My husband and I have three children in their twenties. Our youngest, Carly, has Angelman Syndrome. She is a delightful young lady who has always loved to be part of worship services with us. Though she is not verbal, she worships heartily, often with her whole body wiggling, dancing or bouncing. And when she’s inspired to vocalize during worship, it’s a sweet spiritual encouragement for us, not just because hearing her voice is relatively rare, but because hearing her vocalize in a manner of “singing” is even more rare. It is challenging for her to turn her voice on. It is even more challenging for her to turn it off, especially if she’s excited.
Carly’s smiles, dancing and “singing” during worship are inspiring. But when it’s hard for her to settle her enthusiasm after the music stops, life at church gets very uncomfortable for our family. Carly’s vocalizing may continue into whatever follows—prayers, announcements, a sermon. Sometimes she settles beautifully after worship, other times she calms down quickly but then blurts out something loudly and unexpectedly. With some regularity, one of us needs to rush her out of a service as discreetly as possible when she becomes disruptive. We are thankful to be part of a patient congregation that has grace when we keep trying. As Carly continues to mature, she has been able to remain with us for full services more often. That is a gift to our family and to our church.
Our middle daughter, Erin, recently shared an encouraging story with me about a family she encountered at her church in California. Erin wrote:
I was at church sitting with a few friends, getting ready for worship to start. I noticed a mom in the row in front of us who was saving a few seats and looking around for the others still coming. A few minutes later, she turned around and addressed my friend and me. She smiled politely, said hello, and then proceeded to explain that her son had special needs. “He only comes into the service for worship,” she said. She wanted to warn us that he might be a distraction. Essentially, she was giving us the pre-apology for the “inconvenience” of having to be the ones sitting in the row behind them.
This pre-apology is a routine very familiar to me. My sister, Carly, isn’t verbal but can make her share of noise, especially during the quiet moments of a church service. Making pre-apologies is instinctive for me—as if it will somehow cover a multitude of subsequent mishaps that are sure to follow. Mostly, I do it to turn off the alarm that sounds in my head whenever Carly and I are in any public space together. The alarm screams, “Run for your life!” and “It’s not worth it (to hang out here)!” I try to pretend people aren’t staring. Maybe they aren’t staring. Maybe it’s just a default setting I’ve fine-tuned throughout the years called “inconvenience mode.” Either way, it’s not an easy thing to turn off, even with a pre-apology.
I took a moment to listen to what the mom was trying to say and read the hidden panic on her face. Then, as compassion welled up within me, I said, “It is not a problem. You don’t worry about a thing. My little sister dances all through every worship service. Won’t bother me one bit.”
I recognized the expression of shock right away. Is she serious? Did she actually say it won’t bother her? I think she meant it. Honey, she meant it. We can relax now. I understood the impact of having someone say they are un-phased by our mess then give us the freedom to be inconvenient.
I smiled all through worship as I watched her young son, facing the wrong direction, wearing sound-protective headphones, looking around at everyone worshipping. Beautiful. What a gift to be able to turn off one mom’s internal alarm system, even if just for a few moments in worship.
,Erin’s use of the word “pre-apology” offers churches insight about how special needs families feel. Even as a mom, I have learned things from hearing my daughter use this word. For example, I appreciate that being a special-needs sibling has prompted a sweet sensitivity in my children. But this story also highlights that chronic hyper-sensitivity has created stress for them. It has also been a hindrance to the fullness of their worship experience. I am praying churches will increasingly become communities where such hyper-sensitivity is unnecessary.
Does Jesus want individuals and families of varied backgrounds and abilities feeling safe and comfortable to fully enjoy worship and express themselves freely within your church community?
Does your church make special needs families feel anxious about their uniqueness?
If yours is a welcoming and engaging church for special needs families, how did your church get that way?
How can you help your congregation grow more welcoming to special needs families who want to fully engage in your church, especially during worship?
Understanding the “pre-apology” mindset can help our churches create more welcoming, inclusive, and engaging worship experiences for families with special needs. The resulting diversity in our communities helps us better reflect the heart of Jesus among others and enriches our personal experience of Christ too.
Lisa Jamieson is the author of books and Bible studies including the Finding Glory series of resources and the new children’s book Jesus, Let’s Talk. She is co-founder of Walk Right In Ministries and leads the Minnesota Disability Ministry Connection. Lisa and her husband, Larry, have been married 30 years and have three grown daughters. Their daughter, Carly, has Angelman Syndrome and lives at home with them in Maple Grove, Minnesota.
