Just wanted to address your concern about labels - you and your child are
never going to escape labels, whether it is from family, doctors, therapists,
friends, or other children.  The best thing you can do is accept they are
there; you can choose to accept them or not and replace them with your own.

Just so you know, disabled children can be just as cruel as able-bodied
children when it comes to labels.  When I was a child, I attended a school
that started out as being only for those who were motor-impaired, and when I
was in the fifth grade, they started holding classes for those with mental
limitations.  We were mean to them and would not mingle with them at all,
much to the dismay of our teachers.  I remember softball games in which we
were forced to play with them and our pitcher deliberately tossed the ball
into a batter's arm.  Not memories I'm proud of, but I do tell them these
days to let people know that disabled kids can be just like any kid on the
playground - they can be bullies and snobs, too,  just on their own level.

All this is to say that in the ethnographic case studies I read in grad school
one common thread is how people perceive each other in their culture and each
culture has its own terms for individuals and their roles.  Bobby can verify
this, I'm sure.


Kat

On Sunday 30 January 2005 9:05 pm, Cynthia Crosby wrote:
> Regarding research.
>
> 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.
> Cynthia Crosby