Megan and Jim Leney of Saratoga were dejected
when they learned that their 6-year-old son
Evan had autism. Doctors told them it was a
lifelong condition. But since the Leneys discovered
The Son-Rise Program®
in Sheffield, Mass., they have become optimistic
that a cure is possible.
People with autism are often preoccupied with certain routines, rituals and objects, and they show little interest in social interaction. According to the fourth edition of the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders, autism sufferers also show impaired eye contact, facial expression and language development and express distress when there's a change in their routine.
While most programs designed to treat autism
and other related disorders focus on learning,
Son-Rise focuses on social interaction, says
Kristin Eclevia, a Son-Rise consultant who works
with Evan. Autism occurs in 1 in 500 individuals,
according to the Autism Treatment Center of
America™, which has offered the Son-Rise
treatment since 1983. Although no one knows
what causes autism, some researchers believe
it is genetic. Researchers have also discovered
that autistic children possess abnormally high
levels of mercury. Some believe that repeated
exposure to vaccines that contain mercury may
have caused children to develop autism.
Researchers disagree on whether autism can be cured.
One common method of treating autism is occupational therapy, in which a therapist works with the patient on fine and sensory motor skills. Certain motor skills, such as throwing and catching balls, are often difficult for people who have autism. Other therapies include speech/language therapy, drug intervention and sensory integration therapy, where a person is repeatedly exposed to sensory stimuli.
Of the treatment programs Megan considered after Evan was diagnosed in December 1999, she said Son-Rise gave her the most hope. "When we have that optimism, we can just accomplish so much," Megan said.
Under Son-Rise, parents and volunteers work with an autistic patient in a distraction-free work/play area for several hours a day. The parents and volunteers focus on building the patient's social interaction skills, such as eye contact and attention span. Once an autistic child learns these skills, he or she can pay attention to teachers and other children in school instead of being in his or her own world, Megan said.
Since the Leneys began the Son-Rise treatment at their home in November 2000, they have noticed dramatic changes in Evan's behavior. Before Evan started Son-Rise therapy, he had trouble adjusting to changes. These changes included when his 3-year-old sister, Hannah--who does not have autism--was born. Megan says Evan would experience a lot of anxiety and throw tantrums, more than a typical child does. When other children weren't playing exactly the way he wanted them to, he would become so frustrated that he would push, kick and hit them. "Any little thing could set him off pretty easily," Megan said.
Megan needed to help Evan do things that came naturally to other children, such as feeding and dressing himself. Although he did a lot of pretend play, he had trouble pretending when he was alone, and wanted Megan to pretend with him.
Instead of paying attention to other people, Evan fixated on what interested him, including counting paper money and going from a pretend "airport" to a pretend "hotel." He tried to squirm out of hugs. Although Evan, who has a high-functioning form of autism, has always demonstrated adequate verbal skills, he often brought up different subjects when people talked to him, and rarely looked people in the eye. He also didn't fulfill simple requests, such as picking up toys.
Now, Megan says, Evan almost always answers questions, including open-ended ones, and will talk about subjects that other people bring up. He greets people, says good-bye to them and asks when they're returning. In addition to being more imaginative when he plays by himself, he does what people ask. He also hugs Megan and tells her he loves her.
Diane Avila, a San Jose State University student who began babysitting Evan in April 2000, has worked with Evan as a Son-Rise volunteer since March 2001. She has also noticed changes in Evan since she first met him. She says he can carry on longer conversations, and that Evan no longer whines and throws fits when she accidentally moves a toy she wasn't supposed to touch. Instead, he asks her why she moved it.
Linda Draa, a speech/language therapist in Monte Sereno who works primarily with children who are autistic, also knew Evan before he started Son-Rise therapy. She began seeing him in February 2000 twice a week for speech therapy, and he was making steady progress, she said. Draa saw Evan until Megan and Jim decided to abandon other therapies and focus on Son-Rise. |
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The White Room
The Son-Rise volunteers who work with Evan
conduct one- to three-hour-long sessions with
him in a playroom at his home.
Megan runs the program full-time, while Jim,
a product manager of a software company, conducts
sessions with Evan after work.
The playroom, which used to be Hannah's room,
stays locked during sessions so that no one
enters or leaves, which allows Evan to focus.
The Leneys had the door to the room custom-made
to block out sound from other parts of the
house, and they painted the walls a neutral
shade of white. They also covered the window
with film so that Evan wouldn't get distracted
by the outdoors.
In the playroom, volunteers, including parents,
focus first and foremost on eye contact. When
people make and maintain eye contact with
others, they form connections with them and
learn, Eclevia said.
During one of Eclevia's sessions with Evan,
as they rolled toy cars across the hardwood
floor, Eclevia stayed low to the ground so
that Evan could look at her. When he looked
her in the eye, she thanked him. A mirror
hangs on the wall below the window so that
Evan can see others at all times, and so that
he's more likely to establish eye contact.
Volunteers keep their faces alive and animated
to model facial expression. They also do this
so that Evan will find people interesting
and want to interact with them. For instance,
when Evan counted some fake 100-dollar bills,
showing that he could add three-digit numbers,
Megan gasped and fell down like actors do
in slapstick comedies to show how impressed
she was. She and the other volunteers want
to teach Evan that people can be fun and predictable,
so that he will initiate interaction with
others.
What sets Son-Rise apart from other therapies,
Eclevia said, is the philosophy that wherever
the child is at any given moment is OK. Volunteers
join the child in activities the child likes
to do, and then help the child progress by
using what Eclevia calls "gentle persistence."
For instance, if a volunteer brings a game,
and Evan doesn't want to play it, the volunteer
will continue to bring it until Evan expresses
interest in it. Son-Rise volunteers believe
that patients can potentially do anything
asked of them. "You don't have these self-limiting
beliefs," Eclevia said.
Eclevia says some people believe The
Son-Rise Program® is free-flowing,
and that volunteers follow patients all day
long--both myths, she says. Volunteers enter
sessions with goals, such as increasing the
patient's attention span, and will try to
help the patient meet the goal in a fun way,
such as by playing a board game. The volunteers
who work with Evan meet every two weeks to
evaluate his progress and decide what direction
to take next.
Although Evan may be behind in academics compared
to other children his age, Megan believes
he can catch up more easily once he can pay
attention to others and build friendships.
Although the most important focus of Son-Rise
is connecting with people, she said, "We do
stretch him. Definitely."
Megan says that she, Jim and the other volunteers
who work with Evan try to make the therapy
fun for him. He's learned how to write words
by writing pretend "speeding tickets" and
labeling places on maps he's drawn. He's also
learned how to add by counting fake money.
Volunteers work with Evan in the playroom
as much as possible, Eclevia said. According
to Megan, he usually spends about five hours
there each day. However, she said, she and
the other volunteers would like Evan to spend
eight to 10 hours a day there, and are looking
for more volunteers to work with him.
After observing Evan for an hour recently,
Draa said his most dramatic improvements were
that he wasn't self-stimulating as much--he
used to pick his face a lot--he was making
better eye contact and he was much more affectionate.
A great thing about Son-Rise, she said, is
that it gives parents a way to spend productive
time with their children. Anytime parents
can give a child that much attention, she
said, it's a recipe for success.
Debbie Dellar, a full-time mother from Saratoga
who also works with Evan, had trouble believing
he was autistic when she met him in July 2001.
"He was so affectionate," she said. "He really
opened his arms up to me almost immediately."
Genesis of Son-Rise
Barry Neil and Samahria Lyte Kaufman developed
Son-Rise in the 1970s, when doctors diagnosed
their 18-month-old son Raun as being severely
autistic and mentally retarded. Raun, who
had an IQ under 30, was also mute. According
to the Autism Treatment Center of America™,
doctors told the Kaufmans their son had a
hopeless, lifelong condition.
According to a book Neil wrote called Son-Rise:
The Miracle Continues, he and
Kaufman were dissatisfied with doctors' pessimistic
prognoses, so they decided to work with Raun
on their own. By observing his behaviors,
they concluded he had trouble making sense
of the world. They figured that if they punished
him for his autistic behaviors, he wouldn't
want to make sense of the world and would
withdraw further. So they joined Raun in his
behaviors, which included spinning plates
and rocking back and forth. They also worked
12 hours a day with him in a bathroom that
had monochromatic tile walls and was free
of distractions except for toys, which were
placed on high shelves.
Within two and a half years, Raun learned
to speak, solve puzzles, make eye contact
and recognize that he was a separate person.
According to Son-Rise: The Miracle Continues,
Raun had no traces of autism by age 4.
Raun graduated from Brown University with
a degree in biomedical ethics and is now director
of global outreach for The Son-Rise
Program®.
Neil and Kaufman have written 12 books, including
Son-Rise, published in 1979. The book became
the subject of the NBC-TV movie Son-Rise:
A Miracle of Love. Barry released Son-Rise:
The Miracle Continues, an updated version
of his previous book, in 1996.
Neil and Kaufman founded the Option Institute,
a nonprofit learning center, in Sheffield,
Mass. The Autism Treatment Center of America™
is a division of the institute.
The cost for starting a Son-Rise
Program® in one's home varies.
While a person could conceivably start a program
after reading Son-Rise: The Miracle Continues,
one could also attend seminars run by the
Option Institute, Megan said. Attending seminars
on how to start and run a Son-Rise Program
costs upwards of $1,495 per attendee.
Evan Leney, 6, who has autism, participates
in The Son-Rise Program®,
which offers a unique treatment for the disease.
His mother, Megan, runs the program from their
home.
Home Therapy
Because of the time commitment Son-Rise involves,
Megan was unsure whether or not she could
run a Son-Rise Program®
from her home. She became convinced in November
2000, after she attended a five-day seminar
in Milpitas run by Raun's sister, Bryn Hogan.
When the Leneys started working with Evan
in the playroom last year, he wanted to hide
under blankets and pillows. Megan didn't understand
why he did this, or why he performed rituals
like going from the "airport" to the "hotel."
However, by joining him in these activities,
she said, she began to understand his way
of thinking.
"He really makes a lot more sense to me now,"
Megan said. "It's very comforting for him
to have a scenario be predictable. As I was
doing [rituals] with him, I thought, 'Oh,
this is kind of comforting,' because I really
would forget about all the things in my life
for a little while. It was kind of almost
meditative. I feel like I'm getting to know
him because before we started The
Son-Rise Program®, he was
just such a mystery to me."
Eventually, Evan and Megan added plastic people
to his ritual of going from the "airport"
to the "hotel." Then they pretended to have
the plastic people go other places and call
each other on the phone. The pretend phone
conversations helped Evan learn how to have
conversations with other people, Megan said.
In the Beginning
Megan and Jim first noticed Evan was different from most children when he was 18 months old. He was fussier than most children, he looked at his mother less, and he didn't like it when people held him.But his parents never would have thought he had autism, Megan said.
Photograph by Paul
Myers Evan Leney, 6, who is autistic,
especially
likes cars. Kristin Eclevia, a Son-Rise
Program® consultant, brings games
to their therapy
sessions to help Evan improve his social interaction
skills.
When Evan started preschool at Saratoga Parent
Nursery School in September 1999, he played
alone and often engaged in repetitive play,
such as opening and closing the playhouse
door for 25 minutes.
The teacher suggested that the school psychologist
evaluate him .The psychologist said he had
language difficulty, since he ignored what
others said.
It was a private psychologist who diagnosed
Evan as having a pervasive developmental disorder,
the category of disorders that autism falls
under. As the Leneys read about autism, Megan
said, they realized they were reading about
their child.
In December 1999, the Leneys transferred Evan
to the special education preschool at the
Saratoga Union School District, which had
a structured environment, and where instructors
focused on the students one-on-one. Evan also
engaged in occupational therapy one or two
hours a week.
Evan's special education preschool recommended
that he start kindergarten in fall 2000. But
kindergarten at Foothill Elementary School
was more rigid and disciplined than the preschool
and had a strong academic focus. As a result,
Evan experienced a lot of anxiety and misbehaved
at home. His parents pulled him out of kindergarten
in December 2000. Although the kindergarten
wasn't lacking in any way, Megan said, she
and Jim believed they could do more with Evan
at home with Son-Rise.
Eclevia said she also believed in other therapies,
such as occupational therapy. However, she
describes Son-Rise as the "main umbrella"
that can be supplemented by other therapies.
Evan Leney, 6, embraces his mother, Megan.
Megan says that before she placed Evan in
The Son-Rise Program®,
which treats autism, he would squirm out of
hugs.
Deflecting Criticism
Raun Kaufman says the Option Institute, the nonprofit learning center that his parents founded in Sheffield, Mass., has worked with more than 2,000 families and professionals in implementing Son-Rise, and not only for autism. Son-Rise directors have also worked with patients with other pervasive developmental disorders, such as Asperger Syndrome, and patients with cerebral palsy and Down's syndrome. The directors have worked with both adults and children who have high- and low-functioning versions of their disorders. According to Raun, Son-Rise directors have seen a range of improvements. Many children they have treated still experience challenges, while others, like Raun, show no traces of their former conditions. Areas of improvement vary.
Photograph by Paul Myers
For instance, one child might take off in
speech, while another might show the most
marked improvement in social skills. Some
parents also implement the program for fewer
hours, which further contributes to variation
in results, Raun said.
According to Raun, Son-Rise has received a
lot of criticism. Some people believe that
joining children in their ritualistic behaviors
will encourage them to continue those behaviors.
However, Raun says, time and time again Son-Rise
directors have seen children engage in these
behaviors less when people join them in doing
them, because the children focus more on the
people.
Some have criticized parents running Son-Rise
programs because they aren't professionals.
The Son-Rise directors disagree. Raun says
parents are essential because they have a
lifelong dedication to the patient and a "wellspring
of knowledge" about their children.
People have also accused The
Son-Rise Program® of
giving false hope, since Son-Rise directors
can't guarantee that the program will work
for everyone. Raun argues that hope leads
to action, and when parents take action, there's
at least a chance that their children will
be helped.
Photograph by Paul Myers Megan Leney watches her son,
Evan, through a window to his soundproof playroom.
Evan, who is autistic, works in the room with volunteers
for about five hours a day.
The Future
Evan still needs help with visual, spatial, communication and fine motor skills, Megan said. The Leneys rarely take him outside the house because they want him in one environment.
They believe that once he becomes comfortable at home, he will be more comfortable going other places. However, Megan said, when the Leneys do take Evan out, he is much calmer. "Everything is easier now," she said.
The Leneys would like for Evan to begin attending a mainstream
school next fall. But they're not so attached
to the goal that they're pushing him toward
it, Megan said.
"The children show us the way in," Raun said.
"We show them the way out."
Additional Articles:
"The Importance of Being Happy"
Reprinted from In Context
"Parenting by Intention"
Reprinted from Mothering Magazine, USA
"Assistance For Autistic Children"
Text from 9 On Your Kids Side Video
Originally aired 9/24/02 on WCPO TV9
Complete List of Autism Articles
The
Son-Rise Program®
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