Now a nationally recognized author and speaker in the field of disability Life, Kathleen Deyer Bolduc says she was unprepared to parent a special-needs child before the birth of her third son. Now 24, Joel has autism, intellectual disabilities and an anxiety disorder. She tells the story of their life together in Autism & Alleluias, a new book published by Judson Press.
“There is a lot of pain involved in parenting a child with autism,” Bolduc said in an April webcast scheduled during Autism Awareness Month to promote her new book. “There’s a lot of joy, but I think we’re kidding ourselves if we don’t look at the grief that’s involved.”
“I can also say at the same time that living with autism, more than anything else in my life, has brought me to a closer relationship with God,” she said. “It really has brought me to a gut-level understanding of the Lord’s words to Paul in Second Corinthians, when He said that ‘My grace is sufficient for you. My power is made perfect in weakness.'”
“Once I came to an acceptance of that truth, once I figured out that I couldn’t do it all on my own, that I needed God’s power to gift me with the strength I needed to parent Joel, Joel became one of the most spiritual teachers in my life,” she said.
In one of the stories told in the book, Bolduc describes a particularly harrowing morning. It started with Joel rushing out of the house barefoot and in his pajamas. The temperature outside was in the 30s. The scene escalated into an emotional meltdown for Joel that reduced Bolduc to tears.
Joel then approached her and reached a hand toward her. Instead of grabbing for her glasses as he sometimes did when he was anxious, Joel patted her face. “We need Jesus,” he said.
“We do need Jesus,” Bolduc said during the webcast. “And Jesus is with Joel no matter how difficult things get.”
Bolduc said the most important spiritual lesson her son has taught her is that God’s love is unconditional.
“God loves me just as I am. I don’t have to try so hard,” she said. “And God loves Joel just the way he is. I don’t have to fix Joel. God loves him just as he is. Such a huge burden lifted with that realization.”
Bolduc said parents of children with disabilities long for a church where their sons and daughters are loved and accepted just as they are, regardless of their behavior or their ability to achieve.
Those that do, she said, receive a lot in return.
When Joel was about 8 or 9, she says in the book, his behavior caused Bolduc and her husband to give up on sending him to Sunday school. They learned that if they sat in the front row, where he could not kick the pew in front of him, they could usually make it at least through the congregational singing.
During communion, she said Joel would typically act out in ways so that it “was not really a spiritual experience, to say the least.” One particular Sunday, however, the pastor raised the plate in the air and recited, “This is the body of Christ, broken for you,” and then raised the cup, saying, “And this is the blood of Christ, poured out that you might live.”
Joel stood up, clapped his hands to his chest and said, “For me! For me!” He turned around and said the same thing to the people behind him.
“Joel gave a gift to the whole church that day, when he turned around,” Bolduc recalled. “He was announcing to everybody: ‘Wake up! Open up your eyes and look at the sacrament with brand new eyes. This is for you and this is for me. This is for all of us together.’ I think it was just an amazing lesson that my son had to teach the congregation that day.”
Another teachable moment came when Bolduc’s family had made a commitment to attend an African-American congregation honoring Martin Luther King Jr. During the music, Joel did what he usually did in their Presbyterian church. He worshipped with his whole body, bouncing and dancing in the aisle. This time, though, others were doing it, too.
“A proverbial lightbulb went on in my head,” she said. “I thought, ‘You know, you just can’t fit a square peg into a round hole.’ All of these years of trying to make Joel fit into our worship service, it’s craziness.”
That created a dilemma for the family. “Do we leave a church that we love, or do we try to help the church see what Joel has to bring?” They chose the latter.
“I’m glad to say that our church has changed,” Bolduc said. “And I like to think that it’s changed partially because of Joel – and Peter and Jeremy and Matt, who are three other guys with developmental disabilities – and what they’ve brought to us.”
“We have a contemporary service now that is much more relaxed,” she said. “Matt walks around and greets people. He doesn’t care what part of the service it is. If he sees you and he hasn’t said ‘hi’ yet, he’s coming on up. Peter dances during the worship songs.
“Joel stands up when everyone else is sitting down, if he wants to, and people are telling me, quite often, how much joy they get out of worshipping with Joel, Peter, Matt and Jeremy. There are some real gifts if we open up our eyes to them.”
“Joel has changed me, and Joel has changed our church,” Bolduc said. “If you open up your hands and your hearts and your minds and your attitudes, and you open up your church doors to those with disability, transformation will take place.”
Bob Allen is senior writer for Associated Baptist Press.