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Why Support Groups Are Important... And How to Start One Today

I never set out to start support groups. It's something that happened more organically.

It all began by being exposed to a great meetup for kids with hearing loss led by a music therapist in New York. Each session featured different music activities, which was not only great auditory exposure, but also helped create strong bonds between the participants and led to them opening up by way of talking about their favorite artists, concerts, and songs. I was impressed by this format, a support group under the guise of a music class.

So, when I was a student in St. Louis and had the opportunity to volunteer at a support group, I expected something similar. What I found instead was a structured support group for parents, with childcare (me!) provided for the kids. How could I stand by and hit 'play' on a movie when I knew this time could be used for so much more? This was the start of the Hearing from the Heart program, a support group for parents AND a creative-based support group for children, too.

I had a few more opportunities to do similar concepts for local support groups as well as one-day workshops and conferences both in and out of St. Louis. Each time I found that through more structured creative writing, music, art, and dance, children and teens began to open up, connect with peers, and express themselves more than they ever could have done in a typical childcare setting.

Most recently, I visited Lincoln Library in Springfield, Missouri to do a Sophie's Tales book reading and signing, share Hearing Our Way magazine, and present ideas for how the library can host a local support group both for adults and children. Here are my tips:

1. Create 'like' groups.

It is important to create a safe, intimate environment in which people can feel comfortable opening up. To do so, try to break people into 'like' groups. For instance, if you have a family show up including parents, kids with hearing loss, and siblings, don't keep them all in the same room- children may not feel comfortable opening up in front of mom and dad, and mom and dad's challenges are best said without little ears listening. At the same time, if you have a large group of parents that have older children with hearing loss, and just a couple parents of newly diagnosed babies with hearing loss, it can be very intimidating for them to join the big group. While it can be very inspiring to hear about older children succeeding, it can be equally frightening to hear about the children's challenges after just receiving that diagnosis. If you have enough participants, here are some smaller break-out groups you can form:

  • Parents of kids and teens with hearing loss

  • Parents of newly diagnosed birth-3 with hearing loss

  • Children with hearing loss

  • Teens/Young Adults with hearing loss

  • Siblings of kids with hearing loss

  • Adults with hearing loss

2. Choose a moderator.

When people first arrive to the support group, it can be very awkward. Sharing your family's story is very personal, and people need to feel safe before being asked to open up. Sometimes a lack of structure can make people feel uncomfortable. Instead, have a moderator or leader of the group there to greet people at the door, introduce them to others, and start the session. When choosing a moderator, think of someone with a relatable, positive attitude- this could be a parent of an adult child with hearing loss or a nonjudgmental professional. This person does not have to have a long lesson or list of questions prepared. Often times one prompt is enough to get people sharing. Below are a few that could work.

  • Let's each share about how our family's week went.

  • What were the challenges your child faced this week?

  • What is the next step on your child's hearing journey?

  • How did you feel when your child was first diagnosed, and how has that changed now?

3. Marketing is king!

Words like 'support group' can be a big turn-off for certain people. They especially may shy away from signing up their child for a support group- it can sound too much like therapy or have a negative connotation. Instead, when creating a name for your program, think of words that will be perceived as welcoming and truly supportive- a fun, positive place for connection. Ideally, the support group is not for kids who are struggling- it is for any child with hearing loss, because all children should have the opportunity to talk about their hearing loss in a safe space.

  • Hearing Buddies

  • Listen Up Bunch

  • Hear For You Group

  • Ear Buds

4. Don't forget the kids.

Inviting parents to a support group is the perfect opportunity to offer the same support to their children. Rather than asking parents to find babysitting, which will likely reduce your number of attendants, offer value-added for their children and watch your program grow! Just as you chose your moderator for the adult group, choose a great leader for the children's program that will plan well thought-out engaging activities that will keep kids busy but moreso promote their self-expression and encourage them to open up more. Kids love to connect with role models close in age, so a responsible young adult, such as a college student (perhaps with hearing loss, or one who is studying deaf education) could be great choices. Activities that promote self-expression include:

  • Hearing MY Way autobiography project

  • Cartoon strip project

  • Auditory Art Project

  • Freeze Dance Fun

  • Sophie's Tale Your Way

Support groups, when done right, can be really wonderful, safe spaces where important bonds are formed, information is shared, and progress is made. Those that have been to therapists know the value of having someone there to listen and guide, but a support group is so much more than that- it's shared experiences. It's feeling like you're not alone, and making something that can feel 'abnormal' feel more normal because you're going through it together.

If you want to start a local support group or host a creativity workshop for kids, we're all ears! We can help you design a great program that fosters creativity and connection, with great branding, too! Contact us.

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