Re: Glowing report from school - OK good news, BUT !

[Guest guest]

It is wonderful hearing stories of your children's success. Unfortunately

the truth of the matter lies in that there are numberous patients of Dr.

Goldberg's who were once 3,4, 5, 7 and even older that are going through trials

and

tribulations with nothing at all what you are describing, Donna. So to say

there is light at the end of the tunnel, is predominantly for parents getting

help for their children while the child's under age 5. Back in the early 90's

it

was a lot darn harder to decipher what info was B. S. and what was NOT. So

things are easier for the newer parents with that " A " diagnosis.

Some of us didn't have the resources that are more readily available. I am

asking that everyone keep in mind that there are parents out there, under

protocol who are not even close to where your son is.- Who have been on

protocol for over 7 years now. So let's have some compassion here.

*************************AND I THINK MY POST IS LONG OVERDUE !

My daughter, Lindsey, now 13, was seeing Dr. Goldberg since her 7th birthday

and by

golly what we are still going thru is nothing close to what you are

describing with your son.

Is it anybody's fault? - NO Am I human? - YES So therefore anyone

in my/our shoes with concern for the well-being of their child, would feel

EXACTLY THE SAME WAY AS ME!

It is NOT just good fortune, but a BLESSING that more time has gone by and

this epidemic is HUGE. If I sound a bit insensitive then I guess I am, but I

think it is distasteful in a sense to use our kids as who is getting furtherest,

etc. This isn't a competition!!

I am also personally disappointed that when I post positive things, NO ONE

except for my dearest friends (who have been here longer than myself) is quick

to send a motivational - inspirational message. It isn't nice to not treat

people equally. Especially when we have been in this group forever. Take that

with advisement, those of you who know who I am taking about!

Let's stop being so clickish (High School B. S.) and start demanding

answers. WHEN ARE OUR OLDER KIDS GOING TO GET THE ATTENTION THEY SO WELL

DESERVE.

Or are we just going to disregard them and put them in a corner- Labeled " NOT

IN TIME TO

GET 100% RESULTS.

Yes, I am angry and for darn good reasons. I did nothing different than any

parent out there who was fortunate enough to get their kid in by 2, 3 or even

4, but one family succeeds while another doesn't.

God has his plans for all of us. And this is JOINT EFFORT ! NO ONE PERSON

CAN MAKE THIS WORLD OF AUTISM CHANGE. IT TAKES A GROUP EFFORT AND ANYONE

THINKING DIFFERENTLY IS IN TOTAL DISILLUSIONMENT. OUR KIDS ARE HUMAN BEINGS,

NOT

GUINEA PIGS.

Michele Davies- Cerruto

Greenville, So. Carolina

PS- All our lives will eventually come to an end and I know one thing ....

the unfortunate occurrences in my and many other lives is that " Bad

Things Do Happen To Good People " . So cut the darn contest out, please.

It is hurtful and discriminating. And I am asking politely.

" Ms. Michele "

[Guest guest]

I just wanted to say that I never take anything

positive someone says as a " competition " rather as

encouragement. I am sorry for those of you who have

not had as huge of benefits from this protocol, and

that your children were perhaps older before you were

familiar with this treatment. I never took anyone as

trying to downplay anyone else's situation or belittle

anyone for not getting their child started on this

protocol earlier. Every child is SO important and

every child matters, I can't believe that anyone would

not want EVERY child to do well. Let's try not to be

negative toward each other... rather let's focus on

putting that energy toward doing whatever we can to

help our kids. We all have unique journies that we

and our children are on... doesn't make one person

better or worse than another, just different. Let's

focus on what we all have in common... loving and

helping our children be the very best they can be!!

--- isoaa@... wrote:

> It is wonderful hearing stories of your children's

> success. Unfortunately

> the truth of the matter lies in that there are

> numberous patients of Dr.

> Goldberg's who were once 3,4, 5, 7 and even older

> that are going through trials and

> tribulations with nothing at all what you are

> describing, Donna. So to say

> there is light at the end of the tunnel, is

> predominantly for parents getting

> help for their children while the child's under age

> 5. Back in the early 90's it

> was a lot darn harder to decipher what info was B.

> S. and what was NOT. So

> things are easier for the newer parents with that

> " A " diagnosis.

>

> Some of us didn't have the resources that are more

> readily available. I am

> asking that everyone keep in mind that there are

> parents out there, under

> protocol who are not even close to where your son

> is.- Who have been on

> protocol for over 7 years now. So let's have some

> compassion here.

>

> *************************AND I THINK MY POST IS

> LONG OVERDUE !

> My daughter, Lindsey, now 13, was seeing Dr.

> Goldberg since her 7th birthday

> and by

> golly what we are still going thru is nothing close

> to what you are

> describing with your son.

> Is it anybody's fault? - NO Am I human? -

> YES So therefore anyone

> in my/our shoes with concern for the well-being of

> their child, would feel

> EXACTLY THE SAME WAY AS ME!

>

> It is NOT just good fortune, but a BLESSING that

> more time has gone by and

> this epidemic is HUGE. If I sound a bit insensitive

> then I guess I am, but I

> think it is distasteful in a sense to use our kids

> as who is getting furtherest,

> etc. This isn't a competition!!

>

> I am also personally disappointed that when I post

> positive things, NO ONE

> except for my dearest friends (who have been here

> longer than myself) is quick

> to send a motivational - inspirational message. It

> isn't nice to not treat

> people equally. Especially when we have been in

> this group forever. Take that

> with advisement, those of you who know who I am

> taking about!

>

> Let's stop being so clickish (High School B. S.)

> and start demanding

> answers. WHEN ARE OUR OLDER KIDS GOING TO GET THE

> ATTENTION THEY SO WELL DESERVE.

> Or are we just going to disregard them and put them

> in a corner- Labeled " NOT

> IN TIME TO

> GET 100% RESULTS.

>

> Yes, I am angry and for darn good reasons. I did

> nothing different than any

> parent out there who was fortunate enough to get

> their kid in by 2, 3 or even

> 4, but one family succeeds while another doesn't.

>

> God has his plans for all of us. And this is JOINT

> EFFORT ! NO ONE PERSON

> CAN MAKE THIS WORLD OF AUTISM CHANGE. IT TAKES A

> GROUP EFFORT AND ANYONE

> THINKING DIFFERENTLY IS IN TOTAL DISILLUSIONMENT.

> OUR KIDS ARE HUMAN BEINGS, NOT

> GUINEA PIGS.

>

> Michele Davies- Cerruto

> Greenville, So. Carolina

>

> PS- All our lives will eventually come to an end

> and I know one thing ....

> the unfortunate occurrences in my and many other

> lives is that " Bad

> Things Do Happen To Good People " . So cut the darn

> contest out, please.

>

> It is hurtful and discriminating. And I am asking

> politely.

>

> " Ms. Michele "

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Hi Michele,

I don't understand what you are trying to say. Are you pleased with

Dr. Goldberg and your child's treatment? Are you not pleased with the

progress? Have you tried other therapies? Sometimes it is very

difficult for me to follow what people are tryiing to say in their

messages. I have been on this list for a while and have literally

gone back and read posts from the beginning. I know you have been on

this list for a long time. I thought you were pleased with nids and

your child's progress. I am sorry if things aren't going well. My

child is older too. Sometimes I have so much guilt about not doing

things earlier, not having enough money, not having enough energy to

do more. I know it is not my fault but I feel like it sometimes.

Anyway, I just don't understand why this thread hit a sore spot with

you could you please explain it to me?

[Guest guest]

I do not personally know anyone on this list. And I cannot keep

track of whose child is doing well, whose is not, whose is older,

whose is younger.

I too only post on topics that I feel familiar with, or when someone

else's experiences closely resemble mine.

I have never considered any person's " good news " post on this list

as a competition, but moreso " light at the end of the tunnel " or

just another parent sharing their success with others of us who can

realte to what they have been going through.

I am so sorry Michele that you have not seen the results on the

protocol.

>

> It is wonderful hearing stories of your children's success.

Unfortunately

> the truth of the matter lies in that there are numberous patients

of Dr.

> Goldberg's who were once 3,4, 5, 7 and even older that are going

through trials and

> tribulations with nothing at all what you are describing, Donna.

So to say

> there is light at the end of the tunnel, is predominantly for

parents getting

> help for their children while the child's under age 5. Back in

the early 90's it

> was a lot darn harder to decipher what info was B. S. and what was

NOT. So

> things are easier for the newer parents with that " A " diagnosis.

>

> Some of us didn't have the resources that are more readily

available. I am

> asking that everyone keep in mind that there are parents out

there, under

> protocol who are not even close to where your son is.- Who have

been on

> protocol for over 7 years now. So let's have some compassion

here.

>

> *************************AND I THINK MY POST IS LONG OVERDUE !

> My daughter, Lindsey, now 13, was seeing Dr. Goldberg since her

7th birthday

> and by

> golly what we are still going thru is nothing close to what you

are

> describing with your son.

> Is it anybody's fault? - NO Am I human? - YES So

therefore anyone

> in my/our shoes with concern for the well-being of their child,

would feel

> EXACTLY THE SAME WAY AS ME!

>

> It is NOT just good fortune, but a BLESSING that more time has

gone by and

> this epidemic is HUGE. If I sound a bit insensitive then I guess

I am, but I

> think it is distasteful in a sense to use our kids as who is

getting furtherest,

> etc. This isn't a competition!!

>

> I am also personally disappointed that when I post positive

things, NO ONE

> except for my dearest friends (who have been here longer than

myself) is quick

> to send a motivational - inspirational message. It isn't nice to

not treat

> people equally. Especially when we have been in this group

forever. Take that

> with advisement, those of you who know who I am taking about!

>

> Let's stop being so clickish (High School B. S.) and start

demanding

> answers. WHEN ARE OUR OLDER KIDS GOING TO GET THE ATTENTION THEY

SO WELL DESERVE.

> Or are we just going to disregard them and put them in a corner-

Labeled " NOT

> IN TIME TO

> GET 100% RESULTS.

>

> Yes, I am angry and for darn good reasons. I did nothing

different than any

> parent out there who was fortunate enough to get their kid in by

2, 3 or even

> 4, but one family succeeds while another doesn't.

>

> God has his plans for all of us. And this is JOINT EFFORT ! NO

ONE PERSON

> CAN MAKE THIS WORLD OF AUTISM CHANGE. IT TAKES A GROUP EFFORT AND

ANYONE

> THINKING DIFFERENTLY IS IN TOTAL DISILLUSIONMENT. OUR KIDS ARE

HUMAN BEINGS, NOT

> GUINEA PIGS.

>

> Michele Davies- Cerruto

> Greenville, So. Carolina

>

> PS- All our lives will eventually come to an end and I know one

thing ....

> the unfortunate occurrences in my and many other lives is that " Bad

> Things Do Happen To Good People " . So cut the darn contest out,

please.

>

> It is hurtful and discriminating. And I am asking politely.

>

> " Ms. Michele "

>

>

>

[Guest guest]

Wow. I had no idea anyone would be offended by a sincere attempt to

share something encouraging with the group. I had no idea we were in

" competition " with each other -- my goodness, on the contrary, I think

of us as all being in the same boat.

[Guest guest]

>

> Wow. I had no idea anyone would be offended by a sincere attempt to

> share something encouraging with the group. I had no idea we were in

> " competition " with each other -- my goodness, on the contrary, I think

> of us as all being in the same boat.

ETA: I'm sorry I offended you, . I would never intentionally

do such a thing to a fellow traveler.

Donna

>

[Guest guest]

I have been thinking about the various posts all day, and I think there is

one underlying theme... we all care intensely for our children and long for

the best for them. We have highs, and we have lows. Some children are

still struggling hard to make a little progress, and some are fortunate to

be on a faster track. Some of us may feel we see a light at the end of the

tunnel, others of us may feel at times that the light at the end of the

tunnel is an oncoming train. But we all love our children and please let¹s

do our best to support each other. This group has been a huge help to me

and I¹m sure to many of you... we¹re bound to hit spots where emotions flare

because our feelings for our kids are so strong. But that¹s why we need each

other! Let¹s move on together.

Caroline

[Guest guest]

This has been an extremely rough 3 months for us (as well).

's bloodwork is A+ but his SPECT scans are all over the place.

He's at a school 45 min away for a 90 day diagnostic placement

(4 kids in his class and a highly competent trained supportive staff);

we've got constipation (which may be due to a low fat diet ...)

and OCD/stims <sigh>

BUT this is another period that we have to live through because

there are valleys as well as hills.... is 11 and this is

a very important, yet trying time, for his body. Hormones are coming

online and the brain is changing.

Things are finally looking good for our kids.

Dr Goldberg appears to have finally found the support he needs

to move on. What he's been saying over and over again these last

10-20 yrs is finally being proven by researchers and medical

teams.

Yet we STILL can't find the support we need.

I " ve always attended my local ASA chapter meetings.

I get information on local happenings (like we currently don't

have a dir of Spec Ed); where the $$ and grants are and

what other parents are doing.

But as a parent I feel terribly isolated. Thank goodness

for people like Kathy, , Michele (with one L), Sharon and others

who have been there to offer support and encouragement (and listen

to my never ending whining)

My therapist told me not to do this :-)

but I'm feeling lucky today ;-) so let me throw it

out there for discussion.

What do parents, who have children who are patients of Dr Goldberg,

need? Do you need local support? Do you need a newsletter?

Do you need monthly meetings?

Once upon a time, when I helped out on the Network Newsletter,

a card was sent out by Dr G's office staff to every patient's family.

The card asked for permission for the patient's family name to be added

to a family support network for mailings, local mtgs and

conferences. Due to HIPPA regs, the parent group could

not get this information directly from the Office.

We had to have a signed consent form from the family.

Dr G is suppose to have a few hundred patients.

We received back less than 75 responses.

doris

-land

>

> I have been thinking about the various posts all day, and I think

there is

> one underlying theme... we all care intensely for our children and

long for

> the best for them. We have highs, and we have lows. Some children are

> still struggling hard to make a little progress, and some are

fortunate to

> be on a faster track. Some of us may feel we see a light at the end

of the

> tunnel, others of us may feel at times that the light at the end of the

> tunnel is an oncoming train. But we all love our children and

please let¹s

> do our best to support each other. This group has been a huge help

to me

> and I¹m sure to many of you... we¹re bound to hit spots where

emotions flare

> because our feelings for our kids are so strong. But that¹s why we

need each

> other! Let¹s move on together.

>

> Caroline

>

>

>

>

>

>

[Guest guest]

Doris,

You are so right about the lack of local support. Every time I mention

I end up giving a little mini seminar on what it is all about...lol. While

getting the word out is great, it still leaves me without other local moms to

relate to. I guess our long distance buddies (you're in the club...like it or

not!) are what we have for now.

Sharon :-)