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Disappointed in Local Support Group


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I was excited to find a local support group in my area, and was planning on attending the first meeting tomorrow. I recently found out that this meeting isn't "kid-friendly", and since Ethan goes pretty much everywhere with me, I guess I won't be able to attend. Not only is he at that age where he has to be with me every second, but I also have no one to watch him in the middle of the day during the week!!

This is rather disappointing, since I have been waiting 2 years for something like this to come along. I would still love to start a support group for any of those who were previously interested (and any newbies!!) in the DC Metro area (to include Maryland, DC, Virginia, and West Virginia). I was thinking perhaps in the Leesburg area? And it would be adult AND kid friendly!! And maybe in the evenings so those who work can attend as well? A fellow POTS friend that lives in my area was going to attend with me, but she too has small children, so we're both in the same boat. With any luck, we're hoping to organize our own group eventually. Let me know if you have any thoughts . . .

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As someone who used to organize and supervise 9 support groups for parents of kids with disabilities, I can speak from my own experience in that regard.

I think you're asking a lot of a group to be able to operate effectively and have the kids in the same room at the same time. Many folks come to those meetings as the only "adult" conversation they get to have without their kids...or spouse...or others who may be taking care of them.

Most support groups are provided at a free service, by individuals who volunteer their time, and often in a space that is donated, such as at a public building, a hospital, library, etc. Many of these locations have limitations they impose, such as cleaning of the premises, promises not to serve food, promises to vacate at a specific time, etc. Also, many of the speakers, moderators, etc. are there on a volunteer basis, or are recieving pay that is way less than the going rate.

As an organizer such meetings, I can tell you it's very hard to make a meeting that's kid-friendly. Unfortunately, some adults just don't feel comfortable sharing difficult info, and/or listening to guest speakers when there are kids running about, crying, making noise, etc. With some groups, I was able to offer babysitting in a separate room...usually free of charge or sometimes for a very reduced fee. This seemed to be the best "kid friendly" possibility to please everyone. One of the groups came up with their own babysitting system that was free--attendees with kids each took a turn "volunteering" to babysit for several children. This meant that each month, one or two attendees would miss the meeting info, but in return, had many other meetings where they could focus their full attention.

Hope I didn't offend you, but wanted you to be aware of what the issues are in getting a support meeting together. I suppose my message is that a support group is not able to be everything each participants wants, so the organizers often have to go for a "happy medium." Nina ;)

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Thanks for sharing your thoughts about this. I do understand both perspectives, but I like what you were saying about the babysitting in a separate room, I think that would be a thoughtful and considerate way to include those of us who aren't able to attend because we chose to have little ones. I do not feel that it is fair to exclude *anyone* from these meetings, because support for patients with dysautonomia can make a big difference in quality of life for many of us.

I was really looking forward to this meeting, and I just wanted to vent about my disappointment that I now cannot attend. People who have POTS are just that- they are people. People of different ages, different backgrounds, men, women, young, old, rich, poor, some are sicker than others, some are moms, some are dads, some have no kids, some are married, some are not. None of these factors should set one of us apart from another when we are all coming together for support.

But I do see it from another perspective as well- I know not everyone can tolerate kids running around being noisy, etc . . . and not all parents handle their children in such a way that is respectful of others either. This group is held at a private residence, so there shouldn't be too many issues such as cleanliness, being gone at a certain time, etc . . . I just don't know where to go from here, since I now have no support group to attend. My doctor (the one who offered me a job) was interested in putting together a local network, so maybe I'll just have to wait and see what happens with that . . .

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Hi Again, yes, you are right, some parents could probably bring their kids and you'd never know they were there. Unfortunately, the "no kids" policy that our groups had often stemmed from meetings in which kid noise took center stage.

The babysiting service I had for our groups cost our company money in that we paid our teachers to come in at night and do the sitting. We were fortunate to have some donated monies to go for this service, otherwise it would have been out of reach for most of our meetings.

If you plan on putting together a group of your own, may I suggest planning for the $$ any sponsorship proposals you might make ot funding sources. We got donations of space and of money from some interesting sources, including banks, local hotels, restaurants, clubs like the Elks, etc. Most banks have meeting space they'll donate, and in return, they get to write off the cost. Hotels sometimes donated meeting rooms and light snacks.

Nina ;)

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Those are some great ideas!! I might have to solicit more of your advice if we do get a group started in this area = ) If you don't mind, that is ;) There are a lot of things to consider.

I am going to wait and see what kind of responses I get in talking to people in reagrds to starting another group, and we'll go from there. The local support group that I was going to attend was over an hour away, so that's why it would be better to have one a little closer in, even if it's a very small group of people. I was just thinking that children should be welcome, we will find a way to make that work out, as well as having evening meetings since a lot of people work during the day. Any more comments are welcome!!

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I have two volunteers ...actually I have three that would love to do the babysitting

at no cost to anyone...

It' s important that everyone who needs support, recieves it... I know how I felt before I found anyone that even had a clue as to what I was dealing with...

We'll make it work...Besides..We're already off to a great start...Don't you think..

We'll talk more later..


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