Tuesday, November 13, 2007

Organizing a Support Group

Last night my parent 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), 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 has two boys on the spectrum is the powerhouse in charge. She organized our group four years ago and 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 wonderful southern accent, 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 up of the room, and volunteer to help with the various activities she has planned (more on this soon). 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 soley 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. 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.

4. 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.

5.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.

6. Hold Family Game Nights. Guys seem to be more likely to attend events such as these.

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 six tips I just posted were obtained by observation and from being a member of such a group for four years. When my family moved in the area five years ago, we did not not have much in the area for families who had children with ASD.

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. Best wishes--JML.

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