Friday, December 16, 2011

How to Start Your Own Support Group

Bear in mind I have "started" (been in on the ground level, really, didn't technically start), exactly one. This is not a manual, but a what-worked-for-us list.

If you are the parent of a special needs child, you need support. Period. You also need resources and a good group will do both - offer resources and support!

 1. Find 2-3 other people that also have a kid with special needs, even if they aren't the same as your kid's. You know 2-3 more. You just do. If not, ask your doctor, therapist, kid's teacher/principal/counselor, you-name-it.

 2. Meet. Could be a coffee shop (don't recommend that - the walls have ears). Could be one person's house every time (I actually DO recommend this, and I'll tell you why in a minute). Could trade off houses. Pick a time that works for the initial group of people, and stick to that. Others will join the group and suggest times that would better work for them. This is a no-win. You will forever be rearranging your meetings, frustrating everyone, losing consistency, and never finding a perfect time. Don't apologize. "We meet ________ from ________ to ___________." I do tell people that it's fine (and common) that people come late and/or leave early, whatever they need to do.

 3. Key is to meet when the kids aren't around. We meed the 2nd Friday of every month, 9-12 AM. Many of the moms do work. They arrange their schedules around this. I recognize this is not always possible, but you would be impressed with the lengths some of the women in our group go to. We (I) put out the schedule for the whole school year by September 1st, they block that time out and show up.

 4. Establish a strict what-is-said-in-the-room-stays-in-the-room, policy. This is key. If people feel like they can't be free to share, there is no point in having a group. I always e-mail a summary of our meetings and distribute it to the whole group, but never put on there anything personal or specific, just Websites, resources, etc. that were shared at the meeting, maybe even a question that someone in the group that wasn't there, could still answer.

 5. You kind of need one person to take charge, have all the information filter through, and keep everyone on track. A leader will rise. It may or may not be the person that gets the group going.

 6. Take an All Are Welcome approach. If someone comes to the group and wants to bring a friend/neighbor/relative/whatever the next time, always say yes. You can't control the size or formation of the group - this is organic and will take care of itself.

 7. Some people will come once, dump all their problems on you, and never return. This is not unusual. Likewise, some people will come many times before opening their mouths to speak. This is also not un usual, and is to be encouraged. They are feeling out the group, establishing trust and are sure to be invaluable "members" of the group.

 8. Sometimes have a topic and/or guest speaker, sometimes do not. I have found if we are too loosey goosey, or too all-business, it doesn't work.

 9. Each time a new person joins, do NOT go around the room and have everyone tell their whole story again. This will chew up ALL your time and the ones that are faithful and loyal and never miss, have to hear it over and over again. People will catch on. It doesn't matter anyway. You don't need the full story to be a strong support.

10. We have considered, and even tried to start, sub-groups. ADD/ADHD, ASD, Down Syndrome, whatever you may have a lot of people coming for support for. We've never been able to get this off the ground for whatever reason. There is something nice about the group that is "misc." Many of the people in our group ALSO attend specific group meetings, but they always like our group better. It can be pretty depressing when the whole meeting is about the same "different ability" - you hear the extremes and that can overwhelm and freak some people out.

11. Keep the e-mail list blind copied. I JUST started doing this and wish I'd done it years ago. Not everyone needs to see a new name on the list and start to speculate what all is going on in THAT family! If they want to know who else is in the group, they are welcome to come to the meetings.

12. I have found that it is more successful to just have all the meetings at my house every month. I make coffee and move the furniture around, someone almost always offers to bring treats, and if they don't, I open a bag of whatever is in the pantry and call it good. Some people that need the group most, are barely holding it together. If they think that eventually the group will need to meet at THEIR house, they may not even bother joining the group. Just like a natural leader will emerge, so, too, will someone that likes to host things at their house. Trust that this is true. Again, you could always meet somewhere where nobody is the host, but I think it's hard to talk about such personal issues, in a public place.

13. We have twice as many names on the email list, as typically come to a meeting. That does not mean they aren't valuable and contributing. People have posed all kinds of questions to the group, all the way from, "Do you know of a good math tutor?" to "What experiences have you had with Risperdal?" The e-mail responses are helpful and varied.

14. Have someone in the group be the recorder at the meetings (again, this could all be the same person that hosts and organizes, and communicates, but doesn't necessarily need to be). Keep track of all the great resources shared, and create a directory. It took me 7 years to figure that one out. Each time someone needed a good something-or-other, I was forever going back to the group to ask, AGAIN. We now have a many page document with names of acupuncturists, doctors, therapists, books, speech paths, Websites, etc.

15. Try to keep the support on special needs. Invariably "life" will hit people in the group - death, divorce, foreclosure, health issues, all of that. While it's inevitable some of the discussions will also include all that's going on in a family, the group is really gathered for one very specific reason, and needs to stay focused on that.

16. Don't meet in July or August because A) Your kids are home, B) Everyone's schedule is different, and C) It's good to have a break.

* Photo from

1 comment: said...

Amen to #2.

I hate re-jiggering schedules. A----nnoying.

Great list. Wish I could come to your group.