Re: RE:diet modifications / new list?

[Guest guest]

My Dear :

Jody the moderator has explained the number of emails she has currently has

to read. Not all can be addressed without some thought and sometimes some

consultation. So at the moment we can't deliver entirely on our mission

statement

and still serve the basic requirement of having a viable list.

There is a listserv on Long Island for adult SCD. It became so overwhelming

that the list owner had to close it down. Fortunately it us up and running

again.

If we have to choose between allowing other topics and staying pretty much

on SCD we soon won't have a list. This is a voluntary endeavor undertaken

by appreciative parents to help other parents. Numerous sites and groups exist

to support the many therapies and treatments that have been found helpful

for autism.

Our area of expertise is dietary intervention and it has to be the first

priority.

The diet itself has been around for quite a while and adults had to heal simply

by reading the book and then Elaine created her web site. When Mimi became

interested in SCD as a dietary intervention for autism, she in turn started

this list only a little under two years ago.

I have absolutely no authority here beyond a big mouth and a big desire to

help and the advantage of living within a cheap long distance calling area

of Elaine. I never slap kids or adults :-)

If the list owner and administrators want to allow these other discussions,

I will willingly join in as I am always interested in learning more and simply

adore trotting through laberynth after laberynth on " Google " and other search

engines and have the archives to prove it.

So I agree to leave it up to those in charge to have the definitive word on

what goes down here on Pecan Bread@yahoo and hope you will to. Can I anticipate

you would volunteer to help out with a new list?

..

On Monday, January 19, 2004, at 10:21 AM, Schultz wrote:

> As posted on the listserve homepage the purpose of pecanbread listserve:

>

> This is a discussion group for those implementing the Specific Carbohydrate

> Diet™. Many, but not all of the members, have children with ASD. Anyone

> following the SCD™ is welcome to join our group.Parents can ask each other

> questions, update each other regarding the progress of their child, and

> provide each other with support.

>

> Carol Wrote:

>

> Elaine and the list do not support modifications to the diet in

> > BTVC being proposed as a general rule for all on the diet.  Every

> > individual will find certain foods are agreeable or not agreeable and,

> > using common sense, these adjustments can be made by each individual.

> > Modifying the diet for the general public is not endorsed by the

> > author or this list.

> ----

>

> Dear listmates,

>

> For kids with ASD and especially my child, food is one of those areas that

> invites experimentation. 

>

> I joined this list to learn more about how I can help my son.  The very

> nature of ASD incents me to try new things -- to test new areas.  As Jody

> suggests in her email, maybe it is time to start another list where more

> indepth discussion can happen and, in my opinion, where parents of ASD

> children discuss their multi-variable testing and results with food.  If,

> as

> Carol suggests above, that discussion of modifications are not supported

> here, but parents would like to discuss modifications, a new list would be

> appropriate. 

>

> I for one am somewhat intimidated to write anything to this list for fear

> of

> " getting my hand slapped. "  

>

> Schultz

> Mom to , age 7, AS

>

Carol F.

---------

c.frilegh@...

Toronto , Celiac SCD 2 years

There is no substitute for the right food!

[Guest guest]

Hi ,

I'm a past moderator of this list..... and just thought I would offer my

perspective. Please read this with the friendly tone I tried to write it

in.....absolutely no hand slapping intended.

As the part you clipped from the website states..... this particular list is

dedicated to implementing the SCD.... the trademarked Specific Carbohydrate

Diet. While Elaine Gottschall doesn't participate directly on our list

currently, we are still able to work closely with her and defer to her judgment

on most anything pertaining to the diet. She doesn't advocate many of the

modifications that various people have proposed over the past many months....

and, believe me, there have been some very prominent individuals who were

determined to take Elaine's diet and " officially " change it, to include all

kinds of things that are NOT part of the tried and true protocol.

I know most parents here are not really trying to do that, but just to explain

why we've worked so hard to stick close to the original diet, and stay on good

terms with Elaine might help you to see the perspective many of us have had.

There has always been lots of discussion about supplements and enzymes...... no

problem with that...... though we just basically try to figure out how to

include what supplements parents would like to use..... in LEGAL forms, so as

not to compromise the diet. There are also many ways the diet has to be

individualized, according to each child's tolerance of certain foods...... but

we just don't make big general blanket statements that would divert the diet

from it's original intended course, instead we always say to observe your own

child carefully and add new foods slowly.

Anyway, above all, we are very concerned with remaining on good terms with

Elaine so that we can continue to receive her advice and guidance. With a huge

list, the necessitates keeping some control to keep the discussion from ranging

far afield...... we try to keep pulling back to center. The only time someone

really gets their " hands slapped " is when they persist in declaring that general

modifications/changes should be made to the SCD, or when they continue to

post things about other diets and treatments that are truly in conflict with

SCD. For example, if someone had posted that in their own experience, it had

helped their own digestion to keep fruit separate from other foods.....and then

left it at that..... none of us would probably have said a thing. It's only when

someone persists in offering advice of that kind with a tone of " this is how you

should do SCD " in their repeated posts.... then we have to step up and defend

the intent of this list a bit.

I think there will inevitably be some minor conflict with a list this big.....

but just wanted you to know why we can't let it be like an unmoderated forum of

all kinds of ideas mixed together with SCD. We would immediately jeopardize our

relationship with Elaine, which we value so very much, and the ASD community (in

my opinion) would lose out if we had no list to which Elaine could refer

interested parents as she goes out speaking at conferences such as DAN and

Autism One, which are engagements that are coming up for her this year. I hope

this helps clarify things a little bit. Thanks for listening.

Patti, mom to Katera, age 7, SCD 9 months

RE:diet modifications / new list?

<<For kids with ASD and especially my child, food is one of those areas that

invites experimentation.>>

<<I for one am somewhat intimidated to write anything to this list for fear of

" getting my hand slapped. "

Schultz

Mom to , age 7, AS>>

[Guest guest]

,

I have some comments about several parts of your post.

-----------

" I joined this list to learn more about how I can help my son. The

very nature of ASD incents me to try new things -- to test new areas.

As Jody suggests in her email, maybe it is time to start another list

where more indepth discussion can happen and, in my opinion, where

parents of ASD children discuss their multi-variable testing and

results with food. "

I am a little confused about what you mean by " multi-variable testing

and results with food " . Unfortunately, there has been very little

consensus about what " ASD children " tolerate and what they don't.

Each child is an individual. Some eat bananas every day and others

" freak out " with one bite of banana. Some kids can eat almonds, other

can tolerate pecans (or another nut). Some kids eat lots of eggs,

others react badly. So, in experimentation with food choices, there

is no " one size fits all " or even " one size fits most " in ASD kids.

We recommend the intro diet for 2-3 days followed by the slow

introduction of new foods. Fruits and veggies should be peeled,

seeded and cooked. Keep a food log and figure out what your child

tolerates and what he/she does not tolerate.

This is the only consensus that we have been able to come up with.

-----------------

" If, as Carol suggests above, that discussion of modifications are not

supported here, but parents would like to discuss modifications, a new

list would be appropriate. "

What types of modifications are you referring to? Modifications that

eliminate whole classes of foods (like fruits) or modifications like

taking supplements along with following the SCD?

-----------------

" I for one am somewhat intimidated to write anything to this list for

fear of " getting my hand slapped. " "

Well, you can relax there. No one is in danger of getting their hand

slapped.

-----------------

I view this as a list where we can be supportive of each other as we

implement the SCD for our kids (and/or ourselves). I do not

necessarily view this list as a place to learn " what the SCD is " .

Pecanbread.com took hours and hours to compile and complete. It is

there as a resource 24/7 and many of the questions that get asked on

this list are addressed on Pecanbread.com.

I know it easier to just pop online and send of a quick question than

it is to actually read a webpage, but there is really TONS of info on

Pecanbread.com. And there are over 100 recipes.

Jody

mom to -5.1 and -7.4

[Guest guest]

Dear Carol and Patti,

Thank you for your detailed and very well explained posts. I understand

much better what you are saying -- any discussion of tangential issues

should be modified to a person's own experience. However, most talk should

focus on implementing SCD as developed by Elaine. (This is my

interpretation.)

This does make sense to me - if I talk about modifying SCD and don't

qualify, it can be interpreted as an acceptable route for others,

particularly newbies (which includes me).

Elaine also took the time to send me an explanation, which I really

appreciate.

Thanks for the discussion -- it was definitely helpful for me .

Schultz

[Guest guest]

this board and scd are getting left behind.

the web site is the appropriate vehicle for laying out what scd it is

if people were really concerned about healing then a more explorartoy

approach with enzymes as a basic if they are tolerated would be in

place

but its more not having brains stretched that seems to be the problem

In pecanbread , " Schultz " <lauraslistserve@h...>

wrote:

> As posted on the listserve homepage the purpose of pecanbread

listserve:

>

> This is a discussion group for those implementing the Specific

Carbohydrate

> Diet™. Many, but not all of the members, have children with ASD.

Anyone

> following the SCD™ is welcome to join our group.Parents can ask

each other

> questions, update each other regarding the progress of their child,

and

> provide each other with support.

>

> Carol Wrote:

>

> Elaine and the list do not support modifications to the diet in

> > BTVC being proposed as a general rule for all on the diet.  Every

> > individual will find certain foods are agreeable or not agreeable

and,

> > using common sense, these adjustments can be made by each

individual.

> > Modifying the diet for the general public is not endorsed by the

> > author or this list.

> ----

>

> Dear listmates,

>

> For kids with ASD and especially my child, food is one of those

areas that

> invites experimentation.

>

> I joined this list to learn more about how I can help my son. The

very

> nature of ASD incents me to try new things -- to test new areas.

As Jody

> suggests in her email, maybe it is time to start another list where

more

> indepth discussion can happen and, in my opinion, where parents of

ASD

> children discuss their multi-variable testing and results with

food. If, as

> Carol suggests above, that discussion of modifications are not

supported

> here, but parents would like to discuss modifications, a new list

would be

> appropriate.

>

> I for one am somewhat intimidated to write anything to this list

for fear of

> " getting my hand slapped. "

>

> Schultz

> Mom to , age 7, AS

[Guest guest]

> but its more not having brains stretched that seems to be the

problem

???

Don't parents who even consider SCD not stretch their brains? The

regular parent sends his or her kid off to an institution and never

even thinks about the effects of food whatsoever.

[Do not think that I have no respect for parents who have other

opinions or who do not have the knowledge. I do.]

But stretching my mind even further than I do at the moment is asking

too much. As I spoke to a group of parents of asd-children yesterday

evening, I have seen and heard what the actual knowledge about

autism, food and education is. It is saddening to say the least.

So I think we as a group of brain wrecking parents are doing one

terrific job.

Don't put us down.

Marjan

[Guest guest]

> We don't flame and bash here.

I apologize

Marjan