As the parent of a child with cerebral palsy, it is
significant to emphasize that I participate in list serves
solely for the sharing of experience with other parents.
Parents sharing with parents is a vital resource that should
not be corrupted from well-meaning clinicians. It is critical
that these list serves be available and comfortable sites for
parents to openly discuss all topics related to a cerebral
palsy without fear of further diagnosis, labelling, judgment,
recrimination, or more unsolicited expertise from clinicians.
For those of us families involved in the service system, we
need a place of safety from further questioning, more
labels, predictions, prognosis, etc. I do not feel it is
appropriate for a clinician to solicit research subjects from
the list serve. There are many places to do this
solicitation. It is important to respect the integrity of
the list serve.