FEAT DAILY NEWSLETTER
Sacramento, California http://www.feat.org
January 14, 2002
News Morgue Search www.feat.org/search/news.asp
·
Facing Autism
·
Living in a World Of Autism
·
Movie Review: I Am Sam
While science seeks the hows and whys, families search for
new ways to
connect, care and cope
[By Scott LaFee, San Diego Union-Tribune.]
http://www.uniontrib.com/news/science/20020112-9999_mz1c12autism.html
It was part of the routine most mornings: Stephen Adams
would wake up hungry, eager for breakfast. His mother, Emma, would prepare it,
then ask Stephen: “What do you say?”
“Peas,” Stephen, then 16 months old, would cheerfully
reply.
One morning Stephen’ s mother asked and he didn’ t
answer. “He looked
dumbfounded, like he didn’ t know what I was talking about,”
Adams recalled.
“He didn’ t say peas—please—again until he was 4.”
Within months of no longer saying please, Stephen didn’ t
say anything at all. His language skills, which had been typical for a toddler
his age, vanished. Then Stephen did, too.
“He stopped smiling and laughing,” said Adams. “He just
sat there. He wasn’ t the boy I knew. I didn’ t know what was happening. I
thought he might be acting out because he missed his father, who’ s in the Navy
and sometimes has to go to sea for months at a time.”
But that wasn’ t the problem. Stephen, it would turn
out, is autistic.
In many ways, autism is about lost children. It is a
disease—a
spectrum of neurological disorders, really—that are
typically diagnosed around the age of 2. In cases such as Stephen’ s,
apparently normal children suddenly are not. Early language and social skills
fade, then disappear. Inexplicable,
sometimes dangerous, behaviors emerge. Parents watch helplessly as their child
transforms into somebody they do not recognize— and who often does not
recognize them.
Victoria Ikerd remembers when her son, Jacob Cogar,
changed. At the time, Ikerd already was caring for a 3-year-old autistic
daughter, Savine. Like Stephen, Savine
Cogar had seemed a typical child until she was 1-1/2 years old. That’ s when
she stopped saying words such as “hi” and “bye” and “mama.”
“I don’ t think I realized it immediately,” said Ikerd. “It’
s not like you expect your child to just not talk one day.”
Savine began acting odd. She giggled for no reason. She
avoided eye contact. She couldn’ t tolerate people singing.
Ikerd feared Jacob was similarly fated. At 10 months, she
had him assessed by doctors. He checked out fine. At 15 months, he still seemed
OK. Jacob wasn’ t walking yet, but
Ikerd was not overly concerned.
“But that’ s when he started falling away from me. He
began pacing and stomping in patterns, pressing buttons on and off. He wouldn’
t play with toys. He wasn’ t a little boy who wanted to play with you. He was
calm, very easy to take care of, but he wasn’ t really interacting with us
anymore. We didn’ t seem to be there.”
The cause or causes of autism are not known, but the
disease appears to be on the rise—everywhere. In California, there has been a
273 percent jump in diagnosed cases between 1987 and 1998. Studies show similar
or greater increases in places such as Michigan, Florida, England and Japan. Scientists once estimated autism struck one
child in 10,000; now the ratio is up to one in 500, perhaps higher. No one knows
why.
Medical science has more questions than answers, but this
much is certain: When autism strikes a family, it changes more than the child.
The divorce rate in families with autistic children hovers at 75 percent. Parents can be wracked by guilt,
frustration, anger, denial and, always, questions about the future. They
wonder: What sort of life will my child have? What will he do when we are gone?
A generation ago, the answer was often bleak and
depressing. Autism was scarcely recognized as a disease then, and even more
poorly understood. There were no
effective treatments. Parents were often unable to meet their child’ s needs.
The fate of many autistic children was life in a psychiatric institutions. It’
s easier now. In the past decade, numerous autism organizations and support
groups have come into existence, among them the Doug Flutie Jr. Foundation for
Autism, created by San Diego Chargers quarterback Doug Flutie after his son,
now 11, was born with the disease.
Public schools have responded—in varying degrees—to the
rise in autistic students as well. San Diego city schools, for example, runs a well-regarded,
if somewhat overtaxed, program of special classes and services.
“In the early 1990s, we had maybe 30 students in the
district identified as autistic,” said Bobbi Kohrt, an autism specialist. “Now
there are maybe 500, 600.”
Such programs help, though parents complain that they must
sometimes fight for services. “The hardest part of having an autistic child is
first hearing that you do and not knowing what it means,” said Shirley Fett, mother
of two autistic boys. “But once you get over that initial shock and grieving,
the hardest thing becomes getting what you think your kids need. It’ s a constant effort.”
The effort is usually worth it. There is no cure for
autism, but some treatments are proving effective, particularly if started as
early as possible and based on behavior modification. These programs usually
focus on teaching behaviors through activities involving play-acting, mimicry
and visual aids. There is an emphasis on developing or reviving communication skills.
Stephen Adams, now 9 years old, has regained much of his language ability,
thanks in part to intense speech therapy sessions at UCSD and special education
programs in San Diego and elsewhere.
“We knew Stephen could talk, but he had lost his voice,”
said his mother. “Now it’ s back and getting stronger. He has a personality. He
will look you in the eye again. He’ ll shake your hand.”
Savine and Jacob also have improved with behavior
intervention. Savine chats gaily with a visitor to her house about the Barbie
she received at Christmas; Jacob spots a camera and grins.
If frustration exists in every autistic family so,
too, does hope,
albeit tinged by desperation. Most autistic parents say they
will try any
purported treatment and remedy, from
dietary changes to cleansing the body of certain
toxins.
“You can get frantic at times,” said Fett. “What do I
do? How much can
I do? Having a child with autism is very labor-intensive,
time-consuming and expensive. I think we’ ve tried everything, a lot of it
without effect. Some parents get burned out but, for most of us, it just
becomes a way of life. I make phone calls every day about my boys, setting up
appointments, dealing with issues. We all reach a level we can handle.”
No parent knows how much he or she can handle until
reality strikes. It first struck Donna
Rasmussen when she noticed her son, Jake, at 9 months old, was not like his
2-year-old sister.
“He would watch the Disney movie ‘ Pinocchio’ over and
over, laughing and giggling and flapping his arms,” Rasmussen said. “He loved
to watch the credits, and when they were over, he would scream until you
started the movie again.”
At a year, Jake said “mama” twice, “tasty” once, and then
stopped speaking. Jake didn’ t play with toys, but he was mesmerized by chalk,
which he carried everywhere, including into bed and the bathtub. Everything
seemed an ordeal and complication. Jake would eat crunchy apples, but not
Jell-O or ice cream. He hated shopping trips to Ralphs, but tolerated Vons.
Returning home by car required following a particular route. Jake threw “about
70 tantrums a day,” his mother sighed.
Rasmussen struggled to get Jake diagnosed. “Nobody wanted
to talk about autism,” she said. It was just as bad with family and friends.
Some became uncomfortable around Jake; some distanced themselves. Jake’ s grandparents
dismissed his behavior as merely strange. “They’ re still in denial,” said
Rasmussen. “They won’ t talk about the disease. It’ s like they’ re afraid they’
ll offend somebody.”
At 2-1/2 years old, Jake was diagnosed with autism and
behavioral treatments begun. Rasmussen does much of it herself, teaching Jake,
now 6, with pictures and much repetition.
Life is better—for everyone.
“Jake’ s much improved,” Rasmussen said. He’ s in
first grade. He’ s
talking again. He reads and loves computer games. “Autistic
kids aren’ t stupid. Many have normal intelligence. They just don’ t have a way
to express themselves, to let go of their thoughts and feelings.”
Donna Rasmussen dreams the dreams of mothers and fathers
everywhere, that her children will have long, happy and productive lives. At
one time, she feared Jake would never learn to even eat with a fork, but now
Rasmussen thinks he might attend college some day, find a job, create an
independent life of his own.
But there is doubt, too. For most autistic families,
uncertainty is a permanent shackle. Asked when she knew things with Jake were
going to be OK, Rasmussen paused, then said: “Maybe the day after tomorrow.”
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* * *
Living in a World Of Autism
[By Angie Zelenak, News-Herald Heritage Newspapers,
Michigan.]
http://www.thenewsherald.com/focus/N11XAZ1.asp?ID=117
“We pray for a miracle every day — every single day,” said
Rosemary Riley-Mondro, in anticipation of a cure for her 8-year-old son, Jimmy.
He has attended the Lincoln Park autistic program at
LeBlanc School for the last four years.
The school recently received a $40,000 grant from Grand Valley State
University to become a model demonstration and intensive training site.
“He’s doesn’t fall in the textbook parameter of being
autistic,” his mother said, “but he has symptoms of it along with other
neurological issues.”
It has been a very long road for the Dearborn Heights’
parents, who were a bit older when their only child was born.
“I was 41 years old and Jim, my husband, was 49,”
Riley-Mondro said.
“We were so happy.”
Taking all the precautions to ensure a healthy baby,
Riley-Mondro said they opted to go to a high-risk obstetrician, just to be
safe.
“We had some fears for our baby due to my age,” she
said.
The pregnancy went along without a hitch and on Sept.
7, 1993, James
Mondro was born, weighing in at 6 pounds, 11 ounces.
“We were so grateful that everything went well. He looked healthy and responded accordingly
to the APGAR score,” she said, referring to the results of a nationally known
test used to quickly evaluate a newborn’s condition after delivery.
Other than a low weight problem in the first few weeks,
things seem to be going fine with her son, Riley-Mondro said.
“He was a good baby,” she said. “He responded to me and loved to be held.”
However, as the weeks turned into months, Riley-Mondro
noticed that the baby would become loud and easily excited for no apparent
reason.
At about 10 months old, she mentioned it to his
pediatrician, along with concerns that Jimmy didn’t seem to be responding to
interactive play or making attempts to talk.
“He was very outgoing and loving, but just wouldn’t focus
or talk,” she said.
She said she remembers the doctor saying: “He’s fine. All
kids are different. He just happens to
be taking his time.”
Then, close to his first birthday, Jimmy developed a
seizure disorder that requires medication to control.
“He just stared and drooled,” Riley-Mondro said. “It was painful to see him go through
them. But these things happen and
children can live productive lives. I was accepting of that.”
But what concerned the first- time mother equally was that
Jimmy was still not talking or showing any signs of skills in other areas.
When he was 15 months old, she again brought her concerns
to the pediatrician.
“He’s just a laid-back kid is what he told me,” she
said.
Coincidentally, at about the same time, she had an
appointment to see
a neurologist for an evaluation of Jimmy’s seizure disorder.
At that visit with the specialist, the still-troubled mother inquired with her
concerns.
Presuming all else was fine, the doctor used a vibrating
tuning fork that is used to test hearing.
“Jimmy wouldn’t respond in the direction of the sound,”
Riley-Mondro said. “It was recommended that I take him to a hearing specialist,
an otolaryngologist.”
The results obtained from the ear, nose and throat
specialist had a bittersweet conclusion: Jimmy had a moderately severe hearing
loss.
“We were sad that he couldn’t hear but were happy to be
getting him the help he needed … getting him on track,” his mother said.
Nevertheless, neither that information nor an attempt to
correct Jimmy ’s hearing proved conclusive in the quest to help their son.
At 18 months, Jimmy was fitted for hearing aids and began
working with an oral peripheral specialist who visited the home twice a week
for months. There was no change or
improvement in his progress.
“She told us if he was only deaf or hearing impaired, with
the corrected hearing he now had, he should be doing more,” Riley-Mondro said. “She suggested that there could be
neurological issues.”
According to medical experts, identifying problems
associated with the functioning of the brain can be difficult. And it is more so if autism is involved
because it is a neurological disorder with no easily identifiable cause to
pinpoint.
“There are no medical tests for diagnosing autism,” said
Barbara Brish, director of the Lincoln Park school system’s autism program,
which Jimmy attends. “Observation is
the best diagnosis, but some misunderstanding can happen in diagnosing when
using a textbook definition to identify autism. It should not be the rule of thumb.”
With hearing aids in place but no communication or
language skills, Jimmy and his parents visited many doctors and specialists
throughout the United States for the next few years, to no avail. No one could give them a clear answer to
their question: What is going on with our son?
“We didn’t know where to begin or how to help him,”
Riley-Mondro said. “Jimmy is very
friendly. He makes eye contact and likes to be touched, which is the opposite
of how many people and professionals believe autism to be.
“Doctors kept telling us that he was too outgoing to be
autistic, and yet, he doesn’t have language, which is a textbook definition of
autism.”
Finally, in 1997, when Jimmy was 4 years old, the family
went to the Mayo Clinic after reading about Dr. Stanley Greenspan, a nationally
recognized child psychiatrist, researcher and author in Baltimore, Md. He helped develop a program called the “PLAY
Project” for children with disorders in relating and communicating.
“We didn’t get to see Greenspan but did see a specialist
with his group,” Riley-Mondro said. “She
was the first person who said, ‘Your son falls within the autistic spectrum.’”
It was very difficult for the Mondros to hear the
news.
“At first, we didn’t know how to respond,” she
said. “We didn’t know
anything about autism or how to work with our son.
“Especially after reading all the literature about autism,
you are completely devastated because you are told there is no known clear-cut
cure for autism.”
This, however, did not stop the parents from researching
the possibilities of one.
“You often hear of management control recovery,”
Riley-Mondro said, referring to adjustments in diet, hormone injections or
homeopathic intervention, which in some cases has eliminated symptoms. “We
found some to show signs of promise, although minimal, and then others that
didn’t.”
The time to reach a diagnosis, develop a course of action
and provide long-term guidance can be difficult, said teacher Mary Ann Goniea,
who works with the program at Crowley Center in Lincoln Park.
She said it is a long journey for the parents.
·
Article continues at:
http://www.thenewsherald.com/focus/N11XAZ1.asp?ID=117
* * *
Movie Review: I Am Sam
Review by Dean Kish, “The Soothsayer”
http://www.comingsoon.net/reviews/iamsam.php
The conflicts and heartaches we as humans have to endure
can break even the strongest man. But what if that man is autistic and his
heart is in play.
An autistic man named Sam (Sean Penn) takes a homeless
woman in from streets. After the homeless woman has Sam’s child, she disappears
and it’s up to Sam to care for his new daughter, Lucy. Sam’s neighbor (Dianne
Weist) helps with the daughter when poor Sam has to go to work at Starbucks.
When Sam’s daughter reaches 7 years old it seems that Lucy
is becoming a lot smarter than Sam is and strains begin to happen in their
relationship. When Lucy does what she
can to stay with her dad society begins to see what is happening and Child
Services steps in. Will Sam lose Lucy? Can Sam’s “pro bono” lawyer (Michelle
Pfeiffer) save father and daughter from the wrath of the law?
I Am Sam is as hard to watch as it is to write about. As
the film progresses you are constantly drilled with debate on what is best for
these displaced souls. The reason it is so gut-wrenching and emotional to watch
is because of the performance of Sean Penn. That performance is so flawless that
you become emotionally involved with this guy. You adore his daughter and how
these two precious people adore each other.
I Am Sam is a movie that all parents must see because it
has a piece of parental instinct for each of us as we raise our children. There
is so much here that we must take to heart when raising children.
If Sean Penn gets nominated for this film for an Oscar
look for him as a shoe-in to win. He deserves it. That performance dwarfs even
Dustin Hoffman’s autistic Raymond in “Rain Man”. There is a cliché that an
actor has to play someone disabled to win an Oscar but this situation is far
from anything of that nature.
I liked Michelle Pfeiffer in this film as well. Her role
is so restrained that emotion doesn’t pour out like Penn’s but she does show
how far she has come in career. I also liked the chemistry between the two leads.
“Sam” is hard to sit through but definitely worth the
journey if you are an aspiring parent or a parent now.
(4 of 5) So Says the Soothsayer.
Lenny Schafer, Editor@feat.org • CALENDAR EVENTS@feat.org
Michelle Guppy
Catherine Johnson PhD
• Ron Sleith •
Kay Stammers • Edward Decelie
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