I competely agree. We will definatley still do break out groups but
maybe allow more time for them this time and maybe do it a couple of
different times with different topics and emphasis. I know everyone
enjoyed the mother of a William's syndrome child (adult now) that
spoke at the last conference because we could all relate. Maybe
next year we could have a parent of an adult or teen 11q child speak
about their experiences of raising an 11q child (any volenteers?).
And I even thought that some of the most valuable information came
from other parents while we were just sitting out by the pool
chatting. It is definately the personal experiences that we can all
relate to in some way or another.
--- In 11q_disorders@yahoogroups.com, Jeremy Pyle <dad_11q@...>
wrote:
>
> I am sorry this took so long but I have been putting alot of
thought into it. I think the one thing @ the 2006 San Diego
conference and @ the 2007 European conference that stood out to me
was the personal stories told by parents. No matter what the age,
genetic disorder, or the specific details that happen to that
children, as parents we can learn from and be better prepared for
things to come and possibly remember things we did differently in
the past and be able to not make the same mistake twice. All the
medical information we help gather and hear from the experts is
great but I feel it is the life experiences we all share that helps
us in the daily life activities.
>
> Jeremy
>
>
> Gretchenwarren@... wrote:
> Linzee,
>
> I need to put more thought into it, but I was thinking of
something specifically for our adolescents. I know this depends on
how many we have. Perhaps we can do it as a transition years. 10-
15 or something. From my communication with other parents, I know
behavior, hormonal changes , etc. become an issue. I am planning to
attend a seminar next week on puberty so I may have more ideas
then. Perhaps something on Assistive technology/adaptive skills --
various ideas for parents from communication to play to computer
alternatives to making things more accessible so kids can be more
independent.
>
> I'll give it some more thought.
>
>
>
>
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