RE: glowing report and parents

[Guest guest]

(hmm says this was posted but I can't seem to find it)

My son has been on the protocol for 6 yrs. We've had our shares of ups

and downs. His bloodwork is now A+ / his brain SPECTs show issues in a

variety of areas.

Just when we see that light, allergy season pops up, a cold comes on or

medication is changed

<sigh>

I was told by my therapist not to touch this subject, but I'm feeling

lucky tonight.

what do you, as parents of children who are seeing Dr Goldberg, need?

Local support ? Monthly mtgs? Local support from medical professionals?

material to take to school personnel and medical professionals?

A while back, when I helped on the NETWORK newsletter,

post cards were sent to families by The Office. The postcards

asked for permission for the family to be added to a Family Support Group

email/mailing list for conferences, local support grp mtgs, etc.

The Family Support Group couldn't have the families' addresses due to HIPPA

regs. We needed a signed permission form from them giving permission

to be added. Now - rumor has it that Dr G has 100s of patients.

The Family group received back less than 75 cards.

Alot has gone on within the group in the last 7-10 yrs.

Dr G would like to see the parents united.

But I just don't see how ....

doris

- land

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

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

It also seems difficult to unite the parents when geographically we

are all so far apart. And from an illness standpoint, all of our

kids are far apart too.

I don't have a good answer for what we need as parents.

--- In , Doris and Steve <sjsmith@...>

wrote:

>

> (hmm says this was posted but I can't seem to find it)

>

> My son has been on the protocol for 6 yrs. We've had our

shares of ups

> and downs. His bloodwork is now A+ / his brain SPECTs show issues

in a

> variety of areas.

> Just when we see that light, allergy season pops up, a cold comes

on or

> medication is changed

> <sigh>

> I was told by my therapist not to touch this subject, but I'm

feeling

> lucky tonight.

>

> what do you, as parents of children who are seeing Dr

Goldberg, need?

> Local support ? Monthly mtgs? Local support from medical

professionals?

> material to take to school personnel and medical

professionals?

>

> A while back, when I helped on the NETWORK newsletter,

> post cards were sent to families by The Office. The postcards

> asked for permission for the family to be added to a Family

Support Group

> email/mailing list for conferences, local support grp mtgs, etc.

> The Family Support Group couldn't have the families' addresses due

to HIPPA

> regs. We needed a signed permission form from them giving

permission

> to be added. Now - rumor has it that Dr G has 100s of patients.

> The Family group received back less than 75 cards.

>

> Alot has gone on within the group in the last 7-10 yrs.

> Dr G would like to see the parents united.

> But I just don't see how ....

>

>

> doris

> - land

>

>

>

>

>

>

>

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

>

> 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]

I can tell you that having a good support system for IEP meetings is

wonderful!!!! When you go to IEP meetings it normally seems like me against the

world and having someone go with you is such a comforting thought. I know that

the director of the clinic that I take too offered to go with me and I am

thrilled!!!!! Being a parent of a newly diagnosed parent I will admit I am

clueless as to what needs to be done. I spent the first year of my daughter

being with us (she is adopted) trying to survive. I can not tell you how hard

that first year was but especially the first 6 months. Sheri

meljackmom <meljackmom@...> wrote: Doris

It also seems difficult to unite the parents when geographically we

are all so far apart. And from an illness standpoint, all of our

kids are far apart too.

I don't have a good answer for what we need as parents.

--- In , Doris and Steve <sjsmith@...>

wrote:

>

> (hmm says this was posted but I can't seem to find it)

>

> My son has been on the protocol for 6 yrs. We've had our

shares of ups

> and downs. His bloodwork is now A+ / his brain SPECTs show issues

in a

> variety of areas.

> Just when we see that light, allergy season pops up, a cold comes

on or

> medication is changed

> <sigh>

> I was told by my therapist not to touch this subject, but I'm

feeling

> lucky tonight.

>

> what do you, as parents of children who are seeing Dr

Goldberg, need?

> Local support ? Monthly mtgs? Local support from medical

professionals?

> material to take to school personnel and medical

professionals?

>

> A while back, when I helped on the NETWORK newsletter,

> post cards were sent to families by The Office. The postcards

> asked for permission for the family to be added to a Family

Support Group

> email/mailing list for conferences, local support grp mtgs, etc.

> The Family Support Group couldn't have the families' addresses due

to HIPPA

> regs. We needed a signed permission form from them giving

permission

> to be added. Now - rumor has it that Dr G has 100s of patients.

> The Family group received back less than 75 cards.

>

> Alot has gone on within the group in the last 7-10 yrs.

> Dr G would like to see the parents united.

> But I just don't see how ....

>

>

> doris

> - land

>

>

>

>

>

>

>

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

>

> 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

>

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