Autism, main story
Sunday, January 06, 2002
By Kelly
Bothum
Of The Patriot-News
On a mild Sunday afternoon,
Dan scampers into kitchen and makes a beeline for the screen door. He can't
maneuver the lock so he stands there waiting for someone to unlock it for him.
Tom uses this as a chance to work on Dan's verbal skills.
"I want," Tom
says, pausing a few seconds between each word.
Dan responds with an
unintelligible mix of sounds.
"I want," Tom
says again.
"Euh annt," Dan
answers.
"Outside," Tom
says.
"Side?" Dan
replies.
Tom obliges with a click of
the screen lock. Dan's out the door, settling on a patch of grass just beyond
the concrete patio in the spot where his inflatable pool sat until a month
earlier.
He plays with the mound of
sand that remains, throwing tiny handfuls of it into the air and smiling as it
falls around him. Sometimes he stops and stares at a patch of grass or looks up
at the sky, content to be alone with his thoughts. Tom and Nancy watch from the
table in their kitchen.
"One of the great
things that is refreshing about children like Dan is they can't pretend. They
don't understand metaphorical language," Tom says. "It's just raw
emotion and that's really refreshing. There's no game playing."
The couple has worked hard
to bring Dan out of his cocooned world. They're constantly prompting him to
talk, to say what he wants to eat, where he wants to go, which video he wants
to watch.
He has a slew of therapists
whose services are covered by medical assistance which Dan qualifies for
because of his medical condition. Wrap-around services from Edgewater
Psychiatric Center provide assistance for Dan at home and in school. A staff
member helps him get ready for school and stays with him in class for part of
the school day.
Dan visits weekly with
speech therapist Ted Huryn to increase his verbal communication. He also works
with aquatherapist Esther Strader in an indoor pool, where the combination of
motor exercises and rush of water across his body helps soothe his senses
running on overdrive.
"For certain, we have
tried to get in his world, but by the same token, he's a very curious kid. He
wants to find stuff out. He wants to seek things out. If you take him
someplace, he'll remember," Tom says. "He'd know when I took him to
get a haircut in downtown Mechanicsburg that there's a pet store at [routes]
114 and 11. He's like, 'Why aren't you taking me there, jerk?' At first, it's
hard to figure out that sort of stuff."
Three times a year, Dan's
behavioral therapist, Karen Hornung, revises his behavior treatment plan, which
dictates strategies to deal with his autism. It includes specific goals for Dan
(better verbalization, improved social skills) and ways to achieve those goals
(ignoring his one-word utterances, teaching him to take turns).
At home, Dan adheres to a
strict schedule with frequent reminders about what his next task is. The same
is true at Middle Paxton Elementary School, where he's in an autism-support
class with three other pupils, all boys. Teacher Amy Nissley and the aides
involve the pupils with quick activities, none more than 15 minutes or so. The
short bursts keep the children from getting frustrated or distracted.
Each time Dan completes an
activity, he removes an icon with the corresponding task from his daily
schedule. The icons -- describing reading, computer and other activities -- are
part of the Picture Exchange Communication System, which is used to communicate
with autistic children.
"They like to know
what's coming. It's very important and it helps them stay stable in the sense
they can anticipate what's coming," Karen says. "Oftentimes if
something comes up and it's not what was planned, they get upset."
Repetition and routine are
constants in Dan's life. The challenge is trying to expose him to new things.
Over the past months, Nancy and Karen have made it a priority to get Dan
comfortable with going out in public. During the summer and into the fall, he
and Karen took weekly trips to places like Arby's, Media Play, even Lake Tobias
Wildlife Farm in Halifax.
Dan's tolerance for going
out has increased since the excursions began, Karen says. The people and the
sounds aren't as overwhelming to his senses. And he's starting to understand
how he's supposed to act in public, which is critical.
"Before, we could only
try to go through drive-throughs. When Nancy and I would try to sit down in a
restaurant, he would get down on the floor or under the table," she says.
"He'd get impatient because it was a long wait. In Dan's mind it was like,
'Why should I just sit there?'"
The improvement is subtle
but noticeable. On a trip to Friendly's with Karen one weekend, Dan sits
patiently in the booth waiting for his plate of French fries. Once the fries
arrive, he eats a couple -- his usual quota -- and waits for Karen to finish
her Fribble.
Only once does he duck his
head under the table to sneak a peak. He likes affectionOn the weekends,
everything slows down in the Richey household. Tom works long hours during the
week, leaving at 4 a.m. and often driving to New York or Philadelphia for his
job running construction projects and overseeing maintenance for a property
management company. Sometimes he's gone for a couple of days.
Nancy spends the most time
with Dan during the week. She works part time from home on her recruiting
business when she can, usually when he's in school.
Saturday morning, Dan is
their alarm clock. Around 8 or 9 a.m., he bounds into their room and onto the
bed to cuddle and snuggle between his parents. Unlike some autistic children,
the 8-year-old likes affection, taking in hugs and compliments like he was
drinking them through a straw.
He especially loves to
snack on Tom's homemade bread, which he makes every couple of weeks and packs
with whole wheat, fiber, protein and other nutrients. It's also one of the few
things Dan eats willingly.
Picky eating habits are
common among those with autism and Dan is no exception. Arby's chicken fingers,
white-cheese pizzas made by his father and an occasional peanut butter sandwich
round out the short list of foods he'll eat without a fight. Corn chips are the
closest he gets to vegetables, his mother says ruefully.
To make sure Dan gets his
nutrients, Nancy feeds him a vitamin cocktail prescribed by a nutritionist. The
grape-flavored liquid vitamin packs all his nutritional needs except for
vitamin C. It's also not cheap; the vitamin runs $50 a month and isn't covered
by the family's insurance. Visions for futureWatching Dan amuse himself outside
with the sand, Tom and Nancy say they have great hopes for what Dan can
accomplish when he gets older. His future is something Nancy's been thinking
about a lot lately since she started taking a class offered through Temple
University about advocating for people with handicaps and special needs.
They imagine him with
friends, which he doesn't have many of right now. Nancy doesn't want to limit
Dan by expecting he'll have to live in a group home as an adult. They envision
him living out of their house, either independently or with a house mate.
Given his love of nature
and the outdoors, he might be a park ranger.
Whatever it is, Tom and
Nancy want to encourage him to find what he likes.
"Other people may say,
'Oh, he'll be a janitor at McDonald's,' and that's what you don't want people
to do," she says. "I want them to say he can be a park ranger if he
wants to. Or maybe he does want to be a janitor at McDonald's. But right now,
let's shoot far."
They don't imagine he'll
always live with them. One thing Nancy says she tries to do is think how it
would be different raising Dan if he didn't have autism. Would she let him stay
home forever? Probably not.
"I'd say, 'No, Dan,
get your own life.' So now I feel the same way," she says. "If he can
live independently, but he says when he graduates from high school, 'Mom, I'd
like to stay home for a couple of years,' maybe we'd do what all parents do --
give him a couple of years and then give him the boot." She finishes the
sentence with a laugh.
Dan pulls the screen door
across and let's himself inside.
"Oh yeah, Danny, we're
talking about you," Nancy says, smiling. "We're talking about what
you're going to do. Lots, right?"
He wears a mischievous
smile like he's the only one in on a good joke.
Kelly Bothum may be reached
at 255-8440 or kbothum@patriot-news.com.
Copyright 2002 The Patriot-News.
Used with permission
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