Re: More Venting! Slitely off topic

April 20, 2006

Oh, I agree! The " best " part was when I told Wesley's developmental

pediatrician (what a laugh THAT title is) that we were starting this

diet. She said that it's very difficult and expensive and there's

been no proof that it works! NO PROOF! THERE'S TONS OF PROOF!

ahem. I'm done now.

--Mel

April 20, 2006

I can completely relate too. 94% of the people in our lives (not including

friends on pecanbread here, of course do not understand why we are doing the

diet, or how it is benefitting us, even though if going off diet there is a

regression in language and behavoir, it is not enough. Excepting our doctor,

every therapist we have run across did not have two oodles of insight into how

diet effects health, leaky gut and immune problems, and how they effect

learning, or the inability to learn. Long story short, unless someone is very

interested in specific information about the diet, I simply tell most people my

children are on a special diet because lots of food allergies and sensitivities,

which is accurate. I find it frustrating and an energy drain to spend too much

of my mental and time resources on people who are not open to understanding,

hearing, or doing their own research. I'd rather spend that type of energy

reaching out to people I know with developmental delays and

health problems who ARE interested in learning what options are available.

Like Antionette and her family, my son Ben did not test positive for celiac

disease, but I would bet my last cent and scrap of food he is. January before

last he was 4 years old and wearing 24 month old clothes, this last january he

was age 5 wearing size 4T. Both my children were able to speak and finally potty

train on and because of SCD, I say because of SCD, if we go off diet, there is

regression in language, self care, and the ability to learn, so the relationship

is not casual, by any means. This is going to sound a tad negative, but, people

who still cannot believe this diet works for us, or any special diet might work,

people who cannot to see the relationship between a starving body and a starving

mind of that one body system, are not going to have their minds changed because

of anything else. And, as someone else mentionned, these people usually have

nothing personally riding on the whole situation, making their advice and

opinion worthless. So, I say, to those

not really interested and who will not invest any time in learning anything

new, other than to be unsupportive, my children are on a special diet because of

food allergies, which is the basic truth. I end it there. It's for them to

accept in their own way.

Summer

" Witkowicz, [DPYUS] " wrote:

Hello All,

I can totally relate to all this stuff about people

questioning the diet. I do think most people think we are over controlling

and that is a big part of why we do it. But we know better and who really

cares what they think. Our kids will be so much healthier. I mean think

about it nothing bad ever enters their bodies on this diet. That is almost

unheard of in this country. I do feel sad sometimes that I cannot ever take

my child for a 's burger or out for ice cream, but at this stage he

doesn't know any different than SCD and does not care. To him Strawberries

are just as good. It's me that cares not him. He would rather go to the

playground.

It upsets me when my mom, who is actually very supportive, makes comments

like how much longer do we have to do this diet for him? Well, I don't

know, as long as it takes! and we don't have a choice because the

alternative is severe gut issues and severe ASD. I just can't think that

far ahead. I just have to think of right know and right know there is no

other way. I think she forgets how sick he really was before SCD because he

is doing so well. I will never forget. I mean doesn't she think that I

would rather just feed him healthy food nd not have to worry obsessively

about everything that goes into his mouth. I spend countless hours

pondering what sneaky illegals could be hidden in his food because he still

has yeast even on this diet and therefore I must be missing something. Why

can't we get rid of that dang stuff anyway? I am tired of autism.

It also baffles me when people say that they couldn't do that diet for their

ASD child. What do you mean? You won't even try? I would do anything for

my son. Anything! Come on we are talking about our children's physical and

mental well being. For some this diet is what brings their child back from

the dark whole of autism. SCD brought my sweet son back to me. He now

talks up a storm and there was a time when I didn't think I would ever hear

him call me mom again. Because of SCD he not only says mommy but I LOVE

YOU MOMMY! Those are the best words ever!

Kim

Mom to Noah 2 1/2 yrs old, SCD since FEB 2005, ASD

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

Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2¢/min

with Yahoo! Messenger with Voice.

April 20, 2006

Kim said: ................Our kids will be so much healthier. I mean think

about it nothing bad ever enters their bodies on this diet................

............It upsets me when my mom, who is actually very supportive, makes

comments like how much longer do we have to do this diet for him? Well, I

don't

know, as long as it takes! and we don't have a choice because the

alternative is severe gut issues and severe ASD. I just can't think that

far ahead. I just have to think of right know and right know there is no

other way. I think she forgets how sick he really was before SCD because he

is doing so well. I will never forget.................Because of SCD he not

only says mommy but I LOVE YOU MOMMY! Those are the best words ever!

Dear Kim and to all it may concern,

Thank God that we have this SCD way as an option. May be more expensive but

worth every dollar! By far....to get my first hug.....priceless!

Our family thinks we are nuts...but we don't care...they think it is normal to

act ASD! Don't ask.....a form of insanity... " they just need better discipline! "

You see our kids are high functioning...but sick all the same. It is easy to

miss this...thank God we didn't!

We will never forget...will we?

...and to think that we have only been doing this 2 months....prior

GFCFSF...relief but NOTHING LIKE THIS!

It is me and my husband's opinion that it is for a life time...a change of

culture....a new way of living....something that they will never know any

different about.

My son said after our experiment with gluten free starchy sugary sweets this

last Christmas (before SCD) I don't like that stuff....it makes me sick! He

truly feels that his friends may die...and worries about them daily! He hates

the fast food commercials...and say " oh no! " ...gets very upset with them.....he

claims that he is going to open up the first SCD McD's! I say: " you go boy! "

One year after the last symptoms leave...we may cheat....but only then and only

for a treat...by then it may not be a treat!!!! My husband and I where sharing

about how that stuff is already sounding so gross to us now!

We caught a cold...and it only lasted three days...our neighbors ended up on

antibiotics and sick for two week! NO JOKE...ALREADY SEEING A DIFFERENCE IN US

AND THE REST OF THE WORLD!

Sincerely, Antoinette

(entire family SCD 2 months...and healing for the first time, Celiac ASD and

ore....feeling better than ever!...HAVE A ways to go...BUT time is proving this

thing!)

For information on the Specific Carbohydrate Diet, please read the book

_Breaking the Vicious Cycle_ by Elaine Gottschall and read the following

websites:

http://www.breakingtheviciouscycle.info<http://www.breakingtheviciouscycle.info/\

>

and

http://www.pecanbread.com<http://www.pecanbread.com/>

April 20, 2006

Hi Kim;

I totally hear you, and agree. I am SO sick of autism too, however I would

rather DIE trying to recover my child than to throw my hands in the air and quit

just because:

a) it is inconvenient

everyone in the world (with the exception of this group)seems to be against

this diet and sees it as the latest fad treatment

c) when trying to explain the strict adherence everyone looks at you like you

have three heads and are some zealous health nut who is harming your child with

your silly zealous beliefs

d) sometimes I wonder if I DO have three heads and should admit myself to the

local psych ward ;-)

I'm usually so tired and stressed when people ask for explanations of my biomed

routine that I say the doctor prescribed these treatments and they are necessary

- and if I'm really having a bad day I just say - sorry I don't have the energy

to explain this to you (for the umpth-teenth time) ;-)

Kim (Mommy going mental today)

3 yo ASD

2 yo many behavioural problems, probably high end ASD

Baby on the way (very hormonal today!)

More Venting! Slitely off topic

Hello All,

I can totally relate to all this stuff about people

questioning the diet. I do think most people think we are over controlling

April 20, 2006

Hi Kim;

I totally hear you, and agree. I am SO sick of autism too, however I would

rather DIE trying to recover my child than to throw my hands in the air and quit

just because:

a) it is inconvenient

everyone in the world (with the exception of this group)seems to be against

this diet and sees it as the latest fad treatment

c) when trying to explain the strict adherence everyone looks at you like you

have three heads and are some zealous health nut who is harming your child with

your silly zealous beliefs

d) sometimes I wonder if I DO have three heads and should admit myself to the

local psych ward ;-)

I'm usually so tired and stressed when people ask for explanations of my biomed

routine that I say the doctor prescribed these treatments and they are necessary

- and if I'm really having a bad day I just say - sorry I don't have the energy

to explain this to you (for the umpth-teenth time) ;-)

Kim (Mommy going mental today)

3 yo ASD

2 yo many behavioural problems, probably high end ASD

Baby on the way (very hormonal today!)

More Venting! Slitely off topic

Hello All,

I can totally relate to all this stuff about people

questioning the diet. I do think most people think we are over controlling

April 20, 2006

Unfortunately, the reality is, the people who think SCD is the latest fad

treatment, are mired in a fad lifestyle delivered them via TV, robbing

themselves of any capacity of creative and free thinking. They see a news show,

someone else's statement, and without ever questioning the sources, take it as

truth and their own belief. What makes SCD special, people like my family, are

still here 19 months later, because it worked, is working, we tried it, we

investigated, we researched, we made up our minds. We stuck our necks out on a

logical proposition, and while seeming like a gamble in the beginning, we won

the motherload. When the therapists and doctors scorned me when I said that

Einstein started speaking at age 5 or 6, scoffing me, talking me out of such an

idea, their " educated opinions and ideas " may have sentenced my two sons to

NEVER talking. An idea, especially an idea memorized by rote has nothing to do

with taking care of patients in reality, seeing them as

people, not an idea. All these opinions and ideas that don't amount to much,

except alot of money. I rather buy quality food than constant medical care. And,

the diet for us, even eating all local, organic and free range, doesn't cost

anymore than any typical SADiet. I am in a venting mood today, because of having

to explain to a " concerned stranger " recently.

The only man I know who behaves sensibly is my tailor; he takes my

measurements anew each time he sees me. The rest go on with their old

measurements and expect me to fit them. ~ Bernard Shaw

Kim Authier Quinn wrote:

Hi Kim;

I totally hear you, and agree. I am SO sick of autism too, however I would

rather DIE trying to recover my child than to throw my hands in the air and quit

just because:

a) it is inconvenient

everyone in the world (with the exception of this group)seems to be against

this diet and sees it as the latest fad treatment

c) when trying to explain the strict adherence everyone looks at you like you

have three heads and are some zealous health nut who is harming your child with

your silly zealous beliefs

d) sometimes I wonder if I DO have three heads and should admit myself to the

local psych ward ;-)

I'm usually so tired and stressed when people ask for explanations of my biomed

routine that I say the doctor prescribed these treatments and they are necessary

- and if I'm really having a bad day I just say - sorry I don't have the energy

to explain this to you (for the umpth-teenth time) ;-)

Kim (Mommy going mental today)

3 yo ASD

2 yo many behavioural problems, probably high end ASD

Baby on the way (very hormonal today!)

More Venting! Slitely off topic

Hello All,

I can totally relate to all this stuff about people

questioning the diet. I do think most people think we are over controlling

April 20, 2006

Getrude,

I liked your comments. I often think so many are so determinedly

uninterested because they are determinedly disinterested in changing their

diet. It seems to be only the diabetes epidemic that is sounding an alarm..

Gertrude Snicklegrove wrote:Unfortunately, the

reality is, the people who think SCD is the latest fad treatment, are mired in

a fad lifestyle delivered them via TV, robbing themselves of any capacity of

creative and free thinking. They see a news show, someone else's statement, and

without ever questioning the sources, take it as truth and their own belief.

What makes SCD special, people like my family, are still here 19 months later,

because it worked, is working, we tried it, we investigated, we researched, we

made up our minds. We stuck our necks out on a logical proposition, and while

seeming like a gamble in the beginning, we won the motherload. When the

therapists and doctors scorned me when I said that Einstein started speaking at

age 5 or 6, scoffing me, talking me out of such an idea, their " educated

opinions and ideas " may have sentenced my two sons to NEVER talking. An idea,

especially an idea memorized by rote has

nothing to do with taking care of patients in reality, seeing them as

people, not an idea. All these opinions and ideas that don't amount to much,

except alot of money. I rather buy quality food than constant medical care.

And, the diet for us, even eating all local, organic and free range, doesn't

cost anymore than any typical SADiet. I am in a venting mood today, because of

having to explain to a " concerned stranger " recently.

The only man I know who behaves sensibly is my tailor; he takes my

measurements anew each time he sees me. The rest go on with their old

measurements and expect me to fit them. ~ Bernard Shaw

Kim Authier Quinn wrote:

Hi Kim;

I totally hear you, and agree. I am SO sick of autism too, however I would

rather DIE trying to recover my child than to throw my hands in the air and

quit just because:

a) it is inconvenient

everyone in the world (with the exception of this group)seems to be

against this diet and sees it as the latest fad treatment

c) when trying to explain the strict adherence everyone looks at you like you

have three heads and are some zealous health nut who is harming your child with

your silly zealous beliefs

d) sometimes I wonder if I DO have three heads and should admit myself to the

local psych ward ;-)

I'm usually so tired and stressed when people ask for explanations of my

biomed routine that I say the doctor prescribed these treatments and they are

necessary - and if I'm really having a bad day I just say - sorry I don't have

the energy to explain this to you (for the umpth-teenth time) ;-)

Kim (Mommy going mental today)

3 yo ASD

2 yo many behavioural problems, probably high end ASD

Baby on the way (very hormonal today!)

More Venting! Slitely off topic

Hello All,

I can totally relate to all this stuff about people

questioning the diet. I do think most people think we are over controlling

April 20, 2006

It always floors me when doctors say that there is no proof. Years ago I was

told the same

thing when I put my child on the gfcf (long before I heard of SCD). The biggest

proof that

a diet works is the fact that parents keep on doing the diet. Just think about

it in

comparison to other diets. Would a person continue on a diet to lose weight if

they did

not lose weight? How long would they continue of a diet that didn't work? 1

week? 2

weeks? probably 2 weeks at the most. Would they ever continue for 2 months?

for 2

years? No! If they weren't seeing results then they wouldn't continue with the

diet.

So the fact that parents put their kids (and sometimes themselves) on much

stricter diets

like SCD (or even gfcfsf) and are willing to do the work to keep the child on

the diet for

YEARS - would we do that if there were no results! No! If your doctor thought

about this

for even just 5 seconds, she could see the flaw in her thinking!

Carolyn

-- In pecanbread , " memoryalbumcreations " wrote:

>

> Oh, I agree! The " best " part was when I told Wesley's developmental

> pediatrician (what a laugh THAT title is) that we were starting this

> diet. She said that it's very difficult and expensive and there's

> been no proof that it works! NO PROOF! THERE'S TONS OF PROOF!

> ahem. I'm done now.

>

> --Mel

>

April 25, 2006

Hi Kim (and All). I am a " lurker " to coin someone else's phrase, reading as

much here as I can keep up with and marveling at all the knowledge and support

here. I've " watched " Antoinette's family start this journey and I plan to

participate more. I feel alittle guilty knowing so much about the regulars here

and you know nothing about me (yet), but I had to reply to your " vent " because I

could have written it myself.

It is amazing to me how no one else " gets it " , even the supportive family

members. I am tired of autism too. I can hear the sigh in that line when you

wrote it. I know about the countless hours scrutinizing-and creating- every

morsel that goes into his mouth. And the yeast. The stool reviews. The

supplements. I was so psyched about this diet when my son Clay started it in

August 2005 at 3 1/2 that I wanted to save the world--not just Clay. I talked

it up to anyone who'd listen. Surely they'd be drawn into this diet, being

bowled over by my enthusiasm, seeming knowledge, and almost guarantee that it

would help their child. Surely they say the difference in Clay, with his cute

little face making great eye contact, his laughter no longer maniacal, his WORDS

where there had been none. Guess what? I learned pretty quickly that most

people with ASD kids don't want to be saved by this diet because they perceive

it to be too hard to add to an overburdened life, or they tried GFCF for--like a

week--and didn't see any improvement. I used to get so depressed and frustrated

and mad at them for not doing this for their kids, and then I realized that they

have to want to be helped by this diet--I can't make them. So now, I kind of

" float " the SCD idea and Clay's progress out there and hope the curiosity gets

them to ask me more (which of course I happily provide). I find it makes me

less frustrated that way. And really, don't we all have enough on our plates

just trying to follow this diet " fanatically " , love and recover our children,

and keep up with all the posts on this list?!

So now that my " introduction " makes me look like a long-winded nut, I'll get off

the soap box. Just wanted to tell Kim that I loved your " vent " and really

relate to much of what I've been reading in the " shadows " the past 2 months or

so.

Tracey