An Inconvenient Youth: Raising Children with Autism
Photo: Alessandra Petlin
PAGE 3
When it comes to dealing with autism, the medical community offers no standard treatment, although certain medications and therapies—including one-on-one applied behavior analysis, which teaches communication and socials skills, and floor time, when a parent or facilitator uses play to encourage engagement—may be prescribed to help with symptoms. The only point that's undisputed is that the earlier a child with an ASD receives intervention therapies, the better his or her outcome will be—and the pressure this puts on a parent is nearly unbearable. Any downtime, or financial restraint whatsoever, is a pipeline to constant guilt.
"I used to eat myself alive about how much money or time I was spending with Padraic," says Heather, who has three other children. "You know that if you spend 24 hours a day with this kid, drawing him out of his inwardness, you're going to make a difference. Ninety percent of my self-torture has come from not doing floor time with him because I'm making dinner. I've spent most evenings on the floor of my kitchen in tears.... There's never enough you can do. Ever.
"It's the old proverbial story," she continues. "If a car fell on top of your kid, a mom would be able to lift it off."
"The superhuman kicks in," Erin agrees. "But it's years of trying to lift that car."
"And you can't," says Heather. "And everyone's sitting on top of the car trying to hold it down. That's the way it feels."
"And you get tired," says Corinda.
"Pretty soon you realize the car is on top of you," says Erin.
After a certain amount of sleep deprivation, radical, unproven therapies can start to look reasonable—even promising. Upon hearing a miraculous testimonial from another mother, Corinda and Heather took their boys to a "biomedical treatment" practitioner. Now, when talking about "Dr. Q" (not her name), they both assume the pained expressions people get when looking at their high school yearbook photos. "I can't talk about it with a straight face anymore," laments Heather.
"Dr. Q was $500 initially, then every time you talked to her it was $75 and a trip to the grocery store," groans Corinda.
"She would call you in this flurry in the middle of the night: 'Do you have any avocado oil?! Padraic's not autistic! Something is ravaging him and causing these behaviors! You need to rub avocado oil on his shins every two hours!'" says Heather. "Here's me, brand-new to this whole world. I have a toddler. Padraic's still nonverbal. Very dark place.
"By the end," she continues, "I had to separate 12 egg yolks and put a jar of Grey Poupon in Padraic's bath. I had to slip in at night and put artichokes in his socks. I had to rub down very specific parts of him with yogurt. The poor thing is probably autistic because of what I did to him."
(This is a laugh line, by the way. Autism Mom humor is delightfully brutal.)
"She told us to put lighter fluid on Max's feet," remembers Corinda. "My brother-in-law, a doctor, said, 'I really don't want you to do that.'"
"Now we'd never do it," says Heather. "But back then, more than anyone else, Dr. Q was giving us hope. Those were the early days. That's when you're really in the dark."
"I used to eat myself alive about how much money or time I was spending with Padraic," says Heather, who has three other children. "You know that if you spend 24 hours a day with this kid, drawing him out of his inwardness, you're going to make a difference. Ninety percent of my self-torture has come from not doing floor time with him because I'm making dinner. I've spent most evenings on the floor of my kitchen in tears.... There's never enough you can do. Ever.
"It's the old proverbial story," she continues. "If a car fell on top of your kid, a mom would be able to lift it off."
"The superhuman kicks in," Erin agrees. "But it's years of trying to lift that car."
"And you can't," says Heather. "And everyone's sitting on top of the car trying to hold it down. That's the way it feels."
"And you get tired," says Corinda.
"Pretty soon you realize the car is on top of you," says Erin.
After a certain amount of sleep deprivation, radical, unproven therapies can start to look reasonable—even promising. Upon hearing a miraculous testimonial from another mother, Corinda and Heather took their boys to a "biomedical treatment" practitioner. Now, when talking about "Dr. Q" (not her name), they both assume the pained expressions people get when looking at their high school yearbook photos. "I can't talk about it with a straight face anymore," laments Heather.
"Dr. Q was $500 initially, then every time you talked to her it was $75 and a trip to the grocery store," groans Corinda.
"She would call you in this flurry in the middle of the night: 'Do you have any avocado oil?! Padraic's not autistic! Something is ravaging him and causing these behaviors! You need to rub avocado oil on his shins every two hours!'" says Heather. "Here's me, brand-new to this whole world. I have a toddler. Padraic's still nonverbal. Very dark place.
"By the end," she continues, "I had to separate 12 egg yolks and put a jar of Grey Poupon in Padraic's bath. I had to slip in at night and put artichokes in his socks. I had to rub down very specific parts of him with yogurt. The poor thing is probably autistic because of what I did to him."
(This is a laugh line, by the way. Autism Mom humor is delightfully brutal.)
"She told us to put lighter fluid on Max's feet," remembers Corinda. "My brother-in-law, a doctor, said, 'I really don't want you to do that.'"
"Now we'd never do it," says Heather. "But back then, more than anyone else, Dr. Q was giving us hope. Those were the early days. That's when you're really in the dark."
NEXT STORY
