Hi

        Funny you should bring this up. I was about to but for a different
reason!

        Friday evening,  I got a private post from someone telling me to
take my private conversations offlist, they were an annoyance and abuse of
their trust. I managed to get myself in more hot water becasue they hadn't
identified themselves beyond an e-mail address I didn't recognize it. So I
simply ask who they where and how I had done this terrible thing. And got
back reply - I should know who they where and they where their only for info
to help their son and the rest of it was a waste of their time.  I had time
to chill out between e-mails and my third reply to them was - ( with a few
changes to protect the innocent
"""
              Okay let me try this again. From not just having my toes
stomped on point of view. C-Palsy's purpose is not the same as CPParent and
OUR-KIDS. Which are soully devoted to the constant support and knowledge for
the Parents - They are aboslutely perfect for what they do. They are
wonderful for parents. C-Palsy is a list for People with CP, Adults and
Teenagers. Yes, there are those of us parents on the list - to find help for
our kids by hearing from those who have it. But That is not its primary
function. I took over the list when it was orphaned so they could still have
their list. One of the things we discussed then was the social aspect. And
its okay.  They get to talk about their day, their frustrations etc. Ken is
having problems aging - CP related problems! Kyle is Ialso having some
regression aging problems (?), Bobby thankful has good things to share with
us, and at 62 has lots of good life experience. I did spend time with Ken -
with aging links and
general disability links, and some just teasing my friends - who are having
a not so good time with their bodies. Kyle did the day before - write me and
say he had just realized  about the use of the bandwideth and the silliness
and I said - don't worry - it doesn't happen often, and its good for folks
to let of steam. I personally burn out on CPParent and Our-Kids and the
constant endless bad stuff. I have no idea about how old your child is  but
this list is for him - even if we have 10 years to hear from him. And I
administer the list for the them. The ones who sit home - and use
mouthsticks, the ones who can walk - young and old. I am hoping that perhaps
in explaining the list's purpose you will learn to blow off the silliness.
CPParent and OUR-KIDS have a gazillion posts everyday - and they are all
serious or flame wars over differences of opinions, etc. I encourage a sense
of community on C-Palsy. I think there is a wonderful absence of the flaming
stuff - in its place - we have silly people who are friends.   I just did
what you did to me on another list - boy you don't want a replay of what I
heard!! I am hoping by explaining the differences you can be less annoyed
and simply sigh and delete. I try to make this list as nice as possible -
Some folks who have been here for  awhile  - as in longer than  I, are the
major perpetrators in no CP related dicussions."""

       Well, I got my point across - but we still aren't having a meeting of
the minds - I figure its time to compromise and talk to the list. I do not
want to change the social aspect of the list - I am sure there are those who
read the asides and enjoy them - even if they chose not to particpate -
others are in another time zone and can't partipate until later - I did open
the chat space months ago and maybe Betty can set-up schedules for chats -
People can delete if the subject line is used - ( as this person was more in
the delete the all that person's e-mail mode - but they pointed out  - then
they loose good stuff too). Here is where the subject line comes in - a
/kidding or /humor or /now whatever  in the subject line would be nice - on
the other hand everyone so far who has requested a subject line change -
ain't never done it for their subject change e-mail. I do remember Bob
asking us this and and then promptly blowing it himself. I don't have a
great solution - maybe you guys do. I am past the point where Amber's CP is
the focus of my life, yes, for several - maybe 4 years this dominated my
life. Then I realized single mindedness is a double edged sword and my kid
would benefit more from having a well rounded Mom and life than a CP
centered ones. I do believe when we had the parent roast - several folks
felt like this was all their parents saw about them and the need to fix
them. So the social aspect is fine - in fact I enjoy it, and its why I know
the members I know, and why I feel the list is community and not just
another place for info.  I must say - I am sorry that as list Administrator
3 of 4 - I don't know all of you - if you are not a "frequent" poster or I
haven't a personal conversation with you,  I just don't know you - unless I
noticed when you joined or I know you from another list.

            I would also be curious to know - if anyone else has been
bothered by this ability of ours to flex our intellect and be friends and
digress and joke and share.  Also could be our horsing around hit on what's
a bad day for this person - I have days like that - things roll off until
its a bad day then I nuke someone. I don't think any of us go out of our way
to be bad - and I must admit - I said something like this to a list I have
been on for  awhile and some newbies joined and took over and after 88 one
liner messages between two people - I said - take it offlist and they and
their new frinds - promptly told me - if you don't like - leave or go to
digest - no one else is complaining. Well, it was a temptess in a teapot -
obviously no one can keep this up day after day and it settled back down -
but I am now the "bad" guy. Amusingly enough the next Sunday the Minister
talked about - what we say and do - and that even before we have said
anything or done anything - 20% of the people will automatically disagree
with us. I simply see desenters as the 20% - grin and move on. No heart burn
here!! Waiting to here from you guys!!

                          Brightest Blessings
                               Trisha