Thursday, August 27, 1998BY SUE MacDONALD
The Cincinnati Enquirer
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Stevie exhibits his disorder most obviously in rapid and repeating hand motions.
(Michael E. Keating photos)
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On a sunny afternoon in June, Nancy Fuller sits with her son Stevie on the living room floor of their airy Anderson Township home.
They quietly read from A Color of His Own, one of his favorite books.
"Elephants are . . .," Nancy prompts.
"Gray," says Stevie, filling in the missing word before turning the page methodically.
"Pigs are . . . ." Nancy waits.
"Pink!" Stevie shouts and smiles.
"You and I will always be . . . ," Nancy says, waiting for Stevie to finish the last word of the book.
"Alike," he says, lifting his head and staring into his mother's face.
"Thanks for looking at me," she says, returning his gaze with a hug.
Stevie, 5, runs to his playroom, and Nancy is nearly speechless at what has just transpired.
Until this moment, Stevie has never shown interest in reading along with a story, sitting attentively or holding anyone's gaze. That's because Stevie has autism, a lifelong disorder that develops in childhood and hinders a person's ability to relate to others. He was diagnosed 2 1/2 years ago.
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Nancy Fuller holds Stevie's attention in his room.
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Four months ago, Stevie would not sit still for more than a few seconds. Unlike most curious 5-year-olds, Stevie didn't talk, didn't make eye contact and didn't pay attention to his two brothers.
His odd, repetitious behaviors, common to people with autism, included constantly clapping and rubbing his hands together. Read from a book? Not a chance. Instead, he would rifle furiously through the pages, not allowing anyone to see, touch or share the book.
Stevie lived in his own world, and the Fullers' efforts to reach him through speech therapy, special education tutors and even reflexology -- a form of therapeutic foot massage -- had been unproductive. Today, things are changing, and Nancy Fuller and her husband, David, credit Stevie's progress to a novel program called SonRise.
It's based on love, acceptance and learning about autism from the inside, not trying to change it from the outside. They discovered SonRise in December and began adopting its philosophies in February.
"We don't have any doubts that this is the right thing for him," says Nancy, 38, who works from home as manager of national account development for Sharonville-based Tenneco Packaging.
"We've seen more in terms of development this last seven to eight months than we did the prior two years," she says. "And considering how much kids grow in that range, that's a very big statement."
It's also a tremendous shift from their previous attempts to treat Stevie's unpredictable and frustrating behavior.
"Before SonRise, (we were) thinking externally," she says of their pursuit of autism specialists.
"My take was that I, Nancy, a businesswoman with no training in autism, can't help my son. But my occupational therapist can, and my speech pathologist can, and all the experts out there can "fix' my son. So I concentrated on making sure I drove him to his therapy appointments each week.
"We spent 1 to 1 1/2 years pursing external therapies . . . and not getting any significant results," she says candidly.
"When SonRise came along, I thought, "Oh, my God. The answer is right here in our own home.' "
Dear Stephen,
I love you so deeply in my heart . . .
At almost 5, you're a stubborn little guy, but it will be through that trait that you will persist.
-- Nancy Fuller, writing in a diary diary she and David began Dec. 12, 1997 after their visit to the Option Institute in Sheffield, Mass.
Before that week your Mom and I went to SonRise, I struggled with my ability to recognize the gift that you were to me.
Now and forever, I will treasure your every waking moment of every day.
-- David Fuller
Dec. 12, 1997
Stevie, all 42 inches and 38 pounds of him, is the middle child of David and Nancy Fuller. He is flanked by his brothers, Andrew, 7, and Carson, 3. Born Dec. 20, 1992, he has piercing blue eyes and reddish brown hair. He has a throaty giggle just like his mom's.
August marks the six-month anniversary of the Fullers' decision to implement SonRise in their home. An upstairs guest room has been transformed into Stevie's activity room, known as the SonRise Roommarked by its bare walls.
Inside are a chalkboard, a portable camping toilet, a minitrampoline and mats to burn off energy, and high shelves filled with toys, books and learning materials.
Gone from the room are Stevie's "fixations" -- stereos, a TV, battery-operated devices, computers.
According to the SonRise philosophy, the fewer the distractions in the room, the greater the chance for child-to-parent trust and learning.
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Personal contact helps Stevie improve his interaction skills.
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Stevie's parents, grandfather and a dozen volunteers -- a friend, a neighbor, three acquaintances from church, among them -- spend 60- to 90-minute shifts, 5-7 hours a day, seven days a week, working one on one with him.
When Stevie squeals in excitement, they squeal, too. When he runs around the room, they run around the room. If he wants a book, they share one with him.
As often as possible, they encourage the very behaviors that autistic children avoid -- eye contact, touching, hugging, bonding. The goal? Meet Stevie on his terms and help him feel loved and accepted, so that eventually he can venture beyond his autism into the larger world with new skills and feelings learned here.
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CAUSE UNKNOWN
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Autism is a developmental or behavioral disorder that specialists can describe but not pinpoint. Its cause is not known.
More common in boys than girls, it's usually noticeable by age 3, according to Columbia University Children's Medical Guide (DK Publishing; $29.95). About two of every 10,000 newborns are autistic, meaning they are unable to relate to others.
If untreated, autism lingers in adulthood. Autistic adults tend to be shy, withdrawn, isolationist and uncommunicative. Most autistic children avoid eye contact. Many do not talk, or when they do, they're unintelligible. Often, people with autism fixate on inanimate objects or predictable behaviors.
Autistic children and adults like routine, order, sameness. Some, like the character, Charlie, played by Dustin Hoffman in the movie Rain Main, are highly intelligent. |
"Autism is a wall between (him) and the outside world," Nancy says. "Some behavioral techniques bang the wall down from the outside. This is a technique in which we're going to crawl inside the wall and stand beside him, coach him and be non-judgmental.
"And when he feels that really strong bond with us and others, the hope is that he'll start to bring the wall down himself."
The SonRise philosophy is simple: Love and accept your child unconditionally and let the child lead the way. It's different than other approaches, such as rote tutoring or discipline techniques that try to mold a child's behavior.
"We believe ultimately it's the parents who have the most love and want the most for their child and will support the child," says Jonathan Alderson, SonRise program administrator. "We're the only program in the world that works with special children and adults to focus on attitude as the primary, fundamental resource of the parents."
SonRise acknowledges critics who say it's too mushy, gives parents undeserved "expert" status and holds out false hopes about a child's future. But the Fullers have discovered otherwise. "This program jump-starts how quickly you can intervene," says David, 39, an independent sales contractor.
"Prior to visiting the Option Institute, I was either grieving about the past or worrying about the future. The SonRise program taught me to let go so I'm more energized and happy for the moment. This feeling of happiness exists by accepting where Stephen is today."
Says Mr. Alderson: "People don't do this because we tell them to. They do it because they see results."
Unlike everything else the Fullers have tried before with Stevie, SonRise is working.
I want books.
-- Nancy Fuller, March 13, recording Stevie's emerging language.
The first year of Stevie's life was absolutely normal.
Then his babbling and speech stopped. He quit making eye contact. He ignored his family but was mesmerized by photographs, television and digital read-out lights on the living-room stereo receiver. From ages 2to 4, he chafed at hats, shoes and shirts with collars. He ate with his hands, threw unpredictable tantrums and held his ears when Nancy vacuumed.
"He was exceptionally into himself," says Danny Dell, 68,of Mount Lookout, Stevie's grandfather. "All he wanted to do was watch TV and grind his teeth and bang his head and not look at anybody."
Stevie fixated by hopping up and down or rubbing his hands together repeatedly. He threaded a blanket through his hands, back and forth, feeling it at predictable spots. Once, at a building supply store, he stood and stared at the ceiling fans, so entranced his parents had to pull him away.
When Stevie was 2 1/2, doctors at the Cincinnati Center for Developmental Disorders in Avondale diagnosed his problem as autism and sent the Fullers home with a recommendation for speech therapy and special education -- and little hope of a cure.
"I remember leaving there feeling emotionally floored -- and totally alone," Nancy says.
For the next two years, the Fullers spent $6,000-plus a year for weekly visits to occupational, speech and special education therapists in Cincinnati. They took Stevie to a reflexologist and an osteopathic physician. They enrolled him in a preschool class at Sherwood Elementary School for normal and developmentally delayed children.
But he remained aloof.
Then in early 1997, Nancy's cousin gave her the book SonRise. In September, Nancy read it.
Nancy and David visited the Option Institute in December 1997. They were so impressed by its message of hope, optimism and unconditional love for autistic children that they had Stevie's SonRise Room ready by February.
Encouraged by the positive changes they were seeing at home, they returned to Massachusetts with Stevie in May for a week of intensive SonRise training and interaction.
The Fullers have invested $8,500 in Option Institute training, including couples counseling, playroom therapy for Stevie, evaluations of Nancy and David's encounters with Stevie and a monthly phone consultation.
They've also spent a few hundred dollars to equip and renovate the activity room and expand the deck so Stevie can play outside with the least amount of distraction. They pay a baby-sitter 40-50 hours a week to care for Carson and Andrew when they are working or in the room with Stevie.
Formal time in the SonRise Room began in February, with Nancy and David taking turns several hours a day. Then Stevie's grandfather started helping in the room. Then a neighbor.
Involvement grew. The team of family and friends averaged 24 hours a week with Stevie in March, 28 hours in April, 32 in May and between 40 and 50 through June, July and August.
Dee Tibbs, Stevie's preschool teacher at Sherwood Elementary School, was skeptical of the Fullers pursuit of SonRise because of the commitment required. But she has been impressed with Stevie's progress.
In the spring, she noticed Stevie singing songs in class, drawing with chalk on the playground and speaking one-word sentences on his own -- much different from his leave-me-alone behavior.
"I'm thinking, If this works, why would people tell parents who are doing this program, "Don't do it. Don't hurt yourself. It's too hard.' If this works, why not try it?" she says. "I like the happiness and peace involved in this program."
Ms. Tibbs now volunteers in the SonRise Room three hours a week.
This morning, you were coloring up a storm with crayons!
-- Nancy Fuller's journal
April 25
By late spring, Stevie shows his substantial progress. He begins to talk again for the first time in four years. By mid-March, he is reciting the ABCs. By mid-May, his vocabulary reaches 100 words, up from a base of 20 in February. (A typical 5-year-old has a vocabulary of 8,000 words.)
On July 8, 11 of Stevie's volunteer helpers meet at the Fullers to discuss his emerging behaviors -- more eye contact, a greater interest in reading and sharing books, pretend play, a vocabulary list of 120 and emotional development, including spontaneous crying.
During the meeting, Stevie arranges his ABC blocks in a stack four blocks high -- in reverse alphabetical order, starting with Z.
You're beginning to comment on life -- noticing other people wearing "hats' and pointing up at the evening sky and saying, "da moon.'
Your latest fascination is with books. Now we realize that our job is simply to let you lead the way, indicating where your motivation is. Then we follow you into that area and jump in head first . . .
On with our journey . . .
-- Nancy Fuller's journal
July 9
Where do the Fullers go from here?
Wherever Stevie takes them, his parents say. They hope to have a base of volunteers to spend 40-50 hours a week in the room with Stevie for the next year. When they have a grasp of his abilities, they'll decide what to do about kindergarten and school.
SonRise has taught them to let go of expectations, frustrations and setbacks common among parents of children with behavior problems or disabilities. Instead, they cherish each day's accomplishments -- a fundamental SonRise philosophy.
"And I haven't been burned out yet," Nancy adds.
Not when she has days like Aug. 11.
That's when Kim Cook, a college special education major and the family's summer baby-sitter, poked her head in Nancy's basement office to describe what had just occurred upstairs.
Stevie had picked up A Color of His Own, walked up to Andrew, looked at him and said, "Read book."
They sat next to each other, and Andrew read the book to his little brother.
Then they read it again. And again.
Stevie ran upstairs to get a second copy of the same book, and they read their books side by side.
For 40 minutes, the boys sat together and read.
"That," Nancy says, with amazement, "is the longest time they've ever spent together like that."
She and David are optimistic there will be many more.
"I want everything for him," Nancy says, "but I don't know how far to go with that.
"What the end product is, I don't know, and at this point, I don't really care. There was a time when I just wanted him to be normal. But right now, I just want him to keep going and be happy and enjoy the journey he's on."
SonRise trains parents to teach autistic kids
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