Advice for Starting a Support Group

Many parents find it overwhelming when they have a child that is a late-talker. Is there a problem? Who should we see – a doctor, a pediatrician, a speech pathologist? Are we over-reacting? Do others notice that our child is not talking? How many times have we heard: “Einstein didn’t talk until he was five years old”? Or how about “he will talk when he is ready…” or “she doesn’t need to talk, you give her everything she wants”. Often these comments are from well-meaning family and or friends, who have no idea of the impact their comments have on you and even your child.

It is validating and helpful to be with others who know how you feel, and who really “get it”. Speak to others in your area about where to go to get service, clinicians that have worked with children like yours, great and not so great programs and services. You can bounce ideas of each other, share information, and even give your kids the opportunity to have a playdate with other kids who are like them.

A support group can be a couple of parents meeting with their kids at the local MacDonald’s, a group of parents sitting around a kitchen table exchanging information and telephone numbers, or a more formal, regular meeting with a larger group of families and even guest speakers.

Interested in starting a group? Here are a few pointers…

• Set up an email address where you can receive correspondence from interested people.
• If possible, have a telephone number where people can reach you to get more information. Link to existing websites, like Speech-Express, to get your name out there for parents who may be looking for support in your area.
• Pick a place to have your meetings, and keep it to that same place – that will make it easier for people, knowing that you always meet in the same place. A community centre, church basement, etc. — anything free.
• Meeting frequency should be determined by your members – monthly, quarterly, whatever works best for all.
• Consider forming an executive for your group, so that the responsibilities in the group are defined. Basically, a person to chair the meetings, and another to take notes. Assign a person to bring refreshments to the meeting — a box of donuts, a coffeemaker & a can of apple juice for the kids.
• Setting an agenda is a good idea, just so people know what to expect. Poll the attendees at the end of the meeting to see what they would like on the agenda for the next meeting.
• Will you allow parents to bring their children to the meeting? Will you have a babysitter, or will the children have to be watched by their parents?
• Consider inviting guest speakers, perhaps your own SLP, a community worker, someone from your child’s school. The possibilities are endless!

Here are some more ideas from the Self Help SourceBook (online); a wonderful resource with some great suggestions.

“Think “Mutual-Help” From the Start
You do not have to start a group by yourself. There are others who share your problem.

Find a few others who share your interest by circulating a flyer or letter that specifically cites how if one is interested in “joining with others to help start” such a group, they can contact you. Include your first name, phone number, and any other relevant information. Make copies and post them at places you feel are appropriate, e.g., library, community center, clinic, or post office. Mail copies to key people whom you think would know others like yourself. You can also ask if the notice might be published in your local church bulletin and newspaper.

When, hopefully, you receive a response, discuss with the caller what their interests are and what you would like the group to do. Ask if they would be willing to share the responsibilities of organizing a group for a specific period of time. By involving several people in the initial work of the first meeting, they will model for newcomers what your self-help mutual aid group is all about: a cooperative effort.

Also, consider obtaining the assistance of any professionals who may be sensitive to your needs and willing to assist you in your efforts. Physicians, clergy, and social workers may be helpful in various ways, from providing meeting space to locating needed resources.

Publicize and Run your First Public Meeting

To reach potential members, consider where they might go to seek help.  Would they be seen by particular professionals or agencies? If the answer is yes, try contacting these professionals. Posting announcements in the community calendar section of a local newspaper, library or community center can be especially helpful. The key is to get the word out. The first meeting should be arranged so that there will be ample time for you and other core group members to describe your interest and work, while allowing others the opportunity to share their view of how they would like to see the group function. Identify common needs the group can address. Although you do not want to overload you new arrivals with information, you do want to stress the seriousness of you intent and the necessity of their participation. Make plans for the next meeting and consider having an opportunity for people to talk and socialize informally after the meeting.

For meetings consider the following:

Purpose: Establish the purpose of the group. Is the purpose clear? Groups often focus upon providing emotional support, practical information, education, and sometimes advocacy. Also determine any basic guidelines your group will have for meetings (to possibly ensure that group discussions are confidential, non-judgmental, and informative.

Membership: Who can attend meetings and who cannot? Do you want membership limited to those with the problem? Will there be membership dues? If so, how much?

Meeting Format: How will the meeting be structured? How much time will be devoted to business affairs, discussion time, planning future meetings, and socializing? What topics will be selected? Can guest speakers be invited? If the group grows too large, consider breaking down into smaller sub-groups of 7 to 12.

Roles and Responsibilities: Continue to share and delegate the work and responsibilities in the group. Who will be the phone contact for the group? Do you want officers? Consider additional roles members can play in making the group work. In asking for volunteers, it is sometimes easier to first ask the group what specific tasks they think would be helpful.

Phone Network: Many groups encourage the exchange of telephone numbers or an internal phone list to provide help to members between meetings. Ask your membership if they would like this arrangement.

Use of Professionals: Consider using professionals as advisors, consultants, or speakers to your groups, and as sources of continued referrals and information.

Projects: Always begin with small projects, then work your way up to more difficult tasks.

Stay in touch with the needs of your members. Periodically ask new members about their needs and what they think both they and the group can do to meet them. Similarly, be sure to avoid the pitfall of core group members possibly forming a clique.

Expect your group to experience “ups and downs” in terms of attendance and enthusiasm. It’s natural and should be expected. You may want to consider joining or forming an informal coalition of association of leaders from the same or similar groups, for your own periodic mutual support and the sharing of program ideas and successes.