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Hemiplegia
Hemiplegic Cerebral Palsy
Hemiparesis
Abbreviations used
on HK list
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Volunteers
will help match you with other families in your state or country. Visit
our Local Support Group for families of
Children who have Hemiplegia.
Infant
and Childhood Stroke are two causes of hemiplegia or hemiplegic cerebral
palsy. Visit our sister website, Kids
Have Strokes, to learn more.
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Hemi-Kids
Email List Guidelines
Welcome to the
Hemi-Kids list! There are a few things that you need to know
before posting a message to the list.
If you've never used a
listserv list, you need to know that all the messages that you
send to the list will go out to all 1400+ people who are subscribed
to the list. You'll also receive each message that they send
to the list. Digest users receive the daily messages in one
big email per day.
NEW MEMBER MESSAGES
REVIEWED
New member messages are reviewed and then sent to the list. Send
your first messages to Hemi-Kids@listserv.icors.org
PURPOSE OF THE LIST
The purpose of the List is to provide a forum for parents to share
their thoughts, ideas, support, advocacy tips, stories, and more.
The following are a few guidelines that can make participation in
the list easier and more enjoyable. With the growing number of
daily messages, it has become more important to keep the
information on the list pertinent to the group as a whole. This
helps in not cluttering up mailboxes and wasting the valuable time
of the parents on the list.
RESPECT FOR ALL
On this list, we all have the right to be respected. As caregivers
of our children, we are under a tremendous amount of stress in
dealing with daily living, medical, therapeutic, school and social
issues. No one needs to have his or her parenting styles or
decisions challenged on or off the list. Treat others on the list,
as you would want them to treat you.
There are many ways to parent a child and many people on this list
may have different opinions from your own. Please respect that
differences are okay and try to be helpful with your comments.
Also, remember that the written word is sometimes difficult to
interpret because no visual or verbal communication goes with you
email. Keep this in mind when responding to others.
QUOTING
Please pay special attention to the guidelines regarding automatic
quoting. This is one thing we watch for when reviewing new
members. If you have problems figuring out how to turn off your
automatic quoting, please read this document.
When replying to a
message, it is, at times, useful to include relevant parts of the
original message, or "quote" the message. Do not quote
the entire text of a message either at the beginning or the end of
your message.
We recommend that you
turn off the "Quote Original Message when Replying"
(automatic quoting) feature of your email program and to copy and
paste the relevant part of the message to which you are replying.
If you choose to use the automatic quoting feature in your email
program, make sure to trim the quotations down to the minimum
necessary to provide clarity.
Excessive quoting takes up space on the server and increases the
size
of posts and time required to read them. It also adds unnecessary text to
the daily digests and makes them difficult to read.
SIGNATURE LINES
Anonymous messages are not allowed. Your messages to the list
should include your first name in the body of the message. Keep
signatures to a reasonable length, ideally no more than 2 lines.
YOUR EMAIL ADDRESS
If you have a hotmail address, you may have problems receiving all
messages. Sometimes hotmail blocks our messages. Yahoo has a
free email message service that you may prefer to use.
Please do not try to
get around our "no advertising" policy by using an email
address with your business or support group name in it.
POSTING (SENDING
MESSAGES TO THE LIST)
Please introduce yourself when you feel comfortable. Tell us a
little something about yourself and your child. You can do this by
sending an introduction email to the list at Hemi-Kids@listserv.icors.org
These introductions
help others know that you are part of the list and can help you
feel more included in the group.
Appropriate posts to the list include the seeking and sharing of
information, moral support (of which venting is a form), the
sharing of our feelings and of our children's milestones,
accomplishments and difficulties. Topics discussed include
therapy, orthotics, seizures, education, emotional support, family
stress and any other issues which are related to parenting
children with hemiplegia or pediatric stroke.
GUIDELINES (most of these are designed to avoid volatile
issues, protect privacy, or to keep the list focused on its
primary purpose)
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Courts of law can subpoena
records, including messages in the Hemi-Kids archives and your
response to the Hemi-Kids survey. If you are involved in any
sort of lawsuit or expect to be involved in the future, please
consult your attorney before joining the group.
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Please don't talk
about politics.
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Or religion. You may
discuss how you've dealt with the emotional aspects of
parenting a child with hemiplegia/stroke and how your
spiritual beliefs have played into this. You may not PREACH or
ASSUME that others hold your same beliefs.
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Do not send
stories, poems, cute jokes, etc. to the list.
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Advertising or
solicitation is not allowed on the list. We are frequently
contacted by members who wish to raise funds or awareness. While we support the good work done by other
groups, we cannot allow fundraising posts on the HK list. In
turn, we do not request that other groups post our fundraising
events.
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Please do not use
the HK list to recruit members for other organizations.
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Please respect
privacy and do not ask for photos or addresses of families or
children on the list.
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Please do not post
petitions to the list. If you believe that list members can
benefit from knowledge of a petition, please mail a copy of
the petition and additional information to the CHASA mailing
address for board review.
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Do not attach
files of any type to your message.
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Do not send virus
warnings to the list.
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The discussion of
our children ranges far and wide; however, messages should not
get completely off the topic and away from the purpose of the
list. The list is not for general discussion of any and all
health matters, child-rearing practices, and the like. If
you wish to continue an off-topic discussion with other
subscribers, you should e-mail them directly. Subscribers'
e-mail addresses appear in the From field of their messages.
Note, however, that not all people wish to receive private
e-mail from other List subscribers.
SUBJECT LINE
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Want to get lots of responses to your
questions? Use an appropriate Subject in the Subject line.
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Be sure the subject line reflects the topic
discussed in the post.
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Do not auto-reply and start a new thread
leaving the old subject line in the header. (A thread is a
series of messages on the same topic.)
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If you veer off the subject slightly,
them put the new subject in with the old subject in
parentheses, such as New subject (was Old subject).
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If you receive the digest version,
delete the digest subject line and copy and past the subject
from the message in the digest to your message.
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In the daily digest version, the subjects
of messages are used to create the contents listings that
appears at the beginning of the digest. In the list
archives, messages are sorted by the subject. Good subjects
help subscribers more easily locate messages of interest in
the archives and follow a thread on a topic.
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Please do not
put a person's name in the subject line - if they're
interested in a post, they'll find your message. If you need
to contact them privately, do so off list.
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Examples of a good, specific Subject lines:
Differences in OT and PT
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Not a good Subject line: I have a
question
HOW DO I KNOW IF A REPLY MESSAGE SHOULD GO TO THE LIST OR TO A
PERSON THROUGH PRIVATE EMAIL?
If what you have to say will probably pertain to another parent on
the list, then send it to the list.
Examples of information for private email
1) Congratulations to someone for an accomplishment. Please share
accomplishments on the list but send the congratulations to the
individual.
2) Very detailed information about meeting a member in person.
Please protect your privacy.
COPYRIGHT
All information contained on the Hemi-Kids List is
copyrighted material. Please do not copy or forward any of
messages from the Hemi-Kids list to any other source. The
parents and children deserve to have as much privacy as
possible.
To learn more about
hemiplegia, hemiplegic cerebral palsy, or hemiparesis, visit the Children's
Hemiplegia and Stroke Association website.
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