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AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Tuesday January 8, 2002
INDEX:
* Confronting
the rise in autism
* Adventure in learningSchool matches special talents with special
resources
* Announcer mentions Roanoke County teen's fight against
Niemann-Pick
disease
* Letter to the editor in Chicago Tribune on Special Education
******************************
Confronting the rise in autism
The
Triangle is a mecca for treatment of this developmental disability
Jami Jenks, a teacher at the Mariposa School in Raleigh, lets her pupil Patrick
Lane, 5, take a break from work and fly one of the airplanes she gave him for
Christmas. Patrick, who is mildly autistic, works with Jenks three hours a week
at his home.
Staff Photo
By Sher Stoneman
SYMPTOMS OF AUTISM:
Develops language slowly or not at all.
Uses words without attaching the usual meaning to them.
Communicates with gestures instead of words.
Has a short attention span.
Spends time alone rather than with others.
Shows little interest in making friends.
Doesn't respond to social cues such as eye contact or smiles.
Has abnormal sight, hearing, touch, smell and taste perceptions.
Lacks spontaneous or imaginative play.
May be overactive or very passive.
Throws tantrums for no apparent reason.
Shows an obsessive interest in a single item, idea, activity or person.
Becomes aggressive to others or self.
Has difficulty with changes in routine.
Source: Autism Society Of America
By SARAH
AVERY, Staff Writer The physical beauty of 5-year-old Patrick Lane, his deep
blue eyes dazzling under sunshine-white hair, conceals a neurological defect
that is at the center of a growing medical phenomenon. Patrick has autism, a
developmental disability currently diagnosed in at least one in 500 Americans.
It was once considered rare; in the 1960s, scientists pegged its occurrence at
one in 2,500 people. So its increasing prevalence is as puzzling as its myriad
symptoms. Scientists have only theories why there are more and more children
such as Patrick. A leading reason may be an increased willingness among doctors
to make the diagnosis, especially when children are only mildly affected. Then
too, genes appear to play a role, perhaps lining up in such a way that some
unknown environmental toxin triggers a switch, and a seemingly normal baby
stops talking and ignores everything and everyone. Whatever the causes, the
higher incidence of autism is especially evident in the Triangle. Drawn by a
program developed at the University of North Carolina at Chapel Hill in the
late 1960s, and additional research at Duke University, people with autistic
children often move to the region for the diagnostic expertise, the treatments,
the research, the advocacy, and the public schools. "We have more services
than a majority of the states in the country," said David Laxton,
communications director with the Autism Society of North Carolina. "I had
one person call on a Wednesday and said, 'We're moving to North Carolina on
Saturday, and we need to know where to live.' " No agency has tracked the
historical incidence of autism in North Carolina, but public school data offer
some insight. With 401 autistic children enrolled last year, the Wake County
school system had more autistic children than any other in the state, almost
twice as many as Charlotte-Mecklenburg, the state's largest school district.
That number is also almost four times what it was 10 years ago. Likewise, the
percentage of autistic children enrolled in exceptional children's programs is
higher in the Chapel Hill-Carrboro school district than anywhere else in the
state. Patrick's parents, William and Helene Lane of Raleigh, had lived in
Raleigh for several years before Patrick was born; after his diagnosis, the
first-time parents discovered a large community they had no idea existed.
"All of a sudden, you get swept up into a world that is totally
different," Helene Lane said. Early signs Patrick had always acted
a little peculiar. He was fretful, and often impossible to console. He didn't
walk until he was 15 months old. He hated loud noises, so that in church, when
everyone said "Amen," Patrick screamed. By age 3, he spoke only about
100 words, and he mainly just echoed what someone else said. "Being
first-time parents, we didn't know if his behavior was different from other
kids," Helene Lane says. But they harbored suspicions. When he was 3, he
began isolating himself from his classmates in preschool, and his teacher
suggested that the Lanes have him tested for autism. Helene Lane said the
teacher's suggestion came as a surprise, but she was eager to get at the root
of her son's distress. So the Lanes went to Project Enlightenment, a division
of the Wake County Public Schools for early childhood education, and from there
he was referred to the Developmental Evaluation Center in Garner. Doctors and
therapists conducted tests, talked with the Lanes and observed Patrick in
action over a four-hour evaluation. Halfway through, Patrick became frustrated,
hitting Helene and crawling all over her, wanting to get away from the
examiners. "That was what we were used to," Helene Lane said.
"Whenever he got upset, he started flailing at us, fussing and
shouting." The diagnosis was clear. Autism runs along a spectrum, from
severe to high-functioning, and usually isn't diagnosed until after age 2.
Often, children seem to develop normally and then appear to regress. Severely
autistic children withdraw from people, avoid eye contact, can be overly
sensitive to light or touch, engage in repetitive behavior such as flapping
their hands, and may erupt into tantrums or aggressive outbursts. In about half
of cases, intelligence is impaired. Patrick was on the high end of the
spectrum, with normal cognitive abilities. The comfort of diagnosis
"We felt relief," said William Lane, who practices environmental law
with the Kilpatrick Stockton firm in Raleigh. "You can't come to terms
with something if you don't know what it is. It gave us a diagnosis that people
understand, and not just lay people, but people who can help -- counselors,
teachers, doctors." One of the first places the Lanes headed was to Chapel
Hill, home of a program called TEACCH, for Treatment and Education of Autistic
and related Communication handicapped Children. The program began in the
mid-1960s, and it was a radical departure from the prevailing philosophy that
autistic children withdrew in response to cold, unfeeling mothers -- the so-called
"refrigerator mother" syndrome. Eric Schopler had studied autistic
children as a doctoral student at the University of Chicago and then as a
professor at UNC, and he came to the conclusion that the old Freudian
interpretation was not only wrong, it harmed families. With grant money from
the National Institute of Mental Health, Schopler began using behavioral
therapies tailored specifically to the child, and involving the parents as
integral partners. If a child used hand signals instead of talking, for example,
therapists and parents would work together, using a reward system, to insist
that the child speak. It was highly effective. Children who had been deeply
withdrawn began communicating, and the parents, rather than being demonized,
were invested in the therapy. By the time the NIMH grant money ran out in five
years, Schopler had a devoted following. The parents insisted that the program
continue, and turned to the state for help. "We decided to have a
legislative breakfast where we'd bring the kids and we could show how we'd
worked with them," Schopler said. "We were able to use a church in
Raleigh, and more legislators showed up than we expected. And the main guy at
the time was Lt. Gov. [Pat] Taylor, who set the agenda for new legislation.
"We started the breakfast without him, and he showed up late and sat down
next to a boy who was one of our toughest cases. The child ate his food with
his hands, and he was eating grits with his hands and got grits on Taylor's
tie. But this politician was astute enough to see that the child was making a
social interaction." A model of progressiveness The success of the
breakfast led to the passage, in 1972, of a law that established three TEACCH
centers around the state to offer diagnosis and therapies. The centers, funded
as a division of UNC's psychiatry department and offered without cost to
families, were the first of their kind in the country. They established North
Carolina as a model of progressiveness in autism treatment. Now, TEACCH
operates nine centers throughout the state, including the original site in
Chapel Hill and a new center that opened this year in Raleigh. Together, the
Chapel Hill and Raleigh centers handle 250 to 300 referrals a year; all nine
centers have waiting lists. Many of the people on those lists have moved from
other areas of the country, leaving behind family and friends for the
opportunity to get their child into a program. It's a common phenomenon; in
California, where autism services are also strong, the number of autistic
children has spiked from 4,911 in 1993 to 15,441. Researchers there are
exploring what, in addition to the draw of services, is contributing to the
increase. A similar study is starting at UNC, which has begun assembling a
database to determine what is causing the rising numbers of autism diagnoses.
For the schools, the climbing numbers of autistic children have been matched by
an increase in classrooms to serve them. Wake schools had just 10
self-contained classes for autistic students, including pre-schoolers, as recently
as 1993. The school system now operates between 40 and 45 of the separate
classes, adding a strain on a system already pressed to keep up with overall
increases in special education enrollments. Sharon Floyd, a former teacher of
autistic children who now works in Wake schools as a special education
administrator, said the system is facing a shortage of special education
teachers, which affects classes for autistic children. "It's kind of hard
now to find all the teachers we need," Floyd said. "Now when you're
opening six or seven classes a year, it's tough." Other students who show
milder symptoms attend regular classes for all or part of the day and may get
specialized help in less-intensive, part-day programs for students with various
learning handicaps. Many of the public schools train teachers and psychologists
at TEACCH centers, and use the TEACCH method, which relies heavily on visual
cues to help children learn. It's an intensive approach. "Years ago, we
told people that if they're thinking of moving here, it is not Shangri-la and
your child becomes immediately OK," said Lee M. Marcus, clinical director
of the Chapel Hill and Raleigh TEACCH centers and psychiatry professor at
UNC-CH. "Nothing is handed to people. Most of the time, this works. But it
takes a lot of support and a long-term commitment." Shelley and Dan Lakes
have been waiting to start a TEACCH treatment program for their daughter Carly
since moving to the Triangle in April. They relocated from Alabama in no small
part to take advantage of the autism services. Carly, who is 7, was diagnosed
with autism when she was 3, and the services in their small town were lacking.
They had to travel 180 miles to Birmingham just to get Carly diagnosed, they
had few advocacy resources, and the public schools were not well equipped to
handle Carly's hard-charging personality, so Shelley home-schooled her.
"If it hadn't been for the [lack of] autism services, we would have stayed
put," Shelley Lakes said. The Lakes' first stop in North Carolina was TEACCH.
After an initial assessment, they were put on a waiting list and are hoping to
begin the program this spring. Meanwhile, she is enrolled in a special class at
Vance Elementary. "It's going to take awhile to get plugged into
things," she said, "because we're new here, and we're not as
familiar, so we have to dig around." Entering a new universe For
William and Helene Lane, getting plugged in served as their own form of
therapy: "Doing something about it healed the pain," William Lane said.
Once they got an appointment in the TEACCH program, the Lanes began the long
process of working with Patrick to help him speak and and interact more
naturally. Helene Lane quit her job as marketing manager at Cisco Systems and
immersed herself in this new universe. She became a leader in the Autism
Society of North Carolina, one of the largest and most active chapters of the
national organization. And she learned to navigate the system, enrolling
Patrick in preschool programs and getting him an Individual Education Plan,
which school systems use to devise and map progress. The Lanes agreed to
participate in a research trial at UNC to examine what role genes play in the
disorder. Similar research is being conducted at Duke among 200 families who
have multiple cases of autism. Eventually, genetics may prove to be at the root
of the disorder. When parents have one autistic child, they have a higher risk
of having a second child with the disorder -- a 5 percent to 10 percent chance
versus the 0.1 percent to 0.2 percent chance for unaffected families. But those
are good odds, and the Lanes' 3-year-old daughter, Kristina, is not autistic.
Discovering the basis for the disorder will answer the mystery of why Patrick
has more and more autistic peers. In the absence of clear scientific
explanations, theories arise. One of the most controversial has been the
suggestion that childhood measles, mumps and rubella vaccines have caused
autism. The notion stemmed from the findings of an English doctor who used 12
cases to form an anecdotal association. Broader, more rigorous research has
discounted the theory. But it instilled fears about the MMR shots, which then
prompted autism organizations, pediatricians and the federal government to
issue statements defending the safety and necessity of childhood vaccines.
"There is a theory of the month, or at least a theory of the year,"
said Dr. G. Robert DeLong, professor of pediatric neurology at Duke and an
autism researcher. "We don't have anything that explains why autism occurs,
so that encourages all this quackery." Other theories include unknown
environmental toxins that, combined with a defective gene, spark the disorder.
Diet, allergies, unusual brain chemistry -- all have been debated. DeLong said
he is intrigued that antidepressants helped a third of autistic children in a
study he mounted, and he is continuing research to see whether manic-depressive
illness and autism are somehow linked. Much of the increased prevalence might
simply be due to improvements in diagnoses, which ratchet up the numbers. In
fact, high-functioning children such as Patrick might have been considered
quirky 30 years ago, but not autistic. Today, they are included in the
diagnosis. Autism stigma wiped out Part of the reason that doctors are
more inclined to make the diagnosis stems from the work of Schopler and others
who debunked the "refrigerator mother" notion, erasing the stigma.
Research has also shown that an early diagnosis presents the best chance for
improvement, offering interventions in the important, formative years between
infancy and age 6. And because many autistic people have an extraordinary
ability to focus and concentrate, they often gravitate to fields such as
engineering and computer programming. People with severe autism, however, need
lifelong assistance. The Lanes said they wished Patrick's behaviors had been
flagged earlier, because he has had only two years of therapy. In that time,
however, he has made tremendous progress. A casual observer might never know
that Patrick has autism -- he speaks when spoken to, is polite and considerate
and even has a mischievous sense of humor. And through work with TEACCH and the
autism society, the Lanes have learned to accommodate Patrick's unique demands.
They let him adhere to routines, allowing him to put his pants on before his
socks. They toilet trained him by diagramming the process, step by step, and
posting it in the bathroom. In recent months, the Lanes have hired a speech
therapist at the Mariposa School, a Raleigh program that offers verbal behavior
therapy for autistic children, and will pay $3,000 to $4,000 for the service.
For three hours every week, the therapist plops down on the floor of Patrick's
bedroom and runs a quick-paced session of verbal drills. The work has helped him
get placed in a regular classroom for half a day at North Ridge Elementary
School, getting more intensive sessions in a special class the other half.
Recently, the teacher in his regular classroom noted that Patrick has been
cutting up with a group of boys at his table. It was the not-so-perfect
behavior expected of 5-year-olds, and for Helene Lane, it was cause for
celebration. "The other parents might have been worried," Helene Lane
said, "but I was like, 'Yes! Normal.'" Staff writer Todd Silberman
contributed to this report. Staff writer Sarah Avery can be reached at 829-4882
or savery@newobserver
http://www.newsobserver.com/sunday/front/Story/901614p-901219c.html
******************************
Adventure in learningSchool matches special
talents with special resources
By Julie Poppen,
News Staff WriterLAFAYETTE --
Maria Avila © News
George Smith, 13, gets help with a math problem from teacher Sean Rice at the
Brideun School for Exceptional Children. The private school helps whildren who
are gifted and have learning disabilities or more acute diagnoses such as
autism.
Before 5-year-old Teddy came to the
Brideun School for Exceptional Children, he was at a school where he was pulled
out of class and placed with special needs students. He spent a week trying to
learn the letter A. He acted up. Teachers threw up their hands. Within two days
at Brideun, a private school that opened this year, Teddy is still acting out.
He refuses to join his classmates, opting to wander around alone. He screams
and thrashes when a teacher tries to lead him to his peers. But he's reading at
fifth-grade level. He's a perfectionist as he writes a student's name on the
chalkboard. He knows all the multiplication tables. "Look at him
now," school founder Marlo Payne Rice says as Teddy writes names in chalk.
Nearly all 32 full-time Brideun students are in predicaments similar to
Teddy's. They're extremely bright and gifted in some areas, but desperately
struggling in others. This population has been dubbed "twice gifted"
or "twice exceptional." They're gifted and have learning disabilities
or more acute diagnoses such as autism. According to researchers, there are an
increasing number of students who fall in this hard-to-serve category. Linda
Silverman, director of the Gifted Development Center, estimated that one-sixth
of the gifted population have learning disabilities. "A lot of
gifted/(learning disabled) kids are doctors and lawyers," says Rice, who
has worked for Silverman. "They're starting companies. They're not freaks.
Kids can have brilliant ideas and can barely hold a pencil." At first
glance, Brideun -- in temporary quarters at an Elks lodge -- appears to be like
any place that caters to kids. There are bongo drums, a low trampoline, mats on
the floor, arts and craft supplies, students' art on the walls, books and
supply bins for each student. But there are other supplies that are less
common: Silly Putty always at the ready, rough gloves, weighted vests, lotion
with sand in it, a spinning device, a brush, head phones to block out sound.
These are used by students with disabilities that hinder their concentration.
Rice gives a student who's jumping out of his skin Silly Putty to play with.
She rubs a brush on a student's arms to help her focus. It helps some children
to keep them occupied by rubbing sand off their arms and hands. So far, the
response is surpassing expectations. The school hasn't even advertised to fill
its first class of first- through eighth-graders. Thirty-two students, ages 6
to 13, are enrolled. Rice says it's the first school of its kind in the United
States. The school mixes some experimental Montessori programs with
back-to-basics Core Knowledge. Students have classes in multiage groups rather
than by grade level. For now, there are two "home room" groups that
take regular academic classes in the morning. They get into new groups for
afternoon electives. For example, one group contains students who are bipolar,
have head injuries, live in foster care, don't speak English, are autistic or
have IQs above 200. The school is named after the Gaelic word for an
oyster-catching bird. Legend has it the bird keeps children from straying too close
to the ocean and falling in, Rice says. Classrooms feature stations that
students can choose. One station may contain felt letters for a student who is
practicing spelling. Another may consist of a group working on complicated
story problems. Group activities, such as "hop-scotch math" can cater
to a range of skill levels, from simple addition to calculating square roots.
The math/science room features an electron microscope, a tornado tube and a
cloud chamber. Students will make a telescope based on Galileo's theories. A
group of 6- to 8-year-olds is creating a security system for the room that will
require a special code. A chart on the wall documents the level of work each
student completes. One student has done a year and a half of math in three months
and is now at Level 5 in Algebra II. Social skills classes teach students how
to interpret body language, follow directions and listen. Alyx Nicole
O'Donoghue, 14, is autistic. She talks fast and sometimes incomprehensibly.
Increasingly, she's slowing her speech and doing a better job of showcasing her
knowledge of dinosaurs and ancient human history. She used to attend school in
California. "I got bullied a lot there," Nicole said. "The only
thing I learned there was how to dodge bullies." She likes Brideun because
she isn't harassed and the classes are smaller. Brideun costs $9,000 per year,
and parents are required to volunteer 20 hours during the school year. To
attend the school, students must be able to demonstrate high abstract reasoning
skills, though they don't need a certain IQ. Students also must have taken the
Wechsler Intelligence Scale test in the past three years and standardized tests
within one year of admission. A vision and hearing exam is also required.
"We want to have some intuitive sense they're cooking with more gas,"
Rice says. Rice has been working with this particular group of people for
years. After moving to Colorado, she worked for the Gifted Development Center.
Brideun organizers are planning to have a new school built by next year. It
will feature gardens, a greenhouse and amphitheater, and warm water therapy
pool. Because many of the students are highly sensitive to sounds and light
irregularities, the new facility will feature a quieter, oversized heating and
cooling system and lights that don't flicker. When fully operational, the
school will accommodate 160 students, Rice says. "Our goal is not to cure
them," Rice says. "Our goal is to help them function with the quirks
they have." Denver doctor Patrick Roney says Brideun is transforming life
for his three adopted sons who have struggled in school and now attend Brideun.
Topher, 7, can't understand a teacher unless he makes eye contact with her.
Lower case b's look like d's. Ian, 9, can't do a simple drawing under a time limit
because he imagines all the other detail that should go in a picture and
freezes. Trevor, 12, also attends Brideun. "They've begun to enjoy school
again," Roney said. "They're now taking their newfound skills and
newfound interests in school and they're learning instead of coming home at end
of day and being weepy or cross or upset."
Contact Julie Poppen at (303) 892-5176 or poppenj@RockyMountainNews.com.
http://www.rockymountainnews.com/drmn/education/article/0,1299,DRMN_957_932164,00.html
******************************
Announcer mentions Roanoke County teen's
fight against Niemann-Pick disease
Fox Sports scores for those with NPD Never before has the disease, which
usually kills children before they reach their 20s, received such national
attention.
By LISA APPLEGATE
THE ROANOKE TIMES
A minute or two into the Fox NFL Sunday pregame show, just as
jokesters Howie Long and Terry Bradshaw were warming up, James Brown
interrupted with a more serious message. He pointed to
the blue lapel pin he and his fellow commentators were wearing. The pin - a
silhouette of a young girl - symbolized children who suffer from the rare,
incurable Niemann-Pick disease. He mentioned Hunter
Ozmer, a 16-year-old Roanoke County girl who has NPD, and is "a beautiful
young lady." Finally, Brown encouraged viewers to go to the Fox Sports Web
site to support research that may save kids like Hunter.
Brown's speech lasted about 30 seconds. But to the
family and friends glued to the Ozmers' TV Sunday, Brown's comments were
priceless. "We couldn't have asked for anything
more," said Hunt Ozmer, Hunter's father and an officer with the nonprofit
National Niemann-Pick Disease Foundation. Never before
has the disease, which usually kills children before they reach their 20s,
received such national attention, Ozmer said. Fox NFL Sunday has mentioned a
cause only once before, after a staff member's child was diagnosed with autism.
Brown, who called the Ozmers after finishing the show,
said he wanted to raise awareness about NPD after meeting Hunter and her dad
several years ago. The two were in Maryland for a checkup at the National
Institutes of Health, and introduced themselves to the all-Ivy League
basketball player in a restaurant. "It was so
touching to see the love and affection I saw between Hunt and Hunter, and to
see this effervescent, fun-loving young lady endure this disease," Brown
said Sunday. Only 300 cases of the genetic disease have
been diagnosed nationwide. Hunter has Type C, which means she cannot metabolize
cholesterol properly, affecting her liver, spleen and brain. Tests will begin
in the spring for a drug that could slow NPD symptoms, and the Ozmer family
hopes Hunter will be asked to participate. NPD
Foundation members in about 14 states held parties similar to the Ozmers' on
Sunday, and agreed to pray for a cure. Annette Ozmer had to finish their group
prayer after her husband became too emotional to finish.
But the mood quickly lightened when the phone call from
Fox studios in California came. "Hunter, do you
want to speak to Terry?" asked her dad, holding the phone.
"Howie! Howie!" said Hunter, whose wit is as
quick as her smile. "Oh, did you hear that?"
Hunt Ozmer asked Terry Bradshaw, who laughed at being second fiddle.
But Hunter was happy to talk with all four of the Fox
commentators, including Chris Collinsworth and, of course, Brown.
Hunter thanked them all for wearing the NPD pin. But
for Brown, she added something extra: "I love you."
On the Web: www.nnpdf.org.
http://www.roanoke.com/roatimes/news/story123989.html
******************************
Letter to the editor in Chicago Tribune on
Special Education
VOICE OF THE PEOPLE (LETTER)
Special education
David W. Peterson, Superintendent, Northern Suburban
Special Education District
January 7, 2002
Highland Park -- In the Dec. 22 editorial "A fight for special
students," the Tribune reported that Congress once again failed to keep a
commitment to fund the promised federal share of educating students with
disabilities under the Individuals with Disabilities Education Act (IDEA). But
the Tribune missed the point when advising that Congress be "wary of
creating another entitlement."
The IDEA already requires that every student with a disability receive a
"free and appropriate public education." Mandatory funding simply
means that the federal share of the costs of this program would be funded
automatically, like Social Security. Full mandatory IDEA funding would benefit
all children by freeing up local dollars that have been allocated to make up
for the shortfall of federal money.
IDEA is an important federal program that has helped our public schools create
an array of special-education programs that serve more than 280,000 Illinois
schoolchildren. It's too bad that congressional opponents and the Bush
administration haven't demonstrated an understanding of that.
Copyright © 2002, Chicago Tribune
http://chicagotribune.com/news/opinion/letters/chi-
0201070166jan07.story?coll=chi%2Dnewsopinionvoice%2Dhed
******************************
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