By Sharon Jayson, USA Today.
Austin – There is a quiet irony in Jeanette and Patrick O’Donnell’s house, where autism has taken hold of five of their six children.
Though the brain disorder is most often associated with an inability
to speak, autism has rendered this household anything but silent.
“You have to get used to the sound,” Jeanette says of the crashes and
pops that mean something is breaking or hitting the floor, usually propelled
by small hands. The cacophony of seven older television sets, usually tuned
to different channels, drones in the background, fed by a backyard satellite
dish.
“We have to have TV on all the time,” Jeanette, 44, says. “It’s a stimulant.”
It’s rare to have so many children with the disorder. A database operated by the non-profit advocacy group Cure Autism Now says the O’Donnells are one of only three known U.S. families with five autistic children. Fourteen other families have four.
“People say, ‘How do you do it?’ ” Jeanette says. “We weren’t really
given a choice. It would be the same if we had diabetic children or a child
who had cancer.”
“We’re not big into self-pity,” adds Patrick, 39, a print room supervisor for an insurance management company.
A glimpse into the O’Donnells’ modest four-bedroom home is more than a
look at the faded furniture they either inherited or bought at garage sales:
It’s a peek at a family on the verge of overload.
“You get stressed,” Jeanette says. “Sometimes I go, ‘Oh, my God, I can’t take another minute.’ ”
Living with autism has meant adjusting to diagnoses spanning a spectrum of baffling symptoms. Jeanette provides almost non-stop prodding, with reminders about basic grooming, and caters to the rigid routines and
personal quirks characteristic of the disorder: . Caitlin, the oldest at 14,
has classic autism, the most severe form. She has a high-pitched scream and
has difficulty being around others.
. The next oldest, Deirdre, 10, has Asperger syndrome, the mildest
form. She converses about subjects like Greek mythology but is socially
awkward.
. Erin, 8, has some signs of classic autism as well as a sensitivity to sight and sound. Her diagnosis: “Pervasive developmental disorder not otherwise specified.”
. Patrick, 5, is in pre-kindergarten part time and also attends
preschool for children with disabilities. He has the same diagnosis as Erin.
. Kiernan, 4, also is in preschool for disabled children. Diagnosed
with severe autism, he rocks back and forth and is never far from a TV.
Meaghan, 7, is the only child not diagnosed with autism. She loves to
draw and often helps her parents with the others.
“It kind of upset her that she was different,” Jeanette says. “I said,
‘That just makes you a special child in this home. You don’t want autism.’ ”
A silent epidemic Autism can transform a loving toddler into a
detached and uncommunicative child. Researchers aren’t sure of its causes
and say there is no cure. But numbers are increasing dramatically. A decade
ago, one in every 2,500 U.S. children had autism; now it’s one in 166, the
Centers for Disease Control and Prevention says.
The Autism Society of America, an advocacy group, says the number of
Americans with autism could rise from 1.5 million to 4 million in the next
decade.
Researchers are studying a number of possible causes and contributing
factors, including the role of genetics and childhood vaccines. Scientists
now believe there is a strong genetic link, but exactly which genes and how
abnormalities occur is still a mystery. The O’Donnells say doctors told them
in 1993, when Caitlin was diagnosed, that it was not hereditary.
They had already had four kids by the time a second child, Erin, was
diagnosed in 1999. Jeanette says the three youngest were conceived while she was using a low-dose birth control pill.
“When autism comes into a family’s home, it dominates the house and
puts the family in a crisis situation,” says Lee Grossman, president of the
Autism Society.
Patrick umpires softball two nights a week to help stretch their single income. The family gets state and federal financial assistance totaling about $2,500 a month, which also includes respite-care money for a babysitter.
There is little couple time in this busy household, Patrick acknowledges. “Our quiet time is 10:15 p.m. to 10:25 p.m., when you pass out on the bed talking to me,” he says, glancing over at his wife.
But they believe all their efforts make a difference. After years of
speech therapy, all the O’Donnell children but 4-year-old Kiernan speak,
though some haltingly. Caitlin stopped saying words at 15 months and didn’t
talk again until she was almost 8. Doctors say Kiernan also could have
mental retardation, though it’s hard to determine because he is non-verbal.
Caitlin, a middle-schooler in both regular and special-ed classes, has
a full-time attendant, provided by the school district to keep her from
running away from classmates. At home, she’s usually in her pink bedroom
with Barbie curtains, at the computer, playing video games or watching TV,
even eating her meals there.
At home, they let go The house may look disheveled and sound like a
war zone, but Jeanette wants it to be the one place the kids can relax and
be themselves after struggling to control their behavior all day at school.
“Sometimes they go nuts here. They draw on the walls. They break the
furniture. They’ve got to have somewhere they can let go.”
A yelp from upstairs turns into crying, as Jeanette meets Caitlin at
the foot of the stairs. “Honey, what happened?” she asks.
Caitlin holds out her hand, wailing, “My fingers.”
“You shut the door on it?” Jeanette asks as she soothes her. “You’ll
be all right.”
“She’s hypersensitive. She is a little dramatic. She can’t help it,”
Jeanette says.
Autism has not affected the kids’ motor skills. All but Patrick, 5, walked by 10 months; he walked three months later. But some of them often walk on tiptoe.
“They don’t like to touch the carpeting,” Jeanette says, explaining their sensory sensitivities.
Erin likes only tight-fitting clothing; Caitlin, when she was younger, and now Kiernan, shed their clothes at home. Kiernan, at 4, walks around in a shirt and diaper most of the time. Deirdre is sensitive to the textures of certain foods.
Sometimes the quirks are more disruptive – and dangerous.
Kiernan is most often the crash culprit. He climbs up onto cabinets
and breaks glasses. He knocks over the file cabinet in the garage turned
playroom. He pushed over the floor lamp in the den and shattered a TV by
knocking it off a table.
Just recently, he broke his right arm when he was climbing onto a
vacuum cleaner box 18 inches off the ground. Lack of impulse control is
another symptom of the disorder.
“He’s got a big body, but he’s only 10 months in his brain,” Jeanette
says.
Deirdre wasn’t diagnosed until last year, at age 9. “We went all these
years and didn’t know she had it,” Jeanette says. “We were so used to a
certain kind” of autism.
Jeanette and Patrick’s lives are far different from what they had
imagined when they met in 1989 in an elevator in Manhattan on the way to the
same New Year’s Eve party. They moved back to Austin, Jeanette’s hometown, when her father was dying; Caitlin was 11 months old. She wasn’t diagnosed until she was 21/2, after months of doctors saying her constant crying was because of colic.
“We did everything we knew how,” Patrick says. “We were raised to
believe doctors knew best. We weren’t doctors, but after dealing with some
… we realized they had less of a clue than we did.”
The diagnosis was sobering. “The norm is, you get really mad that your
kid has it,” Jeanette says. “Then you get depressed because you’ve been
cheated.”
Keeping calm day by day Patrick acknowledges that it is tough to
parent such children. “Jeanette has said I’m one of the most calm people
she’s been around, but I have a lot of frustration and anger underneath. I
have seven people who depend on me for whatever they depend on me for, and I can’t let the frustration or the anger spill over.”
Playing softball twice a week with pals works off his frustration, he
says. “I get to hit a 12-inch-round ball instead of hitting an 18-inch-round
head.”
Jeanette’s mom sometimes helps with the kids, and babysitter Michele
Pollard, 30, has provided some relief for the past 10 years. Paid largely
from state respite-care funds, Pollard takes some of them to bowl, play
miniature golf or the children’s museum to improve social skills.
Jeanette, whose degree was in agricultural education, helped pay for
college by working with autistic teenage girls; until two years ago, she
operated an in-home day-care center to boost the family income. Now she
volunteers mornings at the elementary school, where she retreats to the
quiet copier room to photocopy paperwork for teachers while her kids are in
class. “I’ve had six kids in that school, and I think I kind of owe them,”
she says.
Having six children – even without autism – can be a handful. But
having five with autism has meant learning how to become their advocate and fighting for them.
“They’re here to teach me something, I’m sure,” Jeanette says.