Re: Enzymes and Autism Board

[Guest guest]

Joni, feel free to email me any time privatley thanks for your thoughts

kimberly

[Guest guest]

At the risk of being flamed, I feel that I must speak on this. I was gone

for the last week and so am just now catching up on my email. For the most

part I am a lurker, reading the posts to gain what knowledge I can. Is

there a rule on this board that a person's posts are limited or the total

amount of posts limited? If not, then I see no reason that Joni shouldn't

post whenever she wants if it adds to the discussion at hand. I for one

have found her posts very interesting and others have posted just as often

in the past with censure.

Just one person's opinion.

Elaine in GA

At 02:54 PM 8/26/01 -0400, you wrote:

>Sorry, I had no idea there was a limit to postings. Nobody had informed me

>of this. I thought more than one person could always answer a question if

>they wanted to.My sincere apologies. Autism and education is just my

>passion. I will certainly respect the wishes of this group. I didnt know so

>many people were complaining. But thanks for informing me. I will abide by

>your suggestion... Sincerely Joni

>

>

>

>

>

> >From: " Kelley " <ckelley100@...>

> ><mbmrja@...>

> >Subject: Enzymes and Autism Board

> >Date: Sun, 26 Aug 2001 13:43:05 -0500

> >

> >Joni,

> >

> >As co-moderator of the board, it is my obligation to

> >be consistent with advising members of the intent of the board and

> >enforcing the Terms of Service. DeFelice and I have received

> >complaints about the number of messages you have posted. The purpose of

> >the board is to offer everyone the opportunity to participate. Some are

> >interpreting your numerous posts as monopolizing the board. For members

> >viewing the board as e-mail, this situation may be particularly

> >distressing.

> >

> >I welcome and even encourage you to continue to participate on the enzyme

> >board, but emphasize your obligation to respect the other over-600 members.

> >

> > Kelley

> >co-moderator

> >

> >

> >

> >

[Guest guest]

I also found her posts interesting, but as moderator, I have to try

to please everyone and maintain the guidelines of .

As I later said to Joni in an e-mail, I hope she will continue to

post here. She has an impressive store of knowledge and great

enthusiasm for what our purpose is here - to help others help their

children.

Thanks so much for sharing your thoughts, we are not about censoring;

just keeping the intent of the board intact. Please feel free to e-

mail me with any questions.

Kelley

[Guest guest]

Elaine,

Hopefully no one will ever have to worry about being flamed here (of

course I realize this is may be over-optimism on my part). There is

no limit or number of allowed postings and it wasn't meant to be

taken that way. The exchange between and Joni was supposed to

be a private note as part of our moderator responsibilities in

lending some guidance to the proceedings and seems to have drifted

into the public area. When we receive more than a handful of messages

with concerns on one particular topic, we make a point to let this be

known to any particular person(s) involved so they will be aware of

the situation. That's all. The idea is to handle it early and off-

board so that the matter doesn't become a huge distraction. Usually

with a heads-up, the situation resolves itself. I myself have come

across as a " bull in a china shop " on at least one board before I

realized what was going on (not that I am saying this is what Joni is

doing).

I invited Joni to join our group after reading some of her posts on

the autism treatment group a few months back. She has extensive

experience in many areas. I am glad that you are finding the

information useful and it is our intention that all voices get to be

heard, which is one of the basic reasons this board was started.

.

[Guest guest]

As someone new to the list I do not want to get into trouble right off but I

was wondering what the limit to posting is? I really enjoyed Joni's

information and cannot understand anyone let along a whole bunch of people

complaining about it.

Betty

grandmother and guardian to

9 yo dx'd ADHD, possibly bipolar/RAD, asthma

Evan 7 yo dx'd nonverbal autism

5 yo dx'd ADHD, possibly bipolar/RAD

----- Original Message -----

From: Elaine <kbrock@...>

> At the risk of being flamed, I feel that I must speak on this. I was gone

> for the last week and so am just now catching up on my email. For the

most

> part I am a lurker, reading the posts to gain what knowledge I can. Is

> there a rule on this board that a person's posts are limited or the total

> amount of posts limited? If not, then I see no reason that Joni shouldn't

> post whenever she wants if it adds to the discussion at hand. I for one

> have found her posts very interesting and others have posted just as often

> in the past with censure.

>

> Just one person's opinion.

>

> Elaine in GA

>

[Guest guest]

Joni is still free to post. There is no limit to the number of posts

and I probably should have let the situation go. It was a bad call

on my part and I hope you understand.

Feel free to e-mail me or post here if you have any questions.

> As someone new to the list I do not want to get into trouble right

off but I

> was wondering what the limit to posting is? I really enjoyed Joni's

> information and cannot understand anyone let along a whole bunch of

people

> complaining about it.

>

> Betty

> grandmother and guardian to

> 9 yo dx'd ADHD, possibly bipolar/RAD, asthma

> Evan 7 yo dx'd nonverbal autism

> 5 yo dx'd ADHD, possibly bipolar/RAD

> ----- Original Message -----

[Guest guest]

> > Betty

> > grandmother and guardian to

> > 9 yo dx'd ADHD, possibly bipolar/RAD, asthma

> > Evan 7 yo dx'd nonverbal autism

> > 5 yo dx'd ADHD, possibly bipolar/RAD

Betty,

Wow, you certainly are rising to the occassion taking care of three

grandchildren! My grandmothers assisted in raising the 4 of us and

this had a great influence on our well-being. I hope you find

something useful here. Could you share some of the things that have

been successful with your grandsons?

.

[Guest guest]

, I would have to say that as of right now the main thing that I have

found that has been successful for Evan is the gfcf diet and his Risperdal.

He was put on Risperdal a month after he started the diet and I gave all the

credit to the diet for his behavior and took him off the Risperdal. As

soon as it was out of his system, he went off the wall with his behavior. I

had slowly taken him off it so it took a bit for the behaviors to show up.

We could not take him to the store without him freaking him out. He

obsesses on looking into cars and checking out the different rooms at the

store. Off the Risperdal, he quit working with his teacher and aides and

started fighting them when they wanted him to do any thing. That was this

summer. After two months back on his Risperdal and it being upped to 1 mg 2

x daily he is again doing his work at school. On the play ground he was

playing with the others and not just sitting on top of the play equipment,

rocking.

Today they moved into a new room at a new school and I am anxious to find

out how he took the move. They do not have a restroom in their class now

and I noticed that he had to have a change of clothes.

With the other boys, I have been fighting for a proper dx. They both are on

Adderall which their pediatrician does not mind increasing and is on

Paxil. Neither of these are the drug of choice if they are indeed Bipolar.

I have been wondering if perhaps the enzymes might not be good for them

also. and have been put into special classes this year with

fewer children. So far it has been ok for (it is 's first year)

but then the year just started.

grandmother and guardian to

9 yo dx'd ADHD, possibly bipolar/RAD, asthma

Evan 7 yo dx'd nonverbal autism

5 yo dx'd ADHD, possibly bipolar/RAD

Could you share some of the things that have

> been successful with your grandsons?

>

> .