Life as a single parent is rough. Tales overwhelm, budgets and stress fly across tables at your local Starbucks. The crash of weary heads falling into pillows echoes through our nation's nights and while some of us rise and fall to the daily drill, others patiently teach a little one to tie a shoe, even if it takes all year.
After a day at the soccer field and showing houses I met up with sister-single-mom, Autism Society of Colorado's Betty Lehman, to wrap up my stories for Autism Awareness month. Looking like a softer version of Sarah Jessica Parker, Betty burst into Racine's, spotting me in an instant though we'd never met before. She is keen and kind, pin-pointedly focused as we launch into an energetic conversation sharing stories of raising sons. The difference is that while I foray into the land of the teenage boy, Betty Lehman is the mother of a child with autism.
I sat in awe as she unraveled her love story; about a world turned upside down, a child with a mysterious developmental disorder and the woman who sought to right the world again.
"When my son, Eli, was diagnosed twenty-one years ago, one out of 2,500 children was diagnosed with autism. It was considered a rare disorder," Betty told me as Eli worked silently through his Word Search.
"He screamed, literally, fifteen to twenty hours a day from the time he was born until he was fifteen years old. The medical community had very few answers; all they could tell me was that he was probably screaming because he has autism. 'Oh, and he's dying.' 'Dying of what? You don't die of autism.'"
Insistent for answers, she called her fifth gastroenterologist and begged him to talk to her. "He is screaming, he is hurting himself, help me." What they discovered was that Eli was born with an anatomical but non-functional pancreas which was not allowing him to digest anything but sugars. "He was wasting away inside, no wonder he was screaming." Though the discovery was made when he was seven, Betty Lehman didn't find a remedy for another eight years. Through her tenacity and the help of a sympathetic GI doc, they figured out that Eli could be helped by a combination of two drugs: Zofran, an anti-emetic, and Levsin, an anti-spasmodic. "I could visually see Eli's stomach muscles undulating while he was screaming. Within three days of his being on this cocktail, the screaming was drastically reduced, he was no longer tearing his hair out, and the side effects are negligible." The fight had just begun.
Once Eli was out of pain and a sense of relative calm was established, Betty Lehman turned her sights on helping others affected by Autism Spectrum Disorders, becoming Executive Director of The Autism Society of Colorado. The mission of the ASC is to make certain that the people, families and caregivers of those with autism have ready access to the services and supports they need to be safe, educated, healthy, and able to pursue happy, productive, and fulfilling lives, and Betty is all over that. Taking on the insurance companies and the Colorado State Legislature, she has worked rigorously for the passage of more than fifteen bills related to autism, quality of life and insurance coverage for the disorder.
As Eli ate his French fries and whizzed through a giant Sudoku, Betty told me more about The Autism Society, the 150 calls for help a month they get and the services they provide. There were stories of intellectually gifted adolescents whose inability to read social cues or understand humor or sarcasm exposed them to terrible bullying; individuals across the lifespan needing 24/7 supervision in order to be safe; individuals without functional language who had undiagnosed conditions that they could not describe, and who engaged in physical self-abuse or lashed out physically at those closest to them; children who were unable to speak. Perhaps not as provocative as the story of the wealthy actress/mother on Larry King whose 4 year-old with autism yells profanities at doctors, but they are more authentic, they are heartbreaking and they are in our own backyard.
Today it is estimated that one in every 110 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined. Some say this estimate is conservative and may actually be as high as one in 42. Approximately 1.5 million individuals in the U.S. and tens of millions worldwide are affected by autism, with government statistics suggesting the rate of autism is increasing by 10-17 percent annually. The average age of diagnosis is five years, yet many parents have general developmental concerns about their children much earlier: language, social skills and imaginative play, abnormalities in eating, drinking, sleeping, and mood, aggression, tantrums, odd responses to stimuli, abnormal cognition, self-injurious behavior and on and on. Often years of these behaviors pass before a parent has the courage to call for help, yet early intervention is key.
When asked by my Telluride Inside editor to write on Autism Awareness Month I expected I'd learn the shocking statistics and perhaps a little more than my comfort zone permits. I was left in a state of awe. Not moved from my couch by information explaining the inexplicable or the TV characters conspicuously planted front and center in their watered-down-but-good-for-ratings kind of way, I was changed by the champions. I drank in their strength, feeling smaller in their shadows and enriched by their compassion and I've begun to ask more of myself. You make all of us better; advocates of those members our human family, who share our world but experience it so differently. With Autism Spectrum Disorder we do not know the cause and we don't have a cure; thank god we have the Betty Lehmans of the world.