PLEASANT GROVE — Sunday is not always a happy day for Christian parents with special needs kids, according to disability experts.
These moms and dads often see worship services as a minefield of potential problems, worrying that their daughter with autism will make loud noises or that there won’t be enough room for their son’s wheelchair.
“It breaks my heart. It should be a wonderful family day,” said Ann Hoffman, a physical therapist who specializes in helping children with disabilities, during an April 12 event titled “Special Needs in Religion.”
The event, presented by Kids on the Move, a Utah group that serves families with children with special needs, brought together more than 40 researchers, religious leaders and parents. Participants discussed how faith communities fall short in caring for people with disabilities and shared ways to improve the worship experience.
“Religious people have a willingness to help but don’t often understand what they need to do,” said Katie Steed, an associate clinical professor at Brigham Young University, during her keynote address.
In 2016, 12.8 percent of the U.S. population had some form of physical disability, according to the U.S. Census Bureau's American Community Survey. A similar share of adults (10.6 percent) is affected by cognitive impairment, the Centers for Disease Control and Prevention reported in 2015.
Overall, tens of millions of Americans deal with or care for someone with a disability, and yet few congregations are prepared to serve people with serious mental and physical challenges. Only 1 in 10 faith communities offer congregation-wide disability-related training, according to the Collaborative on Faith & Disabilities.
"At church, oftentimes we see a child behaving in a way that's disruptive or not typical and we think, 'Why don't those parents discipline that child?' What we don't understand is that that's not what the child and parents need. They need help," said Scott Bean, CEO of Kids on the Move.
Many people wrongly assume that they shouldn't offer assistance, Steed noted, because we're taught from a young age to refrain from commenting on someone’s disability. Our moms scolded us for staring, so we learned to “pretend like nothing’s happening.”
But what people who have or care for someone with disabilities need is for their congregation to ask about their situation and offer help when possible, added Steed, who helps run a website at education.byu.edu/disabilities on serving children with special needs in religious settings.
“We need to be deliberately saying, ‘Tell me more,’ and not ignoring one another,” she said.
The importance of communication was emphasized again and again throughout the "Special Needs in Religion" event. Congregational activities are often led by volunteers without specialized training, so people with disabilities and their loved ones need to be clear about their challenges and expectations, said Blake Hansen, a special education professor at BYU.
"It's really important that all sides in this have really good communication," he said.
Even brief conversations can inspire simple, but meaningful, changes that make people with special needs feel more involved, participants noted.
For example, Hoffman's Lutheran congregation created a new role for a young church member with autism after speaking with his parents about his interests and abilities. At the end of each worship service, he blows out the candles.
"He doesn't go to the Sunday School program, but he loves that work," she said.
Steed helped a different congregation coordinate their response to a boy who often runs to the front of the church, disrupting the service. He responds well to visual cues, so church members seated along the aisle have started carrying small stop signs to hold up if he starts to run.
"I think that's a beautiful example of a congregation coming together," she said.1 comment on this story
When religious groups develop better approaches to worshippers with disabilities, they strengthen church members' relationships to one another, said Bean, who has an adult daughter with autism.
"What a great way to really care for each other in our faith communities," he said.
Mike Moore, who lives in Spanish Fork and assists with the care of six children with autism in his congregation, said the "Special Needs in Religion" event provided the unique training he'd been looking for.
"I feel like I don't know enough," he said. "We can all get better."