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AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Sunday January 6, 2002
SPECIAL EDITION
INDEX:
* The Fight For Hope,
Jamie's Story
******************************
The Fight For Hope, Jamie's Story
Let me
introduce myself I am L.D. Wedewer The United States and Iowa Autism Ambassador,
Founder and President Of: The Worldwide Autism Council, Iowa Autism Registry,
Worldwide Autism Registry, Autism Awakening, Autism First Steps Action Plan and
Daily Online Free Newsletter. I am a developer and initiator of many autism
resolutions, programs, and services in Iowa and worldwide. Yet the most
important job is as the mother of almost 4-year-old daughter with Early
Infantile Autism. We stood strong by day, sometimes silently crying at night.
Our families fight for hope, lead us to fighting for all individuals with
autism spectrum disorders.
Jamie has been our inspiration, and our hope that other children and families
will find out through one article that there is hope. If one family reads
Jamie's Story and it leads them to the pieces they need to finish their child's
puzzle then our fight paid off.
We were lucky I was an adimate reader of the PARENTS MAGIZINE. In an issue we
found a story written by Karyn Serroussi. The front cover read, Mother Cured
Her Son's Autism." I retired from the nursing field a few years ago, so
this story really intrigued me. She talked about metabolic dysfunction, food
allergies, Yeast over growth, testing at the Great Plains Laboratory and about
Bernard Rimland. I followed up on the information beginning the next day. In my
state I was told this was junk science at our Local University Learning
Hospital. I had kept a complete copy of Jamie's Medical Records clear back to
pregnancy. Jamie almost died at birth I guess the nurse in me took over and
told me to keep these vitals records. I went over them and with all the eating
trouble and sensitivity to crowds this just made plain good sense. We forged
forward; we fired all of Jamie's old doctors and began searching for a team of
doctors we wanted to fight for her like we were.
I Thank-God that I found all the right people at the very critical stage which
was within one week of loosing Jamie's speech for a week. Jamie was just tested
weeks before she totally regressed.
Picture
taken 30 minutes after Jamie had eaten spaghetti. Notice the drugged
appearance.
These tests were for food allergies comprehensive 92-IgG, immune
deficiency panel, organic acid test with yeast culture and sensitivity, peptide
test for wheat and gluten, vitamin panel 19 test (to see what vitamins she
might be mal-absorbing, Inhalant allergy comprehensive 22-IgE, heavy metal hair
test, and more. We had pretty much a full metabolic work-up done on Jamie
through the Great Plains Laboratory. We wanted to know why Jamie had all
of these similar problems that we had heard about with many individuals with
autism. We wanted it done by a laboratory that had experience with specialized
equipment and testing on children with autism spectrum disorders. The results
were devastating, yet we were not shocked. This was not the first time
nor was it to be the last time that I cried at night, silently in the dark.
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 basically 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. He even commented on the fact that these test results
were very extensive and well worth whatever we spent on them.
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, natural opium, Kreb cycle problems, food allergies, an almost
nonexistent Iga immune system, mal absorption, mal nutrition, no good flora
left to protect her, the lists goes on and on. 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.
While waiting for our appointment with DR Bruce Stayton I had seen a link o the
Autism Research Institute In the magazine and decided to fill out the
evaluation form on the web site located at www.AutismResearchInstitute.com When
the report came back it said you could call DR Bernard Rimland at the Autism
Research Institute regarding the results of the form. We talked for quite
awhile he told me about her test and how she had the rarest form of autism. He
went on to say, " only 10% of all of the individuals with autism fit into
this rare category." And he explained what that might mean for her.
The he told me about the DAN Protocols and the Autism Research Institutes
Evaluation Forms and materials. I was more convinced then ever before.
I remembered seeing in the Great Plains Testing Interpretation under the
paragraph Elevated Uracil but normal thymine that it said, "This
abnormality is found in about 10% of children with autism. Since folic acid is
involved as a methyl donor in the conversion of uracil to thymine, this
elevation may indicate a deficiency in folic acid or a defect in folic acid
metabolism. An autistic child with a much higher uracil value (>300 mmol/mol
cretinine) had a diffuse demyelination of the brain. It was exciting for two
doctors to come up with the same interpretation not even knowing that the other
one was even being done.
Then I remembered as a nurse Jamie's first Blood test that the creatine blood levels
were high then also. (In 2001 I started to research newborn blood tests of
children with autism. I was finding many similar results. I am expanding
my private research and I will release the findings in 2002.)
Then the day came for us to meet Jamie's DAN doctor for the first time. 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 ½ hours. He placed Jamie on many vitamins that she needed due to
mal-absorption. Most of them he suggested that we bought from the Kirkman
Laboratory. He said that they specialized in vitamins just for individuals with
autism that are wheat, gluten, and milk free. He even told us about how most
shampoos and conditioners have wheat and gluten in them. 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.
William Shaw, DR Bernard Rimland, and DR Bruce Stayton where the first doctors
to listen to what we had to say. To these men I owe my daughter's life, and my
families sanity. Finally someone listened. I never received this in Iowa, to me
this is sad because this is were I live. I have to drive 5 ½ hours to get help
for her, at least help I can trust. I am not the only parent in many states
that feels this way.
Within this critical two-week period Jamie began the diet, vitamins, &
minerals that her body desperately NEEDED! Jamie is now on a Soy, Wheat,
Gluten, Casein, (milk), banana, cocoa, rye, bran, & yeast free diet. I must
stress this is not a diet to loose weight, this is a diet for her health and
safety.
Even though this is a rough diet to have variety when you first begin, she is
now thriving! She no longer vomits 4-5 times a day. She still dislikes certain
textures of food & tries to self-limit her food, but we have gained much
ground. Even though Jamie is still unable to self-feed, she is now making
attempts with a few tries. (UPDATE: as of last month June 2001 Jamie self feeds
most of the time!) We are so happy that the longer that we stay with these
protocols that Jamie is continuing to gain ground. We have better eye contact,
less agressive behaviors, more expressive language and a little girl who once
again can say I love you more mommy. You cannot understand how much it can hurt
when your child cannot say this until they loose this ability.
We also started a Good sensory diet for Jamie to allow her appropriate time for
self-stimming behavior. This helped to curb her behaviors. Jamie has a savant
in singing country music. SHANIA TWAIN "Your Still The One" is her
favorite! I have sung this song to her since she was born. Jamie does not
sleep a lot & requires rocking because of her autism. So every night we
rock and sing. The last two songs at night before she goes to bed is done by
Collin Raye "Mother's & Father's Prayer she can sing with such
conviction, & " When You Wish Upon A Star." Jamie can tell you
within the first opening bars what the song name is and who sing it to almost
any song on CMT Country Music Videos. Yet she had no understanding of what she
was singing.
As you can see we keep Jamie busy all of her wakening hours with brief periods
in-between for leisure. Her autism demands routine to the strictest. Yet at the
same time we are trying to achieve teaching her some change, a good transition,
and the picture exchange program Do2Learn can be fun & OK. We also utilize
Green Span Floor Time, ABA, The Miller Method and some online home schooling.
We choose home schooling for many reasons, one is because of her immune system
she gets sick a lot. Yet another good reason for her age is, home schooling is
one-on-one in her environment. If used right with help of respite workers, SCL
workers, Therapists and others my child will have many benefits, achievements,
and continue to gain. Jamie is behind in many areas but everyday we strive for
more.
Looking back I remember how 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. To more recently, 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. Jamie's father and I cried. You see this is 2 ½
years away when this was said.
I will never know why her old doctors choose to ignore my child with disabilities,
or why they kept us in denial for so long. These were precious months that
could have helped my child that she lost. If they would have had the knowledge
of autism and early signs and testing options through the Great Plains
Laboratory it would have saved those months and years of struggle. These are
months she cannot get back without early intervention for her autism.
Today we understand that they are not really taught about autism, so we work
everyday to supply them with information and knowledge they need to truly help
their patients. Parents and Professionals have the right to have all of the
information to make an informed decision. Doctors and Nurses rely on the Merck
Doctors Manual to diagnosis and treat our children with autism. Yet they are
not held liable for the information that they print, I know this coming from
the nursing community. If you look they are not mandated to print anything
about the diet, vitamins, minerals or any of the other things I have discussed,
even though it has been proven by many double blind placebo pass over studies.
All professionals who know my daughter then and know her now has seen with
their own eyes the tremendous difference this had made in her life.
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 the make-up 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. Still most states
do not test infants or toddlers for food allergies.
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.
Today she 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 her old doctors for so 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. She was even given her
Hep B Shot at only days after birth while she was sick on antibiotics. This was
given even before she was able to go home for the first time. Jamie always got
extreme fevers with her vaccines and rashes yet nothing set off alarms to the
doctor.
To the many Doctors & Professionals who helped my daughter at the time when
she needed them most my hat is forever tipped to you! Especially when there are
so many doctors out there who will not listen, as many of you parents already
know.
Thank-you for helping the children with Autism Spectrum disorders around the
world and for helping to bring our daughter back to us. My personal Thanks go
to:
Dr. Bernard Rimland, Dr. William Shaw, Dr. Bruce Stayton, Dr. Sharon Collins,
& Dr. Zittergruen, Lisa Lewis, Karyn Serroussi, and Carol Kranowitz.
Thank-you for your books, your articles, office visits, and for many of you
listening to me via e-mail and phone consults as a parent, as an advocate, as
an Autism Ambassador, & as a nurse of a child with autism. In your guidance
you have helped me, to help my child. In this you gave me power over
helplessness and hopelessness. With all of your help you EMPOWERED me to stand
against this thief that came in my home in the middle of the night and stole my
daughter's soul, the name of this thief is "Autism."
As a result of autism, an estimated 400,000-500,00 Americans have lost the
ability
To communicate and interact with others. This year has been determined that 1
out of 53 babies born in the United States would later be diagnosed with One of
the Autism Spectrum Disorders. In Iowa we have over 3000-4,000 individuals
diagnosed with autism.
Dr. Marie Bristol-Powers from the National Institute of Child Health and Human
Development stated that in more recent studies, the prevalence is much higher
and that autism spectrum disorder is not rare. In fact, it is a pressing health
problem
According to the National Center for Education Statistics, enrollment will be
55.9 million by 2005! At least 800,000 educational personnel are needed to
serve these students.
Over one million doctors will be needed to serve these individuals
Today Autism Spectrum disorders is even more common then Downs syndrome,
Diabetes, Muscular Dystrophy, Cystic Fibrosis, and many forms of childhood
cancer.
Caring for people afflicted with autism costs more than $13 billion per year,
and the majority of these costs are borne by the families of the victims of
autism. These parents have sacrificed tremendously to provide the specialized
education and support services that their children need. Yet, they still do not
receive the support they deserve.
Even sadder is the fact that 48% of children around the world never receive the
current diagnosis or support, and fall into the cracks.
I want you to know that there is hope and in 2001-2002 Legislators, State
Autism Ambassadors, Autism Council, Autism State Representatives, Autism
Awakening, DAN, Autism Caucus, dedicated doctors and researchers
mentioned above, and many other Autism Organizations are in each state working
for better services and resources for families, individuals, and children with
autism. In the 2001-2002 Autism Campaign we are taking a progressive and
pragmatic approach on autism related issues.
My daughter does have early infantile autism this is the rarest form of autism
only 10% of all children with autism fit into this rare category. I know first
hand the Challenges these families face. Many days, as parents we cannot hold
conversations with our daughter. Communicating with her takes extraordinary
patience. Had we not engaged her in an intensive intervention program including
the testing by Great Plains Laboratory and Utilizing the DAN protocols
immediately after her diagnosis, She would have made much less progress today
if any at all. It was not many years ago that autism would have been misdiagnosed
and often institutionalized for the rest of their lives. Or refrigerator moms
were wrongly blamed for the child's illness.
Parents of children with autism regularly encounter people who do not
understand the difficulties associated with autism. Friends and teachers become
impatient. They repeat the same phrase over and over, as if the child will
understand if it is repeated one more time. Teachers are often ill equipped and
have no education to deal with the special challenges of children with autism.
H. Con. Res. 91 calls upon federal, state and local governments to allocate
sufficient resources to alleviate the shortage of appropriately trained
teachers of children with autism; and recognizes the importance of worker
training programs tailored to the needs of developmentally disabled persons,
including those with autism.
In Iowa and worldwide Autism Awakening has developed programs and handouts for
all professions to aid them in helping individuals with autism spectrum
disorders. These programs are specially tailored for each professional. This
includes brochures, booklets, and handouts, the Autism Action Plan for their
Profession, and the critical steps they can take for their students, clients,
or patients to get them off to an important good start.
It is of utmost importance to me that the federal government keeps its promise
to special needs students so they receive the first class education they
deserve. IDEA is currently receiving 15% which is not expectable, this is why I
completely support the fully funded IDEA and have requested legislators for the
past two years also do the same and come forth with the promised funding.
Yet another current problem is that there is no mandatory training for doctors,
therapists, educators, or any other professional to work with individuals with
autism. I believe this is wrong as many others do. It should be required to
have a baseline knowledge of autism if the professional is to truly help these
individuals as the above mentioned doctors did for our child. We have developed
the Autism First Steps Monthly Group Meetings. These meetings are like 3-hour
mini seminars or workshops. These meeting empower the parent or professional
with the knowledge they need to go home and get started. We send each attendee
home with copies of information so that they can easily refer back as needed.
In November I was nominated by more then 240,000 individuals in the United
States to be the United States Autism Ambassador. I commend my colleagues and
legislators for honoring Autism Awareness Month in April 2002. I and implore
them to work together to guarantee that the national crisis called autism
receives the critical attention and financial support it merits.
This was an Iowa Autism Awareness Month Proclamation Signing Ceremony in 2001.
As one of the initiators of the 2001 Iowa Autism Awareness month. I wrote a
letter to Governor Thomas Vilsack requesting sponsorship for an awareness
month. Below he is singing the actual original proclamation that I hang on my
wall with pride.
Some of the attendees included, Joyce Minor the United States and
Iowa CO-Ambassador and one of her two sons with autism Wesley, Lt. Governor,
Individuals from The Homestead, Jamie my daughter. I am holding my daughter
Jamie with autism, and many others.
I intend to
initiate in 2002 for resolution for sponsorship for state and national
standards of education on autism for educators, doctors, nurses, dietitians,
and therapists. That a minimum of credited hours be met on the conditions,
abilities, disabilities, treatment, therapy, and educational options in
entirety including but not limited to DAN Protocols and alternative options.
I intend to initiate in 2002 for resolution for sponsorship for state and
national standards For a new Autism Spectrum Disorder Wavier. So that
individuals of all ages and IQ's with an Autism Spectrum Disorder would receive
assistance that they so justly deserve.
I intend to initiate in 2002 for resolution for sponsorship for state and
national standards of insurance for individuals with autism spectrum disorders.
Since autism spectrum disorders is a medical condition, medical companies
should be required to have a standard to pay for all testing, treatments, and
therapy options including private companies. The Federal Mental Parity Laws
have been argued by many due to the many loopholes large enough to drive a
truck through. Only 30 states have passed their own versions of this law, only
some of them are even crafted more tightly then the federal law. All states
should be required to provide coverage for an individual with an autism
spectrum disorder no less extensive than coverage for a physical illness. This
should apply to all groups, HMO's, and any other governmental insurance
regardless of size. This coverage should cover all treatment, medicines,
vitamins, therapy, diagnostic, testing, and evaluations. Most of these costs
are currently borne by the families who already have stressed incomes. Another
situation is many states do not offer these types of specialized testing or
laboratories such as the Great Plains Laboratory. Insurance coverage does not
cover diet, vitamins or minerals. Even though these can be used as a medical
deduction on your taxes, the family must wait the whole year to receive their
money back, and some are not even covered then. To find out how your state
rates on the Mental Health Parity Law it is located online at:
www.drkoop.com/her/insurance/library/health/basics/mentalstate.asp
I believe "One Voice Will Be Heard" One Voice, One Child, One Story
At A Time!
I also believe in that, "The Power Of One Person Is Great, One
Person At A Time We Can Do Anything! We Need To Pick Up Our Piece Of The Autism
Puzzle and Do Our Part To Put It In Place State by State, City by City!"
We Can Be Prepare For 2005 With Your Help!
If you are interested in more information on our story content, how to get
tested, or references within the content of this story please contact me using
the information below.
To Contact the Great Plains Laboratory for testing options for your child with
an autism spectum disorder point your online browser to:
http://www.greatplainslaboratory.com/
Latest Picture of Jamie visiting Santa in 2001.
Jamie hugged Santa for the first time!
Peacefully,
L.D. Wedewer
Iowa Autism Ambassador
United States Autism Ambassador
IaAutismAmbasadr@aol.com
L.D.
Wedewer
President and Founder Of:
Autism Council
Iowa Autism Registry
Worldwide Autism Registry
Autism First Steps Programs
Autism First Steps Free Online Daily Newsletter/Newspaper
Autism Awakening In Iowa and Worldwide
E-mail: AutismAwakening@aol.com
Web Site: www.AutismAwakening.com
1900 K Street S.W.
Cedar Rapids, Iowa 52404
319-364-2687
******************************
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