Q and A: Starting a Support Group

If I had a nickle for every time it would’ve been nice in the last 10 years to talk to somebody who just plain understood, I wouldn’t be worried about being laid off.

Image: Flickr.com

Sandy Knollman, of the Comforting Ties Autism Support Group, offers these tips for starting and maintaining a group:

Q: Tell us a little about your group.

SK: It started in October 2008, and its first meeting was in December 2008. Members are parents, family members, educators, and some providers. The subjects are varied, but last month’s focus was education and making
it through the sometimes complicated school systems. I also passed out printouts of articles that I had found and that my friend Connie had found, and I gave information about Medicaid waivers available through the state of Kentucky, since that’s where most of the members are from. I also brought a copy of the Autism Speaks 100 Days Kit, as well as the University of Louisville’s Kentucky Autism Training Center Kentucky Family Guide to Autism Spectrum Disorders. The meetings are the first Monday of every month, 6 to 8 p.m.. The location varies, but we’re hoping to have a permanent meeting place once we get the autism resource center opened.

Q: How do you spread word of your group?

SK: By word of mouth, and announcements to local schools/family centers. Info is also listed on the Autism Speaks support group list, and on the Kentucky Autism Training Center’s listserv. Also, if someone asks me about autism, I always include that I run a support group and plan on opening an autism resource center.

Q: What’s the easiest thing about starting a group?

SK: Knowing and feeling like it’s the right thing to do, and knowing there’s a need for it in this area. I’m not afraid of putting myself out there; if you’re a shy person, it may not work. I’m normally a shy person, but talking about autism and helping to educate others about it is a passion of mine.

Q: What’s the toughest thing?

SK: Being away from kids for that long. I work full-time, and I’m gone all day when I have the support group meetings. (My schedule) is crazy, but so worth it! For the first time in a really long time, I finally feel like I’m doing what I was meant to do.

Q: Any words of advice for those looking to start their own support groups?

SK: Start small. Don’t try to make it too big from the get-go. If you do, you will burn out and the group will fizzle as fast as you do. Also, be passionate and willing to get calls and e-mails from people you don’t know. Also, talk to people about it. You never know when someone might know someone else that needs your group. You may want to provide refreshments. I started off bringing everything myself, but eventually someone else will volunteer to bring something and be willing to take the load (and cost) off you. Now, my
friend Connie makes some snacks to bring, and since my husband is a chef he makes an appetizer or two. I even had my boss make a cheesecake one time. Since the meeting time is 6 p.m., I don’t want people to be hungry. For
morning meetings, you may want to provide some muffins or granola bars and fruit. Something relatively cheap but also nutritious.

For more information, contact comfortingties@yahoo.com.

***

Blue Cross Blue Shield of Michigan plans to offer coverage of some autism treatments.