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AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Saturday, December. 1, 2001
INDEX:
* Iowa Child With Autism Visit's Santa
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Iowa
Child With Autism Visit's Santa
Jamie
woke up on Friday morning and we began our daily routines. First Jamie did all
her first morning rituals then she sat down on her chair waiting for her
breakfast. While Mom cooks breakfast Jamie watches television.
Mom had prepared many special segments and movies of Christmas and Santa for
Jamie to view during quite time. This is what Jamie has learned to call her
down time. This is for when Jamie needs to calm down from over excitement.
Jamie because of her autism needs to be transition for changes in
routine. This is one good way to transition her for a visit to Santa.
Since Jamie only sees Santa once a year it is hard for her to remember who he
is. Jamie does not like strangers or out siders intruding in her space. Because
of her sensory dysfunction she does not like light touch.
When Jamie gets in a group of people one of the things that overwhelms her is
the fact that someone might touch her. So since it is expected by the world
that when you see Santa you sit on his lap, Jamie's "touch issues"
appear.
Another type of transition is a picture of Jamie and Santa from the previous
year. Since Jamie thinks in pictures this is a way for her to visualize what
will happen later that day, and who she will be with.
Jamie uses DO2LEARN Picture Exchange Online Free Program, along with other
cards Mom has made. This is also another good way to transition for Jamie to go
to see Santa. Here is an example of a few of the DO2LEARN Cards for holidays.
More can be view at:
DO2LEARN
Holiday 1 Picture Cards with words
snowflake
Star of David
present
candy canes
Christmas tree
ornaments
reindeer
Santa
snowman
stocking
It was well
into our morning and Jamie was working on her DO2LEARN Picture exchange Program
I was having her help me make her Schedule for this day. That way she knew
exactly what was going to happen not only for the day but for our trip to see
Santa in Iowa City, Iowa but also the events that would lead us to and after
that point.
That way as we went through out our journey we could hand her a card to put in
her pocket that said this was next. We place one copy on the board and the
other copy in mom's pocket for the trip. Then it was time for a break it was
time for Jamie's sensory diet. This consistice of her stage 2 Little Tikes two
seated sit and spin. After 2-3 minutes of spinning we move to Her Gray large
Rocking Horse we have named Smoky. Next Jamie rocks for an additional 3
minutes, after the kitchen timer goes off we move on to climbing and other
activities. we spend about 15-20 minutes on these activities.
Jamie is now ready for lunch and for a few more movies more directed towards
Santa. We choose Rudolf the Red Nosed Reindeer, and Here Comes Santa
Clause. Jamie is now in quite time to finish watching till the last one is
done.
Now we have time for integration on the computer, Jamie likes to go online and
play a few interactive games. Some of her favorite online interactive holiday
games can be found at:
http://theholidayspot.com/christmas/games/
Christmas games : free
christmas games for kids online
http://www.kidsdomain.com/games/xmas.html
Kids Domain Christmas Games
http://www.linapuzzles.com/puzzle-christmas/wordsearch.html
Word
Search Puzzle - Christmas
http://www.nanana.com/christmasgames.html
Word Games for Christmas
http://www.hometown.aol.com/SantiKlaus/KidsPartiesXmas/HolidayFunPg6.html
Christmas
Games & Holiday Party Ideas For Kids, Family & Classroom
Dad has
just arrived and we are getting ready to go. Jamie is all dressed and ready to
go. Mom hands her the picture card of the car to remind her we are about to
start our journey. On our ride to Coral Ridge Mall in Iowa City, Iowa we start
talking about what will happen at the mall, reminding her what is to come next.
We talk about Santa will be in his chair waiting for her and how he will give
her as surprise after she tells him what she wants for Christmas. We have
already worked on the list earlier so we remind her about the Yano animated
storyteller. Wal Mart and Toys R Us carry this item.
Yano magically comes alive with moving head, ears, eyes, and mouth. He includes
a cordless remote control interactive storybook touchpad so Jamie can choose
what story she wants.
She wanted a Barbie Doctor which includes a child exam table, stethoscope, and
about everything you would find in a pediatricians office.
This is a good tool for tranistioning to a doctor visit.
Includes:
Exam table and complete array of medical play pieces
Reflex hammer that really works. One of Kelly's poseable legs has a magnet, so
her knee kicks when tapped with the reflex hammer!
Height and weight scale with movable height and weight bars, to measure Kelly's
growth
Plastic eye and ear checkers and stethoscope
Pencil and clipboard
3 tongue depressors
Medicine bottle
Doctor badge, medical diploma, clipboard note page and lollipop
Stickers that are Kelly doll-size bandage strips
Walmart.com
- Children's Doctor Barbie and Kelly Dolls
Jamie arrive at the Coral Ridge Mall and begins to enter the building and
Jamie's parents begin to remind her that the carousal ride if after we see
Santa, so she knows we will not forget this important step when we visit this
mall. Soon we get close and see Santa's area. Mom then pulls out and gives
Jamie the pec card for Santa so she knows it will soon be time to sit on his
chair.
When she reached the gate to Santa's Area their was a few people their. We gave
the attendant Jamie's Iowa Autism Registry Card and her Worldwide Autism
Registry Card. These cards allow Jamie to by pass long lines, and her crowd
issues. These cards allows Holder and caregivers to go on ahead without wait.
This has helps Jamie on many occasions. The attendant was very gracious and
allowed Jamie to go next.
Santa recognized Jamie, and the parents reminded him she had autism and her
issues with touch and strangers. This seemed to trigger his memory of the past
three years Jamie visited. He quickly went to work on integration in a very non
threating manner. He never once touched Jamie yet you would think he was her
grandfather the way he treated her. It took several shots and the photographers
allowed Mom to reposition Jamie for quicker retakes. Jamie did pretty well with
only minimal outbursts and without much stress.
Mom handed Jamie the pec card for present to remind Jamie now was the time to
tell Santa what she wanted. Mom help remind Jamie what her list was and she
repeated what she wanted to Santa. Santa was very proud of her as was her
parents.
Before leaving Santa said, "I love you, Jamie!" Jamie looked at Mom
and said, " I love you, Jamie." Then Jamie said, " I Love You,
Santa." Jamie has begun to correct herself once in a while now. We are
working to transition her away from echo speech.
A short few months ago Jamie's Mom added the Miller Method
(http://www.millermethod.org/ Miller Method: for Children with Autism
Spectrum and Severe Learning Disorders) to be
used in conjunction with Jamie's GreenSpan FloorTime that was used since she
was diagnosed. The
Green Span Floor Time Model and Educator
and Parent's Guide Book For Setting up a Program of Green Span Floor Time and
adding Volunteers .
Jamie did wonderful on the GreenSpan FloorTime. As she grew she needed
something added to continue to progress. This is when Jamie's Mom added the
Miller Method. Mom said it was very easy to fill out the online form.
Click on the link that looks like this on the right hand side.
The best part was Mr. Arnold Miller wrote a e-mail back with many suggestions
to aid Jamie in her progress.
As Jamie walked away from Santa her Mom knew Jamie was ready for some more
sensory diet. Mom took out the pec card for the carousal and handed it to Jamie
it was time for her ride and some spinning activities. Mom took some more
pictures of Jamie riding the Reindeer on the carousal as it was still stopped.
Mom handed the carousal attendee Jamie's Autism Registry Cards and he gave
Jamie a Ride all by herself. Jamie had the carousal all to herself and enjoyed
it tremendously.
Jamie's Mom thanked the attendee for the special VIP treatment he gave Jamie
and they were off for the ride home so they could get a special holiday meal.
Mom wanted to celebrate Jamie's accomplishments and the treatment they received
while they were their joinery to see Santa.
******************************
Jamie,
my almost four years old youngest daughter. She has Early Infantile Autism; she
is verbal but 50 % of the time, she talks in echolalia words or sentences. We
begged the doctors all of her life for help. They said we were just over
anxious parents, or maybe they felt that we were over exaggerating her
situations. I was told by a physiologist, " The reason you are having
problems receiving the Social Security (SSI), Medical, and other benefits is
that the DSMIV 299.00 criteria states the child be 5-7 years of age. Even
though the symptoms and problems develop at 12-36 months of age. This is what
we were told at two and a half years old. Jamie's father and I cried. You see
this is 2 ˝ years away. How are we to pay for everything that she needs, since
the list of prescriptions is piling up? This was how we felt when Jamie was 23
months old.
These were precious months that could have helped my child that she lost. These
are months she cannot get back without early intervention for her autism. I
wonder how you can get early intervention for autism if you cannot receive
services until the age of 5-7 years old? This is how alot of parents feel with
newly diagnosised children with an autism spectrum disorder.
In February of the year 2000 we were lucky enough to see an article in magazine
that I always read. Parents Magazine, I am sure you have heard of this one. See
the story in there was of Karyn Seroussi's little boy and his struggles and
triumphs with Autism. Yes you heard me right triumphs. The complete story
can be found at: Parents Magazine
Article
She did a lot of checking and it led her to a DAN doctor and The Great Plains
Laboratory. This laboratory is where many tests were run regarding her child's
metabolic systems. These tests were very shocking. After my daughter's father
had joined in to play with her I asked him to read this, he too was shocked.
This was they day we changed our directions and inquires with doctors.
the ANDI site can be found at Autism NDI - Autism
Network for Dietary Intervention
We begged them to have her tested by the Great Plains Laboratory. We wanted her
metabolic system tested also, we wanted the truth, not some one telling us that
not self-feeding at 22 months old was ok. Another one was that tiptoe walking
was ok. These are also symptoms of autism, they were not ok.
So our old pediatrician sent us to the University of Iowa Hospitals and
clinics. There we were to have child psychiatric evaluations done by a multi
discipline team. We looked forward to this day for we thought we would finally
know what was wrong. Why did Jamie hand flap and rock on her head, and hold her
ears, why was she so scared of people and crowds, these and many answers we
wanted disparately?
When we got there it was much like the other experiences we had. First of all
when we set up the appointment we asked if they would please have a male
evaluator present. This was so that they could see Jamie's "Man
issue". When we arrived in the first of many visits they were all women.
So it was apparent that this was a predetermined agenda. Next they tested her
in blocks and puzzles. Autistic children are good with lining abilities and
puzzles, but they didn't know this. For this is one of the reasons they said my
daughter was ok. After what seemed to be hours they had us go to a waiting room
and sit while they called Jamie's old Pediatrician. This took almost 1-1-˝
hours. By then we had to move out to a more private room, and ask that they
come and get us because Jamie was screaming in tone, and throwing tantrums
uncontrollably.
They finally came to get us, they flatly said that she was ok. They never once
offered a reason for her behaviors or disabilities. No surprise to us at this
point for we already figured that it already was a waste of time because they
never once tested her on any of the things we told them that she couldn't do.
It was if they didn't want to see it. They continued by adding because she can
eye gaze sometimes and is verbal, and can reach up for me sometimes that she
couldn't be autistic. We were shocked by these comments, were they blind or
just un-educated. We only parents had investigated by researching prominent
places around the world, and we knew better. Why didn't they? So we asked them
when we could have the tests by Great Plains done, and they said that there was
no need for anything further testing. Jamie's father said, "What? You said
if we came down here, you would run the tests, we are paying for them so please
run them like you said you would to get us down here. They replied that they
would not order them. This is just junk science anyway. We were so angry we got
up and left, we didn't even let them finish. We didn't talk much on the way
home except what we were going to do the moment we returned to Cedar Rapids.
When we return back into town we went directly to the Pediatrician office and
ordered a complete copy of all of Jamie's medical records, we waited will they
copied them. Once they were in our hands we fired him. Our comment was, "
If her doctor will not be a part of the solution of "Jamie's
condition", then he wasn't going to be a part of the equation, We fired
him on the spot.
We asked a frequent customer of Jamie's father work place if he would take a
look at her. The reason was he was a chiropractor and did Kinesiology if he
would check Jamie out for yeast over growth and food allergies. We asked that
if he should find anything if he would order the tests from the Great Plains
Laboratory. He said he would. When we got there from the first moment Jamie was
out of control she screamed in tones and never once gave eye gaze. This
happened on every visit. She tiptoed down the hall to the exam room. After his
exam he ordered the tests with out a question he was in agreement that they
should be done.
We thought we were prepared, for what was next to come. In retrospect I now
know nothing could have prepared us for what we saw, heard, and was to deal
with. We heard and read words like, Leaky gut syndrome, Peptide system
problems, Kreb cycle problems, food allergies, an almost non-existent Iga
immune system, mal absorption, mal nutrition, no good flora left to protect
her, the lists goes on and on. Sound familiar yet. We were lucky that Dr. Shaw
told us about a wonderful DAN Doctor in Missouri that we could go to and he
could help Jamie. We called Dr. Stayton the next day to set up an appointment.
This was a few weeks away for he is a very busy man. He was the one that would
help us finally someone was listening. To Contact the Great Plains Labatory for
testing options point your browser to:
http://www.greatplainslaboratory.com/
See Jamie had had many illnesses from birth to current. You name it from
mastitis, to upper respiratory infections, ear infections, bronchitis, thrush,
urinary infections, unexplained fevers, rashes on bottom and around the mouth
area, plus so many more. This is common also with autism. Since the immune
system is working inefficiently. Jamie had red cheeks like rouge had been
applied. She also has dark purplish circles under her eyes. Her hands, cheeks,
and feet would go from colors of red to orange colors. These are symptoms of
allergies; this also can be common with autism.
I still to this day wonder why the pediatrician that we trusted with our
daughter's life didn't ever once check for food allergies. Jamie had all the
signs. She also has never self-fed, she never held her own bottle. At four
months old Jamie shut down eating her bottle when awake. Around 10 minutes
after she finally would go to sleep I would give her a bottle, with the attempt
to get nourishment in her. Jamie would vomit with every meal since birth until
about a few months ago. Sometimes she would vomit 4-5 times per meals. She also
had chronic diarrhea with milk and food. The one exception was when she ate soy
this would leave her over constipated. They pediatrician knew about these
things, it was even in the medical records. So why didn't he give this child a
break and check it out. He even twice did what he called "Starving her
down", it was his idea was that if we didn't give her any food and no
bottles while she was awake that she would take over. I tried to tell him over
and over that she seemed not to care if she ate. I called him everyday with the
fact that it wasn't working. He said to continue. The fourth day I called and
said no more, you don't get it, she don't care if she eats, she has only had
2-3 bottles of milk with no food. I can't do it any more she is starving.
Needless to say today she still doesn't care a lot about food, but is starting
to understand that food does not always make her vomit. I look back at this
with disgust, now that I know what her metabolic system looks like. I feel very
guilty for even keeping this doctors this long, for her system couldn't handle
these techniques in the state it was. I feel very lucky that she didn't die
from this. The other thing I must wonder is why would he give her so many
antibiotics, and then give her a DPT or MMR vaccine, while still sick. I could
go on and on about all of the mistakes that have been made but what would that
solve or change.
Then the day before Easter Jamie woke up different, it was like a thief came in
the night and stole our daughters soul and left a shell here. When she woke up
she didn't talk for 7 days. Only sound utterances or babbling like an infant.
Most of the time she was just so deadly silent. We was afraid this would happen
that is why we fought so hard just over the last couple of moths. This day we
saw Jamie arm jerk, hand flap, follow then square patterns in the bricks around
Jamie's grandparents picnic table. Then we saw Jamie crawl; her legs were so
weak she couldn't even walk, she drug her one leg and would begin to crawl
again. She was in another world very aloft and set apart from all of us. My mom
and dad as well as others asked me I what Jamie just said as if I magically
could understand her. Over and over I heard what is wrong with her. I could
only say I don't know but I am scared. We tried rolling a ball past her many
times, she didn't even realize it went past her. Thank-god her appointment was
in just a couple of days if we could only hold out this long.
Jamie's fever spiked on Easter to 102.8 but by the time we got her to the
emergency room it was above 103.O degrees. I asked the doctor to look at the
new test results before he treated Jamie, It took him awhile but he was very
shocked by the results. He had seen Jamie on many occasions, for varying
different illnesses, and knew Jamie from her visits to the Emergency Room. He
even commented about her autism and the fact that she was withdrawn with no
speech. He even stated further that the test results were sad. He said he
didn't want to give her an antibiotic, because of her yeast overgrowth
problems, but he had to. He stated because of her strep throat and the fact of
the almost non- -existent immune system. He said he was also going to prescribe
Nystatin for her thrush and yeast builds up until Dr, Stayton, could treat her
in Missouri.
Well the day came for us to leave. Joyce a friend of mine with two autistic
children went with me. This way she could help out with Jamie. The trip was
disaster except for at the doctor's office. Jamie screamed the whole two days.
Jamie had become obsessed with music and we had forgotten her country music.
There were many different patterns on the wall, bedspreads, and carpet. None of
which matched very well. Joyce and I stayed up until 4:00 AM in the morning in
the attempt to get Jamie to sleep. Only 5 hours later after falling asleep a
maid woke us up to clean our room. Jamie also can not handle changes so this
was also a problem. At the office Jamie never looked anyone in the eye, nor did
she talk to anyone. The doctor saw her crawl and tiptoe walk. He also witnessed
the fact that she had no speech. He also unfortunately heard her tone screaming.
He said he could treat her autism and he thought he could help her. Oh my God,
I have waited so long to hear that someone could help my child. While I was
there Dr. Stayton came up with a care plan for Jamie, now I finally had a
direction. He started her on a special diet due to her food allergies, and gave
her vitamins and minerals to replace what her system was mal absorbing and had
a deficiency of. He also listened to me and looked at a 4-inch notebook of
pictures we have complied since birth of Jamie. He looked at her medical
records and we talked for about 3- 3 ˝ hours. He was a wise man with a lot of
knowledge. I listened and picked his brain. To this day he is helping my
daughter, every time I leave his office or call him, I am confident that Jamie
is receiving the best possible care for her conditions. To this Day I have this
strong belief. He is the first doctor to listen to what we had to say man I owe
my daughter's life, and my sanity. Finally someone listened. Thank you Dr
Stayton, Missouri DAN Doctor.
Even sadder is the fact that 40% of the children with autism never get a
diagnosis this is sad
Even more alarming is the fact that Autism is increasing over the United States
at an alarming rate in some states as high as 1 in 150 children to some even
worse 1 in every 53 babies born in the United States will later be diagnosised
with one of the autism spectrum disorders, these children will fall prey to
this silent thief that comes one night and steals our children. Even sadder yet
and even more scary is the fact that it is now more common then childhood
diabetes, cancer, and downs syndrome and the list goes on.
In Iowa we were in a gray are and now in 2001 professionals are taking a stand
and doing their part to fill in the gaps in their services to fit the
needs of individuals with Autism Spectrum Disorders.
Currently in the doctors manuals it states that this diet, vitamins, and
minerals are junk science, how can they help us to help our children if they
are making judgements without all of the information.
Autism Awakening makes hondout materials for professionals and educators to
give to patients, clients, and students. To aid in completeing the circle of
knowledge needed to help famileis and individuals with autism.
Even though it has been proved across the world by many double blind pass over
placebo studies that autism is a metabolic and auto-immune system disorder and
that these metabolic treatments do work and do help autistic spectrum disorder
children.
See my daughters Autism are very rare. Only 5-10% of all children with autism
fit into this rare category, yet we are still fighting for her much needed SSI
and benefits. I am sending in our appeal this week. Unfortunately my daughter
is one of the children that has fallen through the cracks for many months now.
Scary is to have the knowledge that 40% of these children never receive the
correct diagnosis and never receive the funding, medical coverage, support, or
any of the above mentioned, that they need so terribly. I know because my
daughter and I are one of these 40% to this date.
Even though we received a diagnosis in April, we still were denied Social
Security. Yet Jamie does meet all the DSMIV 299.00 criteria for autism. These
children need extensive therapies, metabolic treatments, equipment for safety
and survival, restrictive diets, vitamins, minerals, and prescriptions,
funding, or medical coverage. These are items that they need, or should be
entitled to under the disabilities act or some other law. Diagnosing Autistic
Spectrum Disorder, PDD/NOS is a life-long disorder.
The second is that it has been proven all over the world in the last 10 years
that this IS a metabolic disorder not a mental disease, currently Iowa is still
in the dark ages. We have current started a group Autism Awakening.
We are currently asking parents and professionals for their autism spectrum
disorder/PDD/Nos stories and pictures. We want to start with on story, one
child, and one voice at a time. It is my goal to take these to Washington D.C.
to Capitol Hill. I want to be in the congressional hearings for Autism reform
etc. I want your voices to be heard also. If you are interested in sharing,
helping or would like more information please feel free to contact us.
We need your help, let the congressional committee hear you voice, speak out
and be accounted for by telling your story.
Contact AutismAwakening@aol.com
******************************
Some Links that helped us help Jamie
Nutritional Information &
Resources:
Conference
Engagements for Lisa and Karyn
The Celiac List Archives
The Celiac Support Page Gluten-free Cookie Recipes Attwood article about
milk and dairy Sully's "Living
Without" Magazine The
Living Sensibly Foundation - Your LifeThe
Feingold Association
Medical Info:
Int'l Child Development Resource
CenterDr.
Kalle Reichelt - University of Oslo, Norway
The Great Plains Laboratory Article:
American Journal of Gastroenterology, Sept. 2000 Article: Oral
Chelation for Heavy Metal Toxicity Dr.
William Crook: Treatment of Candida & Yeast
Find an Informed Doctor: The following is a list of doctors
who have been reported to be knowledgeable about the
DAN! Protocol (Clinical
Options Manual for Physicians), and supportive of dietary and biological
intervention for autism. We at ANDI take no responsibility for the views of
those listed below:
Southwest Autism Research Center
(AZ) Cindy Schneider, MD
Care with Alternative Medicine
(CA) Richard P. Huemer, MD
International Child Development
Resource Center (FL) Jeff Bradstreet, MD & Jerry
Kartzinel, MD
Vitality Health & Wellness
(FL) David Berger (MD-peds) & Dr. Andrew Levinson (psych)
Rydland Pediatric Wellness Center
(FL) Eric Rydland, MD, F.A.A.P.
Allergy Link (KS)
Jeremy Baptist, MD, Ph.D.-
Interview
with Dr. B.Stephanie
Cave, MD & Amy Holmes, MD (LA)
Hardy Healthcare (MA) Paul M.
Hardy, MD
Rhinebeck Health Center
(NY) Kenneth Bock, MD
Country Medical (NY) Jeffrey
Kopelson, MD
Murdoch Childrens Research Inst.
(Australia) Stephen Kahler, MD
List of DAN! Professionals &
Practitioners (ARI website) You can search for doctors registered with the
American
Academy of Environmental Medicine, or
the American College for
Advancement in Medicine, or other alternative practitioners who are more
likely to be informed about dietary interventions at
THE ALTERNATIVE MEDICINE
NETWORK or
EarthMed.
Personal Nutritional Counseling:
Nutritional Lifestyle Designs (Lauren Braun, RD)
Dietary Consultation Service (Charlie
Erica Fall)
Autism Educational Services
(Nadine Gilder)
Prohaska Productions
(Betsy Prohaska)
General Links About Autism:
The CHAT (Childhood
Autism Test)
Center for the Study of Autism The Autism Research Institute
Developmental Delay Resources
Cure Autism Now Foundation
Autism Books, Publications and
Conferences
Autism Research Unit The Carrie Brazer Center (FL)
Links to Mail Order Suppliers: GLUTEN FREE FOODS:
Vance's Foods (makes DariFree™
potato-based milk substitute)
Miss Roben's (large gluten-free catalog
has many dairy & corn-free baking mixes)
Gluten Solutions (an extensive
and varied selection)
The Gluten Free Pantry (well-known for
their mixes) Authentic Foods (terrific mixes
made with bean flours)
Kinnikinick Foods (incredible
doughnuts and other pre-baked goods!)
Dietary Specialties (also carries
low-protein foods)
Ener-G Foods (a
wide selection)
Very Special Foods (has rare and
unusual flours, many from root vegetables) Gluten Free Mall (a special diet
superstore)
Dietary Specialties Shoppe
(GF/sugar-free sauces, syrups, toppings)
Glutino (very tasty - most products
include corn)
Twin Valley Mills - Sorghum Flour
(also called Jowar flour)
SUPPLEMENTS:
Kirkman Labs (SuperNuThera, TMG,
EnZymAid, etc.)
Klaire Labs (SerenAid, etc.)
Hopewell Pharmacy (DanPlex)
Links About Autism & Vaccines:
National Vaccine Information Center (NVIC)
Autism Autoimmunity Project
Autism and Mercury - Lynn
Redwood
Committee on Government Reform Statement from Dan
Burton - December, 2000
******************************
More
links to Autism Experts in Sunday Special Edition Part 2
******************************
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