Two in every seven families has at least one member with a disability (US Census Bureau 2007). And an April 2018 report from the Centers for Disease Control and Prevention indicates that 1 in 59 children has been identified with autism spectrum disorder (ASD). These are just two statistics that suggest our churches are filled with individuals from families experiencing special needs—or they should be if they are reflecting the demographics of the communities around them.
Among those affected by the challenges associated with disability are the siblings. It’s fair to say that many special-needs siblings are bringing a myriad of spoken and unspoken needs to their parents and their churches. And this presents us with unique opportunities to connect with siblings in ways that ripple positively into their families, throughout our faith communities, and the world.
CONSIDER SOME EXAMPLES:
Nick’s brother has autism and is nonverbal. During Nick’s wedding vows, his brother started making noise. The pastor pressed on while many wedding guests resisted the urge to stare. A caregiver whisked Nick’s brother out of the sanctuary as quickly as possible. The next day, Nick expressed regret about how the situation was handled. To the surprise of his family, Nick had wished his brother would have been kept in the service, even if it was disruptive for others.
Lauren’s older sister has Down syndrome and loves to dress up. On the day of Lauren’s wedding, her sister was over the moon with excitement. When it was her turn to walk down the aisle with her groomsman partner, Lauren’s sister made a cute scene that guests will never forget. Lauren wrestled privately with resentment. As had happened so many times before, Lauren felt her sister had stolen her own special moment.
Liz’s brother has cerebral palsy. Liz’s mom told the children’s pastor that Liz will be her brother’s buddy so he can participate in Vacation Bible School. Liz is enthusiastically helpful with her brother but sometimes wishes she could interact like a sister instead of a caregiver during church family activities. Liz’s mother hopes her daughter will attend summer camp with her sister one day too. It gives her great comfort to know her daughter is so experienced with her sister’s needs.
Jamie’s sister came bounding into the youth group room ready for her favorite part of Friday nights—the worship. In between dancing and bouncing, she was giving hugs and would occasionally drool on other students. Jamie is embarrassed by her sister but wishes her friends were more accepting. It gets tiring for Jamie to have to explain her sister’s behavior with friends at school, when visiting her house and at church. Sometimes she wishes the youth leaders would speak up and encourage more understanding so Jamie wouldn’t always be the one having to give the education.
Marta remembers enjoying youth group where she could have fun with her friends without thinking about the complexities of life at home. Nobody ever talked about her sister there and Marta was relieved she didn’t have to answer a lot of questions like she did at school. She liked that she wasn’t treated differently at youth group because she had a sister who was frequently hospitalized and needed constant attention at home.
Danielle is the third generation in her family to attend Trinity Church. She enjoys the weekly women’s Bible study small group while her new baby is in the nursery. Lately, she’s been struggling with how to ask for prayer for her family because the situation with her adult brother is growing complicated. He acquired a brain injury after an accident during his toddler years. The fact that her parents are aging caregivers is weighing on her mind. She wants to request prayer but respects her parents’ desire for privacy.
Did any of these sibling reactions surprise you?
In circumstances like these, how might parents, church leaders, friends, extended family, and others come alongside the special-needs siblings and communicate most effectively with them?
It’s worthwhile for us to explore some “best practices” for communicating with those who have a sibling with special needs.
- Be willing to initiate conversation and ask questions. Step into communication with intention. Your interest and willingness to engage in caring conversation matters.
- Make all topics and needs safe to express. Siblings of someone with special needs may feel their wants or needs have to take a back seat to the needs of others in their family. They may not feel empowered to advocate for themselves. Someone who has a sibling who is non-verbal may be accustomed to expecting more intuitive communication. As a result, they may not be inclined to voice their needs and hopes or be in touch with their feelings. They may take for granted that others will know what they want.
- Be careful about making assumptions. Get to know what really matters to a sibling. Different families and individuals will have their own unique preferences, even in similar situations. Furthermore, situations and preferences can change. You won’t necessarily be able to anticipate what they want without a deeper understanding of their situation and the family dynamics involved.
- Remain sensitive to the ebb and flow of stages and seasons. A sibling’s need for information and understanding may vary depending on their age, maturity and changing circumstances. For example, times of transition (e.g., a move up to youth group, a graduation, a move out of the home, a wedding, the death of a parent) are good times to ask questions and learn what may be helpful. No matter who is facing the transition in the family, it affects each family member differently and disability often adds layers of logistical, emotional and relational complexity.
- Commit to persevering prayer. Individuals in a family with special needs are often hesitant to ask for prayer. For example, many worry about sounding like a “broken record,” alienating people or wearying friends with the details of their challenges. Keep an open invitation for prayer requests. Those friends who ask for updates and follow through are highly valued.
Fostering great communication with the siblings of people with special needs can have far-reaching benefits for them, for their family, for you, and for your entire church.
This post is adapted from an article by Lisa Jamieson that first appeared in the Key Ministries blog April 15, 2018.
Lisa Jamieson is a caregiver consultant, pastoral counsellor and author of popular books and Bible studies including Finding Glory in the Thorns and Jesus, Let’s Talk. She leads a weekly online discussion group welcoming caregivers in families living with disability. Lisa and her husband, Larry, are co-founders of Walk Right In Ministries, a non-profit organization building faith and community with special needs families. They live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome.