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AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Monday January 14, 2002
INDEX:
* Autism dangers every
parent should know
* In the hands of a system needing help of its own
* Drew's story: Teen's downward spiral forces difficult decisions
******************************
Autism dangers every parent should know
THE
EPIDEMIC AS I SEE IT....since my son was diagnosed with autism/pdd two
years ago I
have spent endless amounts of time trying to make some since of what
caused our
sons disability and the longer I research,and the more I learn, the more
obligated I
feel to write this email....to my friends,my family and anybody else that it
will
reach..At this point I am about ready to start handing out flyers to strangers
on
the street
just to make me feel better but I guess I will just start here,with you...So
forgive me
if I vent awhile....sometimes we just need to do that...I find it appalling I
was never
told anything about any of this and if I can save another mother from
making an
uninformed decision that may cause permanent damage to there child
then at
least I have done something.....So please,take the time to read this,think
about it
and then forward it to anybody you know,especially people with babies or
that might
be expecting.I wish to God I would of had the information,things may have
been very
different and after the damage is done that is a horrible feeling to
have...Autism
(as far as I know) has never occurred on either side of our family,we
were not at
high risk,and it didn't matter..Joe developed it anyway..If it can happen to
us it can
happen to anybody,There is no cure,no immunity,and no way to tell if your
child might
have the same reaction.All anybody can do is educate themselves on
this
epidemic,and then make informed decisions on protecting there kids...After all
thats what
this is all about...So here is a little information......Autism is a
neurological
disorder that affects a childs ability to
socialize,communicate,understand
and express emotion and a lot of times affects
there
sensory perception,making sound,touch,bright lights and other outside
stimulus
painful and terrifying or going the other way and dulling it to the point of
not
feeling
pain(thank God Joe doesn't have to many sensory problems.except a high
tolerance
for pain that leaves him practically fearless and often covered in bruises
from being
to rough on his body)As a result the child withdraws into there own little
world and
develop strange behaviors to "tune out" unwanted stimulation..A lot
of
them
develop rituals and routines to help them feel secure and safe in a world they
don't
understand and that scares them on a regular basis...many are
hyperactive,only
sleeping a couple hours a night,many have obsessive compulsive
issues that
force parents to correct the same behavior over and over again..Making
the child
seem disobedient and very hard to train..I could spend forever going on
about what
it does but there is just to many variables..No two autistic people are the
same and
the spectrum is huge...During my research I have become convinced of a
few truths
though that help to break it down.#1 there are different causes that create
different
types of autism symptoms...
#2 finding
the right
cause means finding the right treatment....and
#3 that prevention is a lot easier then treating and living with it...My
belief is this,that there is a disorder that is uncurable, unpreventable,and
devastating to the people that have it..It probably starts in utero,for unknown
reasons,and is probably genitc.It is very hard to treat although early
education and intervention can be very helpful in the long run....i think it is
also VERY RARE..they call it Autism..then there is autism symptoms that for all
intense and purposes create autism except for one thing,it was caused after
birth by a reaction to a chemical..(it is interesting to note that mercury
poisoning has the same symptoms as autism)this cause of autism,I believe,is not
so rare..statistics vary some depending on where they are coming from but to
give you an idea so you don't think I am half baked here are some of the recent
findings.. Studys show a 273% increase of cases in Ca. in the last 10 years,a
500% increase in Maryland was shown in 5 years,Brick Townsship, NJ. reports 1
in 149 kids being affected ,up from 1 in 1500.....In Ca. 667 cases of full
blown autism were put into the system during 1994,556 cases were put into the
system in just the last 3 mo's of 2000..the autistic population has been
growing at about 900% since 1992.making it the fastest growing group in the
population..It is scientifically impossible to have an epidemic of
developmental or genetic disorders of any type.....Impossible.....and this is
an epidemic.which means something is causing it....untill recently I thought
the only vaccine that was in question was the MMR that is given around 15 mo
and in these cases of "autism"(I prefer the word poisoning) it
attacks the babies ability to digest normally causing peptides(basically a
narcotic)to build up in the system and cause all the classic symptoms of
autism,and a few tale tale signs of its own such as bowl problems,8 or 9 dirty
diapers a day of pale,runny stool that smells exceptionally bad ,(according to
their mothers)half digested food in the diaper,and elevated peptide levels in
blood tests..the good thing about this one is it is easy to recognize,and often
responds very well to treatment..Secretin infusions and a special diet have
both down that road and ruled it out with Joe last year)...Now I have found out
(along with the rest of the world) that there has been a significant link
between Autism and exposer to high Mercury levels in vaccines given to babies
under 6 mo old...mercury levels found in HepB,Hib,and DTP..specifically a
preservative called Thimerosal,that is used in multi-vaccine combo's..since the
link was made the companys voluntarily stopped making it,and created a safer
mercury free vaccine in a hurry..but never admitted a connection,a risk, or any
wrong doing, and not recalling what is in circulation or destroying what was in
stock.(so it is still very much out there) Joe received all these
shots(specifically Tetramune for his dtp+hib.we don't know yet what type ofhep
b he got yet) by 6 mo's old,most by 4 mo's...and one at birth..and they don't
adjust dosage for birth weight,or preterm babies leaving them at higher
risk(Joe was a 11/2 mo's early)..I just found this all out in the last couple
of weeks and have already been contacted twice by a law firm that is adding my
case to thousands of others in hopes of making the Manufactures of this stuff
liable for the damage they have done...On a personal note if it turns out
this is what hurt my
son,trust
me when I tell you that you can't put a price tag on it...(on bad days I want
somebody's
head on a plate for doing this to him) but the part that really bothers me
is that I
have a 41/2 mo old daughter,who because of having a brother with it is at
high
risk,and I knew about that when she was born so I questioned all her Dr's,told
them she
was at risk, and that I had my concerns and I was blown off like i was
having
paranoid delusions brought on by my sons condition..I never once heard
anything
about this risk..and like i said,I asked and asked again..They said it was
safe and
she was given her Hep B a birth just like everybody elses babies(I don't
know yet if
it contained murcury.I am waiting for her records)and all though I had no
reason to
think they were unsafe(besides my paranoid delusions)something in my
gut told me
to just wait on her vaccines till I knew more,just in case.So I did..(thank
God) and
then I found all this out when she was 4 mo old and would have had almost
the entire
series of required shots...and I would of not been any more informed of the
risk then I
was with Joe.The fact that I tried to be ,and wasn't provided the information
makes me
incredibly angry.(to put it nicely) If I couldn't find it when I was looking
for
it what
chance does the average unsuspecting population have of being properly
informed?Why
don't they tell you there is a difference in brands of vaccines and one
has a risk
the other does not...better yet why don't they stop using it all together??
on a
personal note they better hope her first Hep B was a newer safer one...the way
I
see it they
have no right to put your baby at risk like that and take the decision away
from you no
matter what their personal feelings are about the safety of the
vaccination..(and
most Dr's swear by it,although mine stopped,cuz he just don't
know)Paranoid
or not,I know my son is autistic,and if he has a predisposition to
reacting to
his vaccines it is very likely his sister does to,which put us way more at
risk then
even the general population and they STILL didn't tell me...It makes me
crazy and
on a bad day I would like to get my hands on her birth Dr
and make
him tell me why I have a pile of evidence to support my "paranoid
delusions"...It's
just not right the information isn't given to people...or better yet that
the need to
tell people isn't eliminated altogether by just changing policy's on how we
vaccinations...From
what I have learned so far all of this risk is preventible and your
baby can be
vaccinated SAFELY,but it is really up to the parents to insure it's done
because the
Dr's just follow procedure,and are not ready to admit that all of this is
true,although
I don't think that will last much longer...Vaccinations are important,and
I have
asked myself if i would of known the risk if it would of stopped me from
vaccinating
Joe,or if i would of overlooked it as"that won't happen to me" like
we all
do when we
read the possible risks on medical treatments and then do them
anyway.And
trying to decide what to do about Kaitie's was horrible...It is a hard decision to pick between the disease and the
reaction..Neither may happen,but if one or the other does you are stuck with
the consequences and your decision that made it possible..(isn't parenthood
fun..hahaha) The good news is that before to long mercury will no longer be in
the vaccines and there are mercury free vaccines already on the market but it is
up to you to make sure your baby receives the safe ones.(i
have a list
if anyone ever needs more information).If there not on the safe list,ask
your Dr to
order them before you vaccinate and make sure,don't take their word that
is a
mercury free vaccine,check the bottle,read the labels,don't let them blow you
off...you
can never be to careful..and even if your child would of never had a bad
reaction(and
thank God you won't know) you can feel good about making it a little
safer for
the next little guy that goes in that probably would have...it is two comman
to ignore
and to easy to avoid....If you ask for the Mercury free versions chances are
they will
provide them and if they don't ..Stall....The problem with mercury is the dose
on such a
small body..and there inability to process and eliminate it..By 6 mo's old
there
little bodies are better able to handle it.(so they say)...I am still going to
insist
on the
Mercury free ones for Kaitlyn AND wait till 6 mo's old.but it is a personal
choice..I wish
I would of had that choice with my son..... As far as the MMR,it has
nothing to
do with mercury,and can be given safely if it is broke down..so instead of 1
shot for
all three diseases you get one for each..it means more shots over a longer
period of
time but in the big picture it is worth it just for the piece of mind.(at least
in
our
case)..Well there it is ....the ramblings of a mad woman on a mission..If you
have
read this
far I should thank you..:)I didn't mean for it to be this long..Do with it what
you
will,keeping in mind I am no expert on autism and I sure ain't no Dr. but I
know
how to read
and draw my own conclusions and I have spent a lot of time doing it..I
won't swear
that vaccinations caused Joe's autism but after 2 years of researching
autism and
2 weeks of investigating this mercury lead by burying myself in study
reports,dr's
records,articles,and filling out papers for lawyers (who have an untold
number of
cases just like mine) it looks like it very well could have been....Time will
tell,I have
a lot of work to do on this still to see if it applys to Joe..maybe it will
lead
to some
answers for us in his case,maybe another dead end..in either case.just like
with the
MMR it is a very real risk,that many families are living with the affects of
and
it needs to
be taken seriously....Parents need to ask themselves if there prepared to
risk
it....First maybe they should spend a week raising an autistic child..
Well, I
have said my piece......Thanks for listening....
God bless you
and yours...take care of each other,
Crystal
crystaldawn1@mindspring.com
******************************
In the hands of a system needing help of its own
BY JEREMY OLSON
COPYRIGHT © 2002 OMAHA WORLD-HERALD
RELATED STORIES
Your Newspaper: Series investigates mental health system
Glossary of terms
Models for change, Day 1
Drew's story: Teen's downward spiral forces difficult decisions
Little data available to track care, funds
Shortage of specialists delays treatment until problems build
Accurate diagnosis is key but can be elusive
Nebraska's mental-health-care system
for children is desperate for attention.
Drew, above, was 13 when specialists
determined his need for extended psychiatric care. His odyssey through the
mental-health-care system will be told over four days, beginning today.
It is in such a sorry condition that parents are pushed to surrender custody of
their children to the state just to get them medical help. It is so short of
psychiatric specialists that family doctors and pediatricians make critical
mental-health decisions that they're not trained to make. And many children
endanger themselves before they receive adequate treatment. It is in such need
of treatment facilities that children sit for weeks or months in the wrong
places, waiting for space in the right ones. The toughest cases are shipped
from place to place. If children cause trouble, perhaps because of the lack of
treatment, that long wait takes place in juvenile jail. It is so plagued by
buck-passing among the public and private groups who pay the bills that needed
care is often delayed or even denied. This is the system entrusted with the
state's most vulnerable and troubled youths: depressed children who contemplate
suicide, schizophrenic teens who hear psychotic voices, bewildered and even
abused youths who can't control their impulses or emotions. The system can and
does help children. Sometimes, however, that happens in spite of itself.
Parents receive spotty guidance as they seek help from medical professionals,
insurers and schools. This isn't the way the system is supposed to work.
Advances in psychiatry and civil rights in the 1960s and 1970s transformed
views on the treatment of mental illness. The old way - locking up patients in
facilities for years - was to be replaced by new treatments closer to home. The
entire nation is grappling with these issues. The U.S. surgeon general calls
the quality of mental-health care, especially for children, a "public
crisis." An estimated four of five children with an impairing mental
illness receive no specialty care. Childhood mental illness isn't rare. And it
affects more than the children and the families who struggle to raise them,
especially when treatment is lacking. Classrooms are disrupted. Juvenile crime
and drug abuse rise. Police and emergency-room workers confront mental-health
crises for which they aren't adequately trained. Taxpayers bear much of the cost
- in criminal detention and expensive medical services - when illnesses are
ignored until children snap. Last year Nebraska spent about $64 million in
state and federal tax revenue on mental-health care for kids. That excludes
some public spending, such as special education. Comparative data is meager,
but Nebraska fares worse than the nation in the availability of child
psychiatrists, community-based care and mental-health funding. A few
innovations are being tried, but public officials agree the state has far to
go. In a six-part series this week, The World-Herald scrutinizes the care of
mentally ill children in Nebraska and provides a rare glimpse into the lives of
some. There is Drew, whose four-year odyssey through Nebraska's mental-health
system transformed him from a depressed 13-year-old to a sometimes violent
17-year-old. There is a 16-year-old boy whose mental disorders went largely
ignored while he sat for 10 months - 23 hours a day - in a solitary detention
cell. There is Latoya, whose treatment for schizophrenia was delayed for months
while insurers and caregivers debated her needs. These children are among about
49,500 in Nebraska and 80,700 in Iowa who suffer serious mental illness. The
U.S. surgeon general estimates that 10 of every 50 children will suffer some
form of mental disorder and five will be seriously impaired. Mental-health care
traditionally has been a government responsibility. States were to take the
lead for reforming the mental-health system. Many states, though, reaped the savings
from closing institutions but didn't invest in the community-based programs
needed to make the reform work. In Nebraska, a 10-year, $37 million spending
plan was drafted in the late 1960s to overhaul the system with the help of
community and private efforts. While parts of the plan were adopted, the state
hasn't kept up with the demand for community mental-health care. One recent
federal report ranked it 49th in funding of community mental-health programs,
spending just over $8 per-capita compared with $32 nationally. (Iowa, at $14,
ranked 45th.) Even the Nebraska Legislature's decision last year to spend $6.5
million more annually on community-based programs won't pull the state close to
national averages. Private support for mental-health care also is lacking in
Nebraska, Iowa and the nation. Insurance benefits for mental-health care lag
far behind those for physical health. Insurers require such definitive proof of
the medical need for care before they pay for services that treatment is often
delayed until a crisis occurs. "You have to wait until the child is more
out of control" before treatment is authorized, said therapist Edwin
Maupin of Ogallala, Neb. Disorders often aren't noticed until children start
misbehaving. Then the behavior, not the illness, becomes the focus. As a
result, the public rarely views these children tolerantly or sympathetically.
"Nobody puts the little change jars on the quick-shop counters for our
kids," said C.J. Zimmer of Lincoln, the parent of a mentally ill child.
But how can a teen behave properly when a persistent voice in her head tells
her to stab herself? How can a child concentrate on homework when a truck
humming on a distant highway sounds as if it's about to crash through his
bedroom window? How can a young boy make friends when he is afraid of the
imaginary pirates standing in front of him? Without help, they can't.
Nationally, an estimated two children in 10 with serious mental disorders will
be arrested, six in 10 will drop out of school and five in 10 will be unemployed
as adults. The problems extend into the adult prison system. Nebraska has the
sixth-highest rate of inmates who receive psychotropic medications. It doesn't
have to be this way. In other states, partnerships between Medicaid, caregivers
and parents have significantly improved the outcome for mentally ill children.
But in Nebraska and western Iowa, mistrust among these groups has prevented
such partnerships. Thirty-four states have passed insurance parity laws,
placing a range of demands on private insurers in an effort to make
mental-health benefits equivalent to those for physical health. Nebraska's
version passed in 1999. Some state senators found it so weak that they tried to
toughen it last year, without success. In Iowa, parity bills have been
introduced but have gone nowhere. Congress last month set aside comprehensive
reform and instead extended for one year a federal parity law that
mental-health advocates say has too many loopholes. Private insurers resist
demands for full parity, saying it would force them to raise premiums. That in
turn would force lower-income families to drop their health insurance
altogether. Progress on all fronts requires a greater public understanding of
mental illness, said Ann Ebsen, chairwoman of the Sarpy County Mental Health
Board. The causes generally are not a matter of bad parenting. "It happens
to the best of families. It happens to the worst of families," Ebsen said.
"It's an illness, and we don't treat it very well."
http://www.omaha.com/index.php?u_np=0&u_pg=36&u_sid=280651
******************************
Drew's story: Teen's downward spiral forces
difficult decisions
BY JEREMY OLSON
WORLD-HERALD STAFF WRITER
First of four parts
Drew displays a photo of himself with his older brother, left, and his older
sister. Drew and his older brother, Jacob, have been diagnosed with the same
mental illness. At age 13, Drew landed in a psychiatric emergency room.
LINCOLN - Drew is in his room. When isn't he, these days. It's the day after
Christmas, 1997. The broad-shouldered 13-year-old sits cross-legged on the
floor. Marilyn Manson's dark gothic lyrics blare from the boombox. Drew looks
down at the shiny razor blade in his hand. It's been a lousy year. School is
tedious, and kids tease him about his weight and his wide-framed glasses. His
latest report card is filled with plummeting grades and teachers' warnings.
"He seems much smarter than he shows." "Needs to take part in
class activities if he wants to pass." "He is running out of
time." Ever since his mom found a marijuana pipe in his closet last month,
she has been on his case with her curfews and her rules. He can't even talk to
her anymore. She doesn't listen. Nobody listens. This grim mood has overwhelmed
Drew more and more recently. When it does, he just can't shake it. Favorite
foods taste bad, favorite activities seem boring. Life seems like a waste of
time. Nothing matters. I'm on my way down
the minute that it's born
it begins to die
I'd love to just give in,
I'd love to live this lie
I've been to black and back
I've whited out my name
a lack of pain, a lack of hope,
a lack of anything to say
there is no cure for what is killing me
- Marilyn Manson, "The Minute of Decay" Drew starts sliding the razor
blade along his left arm. After a while he switches hands and starts cutting
his right arm. He sees the blood, but he can't feel any pain. He's too absorbed
to notice when the door opens and his mother looks in. Pam feels cold and numb
as she watches. What should she do? What should she say? He's barely a
teen-ager but he's already too strong for her, and he has a tight grip on that
blade. Drew has been distant for months, especially since she found that pipe
and called the police. If only they had just chewed him out, scared him
straight. Or put him in a program to get him away from drugs. That's all she
wanted. But he had a juvenile record - shoplifting cigarettes and threatening a
neighborhood bully with a knife Drew found in a storm sewer - and they arrested
him. Pam had always seen Drew as her sweet, sensitive child, especially when
compared to his older brother and sister. Perhaps because she was so focused on
getting them safely through their teen years, Pam was caught off guard when
Drew started having problems. After this latest arrest, Pam tried to spend more
time with him, even quitting a second job delivering newspapers. But she's too
late, she tells herself as she watches him. There must be 30 cuts on his arms.
Drew catches a glimpse of her. All the feelings he's been trying to escape come
rushing back. He slowly stands up, then slams his fist into the wall. He turns
to his mom; tears roll down his face. Pam phones her father for help. She finds
herself lying to Drew - the only way she can think of to get him to the
hospital without a fight. If you go, she lies, you can see your girlfriend
afterward. Her father marches Drew outside and into the back seat of the
Pontiac. When he clicks on the child safety locks, it's clear Drew won't be
getting out. Inside the emergency room, Drew slumps into a seat and hides his
face inside his sweat shirt hood. He finds a paper clip in his pocket and
starts scratching his arms. It's a week later, and therapist Debby Houston
can't seem to reach Drew. His depression has given way to hostility since being
confined to the adolescent psychiatric unit at the BryanLGH West Medical
Center. "I'm going to kill my mom," he tells her. Every day he defies
basic instructions - open your door, don't interrupt, go to your room - and
gets locked in the empty, white, "quiet" room to calm down. He
threatens to kill or cut himself. "What are you going to do, put me in the
quiet room?" he taunts. "You can't get to me!" It's like that
story about the Gingerbread Man, Debby thinks. "Catch me if you can."
Time is running out. His mother's private insurance covers up to 10 days in a
psychiatric hospital and has already tried to cut off coverage at four days.
That surely won't be long enough to get Drew stabilized: The hospital
psychiatrist believes Drew suffers from a form of depression and possibly
bipolar disorder, either of which would require lengthy treatment. Pam knows all
about bipolar disorder. Her older son, too, has been tormented by its wild
moods, which swing uncontrollably from depression to mania. She applies for
Medicaid, but her request is denied. She applies for welfare dollars: denied.
In both cases, she is told she makes too much money. The hospital bills shock
her - $725 a day, a staggering sum on her $10-an-hour paycheck as a state
government clerk. When her insurance runs out in a couple of days, who will
pay? The therapist has an answer: Petition the Lancaster County Juvenile Court
to transfer Drew's custody to the State of Nebraska. Then Medicaid could pay
for any extended psychiatric care that her insurance won't cover. I have to do
it all the time, the therapist explains. Pam is frustrated. It's as if she's
being punished for her success. A divorced mom, Pam has worked hard to raise
her three children while teaching herself computer skills to earn better-paying
jobs and get off public aid. From sandblasting cars and priming houses, she had
shifted to work as a state government clerk, earning a modest but steady
income. She is just now starting to climb the ranks in her office. The
therapist's solution brings back Pam's memories of the humiliation of living on
public aid. She remembers the embarrassment, the sideways glances, when she
paid for groceries with food stamps. She also worries that making Drew a state
ward will make him resent her even more. But she sees no other way. She
contacts the county attorney, who files the petition. Drew was 6 months old in
December 1984, when Pam left her husband. He had come home from another night
of drinking with friends and punched her in the stomach when he couldn't find
any cigarettes. He threw her out of the house to get some. Instead, she brought
back police officers, packed up and left with the kids. She moved from Maine
back to Lincoln, renting a house near her parents. Drew's older brother and
sister remember their life in Maine. His brother remembers their father
demanding that he stand in the corner and press his nose against a section of
wall too high for him to reach, then threatening to beat him if he didn't. His
sister remembers their dad holding a knife to their mom's throat. The older
children were violent to each other and harsh with Drew. His sister, four years
older, once stabbed Drew with a pencil. His brother, six years older, once
pounded Drew's head into a concrete wall. Drew's first run-in with the law came
at age 8, when his 12-year-old sister persuaded him to steal candy from a
store. Pam knows Drew isn't perfect. Still, she didn't expect him to need this
kind of help. He seemed like the typical boy only a few years ago, lugging
around a backpack so weighed down with He-Man figures and Teenage Mutant Ninja
Turtles he could barely stand up straight. He always had a vivid imagination -
a sense of fantasy - that made its way into his elementary school writing
assignments and his crayon drawings of castles and dragons. In many ways, he
was the typical youngest child, very possessive with his belongings and intent
on impressing or at least standing up to his older brother and sister. But he
also was sympathetic of others and would share with those he trusted. One of
Pam's fond memories is when little Drew, not yet school age, hugged the
Schwan's man for dropping off ice cream. Now she must willfully surrender
custody of her youngest child, her baby, to the state. Going to court is agony
for Pam. Maybe it's just the courtroom legalese, but it seems to her the judges
and the attorneys are blaming her for everything. During the next scheduled
family therapy session, Pam and the therapist try to explain to Drew what has
happened. His sister is there, too. It doesn't go well. Sitting in a hospital
meeting room, he won't turn to look at Pam. "Tell the bitch to shut
up," he tells the therapist. His mom tries to explain to Drew that she's
not giving him up for good. He picks up a chair and raises it over his
shoulders. He shouts and hurls the chair between the two women. The therapist
bolts for the door. Pam and her daughter duck and escape. On Monday: In
state care, Drew's troubles continue.
http://www.omaha.com/index.php?u_np=0&u_pg=36&u_sid=280588
******************************
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