Why start a parent group?

One of the most important things you can do for yourself as a parent of a child with apraxia is connect with other parents. Other parents may have great insight into issues that are affecting you and your child right now, such as school districts, IEPs, and legislation, just to name a few. Being part of a support group means getting the information that is relevant to you and your family, as well as, having a friend to call who understands what you are going through.

Your group can be whatever it needs to be to meet the needs of the parents involved. You can sponsor picnics where the children get to know each other. Or your group can focus on education and sponsor speakers that give parents the tools they need to help their children. Your group can teach parents how to be advocates or your group can simply share their concerns about raising children with apraxia. Or your group can be all of these things. There is no right way or wrong way to reach out to another parent.

Starting a parent group is a lot of work, but the rewards are immeasurable! Just knowing another parent of a child with apraxia can be the gift of a lifetime and Apraxia-KIDS is here to help.

How do I start a parent group?

The first thing required is a desire to be involved with other local parents who are also helping their children with apraxia. There is no right way to start a group but there are considerations you’ll want to think about.

Ask yourself how much time you really have to give? You’ll need to consider what type of group you want to form. Do you see your group meeting monthly or maybe just three or four times a year? Do you want a group that has formal meetings? Speakers? Or would you rather just get together informally with other families at family fun spots so that kids can play and adults can informally talk and network? A little of both? You have to start somewhere! If you do not currently know any other families whom you can ask for their ideas and interests in a group, start with your own vision. However, be prepared to change that vision in order to meet the needs of other parents who may ultimately want to get involved in a group. A thriving group is one that meets the needs and interests of its members.

How do I reach out to other parents?

Your parent group will need members and so you’ll need to discover ways to get the word out in your local community about your group. Some ways you can let others know about your group, include:

• Contact facilities and organizations that offer speech therapy and other services for children. Ask if you can post a flyer that announces the group’s formation with your name and phone number.
• Call the local newspaper to see if they can put an announcement in the paper.
• Post your group information on local cable network community bulletin boards or local newsletters of organizations that are involved with young children, church or pre-school newsletters, etc.
• The appropriate Facebook support group

You will also need to find a place for your group to meet. In nearly all communities there are organizations and locations that will offer free meeting space to efforts such as parent support groups. Locations that groups meet in include:

• libraries
• community centers
• churches
• hospitals
• speech therapy offices
• nonprofit organizations
• private homes

What about the long run?

How long will your group last? How long will your interest or ability to coordinate the group last? Answers to these questions cannot be predicted but should be considered. Sometimes, as children get older and needs and interests change, group leaders may no longer want to continue doing the coordinative work required for a healthy and active group. Incorporating parents of younger children into a core group of volunteers can be very helpful to make a transition in leadership. More experienced leaders can offer to mentor or co-lead a group with a parent of a younger child.

Life circumstances and changes can delay or derail your best intentions for a group. Again, these are good reasons to involve others in volunteer leadership roles as quickly as possible. And sometimes groups live out their course and come to a natural conclusion. It’s ok! Some groups SHOULD come to their end! If this happens to your group, go out with a big party and celebration of what you were able to do.

Will I need to be a nonprofit organization?

It is not necessary to formally start a nonprofit organization in order to create a parent group. While it is an option, incorporation and nonprofit filings can cost money, time, and resources. Some parents have found practical support for their group through other incorporated organizations in the community who care about youngsters, children with speech or language issues, or apraxia. These already legal entities may agree to host or sponsor the group and offer space, copying, postage, mailing and other in-kind resources to help your group be successful without the headache of creating a formal organization. Some groups may decide they do want to formalize their group through incorporation. Again, there is no right or wrong way to begin a support group.

What should happen at our first meeting?

Hopefully you have been successful in getting a number of parents to attend your first meeting. You will first need to consider the initial comfort of those in attendance and have name tags, comfortable seating, food and drink, and other ideas for offering hospitality. Perhaps the second most important thing you can do is listen. Hear what others have to say about what THEY would like to get out of a parent group? What kind of group are they interested in?

Some groups like to plan a whole year of meetings in advance, publicizing their dates and their location. Other groups meet more sporadically without a great deal of advance planning.

Who might be willing to help and in what ways? You may want to consider directly asking for volunteers for various tasks such as bringing refreshments, designing flyers, and so forth. Don’t hesitate to start immediately looking for a partner or small core group who will be able to work together on building the group. Leave time for everyone to get to speak and especially to share a bit of his or her story. Through sharing stories those in attendance will come to see how much they have in common with each other.

While often parent groups create a safe place for parents to share concerns and worries, be aware that not all parents are equally comfortable doing so and may respond better to more learning oriented groups (i.e.: inviting a speaker to educate the group) or task oriented groups (creating a resource library, newsletter, etc). What type of group you become will depend on the needs of the parents involved. Your group may change over time as parents gain confidence and skills.

For more information on this topic and other apraxia topics: