Re: SCIA website

[Guest guest]

Mr. ,

I am not new to the world of Autism...I've been advocating for my son on three

continents for over 8 years now but I am new to . We've seen close to three

years worth of clouds disappear in the last six months with the new Meds...and

none of them are controlled substances for a change.

I have seen your website; you've even quoted some information about research at

Southwestern Medical in Dallas that includes my son's data. I do question your

database though, particularly in the current technological world. Before I

expose certain information I need to be confident of the IT assurances provided

by the entity storing the information and utilizing the data. I see no

assurances on your site.

I found your site esthetically attractive but not friendly to parents who are

already overwhelmed with medical terminology. I can appreciate the time and

effort you've put into the site, I am quite capable of handling the terminology

and concepts in English, Japanese, French...and I imagine I could handle the

Spanish and Italian as well given the Latin roots, but I find it to be more of a

research site to support your unproven theory. This is not what I want from a

site meant to support my role as Mother and caregiver, instead it gives me your

biased paraphrasing of scientific and statical information that I can access

myself through a Google search.

As a parent, I want to know about not only the physiological aspects...but also

the social/emotional ones. I might have just missed it, or maybe you have not

addressed it yet but I see no references to the social learning that many of our

children need desperately. I see nothing about how to go about ensuring our

child's best interests are being taken into consideration through the use of

IEPs as in the case for Americans. I want to have an idea of what to expect at

both ends of my son's potential when he's 16. I want to know how to keep myself

as a parent sane and reasonably healthy. What side-effects can I possibly

expect from the various medications used in , etc.

This is not the first time I've seen friction between yourself and others here

and I found it rather ironic that just below a much need response to a question

I posted was a flurry of defensive and in my opinion unproductive postings. So

please, remember that pride goeth before a fall and this has thus far proven to

be a place where pride is hung up outside the door. Anyone can get into a

" pissing " contest and believe me, I'm competitive enough, educated enough, and

bull-headed enough to hang with the best of them. At the end of the day, does

that help my son? No, it makes others think, " Geez, don't wanna go anywhere

near that " . So please, remember that when you are addressing the very pool that

you are attempting to solicit. We've all spent all we could, even what we

couldn't and I find the idea of flaunting financial support for a cause very

distasteful and lacking in social grace--interestingly enough the most difficult

skill to achieve, and not only for our kids it seems.

Ultimately, I've given you my opinion and just like my armpits...you may think

it stinks... but it's mine and it's valid. You don't have to like it, but like

I teach my kids.... you are a citizen of a country that guarantees the freedom

to state an opinion with the blood of many courageous men and women so you have

to respect it. My opinion is based on my own experiences just as yours will be

and I too reserve the right to not like what you may say, but I do respect the

right for you to state it.

Just one of the mothers who stepped out of the rat-race to take care of her

Franco/American tadpoles--

Cam's Mom Robin (BSIS, ElEd Certified, BS Math SEd Certified, MEd English

Language Acquitision, CPA, MSA, but to my son...doctor, nurse, therapist, cook,

driver, playmate, story-teller, tutor and the hundreds of other things he thinks

I'm the greatest at doing)