Autism

[Guest guest]

If we truly want to get the word out then we have to do it! Please join your

local Chapter and if you don't have one in your area then let us know

and we will send you the information on how to start one. Together we can do

anything. Kathy Coalition-Northern New York Chapter

[Guest guest]

-

I needed to reply to your email. I, too, am extremely frustrated that

people, especially doctors, just aren't listening. I look back and know

that my son had food allergies from day 1, but the doctor never took my

complaints seriously. It took me almost 5 years to convince someone to

take this seriously. In February, my 1 year old started to slip just

like my son did. They didn't lose things overnight, just very gradually

slipped into " autistic " behaviors. She lost 6 words and 2 signs over the

next 3 months. Eye contact and social behaviors also decreased. Not

enough to get her an autism diagnosis, but I believe she was well on her

way to getting one. We saw Dr. Goldberg with her in July. Within a

month she had regained all but one word, both signs, and was back to her

flirtatious self with strangers in checkout lines. No more zoney

episodes and no more clinging to me. The only thing we did was put her

on Famvir and check her for food allergies and remove those foods that

she couldn't tolerate. It breaks my heart that no one did this for my

son and that as a result he has had to struggle so hard to get where he

is today. Our new pediatrician supports what we are doing since I am

telling him that it is making a tremendous difference. Still, he doesn't

believe in all this and smirks whenever we talk about it. He doesn't

believe my daughter was becoming autistic. I'm not sure there is

anything I can do to convince him, short of taking her off the meds and

seeing what he says in a couple of years (NOT an option). Thank God for

Dr. Goldberg. Now at least one of my children will be able to enjoy good

health and normal development and social relationships.

I was able to convince our old pediatrician (we just moved) what an

incredible difference Dr. Goldberg's protocol can make, but it took time

watching my son becoming healthier - nothing I said made much difference,

only the unrefutable blood test results. He is now referring patients to

Dr. Goldberg. I wish he would take the next step and actually learn the

protocol himself, but that may take more time. In the meantime, I plan

to keep him up to date on how my kids are doing. Hopefully this new

doctor will come around too, but in the meantime at least he is not

interferring. Reaching one person at a time with scientifically backed

results is the only place I can start right now. After I get my kids

healthy I'll tackle larger groups. Just keep trying to get the message

out - one voice can make a difference. I'm not sure my anger will ever

go away about all the lost years, but I'll try to channel it into making

a difference for someone else down the road (except in the middle of the

night when I lie awake wanting to do bodily harm to those doctors who

could have helped but didn't....). Hang in there - this is a great place

to vent!

On Sun, 30 Sep 2001 10:43:16 EDT whcmccain@... writes:

>Hi all,

>I have been reading Barry Kaufman's book The Son-Rise Program. This

>is a

>really good book and has given me a lot to think about. Mainly, it

>has

>changed my thinking about my son's progress and made me start to be

>happy

>about his success's and to not compare those to other children. The

>really

>weird thing is that the more I read it, the more I agree with Dr.

>Goldberg

>that my son indeed does NOT have autism but is suffering from

>something else

>entirely. I have been watching our home movies recently and have

>discovered

>that I am not CRAZY. I had come to believe that my son was indeed

>autistic

>from birth and that I just hadn't caught it. THAT IS JUST NOT SO! I

>have

>video tape of my son at 2 years old coloring and using a fork--both he

>can

>not do now--, waving, making direct eye contact, taking notice of

>people

>coming in and going out of the room, and using pronouns correctly. My

>son is

>considered severe on the autism spectrum. Kaufman's son was also

>considered

>severe. Of course, they caught his autism very early. By 19 months

>old,

>they had already been working with him for a while. In one section of

>the

>book, he describes the first time his son cried for his mom. He had

>never

>done that before. MY SON HAS ALWAYS PREFERRED MY COMPANY TO OTHERS

>AND HAS

>ALWAYS MADE THAT KNOWN. Sorry to vent on this. I have just had an

>incredible realization and yet, still feel so frustrated. Watching

>our home

>videos, it is hard to believe that the child sitting with me now is

>even the

>same child. I believe that the chicken pox vaccine my son had at 2

>years and

>2 months is what pushed his immune system over the top! What is my

>point in

>all of this? I have no idea. I just need to vent to others who

>probably

>also feel my frustration. I wish I could get some " autism expert " to

>watch

>our home videos and then explain to me what happened. Will we ever

>get

>other's to listen to us?

>

>

>

>

[Guest guest]

How do we find out if we have one in our area?

Thank You,

If we truly want to get the word out then we have to do it! Please join your

local Chapter and if you don't have one in your area then let us know

and we will send you the information on how to start one. Together we can do

anything. Kathy Coalition-Northern New York Chapter

[Guest guest]

Where do you live? Kathy NNY

[Guest guest]

We are in San Antoino, TX

Where do you live? Kathy NNY

[Guest guest]

> Where do you live? Kathy NNY

>

>

>

[Guest guest]

,

I sent your message to who is our contact in Texas. If you don't hear

from hear please let me know. Sometimes my messages seem to disappear into

thin air! Kathy -NNY

[Guest guest]

I forwarded your message to Cyndy and Marc Shure. They are in Southern

California. Tina is in Northern. There is one Chapter in California. Kathy NNY

[Guest guest]

Hi I'm new to this website. Is there a Chapter in New Jersey? Thanks,

Janine

[Guest guest]

Janine,

Where in NJ do you live? I live in Elmwood Park,

Bergen County? My name is Michele.

Michele

[Guest guest]

We are in the North Dallas Area. I will travel anywhere in DFW Metroplex to

be involved.

[Guest guest]

Janine,

I am working on setting up a chapter in NJ and NYC area. I will keep you

informed.

Rosemarie Covucci

[Guest guest]

Is there an adult group in Wash., DC area?

[Guest guest]

;

Thanks for sharing your thoughts. You took the words and heartache right

out of me. I could cry everytime I see videos/pictures of me giving my son

cow's milk because no one thought to test him for a milk allergy. My son

threw up, screamed, and had explosive diarhea for the first four months of

his life. ( " He is just colicky " was the response.) We were told to put rice

cereal in his formula to keep it down when he was just two weeks old. If I

only knew then what I know now.

He is getting much better thanks to Dr G. I too channel my anger

appropriately and advise all I know to get their newborns tested for

allergies if anything seems abnormal. I am actually a believer that all

newborn's should be tested for food allergies the minute they are born so

the mom's know what to expect. They should also test the strength of the

child's immune system prior to any vaccinations; but that is another

soapbox.

Thanks again.

Suzanne

_________________________________________________________________

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[Guest guest]

Janine,

I forwarded your name to Rosemarie in New Jersey. Kathy -NNY

[Guest guest]

Hi Michele! I'm from in Monmouth/Ocean county area.

[Guest guest]

Thankyou!

[Guest guest]

Thankyou to everyone for there response.

[Guest guest]

,

I know how you feel. My son was playing pat-a-cake at 10 mos., which he could

no longer do at 19 mos. And it makes me cry when a therapist asks if he can do

a certain skill and I think to myself, " no, but he used to " . And you feel like

nobody believes you when you say what they used to be able to do. Just venting,

Kathy P.

Autism

Hi all,

I have been reading Barry Kaufman's book The Son-Rise Program. This is a

really good book and has given me a lot to think about. Mainly, it has

changed my thinking about my son's progress and made me start to be happy

about his success's and to not compare those to other children. The really

weird thing is that the more I read it, the more I agree with Dr. Goldberg

that my son indeed does NOT have autism but is suffering from something else

entirely. I have been watching our home movies recently and have discovered

that I am not CRAZY. I had come to believe that my son was indeed autistic

from birth and that I just hadn't caught it. THAT IS JUST NOT SO! I have

video tape of my son at 2 years old coloring and using a fork--both he can

not do now--, waving, making direct eye contact, taking notice of people

coming in and going out of the room, and using pronouns correctly. My son is

considered severe on the autism spectrum. Kaufman's son was also considered

severe. Of course, they caught his autism very early. By 19 months old,

they had already been working with him for a while. In one section of the

book, he describes the first time his son cried for his mom. He had never

done that before. MY SON HAS ALWAYS PREFERRED MY COMPANY TO OTHERS AND HAS

ALWAYS MADE THAT KNOWN. Sorry to vent on this. I have just had an

incredible realization and yet, still feel so frustrated. Watching our home

videos, it is hard to believe that the child sitting with me now is even the

same child. I believe that the chicken pox vaccine my son had at 2 years and

2 months is what pushed his immune system over the top! What is my point in

all of this? I have no idea. I just need to vent to others who probably

also feel my frustration. I wish I could get some " autism expert " to watch

our home videos and then explain to me what happened. Will we ever get

other's to listen to us?

[Guest guest]

In a message dated 10/5/2001 6:53:52 AM Central Daylight Time, kjm@...

writes:

> And my

> autistic son is a twin, so I had his still-normal sister in most of

> the videos right next to him -- and *he* stands out in those as the

> more social, more verbal and more interactive child.

Oh, Kathleen. That is very telling!! I have decided that God has put this

fire in my belly--and yours--for a reason. He wants us to fight for our

children. I have prayed the Prayer of Jabez this morning and feel up for the

battle today! Let's do it!

All the best,

[Guest guest]

My child who is 14 was also a " star " baby. I remember, among other things,

taking him to a first birthday party of a friend and his participation with

the older siblings impressing everyone. He was one... don't let other people

tell you something you know isn't true. Re: Autism

> -

> A couple of years ago I was asked to be part of a presentation on

> autism and went back to our old videos and pulled clips for the

> presentation and had the same reaction as yours -- and wept. I also

> kept thinking that there must have been pointers to his autism that I

> missed, but when I look at the videos I still see nothing. And my

> autistic son is a twin, so I had his still-normal sister in most of

> the videos right next to him -- and *he* stands out in those as the

> more social, more verbal and more interactive child. Not so any

> more. I understand your frustration first hand.

> --Kathleen--

>

>

>

> Responsibility for the content of this message lies strictly with

> the original author, and is not necessarily endorsed by or the

> opinion of the Research Institute.

>

>

>

[Guest guest]

-

A couple of years ago I was asked to be part of a presentation on

autism and went back to our old videos and pulled clips for the

presentation and had the same reaction as yours -- and wept. I also

kept thinking that there must have been pointers to his autism that I

missed, but when I look at the videos I still see nothing. And my

autistic son is a twin, so I had his still-normal sister in most of

the videos right next to him -- and *he* stands out in those as the

more social, more verbal and more interactive child. Not so any

more. I understand your frustration first hand.

--Kathleen--

[Guest guest]

Whatever it takes, yes our children are worth it and I am determined

to see the day that we know what has caused this and can not only see

our children cured but also prevent other children and families from

having to face the struggles we all experience daily. --Kathleen--

[Guest guest]

At 07:33 PM 1/15/02 -0500, you wrote:

>I am being told that 4 out of 5 people with autism are males. Can anyone

>verify that this is in fact true, and if so, anyone have any references

>to why?

Wayne,

I've heard this as well. In fact I've seen it at my son's ABA school where

a quick walk around the hallways and classrooms bears this out.

Why is a question I've been wondering about myself. I am also wondering if

it may be that when a female is autistic do they tend to have worse

symptoms on average than a male on average?

Marty

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[Guest guest]

This is from a summary of some DAN! conference

" A defective metallothionein could explain many of the symptoms of

autism, including sensitivity to heavy metals, zinc depletion and copper

overload, reduced stomach acid, incomplete breakdown of proteins. Since

metallothionein production is enhanced by estrogen and progesterone

during early development, females will be better protected than males

against heavy metals. "

Talk wrote:

> I am being told that 4 out of 5 people with autism are males. Can

> anyone

> verify that this is in fact true, and if so, anyone have any

> references

> to why?

> Thanks

>

> Wayne Obie

> Media & Public Relations

> Talk International.com

> communications@...