parents support group near you?

[CanadianMommy]

Hi,<br>
I don't post often but enjoy following the differnt topics.  I
have two daughters ages 5 and 3 who both have CF.  I was
wondering if any of you have a parents support group in your area
where you can meet with other parents of children with CF and just
talk.  Alot of us are dealing with similar issues such as
going to school, learning to swallow enzymes etc.  I know a
support group that meets 3-4 times a year would be helpful to me.
 Do any of your clinics provide such a service?  Does
anyone have any ideas on how you would go about setting one up in
your area?  Also, would you have a speaker or just parents
meeting for coffee and chatting?  Any ideas on this subject
would be appreciated.<br>
Thanks.

 

[CFHockeyMom]

Yes, we have a "parent's group" set up and run through our clinic. The group focus is less on support and more about information. We have a speaker at each meeting. We've had various Dr.'s, nurses, repiratory therapists, dieticians, adult CFers, social workers, psychologists, etc. come to speak with us about varying topics.

I've found that having a support group in general is difficult from the standpoint of everyone's CFer being at a different stage in their life/death. It's difficult for a parent of a healthy toddler to relate to the parent of teen in end stage. CF is such a varying disease that everyone's sitaution is different. That is why the informational type group has served us better. If a speaker is coming to discuss something that is more pertinent to your current situation, you come. If it's something you'd rather not hear about quite yet, you stay home.

 

[Ratatosk]

Our clinic has a support group every quarter. Usually they have a speaker. We usually get a flyer, so far none of the topics have pertained to us yet. Last time it was managing CFRD.

 

[CanadianMommy]

Good points..thanks.