Photo: Alessandra Petlin
Once in a while, the blind, hunt-and-peck search for effective cures can yield life-changing results. That's because some of the behavioral problems in these kids are compounded by other medical conditions that can accompany autism. Gastrointestinal problems, for example, are common, which is why dietary changes may improve an autistic child's responsiveness. Thomas and Max also suffer from epilepsy, and as a result, Erin and Corinda have compared extensive notes on medications and lifestyle changes to stop or slow the seizures, which can radically improve a child's development. Occasionally when trying other treatments, there are complete surprises.
"Max didn't talk for a long time," says Corinda. "We assumed it was because of autism. We went to all the best hospitals. Finally we went to the Mayo Clinic when he was 6. We were there 24 hours, and they said, 'Your kid isn't breathing at night. We need to take his tonsils out.' Once they took them out, he started sleeping through the night for the first time. It was amazing. Three weeks later, he started talking."
"It was astounding," says Erin, after a moment.
"I still get goose bumps," said Heather.
"Me too," adds Erin's husband, Tim, popping his head into the room.
Would you call it a miracle? I ask.
Everyone nods solemnly.
"That's what it was," says Corinda. "It was his speech therapist who finally told us to go to Mayo. How do you thank her? Thank you for giving...?"
For giving your child his voice. Nobody says it; we're all trying not to cry.
The women admit to bouts of depression. "We've all been on 'the cocktail' at one time or another," says Heather, referring to antidepressants. Caring for a child with any disability is challenging, but when the kid can offer a smile or hug, it makes a parent's job a little easier. Children with autism, however, are "blessed" with the tendency to push people away. "My kid bites me. Punches me. When he was little he would rip hair out of my head and chunks out of my skin. He ripped the door off its hinges last summer," says Heather.
Stacey O'Rourke, who works full-time as a pharmaceutical representative, finds the emotional disconnect particularly difficult. Her 4-year-old daughter, Katelyn, is severely autistic and doesn't clearly demonstrate reciprocal love. Stacey's twin girls, age 2, are also worrying her: They don't point, wave, or respond to their names very well. "People say to me, 'Oh, your daughter must really be into Christmas now because she's 4.' No. She has no clue about Christmas. These are constant reminders about how 'not normal' my life and my daughter are. You don't even want to talk to anybody new, so you don't have to explain. It's a continuous grieving process. You go through it every time your kid doesn't reach that next milestone. You realize how far behind you are."
Age 9, the group agrees, is a tough milestone.
"You really think that by 9 they'll be better," says Corinda.
"Because at 9, that is 'the kid you have,'" Erin agrees.
We Hear You!