April is Autism Awareness Month -- and while Dana Commandatore will be the first to tell you it isn’t about her, it sort of is. It is also about Lisa Guardado and her husband, Eddie, a Major League Baseball pitcher.
These people are raising children with autism and to increase public awareness would not only serve the children, but assist them in their parental mission.
“We want Michelangelo to be as independent and happy as possible,” Commandatore said of her 6-year-old son in our recent interview.
And while that may sound like the mission of most parents, achieving this when a child has autism comes with some mind-boggling challenges.
“There are so many people who don’t know what this is,” said Lisa Guardado, whose 4-year-old daughter Ava is on the autistic spectrum.
In both cases, creative juice has been put into helping the national conversation with projects bearing the child’s name; one is a book, the other a foundation.
A writer for as long as she can remember, it wasn’t until Commandatore was inspired by her son that she felt like she had something to say. It came through her in the form of a children’s book called Michelangelo the Diver .
“I write social stories for Michelangelo,” said Commandatore, who works in advertising while her husband, Michael, is a voice-over actor. “It’s a way of preparing him for things, like getting a hair cut for the first time. Then we read it to him for weeks in advance. He was having dreams and he had no idea how to explain them. We were trying to explain to him the difference between sleeping dreams and waking dreams, so I wrote one for that. It was the clearest thing I’ve written in my life.”
What is particularly clear about her book -- complete with stunning illustrations by Damian Elwes -- is that Commandatore has had a dynamic paradigm shift with regard to parenting. In the dedication, she writes, “When my son, Michelangelo, was diagnosed with autism I was worried that all my dreams would disappear. I was wrong. He constantly inspires and challenges me to help him realize his dreams.”
What follows in its pages is not a story geared to children with autism, but one with the universal theme that your dreams can come true. Michelangelo is fascinated with visiting the Aquarium of the Pacific (in Long Beach, Calif.) and Commandatore’s story stems from that. It hits just the right note because so much of this developmental disability is about managing expectations. The parents of children with autism have that challenge 24/7 and for most there is little energy left at the end of the day to educate others about it.
I know something about this. My 7-year-old nephew, Stephen, and 5-year-old niece, Gina, are both on the spectrum and I have seen my siblings go through that monumental shift in parenting them. When people hear that Stephen knows the difference between Mozart and Tchaikovsky or that he can identify a Van Gogh, their well-meaning response is, “He’ll be fine.” Yet it feels dismissive to the person who is trying to nurture a special-needs child and is looking for occasional emotional support.
“When your child has autism, a lot of times people don’t know what to do,” Lisa Guardado said.
As for Gina, she is now prone to telling her mother to “take a deep breath” when she raises her voice. While it would be amusing in most children, in her case it’s humorous but also meaningful that she knows its proper context because her verbal skills and vocabulary are just starting to escalate.
“It is such a huge spectrum,” Guardado said. “So many people want to interact with Ava, especially because my two boys (ages 12 and 7) are well-mannered and talk to others easily. When people try to talk to her, I explain the situation. I don’t want her to be labeled as a bratty kid. I don’t want them to think she has no manners.”
And while managing those kinds of expectations is a hefty part of the challenge, so is due diligence in early detection and subsequent care and schooling. Services that might maximize a child’s development are not necessarily covered by insurance. That’s where Guardado’s foundation -- Ava’s Friends -- comes in.
“We’ve been really blessed with our daughter and being able to afford the best possible therapy,” Guardado said. “It breaks my heart that so many kids could grow up and not get that. We want to help.”
The foundation is pretty new (late 2008), but has already begun receiving applications. The Web site is a portal for resources and sharing stories. In addition, there is Monday Monday, a clothing line that is designed to raise awareness about autism and bring funding to the foundation.
“I just want people to know at the end of the day that this is OK,” Guardado said.
Or, as one mystical friend said recently when I was telling him about my niece and nephew, who he’s never met:
“You realize they’re perfect just the way they are, right?”
Yes, I am. But thanks for reminding me.
Nancy Colasurdo is a practicing life coach and freelance writer. Her Web site is www.nancola.com. Please direct all questions/comments to FOXGamePlan@gmail.com.
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