NEW HAVEN, Conn. — Kaiya Ayotte, 10, of Durham, scoured the picture books for a story with main characters diagnosed with autism. After locating one, she excitedly showed it to her mom before running off to share it with her brother since the character is just like him.

Her mom, Katie Ayotte, said Kaiya was not always this connected to her brother, Henson, who was diagnosed with autism at 3. Over the last year, she’s grown in her confidence and better understands her brother with the help of Sibshops at Southern Connecticut State University.

“She was trying to be a good sister, but just really wasn’t sure how to approach it,” Ayotte said. “Now, I think she tries harder, she finds a way to put her foot in there, like, ‘I can help you do that … then maybe we can try that.'”

The relationship between someone and their sibling, regardless of disability, will most likely be the oldest and longest connection they will have, even outliving their parents, but developing a healthy and lasting relationship needs to start early, said Zara DeLuca, assistant professor in communication disorders at Southern Connecticut State University.

To support siblings across the state, DeLuca is the lead facilitator for the sibshop at Southern Connecticut State University. She is also one of the co-leaders for CT Sibling for adults to create a continuum of support for siblings across the state. CT Sibs is relaunching this month after shutting down for several years.

As someone with a sibling who has special needs, DeLuca said growing up with a loved one who has a disability can lead to having a variety of complex feelings and needs throughout childhood and adulthood depending on the situation.

DeLuca said the success of the familial unit and working together to help a loved one with a disability is based on the “Three C’s” — cohesion, coping and caregiving. These family units are often close-knit and rely on each other to create a shared sense of responsibility.

Although there’s a lot of joy in that cohesion, DeLuca said families also face unique challenges, traumas and systemic barriers caused by an ableist society. DeLuca said there are also general stressors that come with caregiving that can cause tension in family life, including interrupted sleep schedules or having an odd home set up to accommodate the disability. Constant microaggressions also take a toll mentally on families.

Growing up

Julie Wolf said she started working as a clinical psychologist because of her own experiences growing up with her brother diagnosed with autism. Wolf is the associate professor of child psychology and director of the developmental disabilities clinic at Yale’s Child Study Center.

Over her career, Wolf has noticed a great emphasis on encouraging parents of children with disabilities to find support to help develop strategies, exchange ideas and resources and connect with others. She said she doesn’t see that same focus on fostering sibling relationships though.

Resources for siblings are also relatively rare and may not be able to address the siblings’ changing needs as they grow up and their feelings get more complicated.

Wolf said she often provides education around disabilities to very young children. Teenagers, especially those who help with caregiving, need support with a space to let them explore complex feelings and their relationships with their siblings.

Introducing support for siblings at a young age helps them identify differently with their loved ones’ disabilities or special needs, Wolf said. By nurturing the relationship, she said children feel empowered to become more involved with their family.

DeLuca said the model for Sibshops was created and popularized by the Sibling Support Project, a national program that promotes the role siblings play in families and communities. She opened a chapter at Southern Connecticut State University two years ago for children 6 to 13. Around 15 to 20 children regularly attend the monthly meeting free of charge.

Each meeting starts with a socio-emotional activity, including coloring, affirmations and a feelings check-in. By connecting and sharing stories, the children can reflect on their relationships with their siblings in a new and positive light. Then, they have an activity that encourages interaction between everyone, such as construction contests, cooking and gardening.

“We may all have fond memories of that with some of our siblings, but they don’t have that,” she said. “So now we’re building those memories and making opportunities for those memories in the sibshop.”

Ayotte said she learned about DeLuca’s sibshop through a Facebook group while looking for resources for Kaiya to help her process her feelings and foster her relationship with her brother, who can experience “meltdowns” and certain challenges. He also has specific interests and preferred activities, including his stuffed animals and cleaning.

Although she was trying to be a good older sister, Ayotte said Kaiya seemed to have difficulties connecting with Henson and finding activities to share. Ayotte said she might have also been annoyed by the extra attention and support Henson received. Ayotte said she struggled to communicate her feelings, which was a “red flag.”

Joining SibShops helped Kaiya realize she wasn’t the only one with a sibling who has disabilities, Ayotte said. She met other people who had siblings with a variety of physical and developmental disabilities and that helped her feel less alone. Seeing adults with siblings with disabilities, including DeLuca, has also helped.

Kaiya has become noticeably more confident and comfortable in her role as an older sister, Ayotte said. She tries to make a bigger connection with Henson, with activities they both enjoy but she also sets boundaries.

“I do feel like she just came out of her shell as a kid. She’s still at that age where she’s young, and she’s discovering herself, but I think that (Sibshops) has been important along the way,” Ayotte said. “She’s kind of found herself and found her place in this family too.”

The longest relationships

DeLuca said she wanted to create a continuum of care and start an adult sibling group. Instead, she found PATH’s CT Sibs and offered to help lead it.

PATH has been around since 1986, helping families with children with special needs and developmental disabilities, said Carmina Cirioli, co-executive director.

CT Sibling Network started in 2016 as a chapter of the national Sibling Leadership Network before it was integrated into PATH.

Ciroli said she’d host monthly in-person meetings and activities over Facebook Live during COVID. She’d also invite speakers about fostering sibling relationships and caregiving. Participants also received specialized training to then match up with another sibling for further peer-to-peer support.

But the program was put on the back burner because Ciroli said they struggled to gather participant interest, and other programs kept things busy. It was revived when DeLuca and Wolf stepped up as co-leaders.

One of the challenges of gathering interest for CT Sibs is that the adults are busy, often juggling jobs, families and sometimes caring for their siblings with disabilities. Wolf, who is also a PATH board member, said many may not realize they need peer support until they meet each other for the first time and connect on mutual experiences.

The first few CT Sibs meetings will be virtual to minimize attendance barriers, gauge interest and brainstorm potential group activities, resources and events with everyone.

DeLuca wants everyone to connect in a big group with others who understand without having to explain and build friendships from there. She’s also looking to learn what CT Sibs can do to advocate for caregivers on a legislative level.

© 2024 Journal Inquirer
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