Wow....alot has been going on with this site

[Guest guest]

Hi everyone,

I just wanted to respond to the hundreds of postings that have been going on

in the past week since I last checked my email!!! Wow...has there been alot

of controversy and hurt feelings and paranoia and sadness going on. There also

seems to be a level of tension that cannot possibly help any of us

" sleep-deprived and anxious " parents or our beloved kids.

If I were wise---perhaps I should just stop typing now or leave the list.

Yet, it was from this list that I found out about Dr. G and and began my

son's recovery. Truthfully, I do not know if the protocol has been and/or

will be the ONLY biomedical approach that will help him reach a " typical "

level of functioning. Yet, I must give credit and acknowledge that the first

origins of his improvements and my continued sanity stem from this site and Dr.

G.

I am going to add my two cents---regardless of who may be monitoring this

post. Let it be known that I believe my child is going to be one of the

success stories. He already has made incredible progress. Recently, we have

even delighted in feedback from those around us that look puzzled and say, " you

would never suspect that Aidan was " _____. "

While that thrills us, we are still very aware of the hard work ahead and the

" deficits " that still impair our little boy.

It would be a lie to say that I have not questioned Dr. G, the protocol or

" alternative " methods. There have been many tearful moments after our " monthly "

consults and sleepless nights. There has been both positive and the negative

feedback from current/former patients to sort through and make decisions

for our son. There have been emotional and confusing encounters with other

parents and kids who are looking " recovered " due to other methods (ie;

supplements, chelation, floortime, ABA, NAET, TOMATIS, etc.) So......I often

question

how can I choose a path to a " normal " life for my son when there are so many

paths being dangled in front of me---all with their own research and anecdotal

evidence to support their existance.

Therefore, it is because of this constant internal struggle that I think we

must continue to create an emotionally " safe " and respecful forum where people

can feel comfortable with asking hard and challenging questions about any

aspects of the protocol. Although each of our children's chemistries is

unique---sharing and giving tips on what has worked/not worked and the like

helps

us keep our faith on this long journey.

I would also humbly propose that what may contribute to the recent discourse

on the site is a power differential (real or imagined) that prevents parents

from being able to be honest with Dr. G. (other MDs) or themselves. There is

so much contradictory information out there and so much desperation---that

parents are just trying to find " the answer " in time for their own child rather

than trying to disrespect Dr. G. and his beliefs. Thus there is a climate of

" secretiveness " or dishonesty which could have a negative impact either way. We

could endanger our children (over supplementation) or prevent them from

having access to an " alternative " approach that just may work for them.

In my years as a clinical social worker at some of the top hospitals in the

country I came to understand medicine and MDs as follows:

1. Nice MDs are not always the best MDs.

2. Abrasive and curt MDs are not always the worst MDs.

3. No MD has all the answers for all of our kids---even some of the

" best " and brightest out there (whose own kids have ASD) don't all

have " cured " kids.

I also would guess that the following may be true with respect to some

people's feelings about Dr. G and his " intolerance " for alternative approaches

ie;

supplements, chelation, expensive testing, etc.

1. If you are a pioneer---fighting against established medical views,

busy trying to save children and fight myths, you don't always

have time for " niceties. "

2. If you have 100s of families on your waiting list---it is

reasonable to get frustrated with those who are questioning your

protocol.

3. If you are working with " imperfect " medications and unique

brain/gut systems it is going to be impossible to please

everyone---and get

all children to the level you want---quickly or ever.

Yet, if you are the parent of a child with autism---you want a " miracle "

delivered by a warm and fuzzy and knowledgeable MD who is on the cutting edge of

research and who believes in using every " reasonable " and safe path to help

your child. You want to be a respected " part " of your child's medical team and

told why certain approaches may or may not work---based on science and data.

You want to be made to feel passionate----not paranoid or antagonistic.

Let's face it, we all can feel isolated and paranoid about whether the path

we are taking is the right one. It reminds me of a book, " The Unbearable

Lightness of Being. " If I recall it correctly, the protagonist laments about

the

fact that if we could look down the two paths before us and see which was

" best " than it would make life so much more bearable. Yet, we cannot---we must

take a path (outcome unseen) and it is in this uncertainty that anxiety creeps

in

and paralyzes us. It is especially difficult when it is not our own

path---but that of our children that must be decided. For one day---we must

face them

and look into their eyes and be able to say, " I made the best choices that

were available at the time. "

When I hear about or meet a child that has been recovered via chelation or

supplements or holistic medicine or Floortime or RDI or ABA---I rejoice!!! I

am just so grateful that the paths available today are so much more likely to

end in recovery than 5 or 10 years ago. The fact that there are paths to

choose and that so many children are reaching " recovery " through various means

is

inspiring and keeps me hopeful.

Sweet Dreams and Peace of Mind to All,

Leahy