 | | | Laura Shumaker Photo provided
| | | | | | Just like the autism embedded in the mind and life of her 27-year- old son, Matthew, Laura Shumaker carries with her the permanent sting of others' judgment.
Despite a lauded book, "A Regular Guy: Growing Up with Autism," a popular San Francisco Chronicle blog and therapy (for herself, not just her family), the wounds of public opinion cause her to say, "It still hurts."
Meeting to discuss her contribution to a new Chicken Soup for the Soul release, "Raising Kids on the Spectrum," the Lafayette resident is in constant advance/retreat mode.
"I say something, then I take it away, don't I?" she asks, laughing at herself.
And perhaps this is key to surviving the constant thrust and parry of raising a child - and maintaining one's own sanity - when that child falls within autism's spectrum. Humor, especially the ability to laugh at oneself, is a saving grace.
"People say, 'It must be so hard.' It's emotionally hard because you're trying to relate to your child in a way that is productive," Shumaker says.
Before her first son was born, Shumaker worked in various sales jobs, but never considered herself a career woman. A deep craving for motherhood had been her great ambition; partly because of her close family history, partly just an innate desire.
"It was just in me," she says. "Maybe it was because as a 9-year-old, when my sister was born, my intense grieving over my brother (who had died four years prior) ended. Or changed."
Regardless, when Shumaker and her husband, Peter, welcomed Matthew into their lives, she says the years were filled with chaos.
"Nobody I knew had children with autism. I was constantly managing a person without a lot of self-control. I felt I was in damage control mode. At the same time, I had two other little boys." Her family became the subject of her first attempt at writing: a short essay titled, "The Visit," which became a chapter in her book.
"When I first started writing, I had just dropped Matthew off at his first residential treatment home. I set out telling people what it's like to have a kid with autism. Then it occurred to me how hard it was to be Matthew."
Although she admits to "holding back on private stuff," Shumaker says she wrote an honest story and praise for the book has been nearly universal. She helped people understand the struggles of parenting an autistic child and in the process, she helped her own family.
"I use the book for people who are going to meet Matthew so they understand his weird aggressiveness and hunger for friendship," she says. "For my family, it invited the idea of having more compassion and more tolerance for individuals who have struggles."
Shumaker's essay in the Chicken Soup collected stories lifts the veil on her struggle with perception. Bumping into a woman who witnessed many of Shumaker's past tantrum diffusion efforts - which sometimes involved tackling her son, to prevent him from rocketing into the street - Shumaker had a conversation with her and a revelation. The woman she had always assumed was judging her was a frowner; her staring arose more from concern and curiosity than from condemnation.
"I wrote about it and when an invitation to contribute came, I knew this would be a good piece to submit. It was about me, not Matthew," she says.
Lately, now that Matthew is an adult and living in one of five homes under the auspices of Camphill Communities, she finds it nearly impossible to write about him.
"I find self-advocates go after me on my blog when I write about Matthew. I self-censor, because I'm aware of the autism groups out there," Shumaker says. "Matthew liked the book; he says it made him famous and showed how much I love him. But he's not high functioning and my writing is now more about treatment."
Access to good medical care, housing, and employment for disabled adolescents transitioning to adulthood is the primary focus of her blog. She spends up to four hours writing and devotes hours to researching. Because she's often advising others, having the most current information is essential. And family life remains a constant concern.
"I lost my mother 10 years ago. My father and I are very close. And Matthew isn't my biggest problem now. I have two other children to take care of. I'm writing, developing my skills, having a career as an advocate."
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Lamorinda Weekly, Moraga CA