Trial of faith: Parents, children with autism and church

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Stansbury Park » Ten-year-old Chandler Garrard, clad in a white athletic shirt and gray camouflage pajama pants, promptly tears off his sneakers and socks when he enters the Millpond LDS Ward meetinghouse in Tooele County one Sunday morning this fall.

Sitting in the back of the room during Primary, he occasionally yelps and jumps up to contort his body, prompting a few children to turn and stare. Enamored of The Book of Mormon in Spanish that he picks up in the church's library, Chandler perfunctorily dumps it in the garbage can.

During sacrament meeting, Chandler -- flanked by his parents, Stephen and Ashlyn Garrard, his brother and his sister -- pushes against the bench in front of him with his bare feet, jostling a middle-aged couple.

It is one of those moments that Ashlyn is talking about when she articulates a longing that seems universal among parents with autistic children:

"We spend our lives trying to be invisible, the family nobody notices."

Indeed, many parents of children with autism give up on public worship altogether, weary of the frustration and embarrassment, angry with the real or perceived judgment of others.

'Should not be' » It is not easy to worship, nor to watch the discomfort of those around you, when your child blurts out unintelligible noises, rocks back and forth or bolts for the door at random moments.

"I can't tell you how many mothers have come to me and said, 'We stopped coming to church. People look at us, and it's just not worth it,' " says Brent Petersen, a psychiatrist and clinical director at the Carmen B. Pingree Center for Children with Autism.

"That just should not be," adds Petersen, who also heads the Salt Lake Butler West Stake of The Church of Jesus Christ of Latter-day Saints.

Carol Ruddell, a member of the Roman Catholic Church's Salt Lake City Diocesan Commission for People with Disabilities, agrees.

"[Church] should be the most inclusive, the most accommodating, the most accessible," Ruddell says. "That's what faith is about."

'Autism on wheels' » Petersen and parents of children with autism spoke last month at a Faith and Autism symposium, sponsored by the Autism Council of Utah and the Utah Parent Center. The event taught faith leaders how to minister to families with autistic members, but it also featured a forum for parents to share their burdens.

Faith communities, Petersen says, should make it their business to understand and support families with autistic children, starting with the fact that the kids' behavior is a result of a brain disorder, not bad parenting.

"Don't exclude them," he says, "because they don't fit."

Tina Persels -- whose 9-year-old son is autistic, has chronic lung disease and uses a wheelchair -- says her family had to stop attending Christ United Methodist Church because there were too many stairs.

"I have autism on wheels," Persels says.

The mother of two autistic boys whose husband is an LDS bishop says she is, in effect, a "single parent" at church each Sunday.

If someone else sits on the family's usual bench, her oldest has a "meltdown," and she and the children have to go home. Once, her youngest bit a neighbor who took him out of the chapel as a favor for his mother. The woman was bleeding from the lip when the mother found them.

"We might," she concedes, "end up not going someday."

'I lost it' » That was an option the Garrards weighed and, ultimately, rejected after an episode last fall.

Stephen Garrard found Chandler naked in the foyer during sacrament meeting after the boy had stripped off church clothes -- not for the first time -- and his wet diaper.

Stephen cinched up his boy's belt and marched him out the door and toward the family van. Feeling the disapproving stares of women from the ward that shares the building, Stephen looked down and saw that Chandler had dropped his dress pants to his ankles.

"I lost it. It was my breaking point. I just stayed in the van and cried," Stephen says. "I thought, 'God wants us to go forward in faith, but my son has found a way to keep us from going to a church that means so much to us.' "

The Garrard family did not abandon church, partly because friends in their LDS ward rallied. There was no reason, they assured the Garrards, that Chandler couldn't come to church in his pajamas if that reduced his stress.

Two friends stepped up to take turns as Chandler's teachers, and the gentle love he feels from them keeps him content during meetings, giving Stephen and Ashlyn the freedom to devote themselves to their church duties.

Though Ashlyn jokingly refers to her home's motto as "the Garrards, where anything can happen," the couple have a Sunday morning routine that keeps stress to a minimum.

Just before heading out the door, they give Chandler a pair of dark athletic shorts or sweat pants, his shoes and socks.

On this Sunday morning in late September, Chandler wants neither.

Standing in the room that his parents dub "Chandler's Bachelor Pad," the 10-year-old balks, shifting his weight from foot to foot and biting his index finger.

When Stephen pulls up the shorts, Chandler tugs them down.

Ultimately, Stephen allows the boy to pick his own bottoms from his drawer: fleece pajama pants in a gray camouflage print. "He won the battle," says his dad, who has been trying to get Chandler to wear solid colors.

Ashlyn, in the adjacent bathroom curling 7-year-old Brookelle's pigtails into ringlets, shakes her head, resigned but not happy with the compromises she and Stephen make.

"The real reason I want him to get dressed is so he'll look handsome and well dressed," says Ashlyn, knowing how easy it is to assume an unkempt child with a disability is an unloved child.

Barefoot » The Garrards insist that Chandler walk into the meetinghouse in his shoes and socks, but once inside, he's barefoot for the next three hours. He shows no sign of hearing a boy of about 7 who sidles past with this comment, "Mister, you have to wear your shoes."

His teacher this week, Kevin Johnson (he takes turns with Liesel Nelson), is with Chandler for the first two hours, slipping him Starburst or Skittles candy to reward good behavior.

Brookelle and their brother, Colby, who is 5 and less severely autistic, meanwhile, go to Primary and classes with their peers.

Chandler sits, humming, in the back for the first 20 minutes of Primary, jumping up now and then, yelling inarticulately. At one point, his father, the Primary chorister, asks Chandler to help him lead a song. Chandler lopes to the front and lets Stephen move his arms up and down, but the boy's face is devoid of emotion.

After a while, Johnson decides it's time for a one-on-one lesson.

They stop by the church's library, where Chandler searches among the two dozen copies of The Book of Mormon for the one he always picks -- a Spanish copy -- and they go to a private room where Johnson has Chandler practice writing letters, simple words and his name on the blackboard.

Chandler dumps The Book of Mormon into the garbage can and drops his candy wrapper on the floor.

To emphasize a lesson in gratitude, Johnson traces his and Chandler's hands with chalk on the board. When he tells Chandler, "Heavenly Father made us special with our hands so we can do things," the boy folds his ears and hums to block out the sound. He lifts one foot, and then the other for Johnson to trace.

Johnson says he doesn't pressure Chandler to wear his shoes and socks; it distresses him too much.

"I just have to be flexible. If he gets anxious, we'll go for a little walk," Johnson says. "When you wonder how much he's getting and he comes up and gives you a hug or a kiss, that means a lot."

A godsend » As sacrament meeting begins, the Garrards sit at either end of their children. Lunchtime has come and gone, so Chandler, Colby and Brookelle snack on raisins, crackers, cookies and cereal.

Chandler pushes on the seat in front with his feet, bounces, hums, stands on the bench or lies at his parents' feet.

Colby moves his head back and forth, back and forth.

After the sacrament is passed, Stephen takes the restless boys out of the chapel and to a friend's house a block away, a fairly recent arrangement with the Berry family that has turned out to be a godsend.

"It is that support network," Stephen says, "that is so important to maintain faith in God and not feel abandoned."

Ashlyn believes her church could do more to train its members and teachers how to deal with autism. Once, she went home in tears from a stake meeting when a couple she didn't know asked her to keep her boys quiet.

Ashlyn says it was hard for her to watch Chandler's eighth birthday pass without a baptism. She realizes now that he may never have the understanding prerequisite for baptism in the LDS faith.

"That's hard for me," she says. "He probably never will be baptized."

But she finds comfort in the belief that her family will be together after this life and that Chandler will be unfettered by his disability.

"We have complete hope that he will be whole."

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