.
But Carly wasn’t her parents’ only challenge. Ms. Starr has endured two bouts of cancer (non-Hodgkin’s lymphoma) – the first time in 1997, around the same time Carly was diagnosed with autism – and again in 2008. “Somebody once said to me, ‘You must have done something awful in a previous life to deserve all this bad karma,’ ” she says. “Nice, eh?”
The story here is the portrait of a marriage under extreme challenges. Mr. Fleischmann and Ms. Starr are seated across a table from each other in a boardroom of John St., an advertising agency of which he is a founding partner. A bright splash of modern art covers one wall. The lights above the table are a sculptural jumble of bare light bulbs, fluorescent tubes and shiny bits. The room is childlike and exuberant – the complete opposite of the mood between the couple, who have a sombre, shell-shocked manner. It’s the look of people who have seen more than most. It’s clear that their marriage bond is made of far more than mere love: determination, necessity, hope, acceptance. And a dose of sardonic, black humour to help them cope.
“I never understood the stronger bit,” Mr. Fleischmann says when asked if he believes the adage about adversity creating resiliency.
“Because we’ve been through so much,” Ms. Starr says, referring to her cancer.
“It’s actually very dehumanizing,” he explains. “You become robotic.”
Was Ms. Starr against the book?
“Well, she was, but only after it was written,” he says.
The book, which took three years to complete, put him though “emotional wreckage,” he says, adding that he decided to do it to “amplify Carly’s voice” as she has now become an activist helping people understand the challenges of autism and the importance of understanding and hope.
“I go back and forth,” Ms. Starr says. “We didn’t include many things. Like my deeper, darker thoughts.”
“Then write your own book,” he replies, his voice not unkind, just observational and neutral.
Nothing is sugar-coated between them. They don’t have the luxury of denying reality. Ms. Starr stayed home with the children and has suffered from depression.
“He has the happy gene,” she says, meaning that difficulties don’t easily overwhelm her husband.
“And you don’t,” he says, looking at her.
When asked how the autism of their child has affected their union, Ms. Starr has a quick answer: “We seek help. We met when we were 19 and 20 years old, and we have just grown up together in all of this.”
“You’re virtually assured of divorce if you have a disabled kid,” Mr. Fleischmann says.
“Or even twins. And then add a disability. It’s like 80 per cent,” she says, placing the fact on the table calmly like a nice piece of cake.
“I have heard two stories when parents euthanized their [autistic] kid and then killed themselves,” he says – his peaceful offering of chocolate chip cookies.
But if the couple present an unvarnished truth about the challenges in their relationship, they are also a remarkable testament to the commitment and love some parents have. They never gave up the fight to reach their daughter and refused to consider a group home even though many people suggested it. “We could see something in her eyes. Something was going on there. She had hours and hours of wildness, but she also had incredible moments of quiet,” Mr. Fleischmann says. “If she had been more placid, we might have backed off.”
“I used to say it would be so much easier if she was just a lump,” his wife says. “Because the minute your child shows you something, you want more, so there’s never a point where you’re willing to stop.”
The breakthrough came when Carly was 10 and was working with her tireless therapists, Barb Nash-Fenton and Howard Dalal. Her parents were on spring break in Arizona. The family often travelled without her because the logistics were too difficult.
Mr. Fleischmann and Ms. Starr were skeptical at first, but soon it became obvious that their daughter was intelligent – and had a voice – that had been trapped inside for years. At one point, asked to type five words for a promised reward of a snack – a common motivational strategy for autistic children – she produced a small smile and typed “five words.” Her therapists laughed and gave her the snack. Carly’s typed response: “Just give me the bloody chips okay.” As her father writes in the book, “As years of noisy silence died, a prima donna was born.”
“Once she could communicate, her view of herself and the world’s view of her changed 180 degrees,” he explains. For her bat mitzvah, she wrote a speech on her computer, and then asked her parents if they could get Ellen DeGeneres to read it. “We didn’t even know she knew who Ellen was,” her father marvels. They were able to arrange for the talk-show host to read the speech aloud at the family celebration via satellite.
With more than 30,000 Facebook friends and 25,000 followers on Twitter, Carly helps to explain behavioural issues that have mystified experts. “She shows how these kids are misunderstood,” her mother explains. “Even when I went with her to Sick Kids, they wrote down that she was self-injurious. But she has [since] explained that she was slapping her hand to keep it from doing something she didn’t want to do. She was trying to control her impulses.”
Now in a mainstream high school, where she takes many gifted classes, Carly dreams of going to university – in particular, the University of Southern California. “We have always had to worry about what does Carly’s life look like in the future,” Mr. Fleischmann says. “Our assumption is that she won’t ever be 100 per cent independent. It’s a planning exercise. … But I have gained some confidence that we have solved so many problems, we can solve that one too.”
They have dreams for their daughter. Every day, Carly wakes up with the hope that she will be able to talk. “That’s my wish too,” her mother says.