If we were going to attend this church, my son would be unable to join the other kids in children’s church. My spouse or I would have to sit apart from the rest of the congregation in a “family room” with him. As I feared, our search for a community of faith would have to start again.
The next week, we just stayed home.
We were tired, discouraged and longing for community. A place of rest and refreshment always seemed out of reach for our family’s special needs. At one point, we didn’t attend church for a year. What was the point if we were going to be quarantined in a “family room” to care for our boys — we now have two sons who are nonverbal and on the autism spectrum — with little to no interaction with anyone else? It was easier to look after them at home.
Our periodic disengagement from organized religion is not unique. Across the United States, children with developmental or intellectual disabilities are much more likely to never attend religious services than are children with no health conditions.
In a new study, as part of my work as a sociologist of religion, I analyzed three waves of nationally representative data on children in the United States. I found that the odds of children on the autism spectrum never attending religious services are almost double what they are for children without a chronic health condition. The odds of never attending religious services for children with depression, or a developmental delay or learning disability, are also higher (1.7 and 1.4 times greater, respectively). This is not true of children with chronic health conditions that are more physical in nature — asthma, diabetes, or hearing or vision problems. Those children are no more or less likely to attend than children without a health condition.
My work also shows that these findings are stable over time. From 2003 to 2012, children with chronic health conditions that primarily influenced communication and social interaction were consistently less likely to attend religious services.
These children may not be able to act like everyone else around them. They may have a hard time sitting still or listening quietly. They may not be able to tolerate loud music or boisterous games. They may stand up when the rest of the children are seated or call out when everyone else is quiet.
As parents, it’s difficult to have to continually explain, apologize and advocate for your child, especially in a faith community that might not see including them as important (and might be annoyed when moments of silent prayer are interrupted). Congregations themselves are a pivotal reason children with chronic health conditions attend at much lower rates.
Faith communities often create barriers to inclusion with their physical architecture (when there are no wheelchair ramps), liturgy (when rituals or sacraments are not adapted to meet individual needs), communication (when lights, sounds or visuals limit participation), programming (when activities present obstacles for children with different needs) and attitudes, according to research by Erik Carter, a professor of special education at Vanderbilt University.
And sometimes, the attitudes from congregants can be devastating. These include degrading comments or behaviors signaling that a child with a health condition is not welcome. We have had people tell us that a child who is a disruption in church probably shouldn’t attend. Others have asked whether children with certain health conditions “really get anything out of participating.”
Many parents report that their children with disabilities have been unable to participate because of lack of support and said their congregations had never asked how to best include their children. And like us, more than half reported that they were expected to stay with their children during worship services.
We know how isolating that is. For a year, we spent every Sunday morning at our current church alongside nursing mothers and sick children; we watched the service on a television in the “family room.” Occasionally, my wife or I would sit in the sanctuary, alone or with friends, while the other stayed with our boys. We knew that cultivating support for our children would take time, so we stuck it out. But many families like ours may not be able to make that commitment. Requiring that parents provide care for their children every Sunday morning negates a chief reason for attending religious services: connecting with others of the same faith.
In a survey of more than 400 parents of children with special needs, researchers found that one-third of them had changed faith communities because they felt their child was not included. Finding a new one, though, is a significant challenge. In another study of that survey, a mother was quoted as saying, “We wish we had a community to belong to, however . . . we have not had the time or energy to seek-out and prepare (educate) a new spiritual home for ourselves.”
Congregations also pay a price for excluding families like ours. They miss out on our service — we want to serve as much as we need to be served. We want to greet people as they arrive, play an instrument during worship, serve coffee during social hour, care for other children while their parents worship.
And faith communities compromise their credibility when they do not work to integrate families with children with chronic health conditions. As a practicing Christian, I speak directly to my faith tradition here: When we claim that Jesus said to let the children come to him, but we do little to make that possible for every child, our rationalizations about a lack of resources, space, volunteers or expertise ring hollow. When we claim that Jesus once took a little (five loaves and two fish) and met the needs of many, but we act as though he won’t help us meet the needs of others; when we claim that our faith is for all people but tolerate the exclusion of those with various physical, mental or emotional needs, we fail.
A first step for faith communities is to make a theological and ethical commitment to welcome and value children with chronic health conditions. This means moving beyond compassion, which is usually in broad supply in faith communities, to actionable steps. Have a plan in place when a child with a disability walks through your doors. Cultivate connections to members of your congregation who have a heart for children with special needs. Perhaps there are congregants who have expertise in this area.
Congregations could also consider providing a safe place for children with special needs, like a sensory room — a therapeutic space filled with toys and apparatuses that help soothe kids experiencing stress. Creating a whole room might not seem feasible for many places of worship, and indeed for some, it is not. But many congregations build nurseries to care for infants. Faith communities value babies, and making space for them signals that commitment. Children with special needs should be equally valued. Our current faith community happens to be opening its own sensory room this weekend.
Today, our two boys enjoy Sunday mornings. Each has an adult “buddy” who spends time with him and provides support when needed. These buddies are not trained professionals but generously volunteer their time to help our sons, who benefit from a familiar face on Sundays and sometimes need help knowing when to sit or when to play. These volunteers came forward on their own after learning of our needs. Now both our sons have fewer struggles — fewer tears and anxiety attacks — which brings us so much joy.
Our boys’ disabilities often isolate us. Some days, taking a trip to the store can feel like too much. This doesn’t mean we don’t want connections with others. We just need help in cultivating and maintaining them. When we make it through a Sunday morning, we feel an intense sense of hope, gratitude and even achievement. For a moment, our sons’ disabilities do not define our family’s existence.