Saturday, February 9, 2008

An Update: Organizing a Support Group

Note: This post is an update from one I wrote back in November. I was inspired by a new blogger friend who, along with her husband, is considering starting a group of their own. I hope this helps.

I have been a member of a support group for four years now. Our last meeting was November 13 and we’re hoping to meet again soon now that the holidays are over. Our group met at our local university's preschool lab room from 6 to 7:30 p.m. The student organization, Association for the Education of Young Children (AEYC) at Central Michigan University, watched the children of some of our parents for free in adjoining preschool room while five of us (four parents and a college student) chatted about life with Autism Spectrum Disorder in the family. The rooms we were using were also free of cost.

I cannot be credited with attaining the room or the free babysitting. A friend of mine who gave birth to two boys on the spectrum is the powerhouse in charge. Motivated by the need to help people she has done some serious social networking to get both the rooms and the babysitting. I met the organizer when our boys were in the same classroom.

She has a friendly demeanor and a knack for leadership. I do not consider myself to be a leader as much as a supporter, so I just try to help out when I can. I attend most of the meetings, help with the set up and lock down of the room, and volunteer to help with various planned activities. My philosophy is that if you get help, you should also give help. At the moment, the help I'll try to give is a few tips for organizing a support group.

1. Find a location. There should be some rooms available at no cost in your community. See if your church, local library, or local university (if one is present) has a room available for meetings. A local bookstore, depending on its size, may also have a room available for meetings. If the group is just for individuals with ASD or such an individual is attending the group, keep sensory issues in mind. Bright lights and loud sounds can be difficult for some individuals on the spectrum to tolerate.

2. Reach out to potential members. Note that this group can be for parents and/or individuals with ASD. A newspaper notice can be effective in attracting members, but there are other ways to inform people about the group. One could post fliers (with permission) on bulletin boards at businesses, public institutions and even doctor's offices. Word of mouth may also work. If an acquaintance mentions they know someone with ASD, then arrange for that person (or a family member) to be contacted. The acquaintance may not want to give you their friend's contact information, but they may be willing to call the person for you. Finally, attend events that people with special needs might also attend. These events may be affiliated with Special Olympics or your local Parks and Recreation Department.

3. Choose a meeting time and keep it consistent. For example, my group meets every second Monday of the month at 6 p.m. Survey interested members to see what day and time will work best. Note that some meeting rooms may have limited availability. In our case, we could pick any day and any time (after five or so), but some meeting rooms may be in demand. It also might be impossible to choose a time which works for everyone. Just do your best.

4. Network to expand and maintain membership. Other people interested in joining or helping your group may be teachers, various professionals or retired persons. Sometimes just a phone call to interested persons to see how they are doing can encourage someone to attend. Our leader is very good at this technique.

5. Keep a contact list of all interested people. Email is my group's most effective method of communication, but sometimes it is also necessary to contact someone by phone. Use this list to send out or call in reminders once you have the meeting times arranged. Keep in mind that people can be busy and their lack of attendance does not necessarily mean a lack of interest. It helps to keep categories of lists. Parents should go on one list. Professionals should go on another.

6. Consider typing up some guidelines to discourage too much negativity. My friend did this before our very first meeting and it worked wonders in terms of keeping us all in line. She discouraged people from naming and discussing particular doctors (unless one was really good) and school officials. A list with expectations will discourage the meetings into turning into a running forum against the local education system or the medical community.

7. Hold Family Game Nights. Guys seem to be more likely to attend events such as these. Game nights are usually well attended.

8. Print up a business card with contact information. There are a lot of online businesses that one can order cards from.

9. Once organized, define who your members should be. Do you want to include parents of all special needs children or just those who have children with autism?

10. Decide whether or not you want to be a low key support group who meets informally for coffee or if you want to add education and advocacy into the mix.

11. If there is a National Organization in your country consider the possibility of forming a local chapter.
12. Once formed, it’s a good idea to set up a phone tree.
This will come in handy in case someone suddenly has a family crisis or medical emergency. These support groups have the potential to rally around a family who needs an extra amount of help and support.

13. Consider starting a lending library of books, magazines articles, etc.

14. Be Resourceful. Will your local library be willing to help you out by loaning space? Can you get the local university (if there is one your area) involved (as my group did)? Check out local government agencies if you haven't already. A parks and recreation department may have resources to help your group as well.

I hope that these tips will be helpful. I may be willing to add a tip or two if someone posts a great idea. The tips I just posted were obtained by observation. When my family moved in the area five years ago, we did not have much in the area for families who had children on the spectrum. My friend changed that by being proactive and starting her own group. As of now, we are merging with two groups from other towns to form a chapter of the Autism Society of America. We are in the final planning stages and are very excited about the possibilities that are emerging. More on this later…


Elissa - Managing Autism said...

Thanks Julie - you're a gem!!

J said...

You are welcome, though it looks like I need to do a little editing. All my guys were waiting for me to go to a pancake supper when I hit the publish button.

Casdok said...

These are great tips, and ones i have used when running a couple of support groups in my time!

Marla said...

Great ideas. We facilitated a group for a few years and it was a lot of fun but became a lot of work for us. Many of the parents were not as willing to help out so it fell apart.

These are great tips!

J said...

To Casdok: I'm glad an experienced organizer approves. : )

To Marla: Glad you approve too. I know what you mean. Only a handful of parents are doing most of the work. We're muddling along trying to get back on our feet after the holidays and in the midst of a harsh winter with more school cancellations that I can remember in years past.