Re: Finding a way to avoid overloaded Inbox

[Guest guest]

I'm glad that someone had treated this subject because this listserv

too often looks like a chat rather than just posting CHARGE matters

(I include myself in the guilty ones, of course..)

Maybe if there'll be a way of stablishing a kind of permament chat

where all those Happy Bdays and not relevant messages could go

through, apart from Sharon's suggestion of not simply

hitting " Reply " but being specific in the " Subject " line, perhaps

that way we wouldn't find 130 New Messages everyday, as it turns out

too tiresome and most of the times there are left unread..

Pat-

> >>>

> >>>> Kim and all,

> >>>> Although I am hundreds of messages behind, I am so reluctant

to

> >>>> unsubscribe again, as I learn so much from you...the parents

and also

> >>>> young adults with CHARGE...

> >>>> Thanks to you all for your enormous inspiration to hang in

there and

> >>>> continue to learn as much as possible...

> >>>> Sharon from West Oz

> >>>>

> >>>>> Kim-

> >>>>> You are perfectly equipped to bring that gut-level

understanding. You

> >>> are

> >>>>> gifted in bringing the knowledge to a level that regular

people can

> >>> get. So

> >>>>> keep learning and reaching out. You are making a

difference for all of

> >>> us

> >>>>> here and for all those you work with. These realizations

are huge for

> >>> me in

> >>>>> helping Aubrie become all she can be. Without the

understanding, she'd

> >>> have

> >>>>> no where to go. At our support group meeting last night,

other parents

> >>> were

> >>>>> talking about their kids with autism and similar

disorders. I think

> >>> often

> >>>>> even parents don't really get it. You have to step outside

of yourself

> >>> and

> >>>>> let go of your own guilt and ownership to truly understand

a child --

> >>>>> especially a child who is so outside of our natural realm of

> >>> understanding.

> >>>>> I'm rambling... enough...

> >>>>>

> >>>>> Michele W

> >>>>> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

> >>>>>

> >>>>>

> >>>>>

> >>>>> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> >>>>> http://www.imagestation.com/album/?id=2117043995

> >>>>>

> >>>>> Membership of this email support groups does not constitute

> >>>>> membership in the CHARGE Syndrome Foundation or CHARGE

Syndrome

> >>>>> Canada.

> >>>>> For information about the CHARGE Syndrome

> >>>>> Foundation or to become a member (and get the newsletter),

> >>>>> please contact marion@... or visit

> >>>>> the web site at http://www.chargesyndrome.org

> >>>>> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

> >>>>>

> >>>>> 8th International

> >>>>> CHARGE Syndrome Conference, July, 2007. Information will be

> >>>>> available at www.chargesyndrome.org or by calling 1-800-442-

7604.

> >>>>>

[Guest guest]

I'm glad that someone had treated this subject because this listserv

too often looks like a chat rather than just posting CHARGE matters

(I include myself in the guilty ones, of course..)

Maybe if there'll be a way of stablishing a kind of permament chat

where all those Happy Bdays and not relevant messages could go

through, apart from Sharon's suggestion of not simply

hitting " Reply " but being specific in the " Subject " line, perhaps

that way we wouldn't find 130 New Messages everyday, as it turns out

too tiresome and most of the times there are left unread..

Pat-

> >>>

> >>>> Kim and all,

> >>>> Although I am hundreds of messages behind, I am so reluctant

to

> >>>> unsubscribe again, as I learn so much from you...the parents

and also

> >>>> young adults with CHARGE...

> >>>> Thanks to you all for your enormous inspiration to hang in

there and

> >>>> continue to learn as much as possible...

> >>>> Sharon from West Oz

> >>>>

> >>>>> Kim-

> >>>>> You are perfectly equipped to bring that gut-level

understanding. You

> >>> are

> >>>>> gifted in bringing the knowledge to a level that regular

people can

> >>> get. So

> >>>>> keep learning and reaching out. You are making a

difference for all of

> >>> us

> >>>>> here and for all those you work with. These realizations

are huge for

> >>> me in

> >>>>> helping Aubrie become all she can be. Without the

understanding, she'd

> >>> have

> >>>>> no where to go. At our support group meeting last night,

other parents

> >>> were

> >>>>> talking about their kids with autism and similar

disorders. I think

> >>> often

> >>>>> even parents don't really get it. You have to step outside

of yourself

> >>> and

> >>>>> let go of your own guilt and ownership to truly understand

a child --

> >>>>> especially a child who is so outside of our natural realm of

> >>> understanding.

> >>>>> I'm rambling... enough...

> >>>>>

> >>>>> Michele W

> >>>>> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

> >>>>>

> >>>>>

> >>>>>

> >>>>> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> >>>>> http://www.imagestation.com/album/?id=2117043995

> >>>>>

> >>>>> Membership of this email support groups does not constitute

> >>>>> membership in the CHARGE Syndrome Foundation or CHARGE

Syndrome

> >>>>> Canada.

> >>>>> For information about the CHARGE Syndrome

> >>>>> Foundation or to become a member (and get the newsletter),

> >>>>> please contact marion@... or visit

> >>>>> the web site at http://www.chargesyndrome.org

> >>>>> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

> >>>>>

> >>>>> 8th International

> >>>>> CHARGE Syndrome Conference, July, 2007. Information will be

> >>>>> available at www.chargesyndrome.org or by calling 1-800-442-

7604.

> >>>>>

[Guest guest]

We can always create a separate list for those celebrations...I personally enjoy

reading those because I do not know about many of you but When my son was born I

was told that the hospital could legally bury him as " baby boy steinbrick " ...I

need not bother to name him...If and If being tentative, were to survive he

would make no contribution to society...So when there is a birthday it is a true

celebration that has beaten the odds...and become a wonderful happy

boy.Each milestone attains is worth a celebration... has far exceeded

anyones expectations. He is in the top 1/3 of his class .In a public school with

minimal outside support...No para. He is in a typical second grade program...he

does not sign and is well understood by everyone. is the exception to the

rule. does not have the behaviors many have that was just been

discussed...I had nothing to add however it was informative for me because

knowing that behaviors can arise at anytime , vary in

severity and in a wide variety..I have that knowledge....so when they do

surface I know where to look.

I was under the impression that this list was categorized as support....and

many times support just means seeing all those responses to an email that may

seem to others as overloading the inbox are a source of comfort...knowing that

there are other people who " get it " ...in CT there is a small number of Children

with CHARGE so finding local support is hard. I can not tell you how much I

have learned from those posting that may seem to others as unimportant. I have

been on listservs that have strict regulations on postings.. They are not warm

and inviting...I left this listserv before because I felt others were too harsh.

It is hard for me to understand how we can make the judgment of what is

relevant and what is not???? If it is posted is it not for a reason either to

search for an answer or provide insight because we do not necessarily find the

answers however we do find common ground...

Just my 2 cents because I enjoy reading all the posts...it keeps me well

grounded and informed

I would hate to see the format change...

Ellen mom to 8

[Guest guest]

We can always create a separate list for those celebrations...I personally enjoy

reading those because I do not know about many of you but When my son was born I

was told that the hospital could legally bury him as " baby boy steinbrick " ...I

need not bother to name him...If and If being tentative, were to survive he

would make no contribution to society...So when there is a birthday it is a true

celebration that has beaten the odds...and become a wonderful happy

boy.Each milestone attains is worth a celebration... has far exceeded

anyones expectations. He is in the top 1/3 of his class .In a public school with

minimal outside support...No para. He is in a typical second grade program...he

does not sign and is well understood by everyone. is the exception to the

rule. does not have the behaviors many have that was just been

discussed...I had nothing to add however it was informative for me because

knowing that behaviors can arise at anytime , vary in

severity and in a wide variety..I have that knowledge....so when they do

surface I know where to look.

I was under the impression that this list was categorized as support....and

many times support just means seeing all those responses to an email that may

seem to others as overloading the inbox are a source of comfort...knowing that

there are other people who " get it " ...in CT there is a small number of Children

with CHARGE so finding local support is hard. I can not tell you how much I

have learned from those posting that may seem to others as unimportant. I have

been on listservs that have strict regulations on postings.. They are not warm

and inviting...I left this listserv before because I felt others were too harsh.

It is hard for me to understand how we can make the judgment of what is

relevant and what is not???? If it is posted is it not for a reason either to

search for an answer or provide insight because we do not necessarily find the

answers however we do find common ground...

Just my 2 cents because I enjoy reading all the posts...it keeps me well

grounded and informed

I would hate to see the format change...

Ellen mom to 8

[Guest guest]

We can always create a separate list for those celebrations...I personally enjoy

reading those because I do not know about many of you but When my son was born I

was told that the hospital could legally bury him as " baby boy steinbrick " ...I

need not bother to name him...If and If being tentative, were to survive he

would make no contribution to society...So when there is a birthday it is a true

celebration that has beaten the odds...and become a wonderful happy

boy.Each milestone attains is worth a celebration... has far exceeded

anyones expectations. He is in the top 1/3 of his class .In a public school with

minimal outside support...No para. He is in a typical second grade program...he

does not sign and is well understood by everyone. is the exception to the

rule. does not have the behaviors many have that was just been

discussed...I had nothing to add however it was informative for me because

knowing that behaviors can arise at anytime , vary in

severity and in a wide variety..I have that knowledge....so when they do

surface I know where to look.

I was under the impression that this list was categorized as support....and

many times support just means seeing all those responses to an email that may

seem to others as overloading the inbox are a source of comfort...knowing that

there are other people who " get it " ...in CT there is a small number of Children

with CHARGE so finding local support is hard. I can not tell you how much I

have learned from those posting that may seem to others as unimportant. I have

been on listservs that have strict regulations on postings.. They are not warm

and inviting...I left this listserv before because I felt others were too harsh.

It is hard for me to understand how we can make the judgment of what is

relevant and what is not???? If it is posted is it not for a reason either to

search for an answer or provide insight because we do not necessarily find the

answers however we do find common ground...

Just my 2 cents because I enjoy reading all the posts...it keeps me well

grounded and informed

I would hate to see the format change...

Ellen mom to 8

[Guest guest]

>>.. what is relevant and what is not????

>>Just my 2 cents because I enjoy reading all the posts...it keeps

me well grounded and informed

Ellen mom to 8

>

What is relevant and what is not:

-Sharing what your CHARGE child is achieving, struggling against,

suffering, enjoying.. etc.

That **IS** relevant.

-Posts like: " LOL, that was funny.. " , " it's raing here.. " etc.

They are **NOT**.

If you enjoy reading, as you said, ALL the posts! that means that

you spend AT LEAST 2 or 3 hours a day just for this matter.

Me, I simply don't have the time as I have a child to mind (and it's

just one! Imagine if you have more!!), and it gets hard to sort out

matters that have some REAL information within among 130 post a day.

This is my humble opinion, that, of course, might not be shared by

everyone here..

Pat-

[Guest guest]

Hey you guys, this discussion is really great......just another wonderful

aspect of this list - respect of everyones thoughts! I know we will get

this worked out. Sally (Mom to Andy, 24)

>

> This is my humble opinion, that, of course, might not be shared by

> everyone here..

[Guest guest]

Ellen,

I agree that all aspects of our list are important. I would not like formal

listserv rules here, but I think guidelines for e-mail listservs are

valuable; for many this may be their first experience with a list. Reading

guidelines would be recommendations for list etiquette - meaning being

thoughtful of other member's needs as well as your own - but they would

remain guidelines, not something policed by anyone. And if anyone had a

concern about content of a post - obviously that should only go to the one

person, in a polite, manner, not to the entire list. Just my 2 cents.

I am really struggling, I so want to stay on the list, but don't know how to

do it part way. When I read Sally's post raising concern about keeping up

with the list and then Sharon's, I thought I would start a conversation, to

see if just the awareness could shape it a little, without hurting anyone's

feelings. I am simply searching for solutions. I have not done well with

digest and I have not done well just reading some posts- my own compulsions

come to bear, I open each email and read it, because I do care about all the

relationship stuff as well, and there is important info in each one. It is

just my day does not have the hours to keep it up.

Kim

> It is hard for me to understand how we can make the judgment of what is

> relevant and what is not????

[Guest guest]

Ellen,

I agree that all aspects of our list are important. I would not like formal

listserv rules here, but I think guidelines for e-mail listservs are

valuable; for many this may be their first experience with a list. Reading

guidelines would be recommendations for list etiquette - meaning being

thoughtful of other member's needs as well as your own - but they would

remain guidelines, not something policed by anyone. And if anyone had a

concern about content of a post - obviously that should only go to the one

person, in a polite, manner, not to the entire list. Just my 2 cents.

I am really struggling, I so want to stay on the list, but don't know how to

do it part way. When I read Sally's post raising concern about keeping up

with the list and then Sharon's, I thought I would start a conversation, to

see if just the awareness could shape it a little, without hurting anyone's

feelings. I am simply searching for solutions. I have not done well with

digest and I have not done well just reading some posts- my own compulsions

come to bear, I open each email and read it, because I do care about all the

relationship stuff as well, and there is important info in each one. It is

just my day does not have the hours to keep it up.

Kim

> It is hard for me to understand how we can make the judgment of what is

> relevant and what is not????