OrlandoSentinel: Family struggles alone to deal with autistic son

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-----Original Message-----

From: Randee

>

> Hi,

> Take time to read this. It is an excellent article. Debbie Salamone is

> doing a series of articles.

>Family struggles alone to deal with autistic son

> --------------------

>

> By Debbie Salamone

> Sentinel Staff Writer

>

> 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. and Beth Schaefer realized 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, 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.

>

> 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.

>

> 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. & #61560;

>

>

> --------------------

>

>

> Dillon's 16-year-old sister, , 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. 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

> and 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, , 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.

>

> , 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. "

>

> 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 .

" It's

> provoked a lot of fights, " said. " We'll argue about who's going to

> watch him. "

>

> Beth expects to excel in most things. Particularly, she stresses

> becoming an independent and successful person so that one day 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 's

> schedule.

>

> , who works from 11 p.m. until anywhere from 10 & #61486;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.

>

> takes over about 4 p.m. when her father goes to sleep. Beth arrives

> home at 6 & #61486;p.m., and her and 's evenings are filled with

watching

> Dillon.

>

> , 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

> 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. 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. ston, 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.

>

> Debbie Salamone can be reached at dsalamone@... or

> .

>

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