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Editor's Note: PROFILE is an occasional series looking at the lives of ordinary families.
Special-needs children, around-the-clock parenting
Seattle Times staff reporter
Strangers, friends and even her own husband thought — and told — Cathy Schneider that if she'd only be stricter, her son Charlie would stop misbehaving.
He was one of those babies who didn't want to be put down; he was aggressive with friends and got kicked out of preschool.
"I read all the parenting books, and nothing worked," said Cathy, a Kirkland stay-at-home mom who has a master's degree in education. "I was the mom in the grocery store who couldn't control her kid. I thought it was my fault."
"I'd see her not getting results, and I assumed it was because she was doing it wrong," said her husband, Pete. "In retrospect, that was so obviously not the case."
When Charlie, now 7, was later diagnosed with Asperger's syndrome, often described as high-functioning autism, things suddenly made a lot more sense.
Then the pediatrician told the Schneiders that their easy baby, Ethan, wasn't developing normally. Testing showed that he is autistic; now, at age 4-½, he doesn't talk and is still in diapers.
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"A lot of times, our first impulse of what to do with the kids is not right," Pete said. "What you do with typical kids is not the right thing to do with our kids."
The Schneiders will never have a typical kid, and that's forced them to re-evaluate everything about parenting: their expectations, hopes and techniques.
As part of an occasional series profiling real parents, the Schneiders opened their home to The Times for a day to share the challenges and rewards of parenting two children who have developmental disabilities but completely different needs and demands.
They forfeited what they once considered a "normal" family, home and life, but, "I don't want people to think my life is so awful or tragic," Cathy said. "They're a lot of work, but there's a lot of joy from having them. I still love them just as much."
Still, it's a world neither expected to be in, where Cathy can rattle off long medication names and their expenses include $600-$800 a week — more than $30,000 a year, none of it covered by insurance — for a home therapist, occupational therapist, speech therapist, psychologist, therapeutic horseback riding and social-skills groups.
It's all about family
The Schneiders, like more than 8,000 other Washington families, are on the waiting list for support from the state Division of Developmental Disabilities. They've tapped out their savings and rely on Cathy's mother to help out. "I'm not sure how I'd do it without her," Cathy said.
It can be an exhausting task, with some days beginning in the middle of the night if Ethan wakes up and won't go back to sleep. Cathy lets him play around her bedroom at night while she tries to catnap. "He'll climb on the bookcase and jump on the bed," she said. "That's kind of annoying if you're trying to get half-sleep."
On a recent afternoon, she got Ethan off the bus from his half-day preschool for autistic children and tried to convince him to eat lunch, mostly standing in front of the refrigerator. Just as she was leaving to drive Ethan to the speech therapist in Bellevue, Charlie's school called to ask her to pick him up, as he was having asthma problems.
So both kids were strapped into the back seat, with Charlie chattering nonstop and Ethan quiet except for verbal noises that Cathy tries to interpret: Upset? Happy?
Ethan doesn't like his order disturbed. He's content to entertain himself, roaming around their back yard for hours if they let him. "But it's the totally wrong thing to do," Pete said. "We have to get him to interact with people as much as we can. We have to convince him that the outside world is worth engaging in."
Boys are opposites
Where Ethan is self-contained, Charlie demands attention. He loves to talk, tell stories and show adults what he's doing. Children with Asperger's syndrome — a condition in the autism disorder spectrum — are usually very bright but lack social skills and the ability to read nonverbal clues. Charlie shows little interest in playing with other kids and can become obsessed with particular items or topics.
"It can be a relief to find out why they do things — because they're neurologically different in their brain," Cathy said. "It's not bad parenting or that they're a mean kid. There is a fear of going to find out, but it's definitely better to know."
Studies estimate that one in 500 children has autism or an autism spectrum disorder such as Asperger's, according to the National Center on Birth Defects and Developmental Disabilities. One study found that if one child has autism, the probability of having a sibling with autism is no higher than the average risk of giving birth to a child with some sort of disability. But if there are two autistic siblings, the chances of a third rises to 35 percent, which is why Cathy says that though she'd like to have another, "that's not something we will be risking."
Before she had kids, Cathy knew she wanted to be a really involved stay-at-home mom. "I had visions of fun activities and taking them places like the zoo," she said. She's definitely hands-on, but "it hasn't turned out to be what I planned."
Cathy is tested
Later in the day, she sets out paintbrushes and paper for Ethan on the back patio. He prefers to paint directly on the easel, then throws the containers on the ground to knock off the lids and spill paint on the ground. He fingerpaints directly on the patio, then leans down to lick the paint off the concrete. "No, yuck!" Cathy says.
"I'll have to hose you down before I take you inside," she says to paint-smeared Ethan. She left him unsupervised for a moment in the bathroom; he came out gnawing on a bar of soap.
"Parenting him is so time-intensive," Cathy said. "I can't just tell him, 'Go play' or 'Pick up your toys.' It's hard to teach him not to do something. You have to be there constantly with him if you want to stop the behavior. You really have to pick and choose what's important."
If she tries to sit with Ethan and, say, read a book, should she force him to stay if he tries to get up? "As a parent, you don't want to feel like you have to force your child to play with you," she said. "But if you do it for a while, it does become a routine."
Other parents might wish their kids will grow up to be doctors or lawyers; the abilities of children with autism vary so greatly, there really aren't any parameters to what the Schneiders might hope are within their sons' grasp. Cathy thinks Charlie will be able to hold a career and raise a family; with Ethan, much depends on whether he starts speaking.
"It's a hard thing to realize I may never have a conversation with my child," Pete said.
One friend told Cathy she bet Ethan could grow up to be a grocery-store bag boy. "I'm sure she thought she was being helpful."
Ethan does make vocal noises, and if he wants something, he'll take his mom's hand and put it on the item. He's working on a picture-based communication exchange with his speech therapist so he could pick out a picture of a favorite food, for example, to show that's what he wanted.
"Sometimes, he'll just start giggling," Cathy said wistfully. "I don't know why. I just wish I knew what the joke was."
When Ethan wasn't sleeping and would suddenly start crying, the Schneiders suspected he was sick. They discovered he had strep throat, but it was guesswork to figure out not only where he hurt, but whether he hurt at all.
The house is "Ethan-proofed" (he scaled their 5-foot backyard fence and loves to sit on top of the refrigerator): Bookcases and other potential climbing structures are bolted down; the walls are mostly bare since Ethan pulls off pictures and breaks the glass.
"I don't want to do something drastic like put bars up on the windows," she said. "I don't want it to get to the point where it doesn't seem like a home."
Her china hutch is at her sister's house, the china stashed in the attic. They eat with plastic glasses and bowls.
A common goal
"Suburban housewives are judged by their beautiful homes and high-achieving children, so for Cathy ... ," Pete said, his voice trailing off. "Child achievements will be more bittersweet for us."
While the demands can seem overwhelming, they try to focus on the positives. Pete suspects he wouldn't be as involved with his kids if necessity hadn't forced him out of a more traditional breadwinner-only role.
"In a lot of ways, having the boys helps us have a common goal," Cathy agreed. "We work together more than we probably would have otherwise. There's so much to be done."
Both Pete and Cathy, who met working at Microsoft, belong to support groups for parents with special-needs children through Bellevue's Kindering Center. "You can say, 'My 5-year-old is finally potty trained' and they'll be excited for you, not horrified," Cathy said. She feels fortunate both kids are healthy, as many parents have medically fragile children.
The couple really has to focus on the kids as individuals. "If you want to have a relationship with them, you've got to work at it a lot harder," Pete said. "Just being around physically is not enough.
"You know the saying, 'The light's on but nobody's home?'" Pete said. "I tell people that with Ethan, the light's on but he's in a completely different neighborhood. Sometimes he comes to visit, but if you're not paying really close attention, you won't know when he's here."
Stephanie Dunnewind: firstname.lastname@example.org or 206-464-2091.
Copyright © 2005 The Seattle Times Company