Kiki/OT

[Guest guest]

Antoinette--

I am praying for you also--we've been down that hospitalization road more

times than I care to count. As the mom of an 8 year old with extreme

gastrointestinal disturbances and borderline/mild autism, I can tell you

that I regret the denial that I was in for years--years that I could have

spent getting services. wasn't diagnosed until he was four--the

behaviors were mild, the language disorder and gastrointestinal stuff were

severe--and we were ADAMENT that he did NOT have autism--and no one could

convince us otherwise. We were wrong. He is autistic--even if mildly so.

And so is Temple Grandin--even though she holds a Ph.D. I guess what I want

to say to you parents out there of littler kiddos with a diagnosis is GO

AFTER those therapies, services, etc. Scream your heads off for them if you

have to. By all means stick to the diet--we all know that it affects them

and their health and behavior. But other interventions--especially

non-invasive ones--that can't harm MAY do some good. We tried to follow the

" leave no stone unturned " philosophy, and he has benefitted from all of it.

I hope Kiki recovers quickly--it is heart-wrenching to go through watching

them suffer. It always was for me. By the way, Antoinette, did you ever

get an appointment with Dr. Kucera?

Please take care,

and family

[Guest guest]

said: As the mom of an 8 year old with extreme gastrointestinal

disturbances and borderline/mild autism, I can tell you

that I regret the denial that I was in for years......But other

interventions--especially non-invasive ones--that can't harm MAY do some

good...... I hope Kiki recovers quickly--it is heart-wrenching to go through

watching them suffer. It always was for me........did you ever get an

appointment with Dr. Kucera?

Dear , WE SURE CAN APPRECIATE the denial part of your experience and share

this with you. At first we thought that it was " just " celiac disease. AS she

became sicker it became obvious that she was different. No speech, stim

behaviors, " SHYNESS " that paralyzes her, deliriums that could last up to 45

minutes, night terrors, and more frightening things started to happen.

As we went down this road we have had many awakenings. We did see DAN!

Kucera M.D./all of us. It is now obvious since I was an undiagnosed celiac as a

child...not being recognized as having malabsorption until 37 that I to am on

the spectrum....so is my celiac hubby!....WE always thought that we where

different, but could never understand how....this is why we where attracted to

each other lol! Thanks to little Kiki, I too am embracing why I AM

DIFFERENT....I have always been high functioning, and even graduated with honors

with BA in Psych...but at a huge price and much work.

Like you said, Yes many on the spectrum can become famous, authors, doctors, out

right geniuses and even good parents. Look at the true " Rain Man " /Mr. Peek,

countless doctors, and even EINSTEIN! So many...some other adults even on this

list serve! It is good that we now know that this is not retardation! We pray

that SCD again will bring her back to the success that we where having. She has

had big set backs in many ASD areas with this. Doctor(s) thinks virus damaged

her intestines again. Maybe 3 month set back too, that Elaine warns in her

book, has complicated matters. Yet now we still have great hope, something that

we did not have prior to SCdiet.

Thanks for your concerns, it warms our heart to know that many care and are

praying with us,

Antoinette and (celiac/asd/add), parents to -5 (celiac/adhd), Kiki -2

(celiac/asd), Bubbles-1 (hyperekplexia) ALL SCD 2/06