When you have a child with a disability, your world can be filled with many unanswered questions. And sometimes it can feel like a very lonely struggle. But you are not alone. The best way to find answers and a source of reassurance and understanding is to get together with other families who are going through the same thing, or have been through it and are willing to lend their support to others.
One great way to connect with these families is to find a parent support group in your area. Parent groups can share information about the disabilities of their children, school services, therapy, local policies, funding sources, transportation, medical facilities, emotional support and much more. The number one recommendation of this entire site is to connect with other parents who share your experience.
But what if there isn’t an existing group that meets your needs? The answer might be for you to start one.
- Does a group for parents like me already exist?
- Does the existing group fit my needs at this time in my life?
- Do I just need an informal group to share resource information and meet others in my community, or do I want to be part of a more formal organization?
After you have answered these questions, you can start to look for what you need. If you can’t find it, you can start your own group.
Keep in mind that nowadays not all support groups meet in person. Many parents find meaningful support through online support groups. Use Google or another search engine to see if some of these groups might meet your needs.
- Time and energy—Don’t overlook or underestimate this. Starting a group takes a lot of commitment. Having another parent to partner with to start the group can be a big help
- Volunteers to plan and organize—You will want to round up a core group of parents who can follow your lead in getting the group up and running.
- Meeting space—You need a reliable place to hold every meeting. At first, meeting in members’ homes may suffice. But check with area churches, community centers or even community-oriented businesses (like restaurants) to see if they have a meeting space you can use on a regular basis at little to no cost.
- A way to get the word out—It doesn’t have to be fancy, but you need to decide how the members of the group will communicate in between meetings. Email can work well, but a listserv is often easier once a group grows past ten members. Yahoo will let you set up a listserv for free.
This is up to you and your co-founders. Groups can be formed to support any need. But it helps to define who the group is for at the beginning, so that as it grows, it meets members’ needs and expectations. For instance, if you were just going to start a group for parents of children with any type of disability, you might find that as the group grew, there were so many different issues to deal with that no one was satisfied. The more specific you are in defining who and what the group is for, the more likely you are to create a group of people with a common goal and purpose.
Again, this is up to you, but something you should think about and discuss. Some groups are intended for parents to talk informally and share their experiences. In such cases, it may not be necessary to have someone to formally lead meetings. Other groups may seek to create activities or raise funds or otherwise achieve formal objectives. For these groups, it may be best to have a facilitator to lead meetings, and leadership roles to take on various group responsibilities.
This is a parent group, so remember, someone has to watch the kids. You need at least one trained child care worker who is familiar with the needs of children with disabilities. If you have to pay for this person’s services, make sure that all parents in the group are willing to share the cost. Your trained child care worker will probably need some help, so consider seeking high school or college student volunteers, or volunteers from youth or adult church groups.
To find members, you’ll need to get the word out. There are many free ways you can do that:
- Newsletters for schools, community organizations and churches
- Bulletin boards in doctors’ or therapists’ waiting rooms
- Window signs at durable medical equipment agencies and other service providers
- Messages through school backpacks (the special education department at your local school district may help)
- School district websites and campus message boards
- Local newspaper and radio station community events announcements
- Prepare for it to take time for your group to grow—don’t get discouraged if it’s not standing room only at the first several meetings. Even with a lot of commitment, it can take up to 6 months for a group to take root, so be patient and give it at least that amount of time
- A core group of parents who can commit to coming to each meeting will help provide stability early on
- Inviting guest speakers to present on specific topics (like special education or local services, for example) can help build interest in a group that is just getting started
- Groups tend to fluctuate between high and low attendance, so don’t worry if you get a big turnout one week and a small one the next
- Don’t just count on organic growth—invite and bring people to meetings, and encourage this practice throughout the group