Re: Shooting the Messenger

[Guest guest]

I guess I don't really understand your point in either message. It

seemed that in your first message you were trying to accuse this

group of thinking they/we have all the answers and that you feel

noone will unlock the key of autism. The posts I read in response to

this were not flames at all but opinions/facts that many of our

children, as well as individuals on this board ARE recovering and we

all hope, at least, that they will be fully recovered at some point.

I do not understand how your post was at " the painful expense " of

your son's health?? I don't think anyone here felt humiliated. I

truly don't understand what you are saying. We are all here looking

to help our children and most of us on this board are finding help in

enzymes. If that is not for you or your child then that is fine.

Hopefully you will find whatever help it is you are looking for.

> As the mother of a 3.6 year old autistic son I am genuinely happy

for

> those whose children do not suffer from the symptoms that I

mentioned

> in my message " reaching conclusions " . It is my fervent wish that

> none of our kids will suffer these problems. However, many do. I

> fail to comprehend how or why the information that I shared (at the

> painful expense of my own son's health) should cause humiliation to

> fellow parents.

[Guest guest]

>>> However, many do. I fail to comprehend how or why the

information that I shared (at the painful expense of my own son's

health) should cause humiliation to fellow parents.

I am completely lost on this too. I am not sure what the

word " humilation " refers to at all. Was there a question in here

somewhere that got overlooked? Are there particular symptoms you

were interested in discussing? Reducing the suffering of anyone even

a bit is worthwhile.

.

[Guest guest]

-My son is also taking enzymes, and doing well on them. He too, is

making great gains, and a lot of good info has come from this and

other internet groups, and I too hope for a full recovery for my

child. The word humiliation came from the groupmember " tiredmama "

who said that members should not feel humiliated for seeking

answers. My only point was a word of caution to fellow parents to

realize that each child is an individual case and symptoms that may

appear the same as those described by other parents may actually

point to different problems as those suffered by their children and

that those dispening advise are not infallible and should be more

humble about their sense of ultimate knowledge and truth. At first I

was too quick in comparing my child's symptoms with others and

applying ready made solutions without doing sufficient research - at

great expense to my son's health. Now I am more cautious, listen

closely to my DAN doctor, and carry out many lab tests on a regular

basis. As for the other parents who have made great improvements

with their kids - I bet they too consult DAN doctors and give these

doctors at least as much credit as they do their fellow groupmembers.

o

-- In @y..., " jornmatt " <kjorn@t...> wrote:

> >>> However, many do. I fail to comprehend how or why the

> information that I shared (at the painful expense of my own son's

> health) should cause humiliation to fellow parents.

>

> I am completely lost on this too. I am not sure what the

> word " humilation " refers to at all. Was there a question in here

> somewhere that got overlooked? Are there particular symptoms you

> were interested in discussing? Reducing the suffering of anyone

even

> a bit is worthwhile.

>

> .

[Guest guest]

--, having just read your follow up post I decided to go back

and re-read your original post and my response... I now understand

that maybe you were frustrated at the attempts to understand and help

your child and maybe you were feeling overwhelmed and if that

is the case THen I apologise for a second time for misunderstanding

your original post. It was not however, clear to me (the intent) until

I read your recent post. We all can have trouble conveying what we

mean when we are emotional

Patti

- In @y..., " Valeri Dugan " <valeri@d...> wrote:

> Having read just a part of this maybe I shouldn't respond, but...

>

> I am on a list regarding a childhood illness not associated w/

autism. The

> parents on that list are so ignorant that it sometimes makes me feel

sick to

> my stomach. One of the things that I am grateful for is that the

parents of

> ASD kids are, by and large, very educated and informed. Even when we

> disagree we usually can back up our position.

>

> Which is not to say I don't get irritated sometimes, but at least I

get food

> for thought.

>

> Valeri

>

> [ ] Re: Shooting the Messenger

>

> I guess I don't really understand your point in either message. It

> seemed that in your first message you were trying to accuse this

> group of thinking they/we have all the answers and that you feel

> noone will unlock the key of autism. The posts I read in response to

> this were not flames at all but opinions/facts that many of our

> children, as well as individuals on this board ARE recovering and we

> all hope, at least, that they will be fully recovered at some point.

> I do not understand how your post was at " the painful expense " of

> your son's health?? I don't think anyone here felt humiliated. I

> truly don't understand what you are saying. We are all here looking

> to help our children and most of us on this board are finding help in

> enzymes. If that is not for you or your child then that is fine.

> Hopefully you will find whatever help it is you are looking for.

>

>

> > As the mother of a 3.6 year old autistic son I am genuinely happy

> for

> > those whose children do not suffer from the symptoms that I

> mentioned

> > in my message " reaching conclusions " . It is my fervent wish that

> > none of our kids will suffer these problems. However, many do. I

> > fail to comprehend how or why the information that I shared (at the

> > painful expense of my own son's health) should cause humiliation to

> > fellow parents.

>

>

>

>

>

[Guest guest]

--, having just read your follow up post I decided to go back

and re-read your original post and my response... I now understand

that maybe you were frustrated at the attempts to understand and help

your child and maybe you were feeling overwhelmed and if that

is the case THen I apologise for a second time for misunderstanding

your original post. It was not however, clear to me (the intent) until

I read your recent post. We all can have trouble conveying what we

mean when we are emotional

Patti

- In @y..., " Valeri Dugan " <valeri@d...> wrote:

> Having read just a part of this maybe I shouldn't respond, but...

>

> I am on a list regarding a childhood illness not associated w/

autism. The

> parents on that list are so ignorant that it sometimes makes me feel

sick to

> my stomach. One of the things that I am grateful for is that the

parents of

> ASD kids are, by and large, very educated and informed. Even when we

> disagree we usually can back up our position.

>

> Which is not to say I don't get irritated sometimes, but at least I

get food

> for thought.

>

> Valeri

>

> [ ] Re: Shooting the Messenger

>

> I guess I don't really understand your point in either message. It

> seemed that in your first message you were trying to accuse this

> group of thinking they/we have all the answers and that you feel

> noone will unlock the key of autism. The posts I read in response to

> this were not flames at all but opinions/facts that many of our

> children, as well as individuals on this board ARE recovering and we

> all hope, at least, that they will be fully recovered at some point.

> I do not understand how your post was at " the painful expense " of

> your son's health?? I don't think anyone here felt humiliated. I

> truly don't understand what you are saying. We are all here looking

> to help our children and most of us on this board are finding help in

> enzymes. If that is not for you or your child then that is fine.

> Hopefully you will find whatever help it is you are looking for.

>

>

> > As the mother of a 3.6 year old autistic son I am genuinely happy

> for

> > those whose children do not suffer from the symptoms that I

> mentioned

> > in my message " reaching conclusions " . It is my fervent wish that

> > none of our kids will suffer these problems. However, many do. I

> > fail to comprehend how or why the information that I shared (at the

> > painful expense of my own son's health) should cause humiliation to

> > fellow parents.

>

>

>

>

>

[Guest guest]

As for the other parents who have made great improvements

with their kids - I bet they too consult DAN doctors and give these

doctors at least as much credit as they do their fellow groupmembers.

Actually we do not use a DAN and our family doctor is mostly useful

in that he lets me do what I want and signs the necessary papers. I

would be lost completely without the internet and other parents. I

find our groupmembers to be the most helpful and informed parents out

there and wouldn't trade them for 10 DAN's. I agree with your point

that all ASD children are different and unique. All children are

different and unique anyway and I guess that is what makes our group

so special-we are helping many different families with many

situations. Sorry if you were misunderstood. Best of luck.

> > >>> However, many do. I fail to comprehend how or why the

> > information that I shared (at the painful expense of my own son's

> > health) should cause humiliation to fellow parents.

> >

> > I am completely lost on this too. I am not sure what the

> > word " humilation " refers to at all. Was there a question in here

> > somewhere that got overlooked? Are there particular symptoms you

> > were interested in discussing? Reducing the suffering of anyone

> even

> > a bit is worthwhile.

> >

> > .

[Guest guest]

Now I am more cautious, listen

> closely to my DAN doctor, and carry out many lab tests on a regular

> basis. As for the other parents who have made great improvements

> with their kids - I bet they too consult DAN doctors and give these

> doctors at least as much credit as they do their fellow

groupmembers.

Don't bet too much money, because you will lose.

If I had listened to any of the doctors who have seen my son, he would

be living in an institution. All of them said he was a genetic case,

very low functioning. Instead, I listen primarily to other parents,

and now my son no longer qualifies as autistic.

I have never taken my son to any doctor since his autism diagnosis,

except when he was sick. I have never done any tests. It is good

when people have this option and a doctor who will be open to things.

But my son no longer qualifies as autistic, and it is DESPITE doctors

that he is this way now. It is ENTIRELY from the internet, local

friends, books, and other parents.

I am glad you have a good doctor. I am also glad I have other parents

to ask my questions. Because my son has made great improvements, and

I have never consulted any doctor, DAN or otherwise.

Dana

[Guest guest]

> I have never taken my son to any doctor since his autism diagnosis,

> except when he was sick. I have never done any tests. It is good

> when people have this option and a doctor who will be open to

things.

> But my son no longer qualifies as autistic, and it is DESPITE

doctors that he is this way now. It is ENTIRELY from the internet,

local friends, books, and other parents.

Thank you for saying this. I took my soon to be three year old son

to a neurologist shortly after his second birthday only for the

purpose of having him diagnosed, so he could receive therapy

services. That visit cost me $158 out of pocket, AFTER insurance. I

was supposed to schedule a follow up visit for 6 months later. I

never made that appointment, as what I have learned online (mostly

through this group) has helped him so much more than what I have been

told by any doctor. In the future, I may take him for some testing,

but so far, he has made so many improvements with enzyme use and

other supplements, that may not be necessary. Like you said, it's

great that that option is there, but at this time, I don't feel the

need to go that route. Your statement made me feel better about my

decisions, so again, thanks for making your comments, and letting me

know that I'm not alone!!

[Guest guest]

> I'm not being rude, but if he hasn't been to a doctor, how do you

know that

> he no longer qualifies as autistic? Did you do the CHAT test? Did

someone

> else evaluate him?

I have done ATEC with him. Before interventions he was 98. Now he is

14. He acts like a typical 3 yo child, altho he is age 6 now. I will

have him formally re-diagnosed when he is developmentally more like

age 4 and has more language skills, so probably next year.

Dana