I'd love to hear your experiences with support groups!!!

[gsmom]

For awhile I was taking my son to a support group at the local hospital, but it was all older people (he was the only kid). We've stopped going & rather than complain that there's nothing closer to us I'm considering starting a JD support group. People have said "All you need to do is get people together," but then what? What are some of the things you all have found helpful or fun for both you & your children? I'd appreciate ALL input! :)

Thanks in advance!

[Brensdad]

My suggestion would be that you post information at your child's doctor's office about type 1 diabetes in children and that you are starting a support group. Then be sure the doctor and nurses know about it and can refer interested families.

The next step would be to get to know the pedatric nurses at your local hospitals. After all, they are the first ones to see those sick kids and can refer them to you.

Good luck.

[Twinklet]

Our local JDRF chapter started one here last fall. They sent flyers to the local Endo offices with the information.

We meet every other month in the evening for a couple of hours. After a meet-and-greet, there is a topic for discussion and sometimes a guest speaker. The guest usually functions in a very informal manner, mainly bringing up topics according to their expertise and answering questions.

Topics we've discussed so far are 504 plans and what to do about school (great info when parents from different schools compare notes!); insulin regimens; psycho-social aspects of the disease and food issues.

Our last meeting ended up being a major detour off-topic as we listened to and commiserated with 2 newly-diagnosed families who were struggling. Which is totally fine, because we all need that support from others who have walked in our shoes.

[nantomsuethom]

I, along with 2 other mom's in our area, started a support group last year (Feb.).
I contacted our Animas rep who we got Thomas' pump from to find out how to get a group going. He was more than happy to help get the word out and help out where ever he could. He has been a great support for our group ever since and has helped with numerous speakers.
We also have had speakers on nutrition, school issues, pumps, insulin & psycho-social. We also had a family picnic that was a lot of fun.
This year we set the dates and speakers through December and included some fun "field trips" for a couple of months.

[BrendaK]

We've been to a local support group meeting a couple of times over the years. It has been just okay, not great.

People tend to get very defensive that their way of treating diabetes is the best way. When you put a bunch of parents of D children in a room together, everyone compares themselves and their kids to each other. At least in the group I was in. One man was preaching at everyone else at how anti-pump they are and we all should be anti-pump :mad: . He even stopped me in the parking lot afterwards and handed me a flier of his daughters diagnosis story and started on the anti-pump message again.

I prefer the online support forums because it's not as judgemental or intimidating for me.

I know others have had great experiences with support groups, I think I just dropped into those meetings here at a weird time. But it's something to keep in mind when you start one.

[Twinklet]

One man was preaching at everyone else at how anti-pump they are and we all should be anti-pump :mad: . He even stopped me in the parking lot afterwards and handed me a flier of his daughters diagnosis story and started on the anti-pump message again.


:eek: Why was he anti-pump? I know it's not for everyone, but I've only heard of one person being rabidly anti-pump (Dr. Bernstein).

[Mama2H]

Another mom and I have just recently started a support group. I guess it is more of a running "playdate" than a support group per say. We do not have speakers or any sort of set discussion. We decide on a day and show up at a local play land, the kids play and we talk. We have worked out a deal with this play place so that our D kids can get in free on our meeting days as long as they show thier medical ID's. If we find a great new gadget or some site that has helped us out we share with everyone, other than that we just talk and let our kids play with other children that are living the same thing they are. I don't think my 10 year old would enjoy sitting through a "meeting" but she looks forward to every time we schedule to meet because she gets to play with her D friends. My 7 year old loves it too because she gets to play with other siblings and talk about how it has affected her life. I love it because I can talk to other mom's with the same concerns as I have. I met the first mom through calling JDRF, the 2nd was someone that my dh worked with that was just dx, the 3rd and fourth found me through the parent's forum here. We plan on sending "business cards" to our Endos, hospitals, and posting flyers in places that kids congregate. Of coarse this is all when I have time to make them up LOL. It really is worth the effort you put into it!

[BrendaK]

:eek: Why was he anti-pump? I know it's not for everyone, but I've only heard of one person being rabidly anti-pump (Dr. Bernstein).

I'm not exactly sure -- he wasn't a speaker or anything -- just a parent. Something about how he didn't want his daughter hooked up to something all the time. Which is fine -- I just remember feeling very intimidated and not wanting to get into a debate about why I put my son on a pump.

On another note -- I have met 2 other moms in my area with D-boys that are Carson's age. I've loved getting to know these women and we have the playdates sometime, too. It's really good for us and for the boys.

And I'm planning calling a mom of a baby that was just diagnosed that lives a few miles away from me. She's a friend of Carson's teacher at school. I think that for us the informal support groups like this are much better than the ones with the speakers and formal discussions.

[gsmom]

Thank you all for the great ideas!!! I'd never thought about someone possibly being so negative about something that could be so beneficial! I agree, that's what I love about this forum! Everyone is heard & not judged! I think I'll start by contacting a couple people I know and try to do a little of all the suggestions here! I mostly want my kids to feel like they're not so alone (as I do here:) ) but also be able to provide some resources for those who would benefit. If anyone has more suggestions, please keep them coming!!! THANK YOU SO MUCH!!!

Also, if you know of anyone in Illinois (I'm about 45 minutes East of Rockford) that might have an interest, would you please have them contact me?

[frizzyrazzy]

I've been thinking the same thing - I'd like a real life group at home. I get lots of support on line but i think I"d like for my son so see other kids and for my older child to see other siblings...

some thoughts I've had so far are simply not call it a support group. In part of MA the local JDRF has a 'sub chapter' and they schedule events. I was thinkign that might be the best thing - its casual, its not formal and you can plan events specifically for what you're shooting for (the social aspect) Then occasionally, 2 time a year or so - have a formal speaker type evening.

Anyway, those were just my thoughts.