This article first appeared in ADN's newsletter in 2010. Three years later, Tim and Melissa express appreciation that members of the congregation responded to their need even before they could articulate it themselves. At the time a support team formed, the Jantzes were beginning to realize something unusual was going on for Ethan, but they had not yet learned that Ethan was on the autism spectrum. They found themselves spending their Sunday mornings running after Ethan, and neither parent was able to enter into worship. Michelle had observed what was happening. With Melissa and Tim’s consent, she enlisted others who committed themselves to a rotating schedule of support for Ethan. The team allowed Tim and Melissa opportunity to worship without distraction. Although the individuals involved have changed from time to time, the plan is now in its third year and is going well.
This was not the first time the congregation had thought about how to make a more welcoming place for Ethan. Assembly’s worship often includes applause, yet Ethan’s sensitivity to unexpected loud sounds meant that congregational clapping caused him noticeable distress. After observing how much the abrupt sound bothered Ethan, one member proposed an alternative to clapping—visual applause (fluttering hands overhead, common among Deaf communities). Although Ethan’s sensitivity to clapping has faded, many in the congregation continue to prefer the hand-waving variety.
As Ethan has grown older, the congregation has looked for additional ways to support Ethan and his family. Keeping routines the same is comforting to Ethan, as it is to most people on the autism spectrum. Therefore, pastor Heidi Siemens-Rhodes has worked with the various teachers of Ethan’s Sunday school class so that they can provide him with consistency no matter who is teaching. The entire pastoral team has made an effort to learn about autism, through meeting with an autism consultant from the public school district and through obtaining and reading autism resources for the church library.
Heidi has taken steps to share information in the wider congregation about Ethan in order to build understanding. Following a model suggested by Barbara Newman in Autism and Your Church, she prepared a flyer introducing Ethan, with a photograph, descriptions of his strengths and challenges, and suggestions for positive ways to interact with him. The flyer names Ethan’s support team and describes some of the things he likes to do on Sunday mornings. It also offers members a framework for understanding behavior differences, for example: “If I come into worship and you hear me making unusual or out-of-turn noises, remember that these are my way of being the person who God created me to be, and I am not trying to interrupt, but to be part of you.” All of these efforts have made Assembly a place where Ethan feels safe and where he enjoys going. (Click here for flyer suggestions; purchase Autism and Your Church.)
A few years ago ADN played a part when Assembly dedicated a Sunday morning to focus on the diverse gifts of people with disabilities. Kim Kurtz, a special education teacher in the congregation, planned and led worship. Christine Guth, ADN's Program Director, was a guest preacher. Her sermon focused on the indispensable contribution to the body of Christ brought by those members who seem weaker (1 Cor 12:22). A school autism consultant led a conversation during the adult education hour about children on the autism spectrum and accommodations that can help them participate with others.
Ironically, the Sunday event came just one week after the Jantzes had announced to the congregation that they are planning to move to Lancaster, Pennsylvania. “I felt a little guilt that we had just announced the week before that we were leaving,” Melissa commented afterward. “This was not just about us, though. It was a great Sunday,” she continued. “I felt acknowledged.” Tim expressed appreciation for Christine’s honest description of the difficulties faced by parents when they try to bring children with behavior differences into a worship service. “It is hard,” he added. “You don’t want to walk around complaining all the time, but it is nice to hear someone else say it. You know you’re not alone.”
Although they knew the Jantzes would be moving away in the summer, Assembly leadership continued with plans for the special Sunday, knowing that the community’s efforts to understand Ethan have prepared them to welcome other children with disabilities. The congregation is already anticipating the arrival of another child with a disability, who will be arriving soon from Ethiopia when his family completes adoption procedures.
The Jantzes plans to move to Lancaster were precipitated by the pressing need Tim and Melissa feel to obtain more specialized services for Ethan. “For our long-term sanity and for his prospects for the future, we have to get him services,” Melissa explained. “We need services more than we need…even to eat!” she exclaimed, expressing the urgent sense of need common to many parents of children with autism. “The strain is intense,” Tim added. “We need the support of a continuum of professional services.”
In Indiana, as in many states, families are waiting for more than ten years in order to receive Medicaid Waiver services for someone with autism. The Jantzes expect to wait for comparable services in Pennsylvania only a few weeks. They are looking forward to receiving specialized autism services from Philhaven, a Mennonite-affiliated behavioral healthcare organization. They hope also to connect through Philhaven with other families who have a child with autism, especially people of faith who are facing similar circumstances.
Tim is a financial advisor for MMA (Mennonite Mutual Aid, now Everence). His ability to transfer to Lancaster while working for the same company in the same career path made the decision to move a logical choice. Another benefit is that the move will bring them closer to family support through Melissa’s parents and others on her side of the family.
The anticipated relocation brings with it ambivalence. Tim expressed appreciation for all Assembly has done for them and hopes that church members won’t feel bad that they are unable to meet all of the family’s needs. “We feel that Assembly has done as much as they can do,” he commented. Melissa expressed regret at the hard choice to leave behind their community of faith in order to obtain services for Ethan. “Forming a team to support us, helping us to communicate to the congregation, offering flexibility to accommodate how we do things—it’s hard to let all that go,” she added.
Tim and Melissa have found Assembly to be a supportive place to bring the grief and struggles of raising a child with autism. One event they recall with appreciation was an anointing service held when Ethan was about eighteen months old. At the time they had inklings that he might have autism, but nothing was known for certain. They were invited to share their uncertainties with the whole congregation and received their prayers. It was helpful after that to know that there was a base of understanding within the church and people were holding them in prayer.
Tim and Melissa recognize that having a child with autism means living with continual loss. “You are living and grieving and living and grieving,” Melissa reflected. Living with loss has naturally had an impact on their faith. “I used to be afraid of something bad happening,” Melissa commented. “Now that I am living through this life-changing experience, I am not distracted by the fears. Our life is different from our expectation of what life would be like. But we love Ethan very much.” Tim noted that he is much more aware that bad things can happen to anyone. “Belief in God is no protection,” he added. Coming to terms with Ethan’s autism has awakened him to the reality of human suffering the world over. The struggle of faith, he notes, is to integrate the reality of suffering with our faith conviction that God’s world is good.
Assembly has been a safe place for holding the family’s grief at important points along the way. The congregation will be looking for additional ways to support the Jantz family through the transitions that lie ahead.
Christine Guth is Program Director for Anabaptist Disabilities Network.