By Brooke Marshall, Southwest Michigan Second Wave

Eight-year-old Margot Weiner hams it up during the Zoom interview, flooding the chat with emojis and grinning right into the camera. Her brother Jonah is two years older, and Margot wants nothing more than to play with him. 

“Sometimes we talk and have fun, but he doesn’t like playing with toys,” she says, frowning. 

The reason Jonah doesn’t play with Margot goes beyond the traditional dynamics of older brothers and younger sisters: He has autism. 

The CDC estimates that developmental disabilities affect one in six children in the U.S. What’s harder to estimate is how those disabilities affect their families. As parents juggle medical visits, support programs, and the needs of their disabled child, their well children may fade into the background, which can have lasting mental health repercussions. Sibshops aim to change that in a surprising way: by harnessing the power of play.

What are Sibshops?

Peek into the joyful chaos of a Sibshop, and you might think you’re seeing a playgroup where the participants all happen to be siblings of children with disabilities. Sibshops aren’t therapy, and there’s no curriculum; the goals are simply to give participants the opportunity to connect, share their experiences, ask questions, and offer advice. Facilitators are there to provide information, but if all they do is oversee that day’s activities, that’s fine too. 

As the coordinator of the University of Washington’s Supporting Extended Family Members Project in 1981, researcher and sibling Don Meyer pinpointed a weakness in existing sibling support programs of the time. 

“He read about very clinical models that, quite frankly, didn’t sound like very much fun for children to attend,” says Emily Holl, a sibling and director of Sibshops’ parent organization, the Sibling Support Project (SSP). “He was intentional about creating a model that revolved around fun and play, which is the first language that we all speak.”

Meyer piloted the first Sibshop in 1982. Today, there are more than 550 Sibshops in 15 countries — including Margot’s group at Advocacy Services for Kids (ASK) Family Services in Kalamazoo.  

Research suggests that this playful model can have a serious impact. Studies have found that participants overwhelmingly enjoy Sibshops, and that the majority of parents feel they’re informative and beneficial. Participants report increased empathy for people with disabilities, and improved relationships with their siblings. Those benefits may be lifelong. In a 2005 University of Washington survey of 30 adults who participated in Sibshops as children, 90 percent said the program had a positive effect on how they felt about their siblings. 

The golden rule at Sibshops is: What you say there stays there. Broad themes and topics are fine to share with parents, but personal details are kept private. That confidentiality gives kids the space to talk honestly about their experience — including the silver linings. 

“I just enjoy them talking about, ‘That’s my norm. My sibling always has been that way. I live with them and I love them the way they are,’” says ASK Sibshop co-facilitator Lili Nogueira. “It’s beautiful to see the relationship they have with their siblings.” 

Why focus on siblings? 

Years ago, Margot and Jonah’s mother, Allison Weiner, enrolled Jonah in intensive applied behavior analysis therapy that often exceeded 40 hours per week. Margot had to tag along. 

“Poor Margot lived in a car seat. I would just take her out to his appointments and we would hang out in waiting rooms,” Weiner says. “I’ve realized that she’s completely spoiled rotten because of the parent guilt we have for the attention that we’ve taken from her and given to Jonah.” 

Weiner’s experience, while painful, isn’t unique. Children with special needs require extra care, which can disrupt the balance of the familial relationship. Holl says siblings may have overlapping feelings of resentment, guilt, and isolation and over time may internalize the idea that their needs come second. 

“We hear from adult siblings that learning to put themselves last affects their adult relationships and how they view themselves in the workplace,” Weiner says. 

Some parents may avoid conversations about disability, which Holl cautions “may inadvertently create an atmosphere of secrecy, stigma, and shame.” Others may tap siblings to help out with caregiving responsibilities, which can lead to an outsized sense of responsibility known as “parentification.” Some siblings go as far as keeping their own problems a secret to avoid further burdening their parents. 

How do Sibshops help?

Margot lights up when she talks about Sibshops. 

“For the Halloween one, we did apple bobbing,” she says, beaming. “We each got our own bucket and we got to stick our heads in and we got apples.”

She says she likes Sibshops “because I get to be with people who feel the same as me.” 

At her last Sibshop, she made a fort out of yoga mats with a new friend, Josh. “And we made Rice Krispies Treats^TM!”

ASK Sibshop facilitator Tabi Swain explains with a big laugh that making Rice Krispies Treats is by far their most popular activity. Many of the participants in ASK’s Sibshop have ADHD. Having an activity to do while talking makes it easier for them to focus. But it’s also an antidote to parentification, a way to let the kids just be kids. 

“I like the Rice Krispies because they start talking to each other,” Swain adds. “It starts really silly at first, but then they’ll be like, ‘Oh, this reminds me …’”

Swain shares that one of the SibShop participants, an 11-year-old whose father died in a car accident, shared that his friend recently went through the same experience, that he was sad for her, and that he wished she didn’t have to feel sad. Swain realized he was expressing empathy without even meaning to — all while “elbow-deep in Rice Krispies Treats.”

“It really helps bring down those barriers,” she says. “Plus, it’s fun. How many times do kids get to be messy and dig their hands into food and then lick their fingers and not get in trouble for it?” 

“They are so smart and in touch with their feelings,” Nogueira adds. “It’s really beautiful to see that.”

Even if kids aren’t explicitly sharing coping strategies, the simple act of human connection can have a powerful impact on mental health. Indeed, in the University of Washington survey, the researchers observed that aspects of Sibshops “appeared to serve as protective factors” for at-risk siblings.

Swain acknowledges that Sibshops aren’t always smooth sailing, but the difficulties would be familiar to anyone who works with children: Phones and tablets are distracting, COVID-19 makes parents cautious about sending their kids to social groups, and different age ranges bring unique challenges.

“It’s hard to engage 5- or 6- [year-olds], because they don’t necessarily have that maturity to talk about feelings,” Swain says. “[Teenagers] are so sensitive about how they look to people that it can be hard to get them to have that abandon. It’s not that you can’t engage these kids, I just think it would take more curating … It’s a pretty forgiving model, honestly.”

Then there’s the issue of finding the right facilitators. A 2003 University of Manitoba study suggested that facilitators who aren’t siblings may not fully grasp the program, but those who are might approach it with self-fulfilling attitudes. Swain, who describes herself as a fixer, says she sometimes struggles with slipping into therapy talk.

But perhaps Sibshops’ biggest problem is availability. Limited research into the importance and efficacy of sibling supports translates to limited funding, fewer Sibshops, and more siblings potentially slipping through the cracks. Holl says SSP is working to establish research partnerships and continue to proliferate the program.

“Anyone who knows me knows that my goal is a Sibshop on every corner,” she says with a laugh. 

Weiner agrees, adding that she wishes they had Sibshops for very young participants and, perhaps only half-jokingly, for parents. Although she thinks Sibshops help Margot recognize that she’s not alone, the important thing is that she’s having fun. 

“She feels like it’s her own thing, and it’s special for her,” Weiner says. “That goes a long way with her.”

Beyond her enthusiasm for apple bobbing, Rice Krispie Treats, and yoga mat forts, Margot doesn’t offer much insight into Sibshops. She is eight, after all. She knows that at some point when she grows up, she’ll help care for her brother. Right now, she just wants to play with him.