Parenting Kids with Chronic Diseases
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Parenting Kids with Chronic Diseases
August 2008
My child (who is preschool age) was born with a somewhat rare
chronic disease. Although it is not likely to be fatal,
dealing with it is a burden for both me and my child. I am not
really scared or worried about my kid's medical situation - I
am totally burned out on going to the doctor, figuring out how
to manage my child's situation and battling with my kid to do
things necessary to stay healthy. I am in therapy and love my
therapist, so I am not looking for therapy recommendations. I
get to take breaks and get respite from the situation, so I
don't need that kind of help. I want to be around other people
who can relate and offer support. Any suggestions for support
groups for kids with chronic diseases or something like that?
thanks!
Hi, my kid is in a similar situation, and I hear what you're saying. A number of
years ago I used the support group at the Parent Infant Program, which is through
Children's Hospital Oakland. I believe the therapist/facilitator there was named
Lucille. She ran support groups in addition to the PIP group. The parents in
the group(s) had kids with varying dx. Otherwise, I'd suggest asking your
pediatrician/specialist and/or calling the developmental pediatricians at CHO for
a recommendation. I also like Patricia Yeaton, a (kids') psychologist at CHO.
She's the kind of person who would return your phone call if you left her a
message seeking resources. Finally, you might try googling for online
support/listserves for your kid's specific dx. Good luck, and hang in there.
anon
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Last updated: Dec 25, 2008
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