The LDS Church has made progress over the past few decades in supporting special-needs children and young adults in the church but could do more in education and outreach.
That was the consensus at a panel discussion on the subject Friday during the 30th annual Sunstone Symposium at the Sheraton Hotel.
"I truly think we need to educate our wards," said panelist Elayne Potter Pearson, an advocate for the disabled and mother of a daughter with Down syndrome and autism. "We have to come together in a spirit of cooperation to make it work for everyone."
She believes a ward's fifth Sunday or youth lesson would be well spent on special-needs education. She believes church members mean well, they just don't know how to help affected families.
"We learn to love people that we serve," she said, and she suggested church members genuinely ask how to help special-needs families, without isolating them or just complimenting them.
Pearson, who was Mrs. Utah in 2001, said she finally had to tell her bishop she couldn't do her callings and be "super mom" anymore.
Amy Nelson, another panelist, is the mother of a son with autism and another son with Asperger syndrome.
She said the church's official Web site has a resource, disabilities.lds.org, that includes some information and teaching tips.
"It's helpful, but more basic," she said.
Nelson said her bishop called six members to rotate every six weeks to assist with her special-needs children. "This is a model example," she said. "But in many wards, that's not the case ... so the church really needs an organized program."
She also suggested educational and training videos and even special manuals to teach from.
Panelist Tresa Edmunds, parent to an 18-month-old son, Atticus, who has cerebral palsy, agreed.
"I don't want to be admired. I want to be helped," she said, explaining that the isolation she faces at church is difficult and that she will pass her child off to anyone not wanted by the police.
"My child is not a lemon," she stressed. She doesn't want pity, and without a couple of friends in the ward, she said she could not get by.
Edmunds also doesn't want people to put her on a pedestal and tell her the family is special.
"I want people to talk to him like he is a child, because inside, he is," and not write him off just because his legs don't work, she said.
Another panelist, Jeni Grossman, from Phoenix, said her son, Zachery, now 28, has spina bifida and yet believed early in life that he could still serve a full-time mission.
When that didn't happen, "Zack's world collapsed," she said. He stopped going to church, quit his friends and eventually joined another faith.
"I believe my story speaks for itself," Grossman said.
She also said some ward facilities are simply not wheelchair accessible, with features like narrow primary hallways.
Panelist Charlene Durham, whose child, Daniel, had development issues and died at age 8, said going to church with him was a great challenge, but worth it.
"It's a time to be in the company of the spirit … It's also a quiet time."
She said a special-needs child puts a tremendous strain on a marriage and family, so genuine help is what is needed.