Hijacked list - (was Tanner)

[Guest guest]

Thanks for posting this . I complained onlist a few months ago

and nothing has changed. I don't mind the occassional mention of DAN

protocols and diets. It's good to know what has helped other kids.

I don't need to know every second of that child's life and have

their " method " analyzed on an hourly basis.

I have stopped referring people to this group and I think that's

ashame. The group had a lot to offer. Now I only check the group

occassionally on the website and pick the posts that appear to have

some " meat " to them or an issue I might know something about. The

apraxia specific information has gotten lost in the mix over the last

6 months or so.

If people want to go indepth on dietary issues or other DAN

protocols, it's probably more apropriate for them to start a new

group or join existing groups for the specific interventions. I

don't have any problem with posting links to the new group

periodically if it will get the rambling off this list.

M.

>

> Liz your post is extremely misleading. You again are the exception

> to the rule. Nobody ever said that keeping it simple to therapy and

> fish oils and vitamin E works for every child here -it works for

> just 'about' every child here. Yes there is that 7% or whatever -

but

> reading your many messages one would believe that just about all the

> kids here need to explore a host of other things.

>

> I can't disclose the details but soon all will know that the fish

> oils and vitamin E alone work for I believe it was either just over

> or just under 90%. You are one of the few people that post very

> frequently -sometimes answering the exact same message 4 or 5 times

> to the same person

>

> I do want you to be aware that off list I have received numerous

> complaints from parents who have been members here for years that

> believe many of the posts in the past few months

> are " upsetting " " strange " " freakish " and that they " don't recognize

> the group " which is why I keep posting archives since many of them

> are uncomfortable with posting their views here anymore because

> they'll get slew of responses from two or three people -the same

ones

> that seem to have " taken over " Below is just one example without

> using the person's name. We don't censor on this group so 'all' can

> share and when people like the way the group is now or don't like it

> I for one wish more would speak up rather than the same 3 people.

As

> I've said recently it's a handful of parents in this group of

> thousands who in the past few months are posting 90% of the

> messages. And it appears that those few people don't have kids that

> fit into the norm.

>

> recent off list we received:~~~~~~~~~~~~~~

>

> " The list has been hijacked. I don't read the digests any more---I

> scan the titles, see the subject lines and authors and hit delete.

> (Gotta be on the lookout for news from Dr. and her grant

> seeking, after all).

>

> I hope someone doesn't hurt or kill their child looking for a quick

> fix. I think Dr. and people like her investigating an immune-

> response link and a malabsorption link are creative thinkers. But

> they support the scientific method, not preying upon parents

> desperate to " fix " things. I am grateful for the tone I found on

> this

> list when I was looking for info years ago when our child was first

> diagnosed with apraxia. I'd be lost logging on today for the first

> time and turned off by the freakishness.

>

> I'd like to suggest that a general intro message be posted

> periodically giving some basics about The Late Talker, therapies

> (PROMPT, KAUFMANN, et al), omegas and Vit. E, and maybe some EI/IEP

> intro. Something called " New to Apraxia? " or something like that

> that

> ties in with what you see on your website or however most people

> find

> the list.

>

> As it is, it's an echo chamber among a handful of people.

>

> Good to hear your child is thriving. "

>

> ~~~~~~~~~~~~~~~~~end of snip

>

> I believe the suggestion for " new to apraxia " is a great idea and

> will send out the new member archive next.

>

> =====

>