Since I’ve started this blog, I have searched for the hard copy of the front page special report article that was written about Dillon and our struggle to obtain services from the State. Having no idea where this newspaper was, I decided to see if the Orlando Sentinel had the electronic version somewhere, and I found it. What I didn’t realize at the time was how descriptive and compelling the article was, and how little things have changed since this article was written. Here it is in its entirety, and I hope everyone reads it. It is an outstanding article and I’m glad I had the opportunity to continue to be apart of Dillon’s life, as it suggests in the article.
SPECIAL REPORT: LIVING WITH DISABILITIES
Family struggles alone to deal with autistic son
By Debbie Salamone | Orlando Sentinel Staff Writer
Posted February 22, 2004
The loud squeak of a chair echoes through the house as Dillon rocks
wildly back and forth. He leaps up and runs from his bedroom to the
kitchen, where his screams echo through the house. He turns the
lights on, off, on, off. He runs to the bathroom and flushes the
toilet once, again and again. He races into the living room, slams
himself into the windows and throws himself on the couch. He rushes
toward his older sister and pinches her. Then he targets his mother.
She tries to restrain him, but Dillon is almost her size. In an
instant, he slams his head into her mouth. Tiny drops of blood slowly
ooze from her swelling lip.
This is actually a good morning.
The waiting started Oct. 12, 2000. David and Beth
they couldn’t handle their autistic son alone anymore. They needed
help to control the wild behaviors growing worse as Dillon, now 11,
got bigger. They signed up for a state program that provides
assistance to people with disabilities like Dillon’s. But the waiting
list reached into the thousands.
The wait for the Schaefers — like so many other families with
disabled loved ones — would last for years. Today, nearly 14,000
people are in the same situation — waiting for help but never
knowing whether or when it will arrive. More than 1,700 have autism.
Home in lockdown
Dillon is standing on the dining-room table. Someone yells at him to
get off. He grows angry. He turns and with a swift kick, shatters the
glass doors of the stereo cabinet. The damage to the house is getting
worse by the day.
It is February 2001, and it has been four months since the family
requested state help. But the Schaefers are still waiting.
Dillon’s autism has left him unable to speak. He needs help dressing,
bathing and brushing his teeth. His condition is among the most
severe of autism cases, but he is typical of the Floridians with
disabilities who are in the most urgent need of help.
In Dillon’s case, his wild behaviors — and his violence — are the
biggest challenges.
The Schaefers’ Oviedo home is nearly barren, modified especially for
Dillon. The dining room and living room are blocked off from his
access with a locked door and a makeshift plywood barrier. The front
door is locked with a key so he cannot get out and run naked through
the neighborhood.
The refrigerator doors are tied together; a lockbox covers the
thermostat; and just about every door and cabinet has some kind of
lock. Only a few cabinets and drawers can be opened, and it’s only
because the family hasn’t yet figured out how to lock them shut.
The Schaefers use plastic cups and dishes because Dillon likes to
throw things on the floor and break them. They hide just about
everything — even the glass pot that fits in the coffee maker. Only
a few knickknacks are displayed, and they are higher than Dillon can
reach.
In Dillon’s sister’s room, David Schaefer cut a hole in the closet
wall that abuts the bathroom and installed shutoff valves for the
water supply to the bathtub and shower. When one of the Schaefers
wants to bathe, he or she must first crawl into the teenager’s closet
and turn on the water. Otherwise, Dillon would play endlessly in the
bathtub and flood the bathroom while everyone sleeps.
Dillon’s room is the most Spartan place of all. He kicked so many
holes in the drywall that his father lined the bottom half of all the
walls with plywood. A wood lattice covers the window to prevent
Dillon from kicking the glass. Dillon sleeps in the bottom of a bunk
bed and relentlessly kicks the bunk above. His rocking chair sits
next to the bed. There are no toys. Dillon isn’t interested in such
things. He doesn’t even watch television.
“We’ve made our home as safe as possible,” his mother, Beth,
says, “but in a way it’s turned into a . . . I don’t want to say
prison, but . . .”
Uncontrollable exuberance
Dillon is in the back seat of the car, screaming and trying to wrench
free from his car seat. He repeatedly grabs for his mother’s arm,
pinching whatever flesh he can reach. He kicks the car windows. Beth
can barely concentrate on the one-hour journey between Dillon’s
school and their home. The trip takes its toll. She pulls into the
driveway and brings Dillon inside. Then she retreats to the car and
locks herself inside, alone.
David taps on the window: “Are you coming in?” Beth can’t move. For
30 minutes, she sits in the car. Then she takes a few deep breaths
and goes inside. It would be the last time she drove Dillon home from
school.
David took over, but the duty would last a little more than a year.
On Sept. 11, 2001, Beth is told that Dillon’s Orlando school for
autistic children can no longer handle him or meet his needs. He has
been biting and pinching other students.
It has been 11 months since the Schaefers asked for state help. They
are still waiting.
———————————————————————-
Princeton House Charter School helps Dillon enroll at the Childhood
Development Center at Threshold, an east Orange County treatment and
schooling program for profoundly autistic people. The Seminole County
school system pays for it.
Teachers are with Dillon constantly, typically within arm’s reach.
They teach him living skills, such as brushing his teeth and
buttoning his clothes.
He is learning more sign language to communicate. If he acts up,
workers may place a helmet on him to prevent biting or immobilize him
briefly until he is calm.
But at home, the Schaefers, both 43, don’t have such expertise. They
have received advice from teachers at Dillon’s schools and learned
what they could by observing therapists work with their son. But it
has not been enough to teach them all they should know.
All of the Schaefers have been bruised and battered. Dillon’s pinches
are hard and swift. He has bitten his mother on the legs and chest.
Even simple things, such as brushing Dillon’s teeth, are a daily
chore. It takes two people — one to hold his hands behind his back
while the other operates the toothbrush.
Most of the time, it seems Dillon thinks these daily struggles are
fun. He laughs easily. He appears to have no comprehension of the
pain and anxiety he causes. It’s almost impossible to take him out in
public. Getting a haircut or taking him to the doctor’s office are
chores that typically take two people and fill the family with dread.
The Schaefers do not have family outings. It has been years since
they ate out together at a restaurant.
Part of the problem is Dillon’s boundless energy. He is up at all
hours of the night, rocking in his chair, running through the house,
throwing things on the floor. Every day the family is wary of what
Dillon will do. There was the time he threw the cat in the pool; the
day he drank hand sanitizer at school; the nights he has smeared
bananas, coffee grinds and seasoning salts on the kitchen floor.
Psychologists say that behavior is a form of communication. But
Dillon’s messages are almost too horrible for the Schaefers to hear.
‘I break down sometimes’
Dillon is lying on his bed one morning in September 2002 while Beth
puts on his shoes. She doesn’t see it coming. He rears back and kicks
her in the nose. Blood pours down her face. She thinks her nose might
be broken. But the most excruciating pain is in her heart. I’m your
mother, she thinks. I’m just trying to help you. Dillon stares at her
blankly, and she continues putting on his shoes. The school bus will
be here soon. She walks into the bathroom to wipe off the blood. It
has been almost two years, and the Schaefers are still waiting for
help.ď
———————————————————————-
———-
Dillon’s 16-year-old sister, Emily, is old beyond her years. She
watches over her brother when her mother and father cannot. In a few
small ways, the slim teenager is holding on to the last vestiges of
her own childhood. She is enamored with her horse, and the walls of
her bedroom are filled with ribbons she has won in riding
competitions. Since she became old enough to drive, she can shop with
her friends in the mall and go to movies like a regular teen.
But she is reluctant to have friends over to visit.
“Sometimes I resent it because other people go on vacations and
things. Then again, I have a wonderful horse,” she said. “A lot of
kids look up to me for the strength I have with Dillon. People wonder
how we do it. They’re stunned. But I break down sometimes because
it’s hard. Sometimes you take it out on your friends or on other
family members.”
Dillon is a constant influence. Emily writes her school papers about
autism. She is reluctant to go away to college for fear of leaving
her parents without her help. She has even considered becoming an
occupational therapist or a lawyer to fight for the rights of the
disabled.
What could have been
It is a typical Saturday afternoon on Nov. 1, 2003, as Dillon watches
Emily and David pull away in the car headed for the grocery store. He
is agitated, but he is lying on the couch now and appears to be
calming down. Beth walks out of the room. The sound of a shattering
window fills the house. Beth races into the room and sees Dillon
walking out. Shards of glass are everywhere. She spins around and
follows her son down the hall. She sees a few drops of blood. Then
bloody handprints on the walls. Dillon is in the bathroom covered in
blood. A thick piece of skin hangs off his leg. He won’t let his
mother near him to see the wounds. Beth is hysterical. For the first
time, she dials 911. The paramedics help control Dillon, and his
parents are able to get him to the emergency room. He needs 20
stitches.
It has been three years and 20 days, and the Schaefers are still
waiting for help.
———————————————————————-
———-
Dillon never seemed right, even as a baby. He didn’t react to things
or answer to his name. When he was a year old, he would spend hours
laughing while he opened and closed the kitchen cabinets. By the time
he was 3 years old, doctors finally diagnosed him with autism.
“They tell you a lot of success stories,” said Beth, an account
manager and trust officer at SunTrust. “They don’t tell you about the
ones that aren’t successful. You always think you’re going to be one
of the success stories. I know what I have now. I know he’ll never be
cured.”
It’s only normal to wonder why such things happen. At times, David, a
former high-school and college athlete, wonders whether he has been
punished for the routine kinds of things popular athletes do and say
to other kids in school. Beth wonders whether she’s supposed to seize
on the experience to crusade for a better world for people like
Dillon. And occasionally, they think about what might have been.
David, who works nights as a freight-company supervisor, passed a
Little League game while driving through town one day.
“I’ll never get to take my boy to play ball, never be able to be a
coach or be on the sideline for him,” he thought. “I’ll never be able
to do the stuff I did with my dad.”
Emily could see his pain.
“My dad had a tear in his eye. It was hard for me to look at that,”
she said. “My dad thought he’d be taking his son to ball games.
Instead, he’s putting him in a stroller while people stare and Dillon
picks up leaves and eats them.”
Beth wonders about how Dillon has changed her relationship with
Emily. “It’s provoked a lot of fights,” Emily said. “We’ll argue
about who’s going to watch him.”
Beth expects Emily to excel in most things. Particularly, she
stresses becoming an independent and successful person so that one
day Emily will be up to the task of being her brother’s guardian once
her parents are gone.
“Sometimes I think, ‘Would I really be this upset with her if I
didn’t have him? Do I expect too much from her?'” Beth said. “I have
to ask another parent if they feel that way. Sometimes I think I
expect her to excel too much because he won’t.”
But they are only fleeting thoughts, pushed aside by the daily
struggles that have strained the Schaefers’ marriage by splitting
Beth and David’s schedule.
David, who works from 11 p.m. until anywhere from 10ƒ|a.m. to noon the
next day, takes care of Dillon when the boy arrives home from school
in midafternoon. He wrestles with him, puts him on the backyard swing
and sometimes jogs while pushing Dillon in a stroller.
Emily takes over about 4 p.m. when her father goes to sleep. Beth
arrives home at 6ƒ|p.m., and her and Emily’s evenings are filled with
watching Dillon.
David, a laid-back man and a former college-football linebacker, is
able to handle Dillon’s physical energy and attacks. But the small-
framed Beth and Emily are at a disadvantage.
“I remember my father telling me this old adage that you’re never
given more than you can handle,” Beth said. “There have been times I
think that’s a lie.”
Classified as crisis
It is 3 a.m. on Nov. 4, 2003, just days after Dillon got his
stitches. He has awakened the family with his screams. He demands a
bath, but Beth refuses. He tries to pinch and bite Beth, but she
pushes him away. He runs to the family room and pounds his fists on
the sliding glass door. Then he throws himself to the floor and kicks
the glass. Beth pulls him away by his arm and pushes him onto his
bed. She wraps a comforter around him and sits on him as he
struggles. Emily is standing nearby, trembling and in shock. She is
afraid for her mother and her brother. Afraid that this is getting to
be too much for all of them to handle.
It has been three years and 23 days, and the Schaefers are still
waiting for help.
———————————————————————-
———-
Beth thinks her situation may now be classified as a crisis, which
would give her emergency help. She meets with a caseworker for the
Florida Department of Children & Families in early December. She
brings the police report. Workers agree that it is now time for the
Schaefers to get help.
H. David Johnston, director of the Orlando-area developmental-
disabilities program for DCF, said Dillon’s injury from kicking out
the window pushed his case to a crisis.
On Dec. 31, three years and two months after the Schaefers originally
begged for assistance, they get into the program that will provide
behavior training for Dillon, therapies, breaks for the family and
other services.
It is a welcome relief for the Schaefers. They recently chose a
support coordinator who is putting together a plan for services.
They think behavioral therapy will improve Dillon’s actions around
the house and teach them how to handle him. But their tribulations
are far from over.
They know that eventually, Dillon will get too big and too strong for
them to keep him at home. When that day comes, they will place him in
a special group home.
But they will delay as long as they can, because they love Dillon, no
matter how difficult their lives. At least today, they see new hope
for their son. And new hope that their lives as a family might get a
little better.
Today, the waiting is finally over.
alifewithautism 