Re:messy personal stuff/MODERATOR PLEASE READ.

[Guest guest]

Hi Nori and all Members,

Beth here. I am one of the moderators but not the owner of the

list. Joan had a rare moment to post yesterday which was wonderful.

In response to your post, I'd like to tell you a little more about

how the list works (most of the time) and then you can decide how you

can best utilize it for the information you are looking for.

First of all, we do *not* moderate posts. That would take forever

and most likely suffocate the life-breath of this list. Members are

pretty good about self- monitoring and do not hesitate (such as you

just did) to let others know when something isn't settling right with

them. From time to time we might send out reminders when something

appears to be a potentially divisive topic that threatens the

well-being of the list.

Second (probably really the first) is that we are a virtual community

of 1103 members. For those of you who attended large high schools or

belong to a large place of worship, you know that large communities

have a way of forming smaller groups, usually in an almost

unconscious way. It is necessary in order to make sense out of all

the personalities. There is no way that any one person can expect to

feel close to more than a certain number of people at a time. I know

I have given up trying to keep everyone straight; there are just too

many details for me to process and keep track of who is who.

Third, two summers ago, Margaret Roof hosted the first ever DS-autism

picnic for our list. There were about 30 families who attended. I

*KNOW* that many stronger bonds have formed among that group of

members. Having faces to go with the stories makes it easier to

connect.

Fourth, we have been a community since before we were a Yahoo group.

Some of the earliest members found each other on the DOWN-SYN list as

early as 1994 or 95; I think there were two other list servers that

Joan used before settling on Yahoo.

Fifth, there are a certain number of members who are literally

trapped at home in order to keep their child with DS-autism

safe/healthy/alive/learning/ etc. They might have no way to access

help; the school system might be deplorably inadequate; it might be

impossible for their child to even make a trip to the grocery store

with them. For these folks, this list IS their tie to adult

conversation and a way to connect with others who understand.

That's the quickest way I can think of to sum up the challenges that

any new member faces due to the size and mission of this virtual

community.

Now, for some strategies for you and for any member who is feeling

the results of our growing pains:

1. Ask your burning questions. Share a brag. Tell us again about

your family, your geographic location, and anything else that can

tell us where you are on this journey.

2. Read the archives. Pop into the archives with a topic search, or

a list member name, and see more about their history with the list or

how often certain subjects come up. Certain topics that were " hot "

five years ago rarely come up now. And there are new alternative

therapies that come up that were not in the conversation each last

year.

3. Poke around in the photo albums. And please feel free to post

your family's photos there as well. Just one more way to feel

connected.

4. Take advantage of the other features on our group's website

homepage, such as links and files. Most importantly, read the back

issues of Disability Solutions that are there too, especially Volume

III, issue 5 & 6 on the dual dx (if you haven't done so already).

5. A SPECIAL NOTE TO ALL MEMBERS:

Please be thoughtful about your posts. Sometimes there is

just TMI (Too Much Information, usually personal) in a post to all

1103 members when you might really only care that two members know

the particular news that you have to share. That doesn't mean that

you should start massive posting off the list, but rather, use good

judgment about what the whole list needs to know.

Likewise, PLEASE CUT AND PASTE MORE JUDICIOUSLY. This keeps

coming up so I will keep sending reminders. There are a lot of posts

to scroll through. On days when you just have a minute to check to

see if someone replied to your question about reaction to a flu shot

(timely example) you don't need to be endlessly scrolling through

screen after screen of an entire thread's worth of posts that were

never edited.

Hope this helps. Thanks to all who have been responding. And Nori,

keep posting! How is your daughter doing this school year?

God Bless Us, Every One!

Beth Pete's Mum (He's 18; we're in the Columbus Ohio outerbelt)