Re: [NIDS] CDC Accused of Vax-Autism Misrepresentations / Spectrum Center Is Expanding

2007-09-30 23:49:32

Here are my questions I just submitted to the CDC web
site. If I get an answer, I will report it to the list
Hal Rounds
Questions about your autism/measles page:
http://www.cdc.gov/nip/vacsafe/concerns/autism/autism-mmr.htm
Paragraph 6
What laboratories have offered to duplicate
the gastro-intestinal measles results?
Have they been funded? If not, when will they
be funded? By whom will they be funded?
Paragraph 7
It is stated that no scientific evidence
exists to link measles in the GI tract with
autism. Have any researchers yet investigated
this hypothesis in an attempt to provide
"scientific evidence" to disprove or confirm
this hypothesis?

Something to think about

2007-09-30 12:56:34

The posting listed is about the Federal Govt. wanting reimbursement for
their costs once someone has been found liable.
This would translate into Insurance companies wanting to repaid for
covered services that were caused by a liable third party, and probably
the School districts and regional centers.
All agencies, both public and private, would be entitled to be
reimbursed by whatever third party has been found liable. Everybody
would be in line ahead of parents and more importantly , our Autistic
kids.
Please consider this carefully when thinking about 'class action'
lawsuits!!
Please feel free to forward this to any list, groups or individuals that
you feel could benefit from this information
Marc Share
The Autism Emergence Project

Re-Post Sorry Forgot the URL

2007-09-30 11:57:23

The posting listed is about the Federal Govt. wanting reimbursement for
their costs once someone has been found liable.
http://www.detnews.com/EDITPAGE/0004/09/edit3/edit3.htm
This would translate into Insurance companies wanting to repaid for
covered services that were caused by a liable third party, and probably
the School districts and regional centers.
All agencies, both public and private, would be entitled to be
reimbursed by whatever third party has been found liable. Everybody
would be in line ahead of parents and more importantly , our Autistic
kids.
Please consider this carefully when thinking about 'class action'
lawsuits!!
Please feel free to forward this to any list, groups or individuals that
you feel could benefit from this information
Marc Share
The Autism Emergence Project

Re: [NIDS] Valtrex concerns....again

2007-09-30 03:04:54

Dr. Goldberg told us that the BEST sign would be a regression for the first
week or two, It means the medication is working and stirring up the virus, so
hang in there. If it goes much longer, though, I would call his office.

Valtrex concerns....again

2007-09-29 22:20:20

Hi All!
Sorry to pester everyone again, but I remain very concerned about my
son. He has been on valtrex (500 mg/day) for a little over two weeks
now. He still looks very sickly, he has stopped sleeping through the
night, and spends most of his day tantruming or laying on the floor
crying. He has completely lost focus, he is doing terrible with his
ABA, and has started licking things and clapping his hands over his
ears. His blood work shows mild to moderate leukopenia. Dr. G also
has had him on antibiotics for a few months as well as nizarol.
There is no hyperactivity (more like severe lethargy). He is in a
typical preschool, but his behavior has been so disruptive that we
may have to leave.
Have any of you experienced similar and severe regressions on the
valtrex? We have not seen one positive effect since putting him on
this. Realizing all kids are different, for those who saw positives,
how long did it take?
Thanks so much.
ann

Re-Post complete message

2007-09-29 11:11:24

In my posting last night, I in advertently removed some attributes that made
Sandy's position appear different than it was. It was in error and I want to
apologize to Sandy.
Here is the complete post with all attributes attached!!
As someone who is working many hours toward Autism/NIDS fundraising, I have had
a few discussion with/ Dr. G about the threat of a class-action lawsuit.. The
NIDS Institute is not seeking initial funding from pharmaceutical companies.
It is after the first or perhaps into the second phase of the Immune Modulator
trials that the large outlay necessary by a pharmaceutical company will most
likely be needed. It is quite expensive to research, test, produce and market a
new drug. The cost can often easily exceed $ 100 MILLION.
If the trials indicate that new or boutique versions of current medications are
needed, it would be necessary to corral a pharmaceutical company into the
picture. If there is a pending class-action lawsuit in which the POTENTIAL
damages could exceed multiple billions of dollars ( keep in mind, we are talking
about kids here) the entire industry will maintain a hand-off approach to any
new, improved or experimental drugs for our kids until such time as the lawsuit
results are much clearer. While it is EXTREMELY UNLIKELY they would lose a
lawsuit, it could take many years ( perhaps 5-10) until it shakes-out enough for
the pharmaceutical industry to re-enter the arena of new, improved or
experimental medications for our kids.
How quickly we have all forgotten the recent breast-implant class-action
lawsuit. All ' medical evidence' indicated no problems, yet many large companies
have declared bankruptcy, the class-action 'settlement' is still pending but is
in the 3-6 BILLION range, yet basically NO ONE has seen a penny almost TEN YEARS
later becasue the settlement amount is not enough for any of the participants.
** The 3-6 BILLION represents reduced damage claims dramatically because of
bankruptcies. In addition, liability in these case were somewhat limited because
the majority of the cases were elective surgeries. I also recall that the
manufacturers of implants severely 'restricted' the availability when the
class-action lawsuit began, in fact, pulling many products off the market. In
the case of the vaccinne, while it may eventually work in the pharacueticals
favor that the entire medical establishment, ( NIH, CDC, HMO, Departments of
Health, etc) basically forced the vaccines onto parents it is partially because
of that fact that the potential damages could be so MUCH LARGER. This will cause
even more alarm among the pharmeceuticals and make them even more wary of the
issue. Remember DOW-Corning and others went bankrupt over this.
The pharmaceuticals will stay -clear until the picture is more clear for them.
While the 2-5 year wait will most likely not decrease profit potential( in fact,
with the epidemic rate increasing, any delay could increase potential profits),
the 2-year wait could have terrible effect on all the kids who we could have
helped. I am not willing to risk the potential delay for my child. Personnely, I
have a few family members who were involved in either or both the DES and
Dalkon-Shield class-action lawsuits. Those are two issues where the issue of
fault and liability was not ever in doubt and NONE OF THEM EVER SAW ONE PENNY,
EVER!.
Our organization, The Autism Emergence Project, is primarily seeking large
corporate donors/ sponsors, as well as, perhaps government/grant funding in
support of the NIDS Institute and Medical Board.In speaking with some
representatives of these groups, it has become quite clear that should there be
a high-profile class-action lawsuit against pharmaceuticals, they would be much
less likely to sponsor and make the significant commit (1-3 Million) we are
asking of them.
I urge all who are considering a class-action suit to consider the COMPLETE
RAMIFICTIONS. of your actions. How much, if any, would the damages be, how long
would it truly take, and would it be worth it. I am not willing a risk a 3-5
YEAR DELAY in providing better treatment for my child, or any of your children,
which would only provide, at best, some reduced settlement amount in 5-10 years.
WE have the potential to HELP OUR CHILDREN NOW!!
Those of you who are promoting the lawsuit idea, please, I urge you to consider
your actions WITH THE UTMOST CARE, CAUTION AND LOGIC!

An Error

2007-09-29 07:30:25

In my posting last night about a class-action lawsuit I
inadvertently removed reference from SandyD that made it appear that her
position was the opposite from what it is.
Sandy supports Dr G and is not in support of a class-action suit.
I am sorry for any confusion.
Marc Share
The Autism Emergence Project

NIDS Meeting June 10th, Bethesda, MD

2007-09-29 04:26:53

Dr. Michael J. Goldberg, founder of the Neuro-Immune Dysfunction
Syndrome Institute and its parent organization (formerly Medicine for
Autism Today) will host an informal meeting on Saturday, June 10th
at 8 pm at the Marriott Suites, on Democracy Boulevard, Bethesda, MD.
Your questions concerning the current epidemic of autism spectrum
disorders and new treatment options will be the focus of the evening.
Attendance is free. Tax deductible contributions to the NIDS
Institute are welcome.

Re: [NIDS] Class Action lawsuit against the vaccination manufact

2007-09-28 16:19:01

Ricci,
Pharmaceutical companies get sued every day by INDIVIDUALS. An
enormous class-action lawsuit would bring unwanted media attention.
You underestimate the political nature of big business.
I believe that Dr. Goldberg's long-term experience with the
pharmaceutical industry and research establishment in respect to the
CFIDS population gives him a fairly good insight into the political
nature of these industries. He is not ill-informed.
Sandy

Re: [NIDS] Class Action lawsuit against the vaccination manufacturers?

2007-09-28 14:55:00

<< Dear Listmates,
Last week Dr. Goldberg mentioned to me that there was talk of filing a class
action lawsuit against the manufacturers of vaccinations, specifically the
ones that parents believe have triggered their child's autism. Dr. Goldberg
issued a warning and gave me permission to quote him online to get the word
out:
If class action lawsuits are filed against the vaccine manufacturers, it
will
put every company in the DEFENSE MODE; we will not have a prayer in getting
one of them to fund our immunomodulator trials, and this will DELAY HELPING
OUR KIDS.
Kate
This is pure, unfounded, CRAP. My husband works for one of the largest
international pharmaceutical companies and I have had this discussion with
some of the highest people in this organization. Pharmaceutical companies
get sued EVERYDAY. This does not stop them from continuing to research and
develop new drugs to bring to the marketplace. If there is money to be made
by developing drugs for the autism community, they are going to do it. Dr.
Goldberg is ill informed.
Ricci

Re: [NIDS] Hillary Clinton &amp;...

2007-09-28 08:03:44

Charlie and Lori, Maybe you could tape this for me? I'm curious as to what
"Hillary" has to say about autism! A.
In a message dated 5/18/00 4:59:48 AM Eastern Daylight Time, FEAT@...
writes:
<< Hillary Clinton & Autism
New York. . .
ACES in conjunction with NYFAC will be presenting
"An Evening of Autism Awareness"
Sunday June 11th at 3 p.m. at PS 177 in Fresh Meadows
This event will be hosted by
First Lady Hillary Rodham Clinton
other guests include: U.S. Senator Charles Schumer
U.S. Congressman Anthony Weiner
NY State Assemblywoman Audrey Pheffer
and others
A formal press release was developed and will be posted on the list
tomorrow.. We fully expect full press coverage for this event and are trying
to have NY1 & CNN news cover the event live!

Class Action lawsuit against the vaccination manufacturers?

2007-09-28 04:59:27

Dear Listmates,
Last week Dr. Goldberg mentioned to me that there was talk of filing a class
action lawsuit against the manufacturers of vaccinations, specifically the
ones that parents believe have triggered their child's autism. Dr. Goldberg
issued a warning and gave me permission to quote him online to get the word
out:
If class action lawsuits are filed against the vaccine manufacturers, it will
put every company in the DEFENSE MODE; we will not have a prayer in getting
one of them to fund our immunomodulator trials, and this will DELAY HELPING
OUR KIDS.
Kate

Re: [NIDS] has anyone pursued the newborn testing?

2007-09-27 15:12:59

Hi
Try:
The M.I.N.D. Institute
UC Davis Medical Center
4860 Y Street, Room 3020
Sacramento, CA 95817
Toll-Free Phone: (888) 883-0961
Local Phone: (916) 734-5153
http://mindinstitute.ucdmc.ucdavis.edu/
I believe they were involved with this research.
Regards
Hal Rounds

=====

has anyone pursued the newborn testing?

2007-09-27 15:05:32

Hi everyone,
About two weeks ago or so an article came out in our local paper AND was on the
internet regarding new findings on a blood test to determine if a baby was prone
to develope autism or have MR. I am pregnant with #4 (another boy- my oldest is
the only one so far with autism) and I am interested in this. Also, I would be
interested in having my son with autism tested if it can be done at his age.
Are there any more pregnant moms of autistic kids out there who have read the
article and are interested as well?? I gave the article to my ped. and he is
going to find out how to do the test and where to send the blood, hopefully.
the website is www.latimes.com/news/state/updates/lat_autism000504.htm
Trina

Re: [NIDS] EEG's while awake to record what happens during stims/tics

2007-09-27 07:27:14

Dear Trina,
I would encourage you to have a 24 hour EEG. My son also slept soundly. He
had seizures during sleep and when we treated them he had great improvement.
He still is very autistic but it seems to have made it so much easier for
him to focus and learn.
Nancy

EEG's while awake to record what happens during stims/tics

2007-09-27 00:33:41

Hi everyone,
My son is 6 1/2 and is by far one of the most stimmy/ticcy kids I have ever
seen. It seems that the older he gets the worse it gets. He most often
displays a facial grimace, while simultaneously stiffening his arms, holding his
breath, and twiddling his fingers. He does this in response to anything
visually stimulating (videos, computer, pictures, basketball play, baseball
play, etc).
He has only had an EEG, the 30 minute kind, when he was 2 and he was asleep. He
sleeps like a log at night, and I really do not suspect he is having anything
weird going on during this time. I am just wondering what on earth his brain
waves look like DURING his facial and body contorting while he is awake.
I am considering having a 6-8 hr, or maybe the whole 24 hr, EEG done to see what
exactly will show up. Has anyone already explored this avenue with their child?
Do the brain waves look different during these type of stims/tics??
Will I be wasting my time??
Thanks,
Trina

[NIDS] Valtrex and LETHARGY and loss of focus: update

2007-09-26 17:32:39

Hi all and many thanks for all who responded. I did contact Dr. G's
office and he would like us to stay the course which we will.
I am not sure it is a die off reaction from the antifungal as he had
been on that for about a month. Dr.G's office did suggest that the
valtrex may be kicking up a virus which seems consistent with his
symptoms. I was just wondering if any of you experienced folks had
seem similar manifestations in your children.
thanks again!
ann

Sending info!!

2007-09-26 09:45:11

Just sending info!! Lois -- SAVE THE DATE --
The Autism Research Institute presents the:
6th Annual Defeat Autism Now! (DAN!) Conference
September 15-17, 2000, San Diego, CA
(September 15 will be an all-day training session
on how to implement the DAN! Protocol for licensed
health-care practitioners.)
Town and Country Resort and Convention Center
TOPICS INCLUDE:
Secretin*intravenous gamma globulin*transfer factor*vitamins,
minerals, fatty acids and other supplements*detoxification from heavy
metals and other pollutants*candida*casein- and gluten-free
diets*vaccines & more!
SPEAKERS INCLUDE:
Sidney Baker, Kenneth Bock, Stephanie Cave, Jane El-Dahr,
Sudhir Gupta, Lisa Lewis, Woody McGinnis, Mary Megson,
Jon Pangborn, Candace Pert, Karl Reichelt, Bernard Rimland,
Karyn Seroussi, Paul Shattock, John Stoll, Andrew Wakefield
REGISTRATION FORM AND FURTHER INFORMATION WILL BE POSTED
ON THE INTERNET ON JUNE 1, 2000

who is that masked e-mail?

2007-09-26 08:32:42

Can anyone identify the mailer with the so-called e-mail address
"sentto-128940.37"?? It is always sent to every single special needs group
with no subject listed. ** Please identify yourself.**

Re: [NIDS] new member

2007-09-26 01:19:38

Welcome Eileen,
This is a great list for parental support and info! Do you know about Dr.
Michael Goldberg?
Tina Hendrix

Re: [NIDS] Valtrex and LETHARGY and loss of focus

2007-09-25 22:46:30

Ann,
Are you washing the purple dye off the pills? It is easily rinsed
off, and seems to cause problems with some kids. I suggest trying
this for a few days and see if there is any improvement.
Sandy

Valtrex and LETHARGY and loss of focus

2007-09-25 12:12:08

Hi! I'm pretty new to the list and have only been seeing Dr. G for 2 months
now. Our son has a severe yeast issue and was placed on long term antibiotics
(ery ped), 50 mg of Nizarol, and we just started valtrex a few days ago. I
expected the addition of valtrex to cause some
hyperactivity. What I have found is extreme lethargy. This includes 4 hour
naps and sleeping 11 hours through the night. This is a child who, on a good
day would only sleep 8 hours per day in total. While the sleepiness concerns
me, I am more concerned by the sudden and complete
loss of focus and almost overnight cessation of eye contact. Anyone else
experienced this? This has me extremely concerned as we had worked so hard to
have what would be considered "almost normal" eye contact. Thanks for any info!
ann

Re: [NIDS] Fwd: [CO-CURE] RES: Intestinal protein linked to autoimmune disorders

2007-09-25 03:58:14

Katherine,
I got the message of a 'forwarded message', but no message.
Page

Conference notes now available!

2007-09-24 21:35:03

Conference notes from the May, 1999 Orlando Biological Treatments Conference
are now available.
Lauren Underwood, Ph.D. has summarized the 2 day conference into a 27 page
boolket.
Included in the booklet are summaries for all 8 speakers including:
Dr. Alan Friedman, Dr. Jeff Bradstreet, and Dr. Andrew Wakefield.
The notes are very informative, especially if you were not able to attend the
conference (and even if you went, but were a little overwhelmed).
Topics include:
An easy to read explanation of Dr. Friedman's current research.
An explanation of Dr. Wakefield's current research.
Problems regarding yeast and bacteria overgrowth.
Secretin.
An explanation of autoimmunity, including an easy to read explanation
regarding the immune system
A comprehensive list of recommending testing, including names and phone
numbers of labs (and specific test numbers).
Contact The Great Plains Laboratory to order the conference notes for $5.95
plus $2
shipping and handling (913-341-8949)

MED QUESTION: wellbutrin and ginko biloba- contraindicated???

2007-09-24 15:26:23

Hello everyone,
I give my son ginko biloba everyday as a suppelment. I have for a long time.
He also gets various other meds, prescription and OTC. Yesterday, Dr. Goldberg
started him on Wellbutrin to hopefully increase his ability to attend a focus.
I have read here somewhere, but I must have deleted it, that Wellbutrin and
ginko are contraindicated and do not mix. Can anyone refresh my memory here, or
shed some light on the subject?? I seem to recall it had something to do with
the heart, and causing abnormal EKG rhythms.
This seems important.
Thanks,
Trina

re: intestinal protein linked to autoimmune disorders/what allows gluten to leak into the bloodstream?

2007-09-24 10:07:20

Subject: [CO-CURE] RES: Intestinal protein linked to
autoimmune disorders
To: CO-CURE@...
Pulled from the Reuters News Wire. Many CFS patients
report gastro
intestinal symptoms such as leaky gut, Irritable Bowel
Syndrome.
Ted Nilson, NJCFSA
Intestinal protein linked to autoimmune disorders
NEW YORK, May 10 (Reuters Health) - The small
intestine contains
billions
of cells, which are packed tightly together to keep
bacteria, viruses,
and
other toxins out of the body's tissues. New research
findings may have
identified the protein that regulates this protective
barrier, holding
promise for a better understanding of several
diseases.
"We are at the threshold of exciting discoveries in
this field," stated
lead researcher Dr. Alessio Fasano of the University
of Maryland School
of
Medicine in Baltimore.
In study findings published in The Lancet, Fasano and
colleagues report
that a protein called zonulin appears to be
responsible for maintaining
the
protective barrier in the small intestine, and that
high levels of this
protein are associated with disruptions in the barrier
that allow
foreign
substances into the body's tissues.
When the researchers purified zonulin from human
tissue and tested it
on
intestinal tissue from monkeys, the protein increased
the tissue's
permeability, allowing molecules of insulin to pass
through the cell
barrier. Insulin is not normally absorbed when taken
by mouth.
Then the investigators turned their attention to
celiac disease, a
genetic
disorder in which people are unable to eat foods that
contain gluten, a
protein found in wheat and other grains. If they do,
the gluten causes
a
variety of gastrointestinal problems.
Celiac disease is an autoimmune disorder, meaning that
the immune
system
overreacts to a foreign substance, and begins to
attack normal cells.
In
celiac disease, the trigger is the protein gluten. If
patients avoid
gluten-containing foods, they have no symptoms.
"With celiac disease, we could never understand how a
big protein like
gluten was getting through to the immune system,"
Fasano explained in a
statement. "Now we have the answer." His team looked
at intestinal
tissue
from seven patients with celiac disease and six
healthy people.
Patients
with the disease had higher levels of zonulin and
zonulin antibodies.
When
the celiac disease patients followed a gluten-free
diet, their antibody
levels returned to normal.
The researchers believe that zonulin makes the space
between cells
larger,
allowing gluten and other substances to pass through.
"Once these
allergens
get into the immune system, they are attacked by the
antibodies,"
Fasano
noted.
Other research with diabetic rats supports these
findings, Fasano
added. In
these animals, the intestinal lining becomes more
permeable before the
autoimmune process begins, suggesting that zonulin may
be responsible
for
the onset of this disease as well.
Because people with untreated celiac disease are at
increased risk for
other autoimmune disorders such as diabetes,
connective tissue
diseases,
some types of thyroid disease and hepatitis, Fasano
and colleagues
believe
they may have identified an important process.
"I believe that zonulin plays a critical role in the
modulation of our
immune system. For some reason, the zonulin levels go
out of whack, and
that leads to autoimmune disease," Fasano said. He
noted, however, that
more research is needed to confirm these findings.
SOURCE: The Lancet 2000;355:1518-1519.
Copyright © 2000 Reuters Limited.

Fwd: [CO-CURE] RES: Intestinal protein linked to autoimmune disorders

2007-09-24 06:44:06

Note: forwarded message attached.

Re: [NIDS] Toxins and Child Development/Autism/LD/ADD

2007-09-24 06:14:37

Thank you Good info on how our environment interacts with genetics. Seems
to tie right in with what Dr. G. has been saying all along. I noticed they
even mention PANDA'S plus the whole spectrum of learning, developmental and
behavioral problems.
Cheryl
/

Re: [NIDS] Dr Mott and prednisone?

2007-09-23 18:34:24

We have had people on the NIDS list use Prednisone and there is no question
that it effects the immune system because it was designed to do that. The
problem with anything but short bursts of Prednisone, which is very helpful
in stopping asthma rebound attacks and other short term problems, is that the
side effects of long term use are well known and well documented particularly
for children. Dr. Goldberg's protocol achieves the same thing without the
same kind of risks. Steroids are not risk free drugs because everyone on long
term therapy will have side effects eventually. Kathy R

Toxins and Child Development/Autism/LD/ADD

2007-09-23 12:47:19

Toxins and Child Development/Autism/LD/ADD

I am......

2007-09-23 05:06:12

A very good autism friend of mine titled one of her posts "The STRONGEST
people in the world", I don't remember what we were posting about - but the
title really struck me - especially after reading posts from so many
discouraged mom's. So, this is my simple little way of letting all you
mom's of special little guys and gals know how strong you indeed are!!
---for those times when you don't feel so strong. ~Michelle
I am....
I am the little engine that did. When on my journey in life, my tracks led
me to a mountain - a diagnosis of Autism - I looked at it with defeat -
thinking there was no way I could climb over it. Then I pondered the
obstacle before me, and then I said to myself over and over, "I think I
can, I think I can...," then I slowly started climbing the mountain saying
to myself over and over, "I know I can, I know I can,...." and then I made
it over that ominous diagnosis of Autism and continued my journey. I am the
little engine that did.
I am more devoted than Noah's wife. I am cooped up in this "houseboat" for
365 days and 365 nights a year, constantly cleaning up after my "herd of
animals." And when the storms of isolation and monotony become most
unbearable, I do not jump ship. Instead I wait for the rainbow that is sure
to come.
I am Xena. Real life warrior goddess of Autism. With my steel plated
armor I can fight anyone who gets in the way of help for my child. I can
fight those in the public, health agencies, and government - who don't
believe there is an epidemic of autism or don't consider what might be
causing it - with words of truth. I can fight the stares and ignorance of
typpies - those without autism in their lives - and educate them as to why
my child is the way he is, and why he does the things he does. I can fight
the schools to have them properly educate my child. And I can fight denied
insurance claims to get coverage for my child. Yes, I am Xena - and I am
armed for battle...
I am Betsy Ross. I am part of History by my contribution to the awareness
quilt -- many pieces of fabric representing many states, stitched together,
that will collectively symbolize Freedom. Freedom from the lack of
information about Autism, Freedom from not knowing what causes Autism, and
Freedom from the lack of funding and research to treat, overcome, and live
with - Autism. Like Betsy's piece of fabric, my piece of fabric will
someday sit in a museum, for others to see my 12.5 x 12.5 inch memorial of a
battle well fought. Whether my child is "cured" in my lifetime does not
matter, in the end what will matter to me and to my child, is that I never
surrendered.
I am the Bionic Woman. I have X-Ray vision and can see through the mask of
autism on my child's face, and see the beauty in his soul and the
intelligence in his eyes --- when others can't. I have super-hearing and
can look at my child when he smiles at me, and hear his voice say, "I Love
You Mommy," --- when others can't. Yes, I am thankful to be Bionic.
I am Mary. A not so well known mother of an Autistic child who was brought
here to touch the souls of those around him, in a way that will forever
change them. And it started with me. By teaching me things I would never
have known, by bringing me friendships I never would have had, and by
opening my eyes as to what really matters in life. Things like keeping the
Faith, never losing Hope, and knowing a Love that that words cannot
express. Yes, I too am blessed by a special child, just like Mary.
I am Superwoman. I am able to leap over tall loads of laundry in a single
bound, and run faster than a speeding bullet, to chase my child as he dashes
out the front door and heads for the busy street. Oh yes, without a doubt,
I am Superwoman.
I am Moses. I am doing my part in leading other parents and society to a
land of more awareness, knowledge, and resources. Like Moses did, I too,
will sometimes meet with resistance from those who don't believe there is a
need to change things. And like Moses, God will give me the small
Miracles here and there, needed to accomplish my mission.
I am Stretch Armstrong - the mom that can be stretched beyond belief - and
still somehow remain normal. I can stretch limited funds to cover every
treatment and therapy that insurance won't. I can stretch my patience as I
explain my child's biomedical issues with yet another uneducated doctor. I
can stretch what time I have, and share it with my husband, my children, my
"autism" work, and still have some leftover to help others. And oh boy do
I have the stretch-marks to prove it!
I am Rosa Parks. I refuse to move or waver in what I believe is right for
autism, or what I believe caused it, or what helps treat it --simply
because my view is the minority, not the majority. I refuse to believe
"What can one mother do?" But instead, I will write, call, and rally to the
government, and do whatever it takes to bring equality for my child. Yes,
I am Rosa - on the bus to greater awareness.
I am Hercules. The Greek god known for strength and courage. The heavy
loads I must carry and the fears I must face would make others crumble to
the ground. The weight of Sorrow, Fear at uncertainty of the future,
Injustice at having no answers, and from Tears of despair, would alone
possibly be too much, --- even for Hercules. But then the Joy, Laughter,
Smiles, and Tears of pride, - at my child's accomplishments, - balance the
load to make it easy to bear.
I am touched by an Angel. An Angel because he is my window to the beauty
Heaven holds. An Angel who is often described as living in a world of his
own. And it's true. He lives in a world of innocence and purity. A world
without hatred or deceit. A world where everyone is beautiful and where
no-one is ugly. A world where there is always enough time. A world where
he goes to bed with no worries of tomorrow and wakes up with no regrets of
the past. Yes, I most certainly am touched by an Angel, and I sometimes
wish my world was a little more like his...
I am a mom of a special needs child, all the above, and so much more.
Somedays I will want to be none of the above - and just be a typical mom
with a typical child, doing typical things. On those days I will know it's
o.k. to be angry, and to cry, and to lean on my family, friends, and
listmates for support. Because after all, ---the most important thing I am,
... is human.
****
And on Mother's Day, and every other day I need to, I will read this as a
reminder, of just who it is, ~ I am..
By Michelle Guppy

For Mother's Day - A collective card from various mom's - for all mom's

2007-09-22 22:01:23

This is some of what was sent to me for our collective Mother's Day tribute
--to us!!! I did not include the longer ones, but all of them will be
submitted! At the very end is a bit of information about the Chicken Soup
project I am working on - I have been corresponding with the lady in charge
of submissions and requests for book proposals - I am not promising anything
- nor are they - but they are interested as there is NOT one in the process
for "Special Needs Souls" if I submit the propasal package good enough, and
submit a possible layout - then we can get this done - but I need help -
please read the very last post for details....
So, here it is - I am so glad I had the priviledge of doing this for all you
mom's!! Happy Mother's Day to all mom's of special needs children!!!! And
you contributors - do you realize how hard it is to type through tears???
It is your fault for any typo's!!!! lol lol lol....
***
I would like to start off with Erma Bombeck - these last words she wrote
before her death really depicts a mother to me!
"My deeds will be measured not by my youthful appearance, but by the concern
lines on my forehead, the laugh lines around my mouth, and the chins from
seeing what can be done for those smaller than me or who have fallen."
***
All my life I have been insecure - but five years after having my beautiful
Jessica I have become the kind of person I can be so proud of. Jessica has
taught me strength, endurance, unconditional love and laughter. At the end
of each day I am exhausted but I know in my heart that I have learned so
much
more that day, loved so much more that day and have helped someone else to
become the kind of person she can be proud of as well. - Dawn Mitten (mom
to Jes 4.5 HFA and Bobby 1yr old)
***
"Never despair of a child. The one you weep the most for at the mercy-seat
may fill your heart with the sweetest joys." T.L. Cutler
***
from Chrissie Kane..
Every mother is able to tell you when their child first said Mommy, but for
parents of children with autism the long wait for this moment makes it even
more special. I almost missed this moment in the life of my autistic son,
Alex. At 3 1/2, he could identify me from a picture, but never called me by
name. One day I was cleaning my house when I heard a voice behind me say,
"Mommy." I assumed this voice was my five year old, so responded, "what
sweetheart?" and kept on my cleaning mission. The voice did not respond, so
I continued on task. Again, "Mommy," I gave the same reply with no response
from the voice. After a few more times became frustrated with what I
thought was my 5 year old daughter. I finally turned to tell the voice to
stop calling me when to my absolute shock and joy my autistic son was
standing there calling me mommy. I stopped what I was doing, hugged him,
and started to weep for joy. The one word I waited so long to hear and I
almost told him to stop. My Alex, unable to recognize happy tears, said,
"Are you O.K.?" My response, "yes Honey, I've never been so O.K. before."
Every typical mother hears their children call them by name, I'll never take
it for granted again.
***
Go On!
Go On, Focus your eyes, upon the goal, upon the prize. Fight on, never
quit,
push ahead, You'll win it. Press on, Don't give in, Do not resign, run to
win, Keep on, Don't show slow your pace, Stay the course, Finish the race.
Go on, Keep on track, Keep the faith, Don't look back! Perry Tanksley.
***
"Mother means selfless devotion, limitless sacrifice, and love that passes
understanding." unknown
***
This poem is for my son Cameron. He has Williams Syndrome and Autism. He is
sunshine and he shows me daily what life and love are all about....
Mommy, Just Breathe
Hurry son, you'll be late for school,
I hear myself say again,
As he reaches his fingers to touch the rose petals,
still covered from morning rain.
He runs his fingers along the bricks
as I bustle him along.
He stops and listens as birds fly above
singing their good morning song.
I'm rushing to bribe him into the car
so that we can be ontime.
He stops to watch a tiny spider
and sings the appropriate rhyme.
The 'itsy bitsy spider' can wait.
we're in a hurry again.
He stops and gives me 'Butterfly kisses'.
Rushing is not in his plan.
He bends his knees and reaches down
to touch the blades of grass.
I slow my morning hastiness
and realize I'm moving too fast.
He looks at me with big hazel eyes
and smiles an innnocent smile.
As I reach down and touch the greass,
time stands still for a while.
I truly stop and take a deep breath
and smell the morning air.
I watch him absorb the whole world
as I stroke his soft brown hair.
He is here on this earth
for special reasons indeed.
For this very morning, he spoke not a word,
but his actions said, "Mommy, just breathe."
by Ronda Spataro - RAVENf29@...
***
When I look at my son Jake, I know all the hard times are worth it, and this
has made my family stronger. I never take a single milestone for granted.
I cherish every tiny thing." Britney Szpondowski
***
After having fought for, advocated for, and spoken for my son during the
past 3 years of his ABA program, these lyrics from a song sung by Celine
Dion will make me weep time and time again:
Because you Loved me - by Celine Dion
You're the one who helped me up, never let me fall,
You're the one who saw me through it all,
You were my strength when I was weak,
You were my voice when I couldn't speak,
You were my eyes when I couldn't see,
You saw the best there was in me..
Lifted me up when I couldn't reach,
You gave me faith 'cause you believed,
I'm everything I am, because you loved me.
You gave me wings and made me fly,
You touched my hand, I could touch the sky,
I lost my faith, you gave it back to me,
You said no star was out of reach.
You stood by me and I stood tall,
I had your love, I had it all.
I'm greateful for each day you gave me.
Maybe I don't know that much,
But I know this much is true,
I was blessed because I was "Loved by You"....
This is for all the moms who have gone through so much because they've loved
beyond words, fought for, and protected, their special needs children. God
Bless all of you!!
from TJCMJC@...
***
My favorite reminder of my son Doug, who is now 13, is when he was around 3.
Doug is non-verbal most of the time, but every now and then words just come
out. The best was when I was washing dishes one afternoon and Doug tugged
on my shorts and said, "Hey you." That was the first time he had ever
acknowledged me. It brought tears to my eyes."
Debbie - mom of Doug
***
I would have to say that there are many things our son has brought into
my life. Appreciation and undying LOVE for accomplishments, effort,
dedication, strength and trust. Just a week ago, my son has almost
potty trained himself and had small conversations with us...all of the
qualities above...his effort, his - the therapists dedication, trust &
strength helped him do that! A child depends on us desperately to
guide, love and teach them. What greater honor in life could God have
given us? In my opinion...NONE! Everytime I see his BIG brown eyes,
dimples, and feel him rub his cheeks against mine when he is hugging me
reminds me that yes, at first I couldn't except his autism, but now I am
ready to beat it TEN FOLD!!
LOVINGLY,
Rose
Michael's mom
***
"A mother.....fills a place so great that there isn't an angel in heaven who
wouldn't be glad to give a bushel of diamonds to come down here and take her
place." Billy Sunday
***
The Mountain - submitted from Donna Carver and written by Jim Stovall
There were two warring tribes in the Andes, one that lived in the lowlands
and the other high in the Mountains. The mountain people invaded the
lowlanders one day, as part of their plundering of the people, they
kidnapped a baby of one of the lowlander families and took the infant with
them back up into the mountains.
The lowlanders didn't know how to climb the mountain. They didn't know any
of the trails that the mountain people used, and they didn't know where to
find the mountain people of how to track them in the steep terrain. Even
so, they sent out their best party of fighting men to climb the mountain and
bring the baby home. After several days of effort, they had only climbed
several hundred feet.
Feeling hopeless and helpless, the lowlander men decided that the cause was
lost, and they prepared to return to their village below.
As they were packing their gear for the descent, they saw the baby's mother
walking toward them. They realized that she was coming DOWN the mountain
that they hadn't figured out how to climb!
And then they saw that she had the baby strapped to her back. HOW COULD
THAT BE??
One man greeted her and said, "WE couldn't climb this mountain. How did you
do this when we, the strongest men and most able men in the village couldn't
do it?"
She shrugged her shoulders and said, "It wasn't your baby."
Autism can be a formidable mountain, but it's NOT a mountain that CAN'T be
climbed!!
***
My 13 year old son with PDD is somewhat verbal...One day last year, my son
was in the bathroom, laughing and looking in the mirror, as he loves to do.
When I came in to check on him, he guided me towards the mirror. With a big
smile, he threw his arms around my neck and positioned our faces until we
were cheek to cheek. This astonished mom was moved to tears when, as we
looked at ourselves hugging in the mirror, he uttered just one
word--"Love."
gail
grieger@...
***
"There is only one beautiful child in the world, and every mother has it."
unknown
***
I was sitting on the floor in the doorway watching my then 4 year old
autistic son play. I had just sat down and leaned against the door when JD
came back into the house, ran to the bed and got a pillow and came and put
it behind my back! I got tears in my eyes, I had no idea he even realized
he could do something for me! The sweetness of his act still brings tears!
Wendie Bloomquist
***
No Ordinary Child
The child on the busy street was not mine,
but his face was puckered with crying
and tears streaked his dirty cheeks.
He sat on the sidewalk
hugging his skinned knees,
People passed him by
for he was not their child.
But something tugged at me, and I turned back.
I knelt beside him,
wiped his tears with my handkerchief.
Then taking his hands we walked together
to find his mother.
She came running, searching through the streets
and when she saw us
she ran and gathered her son to her,
holding him tightly in her arms.
She turned to me and touched me gently
her eyes filled with gratitude.
Later that day the school called,
my little girl had wandered away.
She does that sometimes
for she is no ordinary child.
Unaware of boundaries or danger
she chases rainbows and runs
to catch the golden specks of dust
that reflect the sunlight.
She dances in her world and
bumps against mine.
We all searched for her, running along the streets
calling her name.
As I ran, I saw in the distance, the familiar
face of a woman and her son,
holding my little girls hand.
It was the same boy with the tearstained face
and skinned knees.
I ran to them, taking my daughter and holding her close to me.
I looked up into the woman's eyes
and touched her arm, I was filled with gratitude.
For this was my child she had found.
Each child is yours,
each child is mine.
I will love your child
you will cherish mine.
If your child is crying
I will wipe his tears,
If my child is lost
you will hold her near.
Each child is yours
each child is mine.
Put your hand in their's
put your hand in mine.
for all children, to who we owe our love and devotion.
c. Sally Meyer. 1999.
***
"When I come to the end of my rope, God is there to take over." unknown
***
We recently had Jonathan's 5th birthday party. This year we had about 12
kids. We did the whole routine of singing and I said to Jonathan, "Make a
wish and blow out your candles." He did it. I asked, "What did you wish
for?" He put his little arms around my neck and said, "I wished for you
mom!" Every mom there had tears.
Carolyn - mom to Jonathan 5, with Autism.
***
My 7year old did not learn to talk until he was 6years old. I was so eager
to hear him talk that I never thought I would have to say" Please stop
talking". I year later my once silent child started to tattle on his
brothers. Now he bosses his brothers all day long. I find myself saying
"David stop getting your brothers in trouble". He still does'nt know how to
have a conversation but he sure knows how to get is point across. LISA M
***
"A mother understands what a child does not say." unknown
***
A Child's Angel
Once upon a time there was a child ready to be born. One day he asked
God, "They tell me you are sending me to earth tomorrow, but how am I going
to live there being so small and helpless?"
God answered, "Among the many angels, I chose one for you. She will be
waiting for you and will take care of you."
"But tell me, here in Heaven, I don't do anything else but sing and smile...
that's enough for me to be happy."
"Your angel will sing for you and will also smile for you every day. You
will feel your angel's love and be happy."
"How am I going to be able to understand when people talk to me, if I don't
know the language that men talk?"
"Your angel will tell you the most beautiful and sweet words you will ever
hear, and with much patience and care, your angel will teach you how to
speak."
"And what am I going to do when I want to talk to you?"
"Your angel will place your hands together and will teach you how to pray."
"I've heard that on earth there are bad men. Who will protect me?"
"Your angel will defend you even if it means risking its life."
"But I will always be sad because I will not see you anymore."
"Your angel will always talk to you about me and will teach you the way for
you to come back to me, even though I will always be next to you."
At that moment there was much peace in Heaven, but voices from earth could
already be heard, and the child, in a hurry, asked softly, "Oh God, if I am
about to leave now, please tell me my angel's name."
"Your angel's name is of no importance. You will call your angel, Mommy."
Unknown Author
***
"A mother is the only person on earth who can divide her love among all her
children and each child still have all her love." unknown
***
Poem by Kathie Harrington author of:
"For Parents and Professional
Autism" and "For Parents and Professionals: Autism in Adolescents and
Adults."
I Never Told My Son He Couldn't Dance
I never told my son he couldn't dance.
I never thought he didn't have a chance.
I never told my son he might not read.
I only sought to plant the seed.
I never showed my son a star.
That, I felt, was way too far.
I never taught my son to fly,
But I gave him wings with which to try.
I never question's God's intent.
I only hoped my time well spent.
We never know what life will bring.
I only know that I must sing.
I never told my son he couldn't dance.
That is why he had a chance.
***
"Being a mother is learning about strengths you didn't know you had.... And
dealing with fears you didn't know existed. Being a mother is meaningful
and profound, and once it enters your life, leaves you never, ever the
same." Linda Wooten
***
When God Made Moms
By the time the Lord made mothers, he was into his sixth day of
working overtime. An Angel appeared and said "Why are you spending so
much time on this one"?
And the Lord answered and said, "Have you seen the spec sheet on
her? She has to be completely washable, but not plastic, have 200
movable parts, all replaceable, run on black coffee and leftovers, have
a lap that can hold three children at one time and that disappears when
she stands up, have a kiss that can cure anything from a scraped knee to
a broken heart, and have six pairs of hands."
The Angel was astounded at the requirements for this one. "Six
pairs of hands! No Way!" said the Angel.
The Lord replied, "Oh, it's not the hands that are the problem.
It's the three pairs of eyes that mothers must have!"
"And that's just on the standard model?" The Angel asked.
The Lord nodded in agreement, "Yep, one pair of eyes are to see through
the closed door as she asks her children what they are doing even though
she already knows. Another pair in the back of her head, are to see what
she needs to know even though no one thinks she can. And the third pair
are here in the front of her head. They are for looking at an errant
child and saying that she understands and loves him or her, without even
saying a single word."
The Angel tried to stop the Lord. "This is too much work for one
day. Wait until tomorrow to finish."
"But I can't!" The Lord protested, "I am so close to finishing this
creation that is so close to my own heart. She already heals herself
when she is sick AND can feed a family of six on a pound of hamburger
and can get a nine year old to stand in the shower."
The Angel moved closer and touched the woman, But you have made her
so soft, Lord.
"She is soft," the Lord agreed, but I have also made her tough. You
have no idea what she can endure or accomplish."
"Will she be able to think?", asked the Angel.
The Lord replied, "Not only will she be able to think, she will be
able to reason, and negotiate."
The Angel then noticed something and reached out and touched the
woman's cheek. "Oops, it looks like you have a leak with this model. I
told you that you were trying to put too much into this one.
"That's not a leak." The Lord objected. "That's a tear."
"What's the tear for? the Angel asked.
The Lord said, "The tear is her way of expressing her joy, her
sorrow, her disappointment, her pain, her loneliness, her grief, and
her pride."
The Angel was impressed. "You are a genius, Lord. You thought of
everything --- for mom's are truly amazing!"
***
"Children are the anchors that hold a mother to life." Sophocles
***
In My Garden
I wandered in my garden
one lovely summers day,
delighted with the beauty
of my flowers in full array.
The snapdragon so colorful
the poppy red and bold.
I touched the gentle petals
of the sunflowers' yellow gold.
I saw the gentle lily
her fragrance white and pure.
The marigold so hardy
and petunias galore.
And there along the garden wall
grew my lovely velvet rose.
Her beauty more magnificent
than the others I had chose
Her colors oh so delicate
her scent a pure delight.
I never saw the thorns she bore
too late . . . I felt the bite.
I jumped back for a moment
not understanding why,
a bloom so soft and lovely
would hurt and make me cry.
Yet, still her beauty captured me
and once again I tried,
but this time I was careful
not to touch the bitter side.
In the garden of the children
there are blossoms everywhere.
The delicate and lovely ones,
whose charms are often rare.
Some children will grow stronger
in the pleasant summer sun.
But some will fade and wither
turn themselves from everyone.
But the dearest of the children
are the ones who bear the thorn.
Those little ones who struggle
from the day that they are born.
They also bear the beauty
of the soft and gentle rose
their scent is oft most bittersweet
this is the child I chose.
And reaching out to touch him
I felt his sharpness there,
But when I touched him gently
I found the beauty rare.
In the garden of the children
where they grow so wild and free.
I chose the one who pierced my heart
and held him close to me.
c Sally Meyer
***
"A child is a gift whose worth cannot be measured except by the heart."
unknown
***
This is a poem I wrote about my son that I would like to share with you.
Sincerely,
Maxine Rosaler
Little Boy
Little boy who climbed into my bed in the middle of the night
Drooling on my pillow, making it wet
I reach down to check your diaper
Hoping it is dry
So I can lie here till morning with you in my arms.
This is my only happiness, to be here holding this little boy
Who has ruined my life
Eating up the minutes and the money with his illness
Causing me to abandon my career as an I-can't-remember-what.
How long has it been?
Almost eight years
Since you left the blood and mucus of my body
To go into this vast, bewildering place
Where everything has to be taught and learned and taught again.
I cup the top of your head with the palm of my hand
And caress the spot
Where the doctors, who don't know very much,
Say so much has gone wrong.
Your father in his sleep smiles and reaches out to hold your hand.
One by one he laces his fingers into yours.
Little finger, big finger, little finger, big finger
Little finger, big finger,
Until all ten are together as one.
Little Boy, even if there were nothing wrong with your brain
You could never know how much your mommy and daddy love you.
Poor Little Boy, who has to work so hard.
Here in our bed, you have nothing to learn.
Your way of being is a blessing I cannot understand and
I reflect on this as I drift back into a sleep
More peaceful than before.
***
"A mother's love perceives no impossibilities." Paddock
***
Before I was a Mom
Before I was a mom, I made and ate hot meals.
I had unstained clothing.
I had quiet conversations on the phone.
I slept late as I wanted and never worried about how late I got into bed.
I brushed my hair and my teeth everyday.
I cleaned my house each day.
I never tripped over toys or forgot words to lullabies.
I didnt' worry whether or not my plants were poisionous.
I never thought about immunizations.
I had never been puked on, pooped on, spit on, chewed on, peed on, or
pinched by tiny fingers.
I had complete control of my mind, my thoughts, and my body.
I slept all night.
I never held down a screaming child so that doctors could do tests or give
shots.
I never looked into teary eyes and cried.
I never got gloriously happy over a simple grin.
I never sat up late hours at night watching a baby sleep.
I never held a sleeping baby just because I didn't want to put it down.
I never felt my heart break into a million pieces when I couldn't fix an
illness, disease, or disorder.
I never knew that something so small could affect my life so much.
I never knew that I could love someone so much.
I never knew I would love being a mom.
I didn't know the feeling of having my heart outside my body.
I didn't know that something so small could make me feel so important.
I had never gotten up in the middle of the night every 10 minutes to make
sure all was O.K.
I had never known the warmth, the joy, the love, the heartache, the
wonderment, or the satisfaction of being a Mom.
I didn't know I was capable of feeling so much....before I was a mom.
submitted by Carolyn Gammicca
***
Sally Meyer <rainmom@...
Our Journey
Abide with me as I journey
take my hand, I cannot walk alone
Lean on me, when life gets weary
I will help you, etil weire grown.
Sometimes I wonit know your sorrow
you may not always see my tears.
If you stumble on your journey
I will lift you, calm your fears.
One day we will know the answerr
to that searching question.... Why?
Yet for now, weill walk together
hand in hand as time goes by.
Our pathway is not lined with roses
but there is magic in a smile.
This road we travel may be lonely
but there are rainbows once in a while.
Help me as I climb my mountain
in the valley I have grown,
put your weary hand in my hand
we cannot, dare not, walk alone
c. Sally Meyer
For Dhylan
***
"To think of what your child could have been, is a waste of the child he
is." Michelle Guppy
***
The Strength of a Woman
Women have strengths that amaze men. They carry children, they carry
hardships, they carry burdens but they hold happiness, love and joy. They
smile when they want to scream. They sing when they want to cry. They cry
when they are happy and laugh when they are nervous.
They fight for what they believe in. They stand up for injustice. They don't
take no for an answer when they believe there is a better solution. They go
without new shoes so their children can have them. They go to the doctor
with
a frightened friend. They love unconditionally. They cry when their children
excel and cheer when their friends get awards. They are happy when they hear
about a birth or a new marriage.
Their hearts break when a friend dies. They have sorrow at the loss of a
family member, yet they are strong when they think there is no strength
left.
They know that a hug and a kiss can heal a broken heart. Women come in all
sizes, in all colors and shapes. They'll drive, fly, walk, run or e-mail you
to show how much they care about you. The heart of a woman is what makes the
world spin! Women do more than just give birth. They bring joy and hope.They
give compassion and ideals. They give moral support to their family and
friends. Women have a lot to say and a lot to give.
***
"Mother love is the fuel that enables a normal human being to do the
impossible." Marion C. Garretty
***
Tried to write from my heart....this is how I feel about all of my
children....
"Through the Eyes of My Child" by jstewart 4/26/00
Whenever I am sad,
Whenever I am consumed,
Whenever I am overwhelmed...
I look at life through the eyes of my child.
Whenever I feel that I have had enough,
Whenever I feel that I am all alone,
Whenever I feel as if I am at the end of my rope,
I look at life through the eyes of my child.
He may not be able to do all that others can do,
He may not be able to speak as others do,
He may not be able to understand everything around him,
But looking through his eyes reminds me what life is all about.
My son is part of the Lord's beautiful rainbow of children.
His innocence speaks louder than any words.
His face is as beautiful as the glorious sunrise.
His existance defines my purpose.
As I look through the eyes of my child,
I remember all that is good in the world
I remember the happiness all around me
I remember the innocence and beauty in all
And I remember my purpose, the true meaning of my existance.
by: Jacob's Mom 4/26/00
(Jennifer Stewart) and Alexander's mom, too.
***
"No language can express the power and beauty and heroism of a mother's
love." Edwin H. Chapin
***
What comes to my mind is the pain I sometimes see in my
Wife Joanna's eyes , when we are in public with our twin
3 1/2 year old autistic sons Tyler and Mathew .Read on !
Is this the Boy I raised ?
Is this the Son I knew ?
Is this the one I've loved ?
Why can't they love him too ?
What has my son ever done to you ?
Has he caused you some pain ?
As I recall
All he has shown is Love .
Why can't you show him the same ?
Although these words are profound , they are not mine .
They where originally used by Mary as the body of Jesus
was lowered from the cross .You do not have to be of faith
to appreciate them .
I adore my wife . She is my inspiration in life .
Keith Frank
***
"I know God will not give me anything I can't handle. I just wish he didn't
trust me so much." Mother Teresa
***
I have a quote I keep on my bedside table, "You can never go back and give
your child that extra word of praise, that bedtime story, that loving hug,
so do it now." This was spoken by a mother whose child was killed at the
daycare center in the Oklahoma bombing.
When I think about how my son (now with autism) was 'typical' the first two
and a half years of his life, I wish I had done more then, while he could
appreciate it and understand more. I wish I'd read to him more, spent extra
time playing with him, praised him, hugged him, talked to him, before the
disability started. If I'd just known how little time he'd have as a
typical little boy, I'd have given everything to make those years wonderful
for him.
On the other hand, I'm glad for what we had, and still have. I don't regret
anything I did as a mother, I did my best, not knowing about the future. We
had wonderful times, and I have many fond memories and pictures of his early
years as a smiling, laughing, delighted little boy. We continue to have
special times together. I love to watch him enjoy the sounds and sight of a
flowing fountain, a stream, a passing train, or feeling the sand in his
sandbox, or freshly cut grass. I've learned appreciate such things more,
and I take pleasure in his happiness. His small accomplishments are very
special to me. I appreciate these more, knowing how much effort it was for
him.
For his 6th birthday tomorrow, I bought for each student in his special
eduation class, a 'gold' medal on a bright blue ribbon, like the ones given
out at the Olympic Games, with the word "Winner" on the medal. Each child
with autism is a winner. They struggle to adjust to our world, to our way of
life, to living with their disability. They are to be praised for who they
are, what they have done, and will do. Let's give our kids that extra word
of praise, that hug, that bedtime story, not knowing what tomorrow will
bring, and doing all we can for today.
Mary
***
"As a mother, my job is to take care of the possible and trust God with the
impossible." Ruth Bell Graham
All my life I have been insecure - but five years after having my beautiful
Jessica I have become the kind of person I can be so proud of. Jessica has
taught me strength, endurance, unconditional love and laughter. At the end
of each day I am exhausted but I know in my heart that I have learned so
much
more that day, loved so much more that day and have helped someone else to
become the kind of person she can be proud of as well. - Dawn Mitten (mom
to Jes 4.5 HFA and Bobby 1yr old)
***
I aways say that my son Devin has shown me a different colored rainbow!!!!
Rachel
***
Dear Mommy, don't you cry now and Daddy don't you weep
I want to whisper in your ear before I go to sleep.
I know that when I came here, I seemed perfect in every way
And you were so proud Daddy when you held me on that day.
Mommy, when you kissed me and wrapped me up so tight,
I felt as if I belonged here and everything was right.
When things got really scary and I began to slip away
I saw your face dear Mommy, as you knelt by me to pray.
And Daddy I always notice when you wipe away a tear
or watch the other little kids as they run and laugh and cheer.
I may not be able to tell you how much I love you so,
Or even show you how I feel and what I really know.
But when you hold me Mommy, at night when all is still
I hear your dear heart beating and I know that all is well.
And Daddy when you take me to the park, to run and play
I know that you still love me, though the words I cannot say.
So Daddy don't you cry now and Mommy don't you weep,
I want to tell you something before I go to sleep.
I may be sort of different and you may not understand
I know that I am not the child that you and Daddy planned.
But I love you both so very much and I know you love me too
And one day when this life is done, you will feel my love for you.
I know the future is unknown and you will always have to be
the ones who love and listen and take good care of me.
The road we walk is rough sometimes and you cry a lot of tears,
But one day we will turn and laugh as we look back o'er the years.
So Mommy don't you cry now and Daddy don't you weep
I want to say I LOVE YOU before I go to sleep.
The above wasn't written by me. I don't know who wrote it, but it is my
favorite verse.
It could even be by Sally Meyer......she writes such heartwarming verses and
poems.
Mary Stoner
***
"And just where's that damm fairy godmother when you need her?!" from
Michelle's coffee cup!
***
This is a Mother's Day Card I give to myself, one that cannot be bought in
any store, one with sentiments more powerful for me than any Hallmark has
yet to express, and one with pictures so vivid, that not even Kodak could
capture. I challenge you to think about and write down your card to
treasure, as you read mine. A card like this can not be torn or lost, nor
can the words ever fade away.
So you know the meaning of this to me - know that my child is Autistic,
severely developmentally delayed, non-verbal, and three years ago, screamed
at my touch.
On my swing..
It happened on a Saturday morning - I went out back to sit on my porch swing
my husband made for me. Just the perfect size to stretch out on sideways
with my legs extended across the swing as I lean against the arm. Brandon
was jumping on the trampoline, Matthew was "chalking" on the porch with a
friend, and my husband was inside.
Suddenly, Brandon got upset about something, climbed down off the trampoline
and came over to me on the swing. He climbed up on my lap and with my leg I
pushed off the ground to swing a little higher. He settled down. Then he
did something I will never forget as long as I live. He snuggled in closer
on my lap, and leaned up against me. He then grabbed my arms one at a time
and positioned them just the way he wanted them around his waist, and laid
his body against me sideways, so I could see his face. For a moment he was
still and peaceful. Just leaning back against his mommy and swinging. His
weight pushing against me made the arm of the swing dig into my back, but I
didn't care. And then time froze. It was just me and him on the swing on
a beautiful Saturday morning. Just enough breeze to feel gentle and cool
against your skin. I wanted to get up and go tell my husband to get the
camera, but then I knew that never again would we be positioned just so.
The house windows were open and I thought about screaming out loud for my
husband to get the camera - but knew that would ruin the tranquility of the
moment. So instead, we sat there on the swing -and I captured every moment
with my mind. The only sounds were of the breeze rustling the leaves in
the trees around us, and the birds chirping softly. I don't know if it was
my hair blowing against his face tickling him, or if it was the feel of the
breeze against his skin, that made him start to giggle, then laugh; or if
it was simply a funny thought he had. Whatever it was, as in the Kodak
commercials, this moment could not be bought, --- it was priceless. Just
feeling him totally against my body- on his own,- and seeing the sparkle in
his brown eyes as he looked up right at me while laughing - was
spellbinding. Perhaps it was only a total of three minutes that we were
swinging - but they were MY three minutes, all mine. And to me, that seemed
like a lifetime. Then someone started a mower in the yard next to
ours, and the spell was broken. Brandon got up, picked up a leaf from
the ground, and started flapping it by his face - and was off to find the
mower. And I got up to go see the picture Matthew and his friend had
drawn..
I can't think of any event or accomplishment from Brandon that could be
more significant to me than that moment, --except perhaps the day he
comes up to me and shares with me, just what it was he was laughing about as
he looked at me and smiled - on my swing.
In the movie, "Touched by an Angel" there was a show where the mother was to
have brain surgery and could possibly lose all previous memory. She asked
her daughter prior to surgery, "What memory would you have me hang on to, to
remember." The daughter responded with a special moment they had shared.
And after the surgery, the mother indeed lost all memory, and didn't realize
who the lady beside the bed was, but she remembered the special moment she
promised she would, and she shared it with that lady.
That is what "On my swing" is for me. A moment I will never forget, one
that I will remember when life gets tough. That moment on that day, knowing
that not so long ago he would never have come to me - gave me hope that
indeed, anything was possible..
On this Mother's Day, and others to come, I am sure to get cards my
children made for me with help, and cards my husband picked out for me. But
the card that will always mean the most, will be that moment in time
captured in my mind - and not by Kodak or Hallmark or any artist.
I challenge each of you to stop and think of your life moment, or moments,
and read them with your heart.
And if you are so inclined, write them down as well - as I am trying to
gather stories to submit for a "Chicken Soup for the special needs soul"
book. A book for parents of special needs children - a book that other
parents, especially mom's, can read and be touched, encouraged, and
inspired.
Please keep a copy, and send me a copy with your name and address so I may
compile them as a sample submission. Also, state that I have your
permission to use your submissions for the book proposal. If you have short
quotes or pharases that can be used as introductory lines for the chapters,
please submit those. If you have come across stories from other books that
would be appropriate for this one, submit that with the original author's
information for credit. Stories about any diability from anyone's
perspective.
Please help gather stories from "famous" or "celebrity" persons on the
subject as well. Please help contact women members of the big autism
organizations - A. Horne from ASA, Portia from CAN, and so on....
E-mail submissions to tguppy@... - no attachments are allowed. If you
would like to mail them, send to Michelle Guppy, 16210 Cypress Trace,
Cypress, TX 77429.
If we don't have enough for a whole book - I want to propose to them a small
gift book idea for special mom's on Mother's Day, like "A sip of Chicken
Soup for the special needs soul."
Thank you,
Michelle Guppy

Dr. Goldberg of NIDS Research Institute S

2007-09-22 18:23:16

Dr. Michael Goldberg, President of the NIDS Research Institute,
and who recently spoke to Congress on the the Autism Epidemic and it's
link to the Immune System, will be speaking in Mission Viejo on
Wednesday, May 10th. Meet with other parents for networking at 6:30,
the talk begins at 7:15.
The meeting will take place at Shepherd of the Hills Church in
Mission
Viejo. Take I-5 to the LaPaz exit, go east on LaPaz to Muirlands.
Left on Muirlands, the church is on the right (across from the
Albertsons Center).
Please email me privately if you need further information -
sandy@...
Thanks,
Sandy

Re: [NIDS] Kutapressin - ??

2007-09-22 14:52:34

Hi Yvonne!
Well, each kid responds differently, I guess. Mary's benefits became
apparent after a month or so. Her chronic sinus and ear infections stopped,
she awoke more rested, and didn't catch as much of the bugs going around, and
was able to recover from them better. There were some behavioral and
cognitive changes as well. but nothing miraculous; just another peice in the
treatment puzzle.
Its so hard with kids like ours. Some things help a little, but no huge
differences. the combination of the different aspects of the protocol for
Mary, though, have definately made her a healthier and more with it kid.
She's so happy and so out of pain--that's the incredible part.
Anyway, a special prayer for her, and for you and all of your patience and
love!
Tina Hendrix
In a message dated 5/9/00 6:01:10 PM Pacific Daylight Time, nelsoneyes@...
writes:
<< We've been giving our daughter Kutapressin injections for about 10 days
now.
How long does it take to see results, if there are going to be any?
Everything we've tried so far has really yielded minimum results - I was
hoping this would be the one :o/
Yvonne

Kutapressin - ??

2007-09-22 07:40:09

We've been giving our daughter Kutapressin injections for about 10 days now.
How long does it take to see results, if there are going to be any?
Everything we've tried so far has really yielded minimum results - I was
hoping this would be the one :o/
Yvonne

HBOT

2007-09-22 07:31:18

kb
I was interested in HBOT a few months back and asked Dr. Golberg about it;
he felt that it would not significantly help bring more oxygen to the brain
Kate

Dr Mott and prednisone?

2007-09-21 19:06:35

Hi all,
Doe's anyone know Dr Mott?? And has anyone used Prednisone with their
child? And if they did the results? Thanks a lot!! Lois (JJsmom)

re: HBOT

2007-09-21 19:06:03

Has anyone used hyperbaric oxygen with kids on the
autism spectrum or with general developmental issues?
I would be interested in hearing from anyone who might
have an opinion or experience in this area.
kb

"This is for My Mommy. . ."

2007-09-21 11:47:55

I Love you Mommy
Hello, my name is Brandon - I am 6 years old and
this is for my mommy. When I was not very old my
mommy would hug me a lot and I did not like it,
and sometimes I would cry, but she would still
hug me. When I would get hurt she would kiss my
boo-boos, and I did not like that either, but
she kept doing it. I did not understand why she
would do this. After a really long time and lots
of hugs, I started to like them. She just kept
hugging me. I am older now, and still cannot do
the things other kids that are smaller than me can
do. My mommy works lots with me every day trying
to help me learn to drink from a cup, eat with a
fork (a spoon is too hard), put on my clothes and
other things I need to do. I am different than
most kids - but my mommy does not care. She talks
to me all day, and prays for me at night. On rare
occasions, I get really close to her, and give her
a hug. Im still learning to feed myself and I
make a lot of messes that my mommy has to clean up.
She hugs me when Im upset, then I feel OK again.
My mommy has even gone to Washington to try to get
help for me. I would like to do one thing for her
though. I have been trying for a really long time
but I cant seem to do it. You see I cant talk...
and I would like to say I LOVE YOU MOMMY real loud
but I cant. Maybe she will see this letter and
know that I love her. There is just one more thing.
I cant read or write either, -- so my daddy is
looking into my eyes and writing down what I have
been trying to say for years. I LOVE YOU MOMMY.
Brandon Guppy
Brown-eyed 6 year old Autistic boy

SC parents?

2007-09-20 23:57:17

Hi there,
Just a quick question.....I know of one other parent besides me from
South Carolina that subscribes to this list, and just wanted to know if
there was anyone else? You can email me privately.
Kim
kimmiesc@...

Re: [NIDS] Emergency Action Alert From CAN / Wakefield on Spectrum / More on ...

2007-09-20 16:13:08

please remove me from this list.

Unsubscribe me

2007-09-20 12:56:24

Please unsubscribe me. Thank you.

Re: [NIDS] Unsubscribe me

2007-09-20 10:58:36

To unsubscribe , go to where you signed on (I think www.egroups.com) and
follow instructions there.

Aut Boy Returned to Fla Mom / The Eyes Have It/ Autism: Faulty Wir...

2007-09-20 06:17:10

Victoria,
FYI. Somehow I expect we have not heard the end of this.
Ricci
<< FEAT DAILY NEWSLETTER Sacramento, California http://www.feat.org
"Healing Autism: No Finer a Cause on the Planet"

Re: [NIDS] Doing It For Their Kids / S. Bay ABA / NJ Research Cent to Study M...

2007-09-20 00:09:55

how do i get off this mailing list.

Re: [NIDS] LEGAL QUESTION- is there anything illegal about this??

2007-09-19 14:23:09

Hi Trina,
The schools seem to be good at discussing things in advance. Of course
there is not usually proof that they were discussing things that they
shouldn't. This is what the law says and I'll give you a link to wrightslaw
where you can read more. Our school actually gave me written proof that
eligibility,etc. was discussed prior to our IEP. Might come in handy later
on, Haha.
Cheryl
. What is the role of the parents, including surrogate parents, in decisions
regarding the educational program of their children?
The parents of a child with a disability are expected to be equal
participants along with school personnel, in developing, reviewing, and
revising the IEP for their child. This is an active role in which the
parents (1) provide critical information regarding the strengths of their
child and express their concerns for enhancing the education of their child;
(2) participate in discussions about the child's need for special education
and related services and supplementary aids and services; and (3) join with
the other participants in deciding how the child will be involved and
progress in the general curriculum and participate in State and
district-wide assessments, and what services the agency will provide to the
child and in what setting.
As previously noted in the introduction to section II of this Appendix, Part
B specifically provides that parents of children with disabilities--
Have an opportunity to participate in meetings with respect to the
identification, evaluation, and educational placement of their child, and
the provision of FAPE to the child (including IEP meetings) (Secs.
300.501(b), 300.344(a)(1), and 300.517;
Be part of the groups that determine what additional data are needed as part
of an evaluation of their child (Sec. 300.533(a)(1)), and determine their
child's eligibility (Sec. 300.534(a)(1)) and educational placement (Sec.
300.501(c));
Have their concerns and the information that they provide regarding their
child considered in developing and reviewing their child's IEPs (Secs.
300.343(c)(iii) and 300.346(a)(1)(i) and (b)); and
http://www.wrightslaw.com/law/code_regs/IDEARegs_AppendixA.htm
http://www.wrightslaw.com/law/code_regs/Index_IDEA_Regs_990313.htm
tomorrow. I found out , unintentionally, that EVERYONE who is going to be
at our IEP meeting, EXCEPT US, had a "meeting" on Monday. What happened is,
my son's aide walked in on it by accident at the school. The teacher
panicked and told her not to tell me because she wasn't supposed to talk
about it. Of course, the aide did tell me.

More Human Race Info

2007-09-19 09:12:04

***The winner of the $100.00 gift certificate will be notified by 5/31/00.
For a list of participating pledge collector's totals, please contact me per
info below.
KEEP UP THE GREAT WORK!!!!!!
Please contact me with your questions, concerns, and ideas:
Tina Hendrix 3444 Anderson Dr.
(707)538-2193 Santa Rosa, CA 95409
(707)537-7629 fax
CureNIDS2000@...

LEGAL QUESTION- is there anything illegal about this??

2007-09-18 20:33:45

Hi everyone,
Here is a quick question. My son's IEP meeting is this Thursday, tomorrow. I
found out , unintentionally, that EVERYONE who is going to be at our IEP
meeting, EXCEPT US, had a "meeting" on Monday. What happened is, my son's aide
walked in on it by accident at the school. The teacher panicked and told her
not to tell me because she wasn't supposed to talk about it. Of course, the
aide did tell me.
They were not calling it an IEP meeting, but just a "team meeting".
Is this OK? They probably do this before all IEP meetings, but I was just not
aware.
Trina

Re: [NIDS] Political Action Alert! / Our Legacy to Grandchildren / RDAs For V...

2007-09-18 18:02:17

Mom, I thought you might find this interesting to share with other
"grandmothers" you know. Pretty scary...
Love, Aimee
In a message dated 4/13/00 1:47:02 AM Eastern Daylight Time, FEAT@...
writes:
Our Legacy to Grandchildren
[From the Boston Globe, April 6, 2000. Thanks to Elaine Gabovitch.]
http://www.boston.com/globe/living/at_home/
I was sitting at a coffee shop with friends, all of us grandmothers.
We were talking about our amazing grandkids, but contrary to what you might
expect, we weren't bragging. We were sharing serious concerns. I have
changed the names for reasons of privacy.
"I worry about Dory," said one of the women. "She's hyperactive, I
guess, but what disturbs me most is that she doesn't make much eye contact.
She'll look into your eyes for a second, but then she's off and you
feel as if she hasn't really connected."
"John's been diagnosed as dyslexic," said another. "He's having
trouble with reading and his teachers complain he doesn't pay attention,
which astonishes me because he was the most amazingly alert toddler. I can't
believe he's having trouble in school."
"Jody's so easily upset that it's difficult for me to be with her,"
said the third woman. "She's been like that from the moment she was born. As
an infant, she was a light sleeper and any noise would start her crying.
She's doesn't seem to have the ability to soothe herself."
"Is there anything like this in any of our backgrounds?" I asked. We
thought for a moment, turning siblings, aunts and uncles, parents and
grandparents over in our minds. No one in any of our families had suffered
from problems like these. Our kids certainly hadn't, and as far as we knew,
neither had our children's mates.
"Are the kids watching too much TV?" someone asked. One family had no
TV. The other two families limited the time their kids spent in front of the
set. We left, hugging one another with greater intensity than usual. Apart
from sympathy, we had nothing to offer one another and no idea why our
personal stories dovetailed.
Then I started researching the problem of whether something widespread
was happening to children these days. Then I decided not to write about what
I'd found. How could I scare grandparents with the news that Diane
Dumanoski, co-author of "Our Stolen Future: Are We Threatening Our
Fertility, Intelligence and Survival?" believes that the more than 70,000
untested chemicals introduced since World War II are linked to the increase
in behavioral disorders being seen in school children today? She cites
evidence that these poisons, at levels well below those generally recognized
as harmful, can cause permanent damage in utero, resulting in learning
disabilities, attention problems, and hyperactivity.
How could I upset pregnant women with the news that umbilical cord
blood has been tested and found to contain PCBs, pesticides and pthalates,
an ingredient in plastic?
How could I frighten young parents with the information that all
American children are now born with dioxin in their blood, and that Dutch
studies have shown dioxin exposure is linked to lower IQ, withdrawn and
depressed behavior, attention deficits, hyperactivity and an alteration of
the immune system?
At first I was too upset to write. Then I got mad. I am so sorry to
be writing this, but I'm only the messenger, not the perpetrator of this
assault upon our unborn children. These chemicals are invading children's
bodies because we refused to heed the old wives, whose stories had morals
like, "Better safe than sorry," and "Look before you leap." Instead we
listened to the profit-makers who found certain levels of risk acceptable
(to them, never to us). We handed our lives over to businessmen who flooded
the environment with poisons, then placed the burden of proof of harm upon
their innocent victims.
While Governor Cellucci drags his feet about uniform clean air
standards, and agribusiness creates genetically modified foods that are
actually pesticides, and mercury pours out of incinerator stacks, and the
EPA bows to corporate pressure, it is the grandmothers who have to watch
their grandchildren struggle with neurological deficits that could have been
avoided if we only valued life as much as we do money.
Who gave these people the right to poison mothers' bodies? Who gave
these people the licence to injure children's minds? Grandmothers, who have
mopped up plenty of spilled milk in their lives could teach these criminals
a lesson. We know these poisons will never go back in the bottle. That's why
we hug each other so tightly. And stifle a scream.
Linda Weltner "Ever So Humble" Column
Thursdays in the Boston Globe
* * *

Human Race Update

2007-09-18 17:50:30

HUMAN RACE UPDATE
A huge thanks to all of you wonderful supporters who are making this
fundraiser a success! We already have pledge forms and $$$$ coming in, and
plenty of time to continue collecting. You are making the reality of a cure
for Neuro Immune Diseases that much closer, and there's no time to
lose-saving this generation is our goal.
Remember, a lot of every little bit helps. No pledge or collection form
total is too small. Just keep asking for what is comfortable for the giver
(large donations are fine, too!)
When you are ready to submit your form & pledge $$$'s: Just exchange the
currency and coin for a personal check or money order made out to "The Human
Race", and mail the checks and donor list part of the form to the Volunteer
Center, 153 Stony Cir. #100, Santa Rosa, CA 95401. Remember, pledges must
arrive by Wed., May 24, 2000!
If you are participating in the Race: Do not bring $$$$ to the Race.
Photocopy the donor list portion of your pledge form for you to submit with
your pledges, either by mail or personal delivery to the address above. Turn
your original Human Race form in to registration on Race Day. (You can
contact me to pick up your donation $$$ if you are in the West Sonoma Co.
Area).
We will have a booth at the Human Race, sponsored by Town and Country
Automotive, Santa Rosa, CA, with lots of free refreshments and goodies for
our walkers and runners, as well as NIDS info. Please look for us and stop
by. As well, donations of food and drink will be gladly accepted to keep our
booth stocked!
If you'd like to walk as a group, we will meet at the starting point between
7:45 and 8:00am (Runners as well, we'd like to cheer you as you take off) and
will be displaying our NIDS banner: White with black and green lettering.
If you'd rather relax and meet lots of people, we'll have chairs at the booth
for you to hang out and share your info with visitors.
KEEP UP THE GREAT WORK!!!!!!
Please contact me with your questions, concerns, and ideas:
Tina Hendrix
(707)538-2193
(707)537-7629 fax
CureNIDS2000@...

Re: [NIDS] Dr. Goldberg/NIDS in Charlotte Paper

2007-09-18 08:37:29

<A HREF="http://www.house.gov/reform/hearings/healthcare/00.06.04/index.htm"
Autism - Present Challenges, Future Needs - Why the Increased Rates?</A
Try this site---the transcripts from the congressional hearings---it has a
lot of good data about the increases
Kate

Dr. Goldberg/NIDS in Charlotte Paper

2007-09-18 06:41:18

This is a post from a memner of a different list.
There is a pretty good story in the Charlotte newspaper that is about a
little girl with vaccine induced autism. They call her autism "Neuro-Immune
Dysfuncion Syndrome". I thought this was interesting with the talk on the
list about using a different label for this type of induced autism.
The only thing that I didn't like about the story is that when it was
continued on the next page of the paper, the headline was "Parents Teach 3
Year Old to Overcome Rare Condition". I want to write an editorial to the
paper to let them know that this is not a "rare condition". Could some of
you guys send me some of the recent statistics on the overall increase in
autism, and also if there are any statistics on how many of the cases are
suspected to be vaccine induced?
Bringing Maria Back
Parents teach toddler to overcome autism symptoms
CHERRYVILLE -- Rob Gentile drops his head as he remembers when migraines
made his 2-year-old daughter bang her head on the floor as hard as she
could, again and again.
He remembers how his beautiful daughter, Maria, forgot how to walk, crawl
and even how to focus her eyes.
"It's hard to go there emotionally," he said.
Rob and Melanie Gentile have given up successful careers to coax their only
child back to the laughing, talking toddler she was before being struck by
something called neuro-immune dysfunction syndrome.
In little Maria's case, that's a complicated name for an acquired form of
autism that causes children who developed normally for the first 12 to 18
months to regress and withdraw - their potential hidden in a cloud of
debilitating symptoms.
But she developed normally at first, learning to say a few words and hold a
book by her first birthday. She wasn't walking yet, but doctors told her
parents not to worry.
By the time Maria was 2, she was walking, talking, laughing, playing and
doing all the things toddlers do. But her last vaccination for measles,
mumps and rubella marked the beginning of a rapid downward spiral in Maria's
health and mental abilities. Some doctors believe that the vaccination can
lead to autism in children with weakened immune systems.
Maria's doctors and parents don't know whether that's what caused her
problems, but they do know that little by little, she withdrew from the
world until her parents didn't recognize her.
"The kid was like a zombie," Rob, 40, said. "Her eyes used to be dilated
constantly like a wild animal's."
The Gentiles, who lived in Nashville, Tenn., were frantic. The search for
answers consumed their lives. They quit their jobs: Rob had been a sales
manager for a national steel company; Melanie was a pharmacist.
They sold their home and moved to Cherryville to be near Melanie's family.
In one year, they spent more than $30,000 taking Maria to pediatricians and
specialists across the country.
The doctors told them Maria had gluten and lactose allergies and
hypoglycemia, among other things. A decreased blood flow to her brain caused
repetitive behaviors and problems with communication and motor skill, the
doctors said.
In December 1998, Rob and Melanie visited the Institute for the Achievement
of Human Potential in Philadelphia, where they learned how to reprogram
Maria's brain with repetitive, rehabilitative exercises.
The couple spent hundreds of hours showing Maria how to crawl again. They
took turns tying their arms and legs to Maria's with sheets and making her
crawl with them like a little puppet.
They darkened Maria's room and shined a small flashlight in her dilated
eyes, one at a time, until they started to focus again.
Rob transformed the back bedroom into a rehabilitation room for Maria and
helped her regain her sense of touch.
"I'd take a soft piece of velvet and rub it all over her body and say, `This
is soft, Maria,'" he said. "Very slowly, she started to awaken."
It was a string of chili-pepper lights pulled across the floor that
eventually coaxed Maria into crawling on her own. She wanted to touch those
lights.
In December, Dr. Michael Goldberg, a California specialist and president of
the NIDS Medical Advisory Board, met Maria. Her parents had made real
progress, but Maria still couldn't talk.
Goldberg said an MRI showed Maria had no brain damage, which means her
condition can be treated. He prescribed medications including an anti-fungal
medication to kill the yeast growing in Maria's belly. The yeast feeds a
virus believed to have caused many of Maria's autism-like symptoms, he said.
"She has become more alert, more aware of things," Goldberg said. "If I can
help lift this fog or cloud she's functioning under, then the therapists who
are working with her have a better chance of helping her."
On Monday Maria ran up and down a hallway in her home. She delighted in the
feel of plastic flowers and a palm tree made with fuzzy green felt. She
rubbed her fingers over beads glued to the wall in the shape of animals.
She giggled when her mother tickled her belly. She gave her father a rare
kiss.
Maria has started trying to talk again, too. Her speech is garbled, but her
parents understand it. And each time they hear her try, they gain more hope.
"She's more into stuff," said Melanie Gentile, who has gone back to work
part-time to help support the family. "She tries to get into the trash. She
tries to use her hands."
But she still needs help.
On May 28, the family will travel to California, one of only two places in
the country where Maria can spend time in a hyperbaric chamber that uses
pressure to increase the flow of oxygen to her organs. The treatments, which
are considered experimental and aren't covered by insurance, cost $200 each.
Doctors have told the Gentiles Maria will need 35 to 38 treatments.
Gaston County commissioner Greg Cox is sponsoring a benefit from 6 to 10
p.m. Saturday in Cherryville's Main Street mini-park to raise money for the
therapy.
"It's been worth everything that we've done just to help her feel better and
be happier," Melanie Gentile said. "You can tell when your daughter's in
pain and she's not in as much pain now."

Re: [NIDS] When do we just give up?

2007-09-17 20:42:12

Trina,
Have you done metabolic testing to rule out inborn errors of metabolism?
Ricci
<< Hi. I am having a frustrating last few weeks, not to mention it is IEP
season. My son has been Goldberg's patient for over 4 years. We have done,
and are still doing, it all. He is on the SSRI, antiviral, antifungal, and
even the Kutapressin. For all practical purposes, he is not any better. He
is definitely smarter, but still very autistic. We also do the ABA and that
is where he has gained all of his academic skill. BUT, his autistic symptoms
are not going away at all. On his last CARS test, he actually scored a 28,
which is off the autistic spectrum, but the psychologist said he just was too
autistic to remove the label.
At what point do we decide to stop the Kutapressin, the antifungals, etc.
??? We had a neuro spec scan last summer, which was indeed abnormal. Is
having another one the only way to find out if he is improving? His
behaviour and affect sure do not indicate he is any better.
I'm just frustrated, broke and discouraged.
Trina

Re: [NIDS] NIDS protocol vs. DAN protocol

2007-09-17 09:29:43

I'm sure that there are many others more qualified to answer this question
regarding the Dr. Goldberg's protocol vs. DAN protocol than I, but I will
take a stab. My son has been a patient (albeit somewhat inactively at this
point) of Dr. Sidney Baker for the past 2 years. Dr. Baker is the co-author
of the DAN protocol, and generally regarded as one of the leaders as far as
practioners. In January, my son became a patient of Dr. Goldberg's, and we
began following his protocol.
As I understand, the similarities are that both approaches are based on the
premis there is an immune dysfunction. They both believe that yeast can be
an opportunistic invader that should be treated. The both believe in
dietary intervention, although the DAN protocol holds much more strictly to
a GFCF diet, as well as looking at other food and / or environmental
sensitivities.
The DAN protocol lists 20 +/- tests (loosely ordered by "importance") which
should be preformed based on the findings of a consensus of physicians, and
based on those results, treatment should be tailored to the child. It
generally emphasizes gut-related issues, with an inclination towards natural
remedies (vitamins, supplements, diet intervention) when possible.
I do not feel as comfortable describing Dr. Goldberg's protocol since 90% of
the folks on this list understand it better than I. I don't think Dr.
Goldberg disagrees with many things identified for treatments by DAN
practioners, but I think he would make the distinction of saying that his
protocol is to cure the root problem, the immune dysfunction, rather than
attacking secondary illnesses. In our case, so far, that has meant dealing
with opportunistic viruses and fungal infections (again), and treatment with
SSRI's.
I believe that both physicians we are dealing with are very smart, dedicated
men who want the best for these children. I personally believe their are
many subsets of causes for the illnesses in our children, and I believe one
approach may work well for one subgroup, while another approach fits another
subgroup. You might want to read the DAN protocol as it describes in great
detail observations, theorie