For nine years, I served our denomination as MNA Special Needs Ministries Director. In that capacity, I probably made close to 100 trips—many of them by plane. Since transitioning from my role as Director, I’ve had some time to think about the parallels between air travel and ministering to and alongside families touched by disability in our local congregations. As the mom of an adult son with Down syndrome, here are a few Frequent Flyer tips I’d suggest for relating to “the mom in the pew next to you” (I like how that rhymes) who has a child with special needs:
- Choose a destination. In disability world, there is a well-known poem called “Welcome to Holland” which is often shared with parents when a child is born with a disabling condition. The essence of the message communicates, “While you were expecting to travel to Country A, the journey of having a child with a disabling condition will take you to Country B. It is a different place than you expected, but one full of its own beauty—and its own challenges.” Here’s the deal: while families touched by disability did not choose their destination—we can choose to join them there. We can choose to enter the world of the mom who has a child with autism who can’t tolerate the sounds in the sanctuary. We can choose to enter the world of the dad whose daughter has spina bifida and is struggling to move through the narthex in her walker. We can choose to enter the world of the person who silently wrestles with helping their child who has a mental illness. Jesus chose a destination that required him to give up the glory of his heavenly home. We can do no less.
- Check your baggage. We all have baggage. Tons of baggage. It comes from our human history, our personal history, and most of all—our own hearts. While we are indeed created in God’s image and reflect his goodness, truth, and beauty—we are simultaneously sinfully prone to be self-reliant, self-protective, and self-promoting. This baggage that we carry into our relationships often shows up in bold relief when we encounter people who we perceive to be different than ourselves. It often consists of three pieces of luggage (a matching set) made up of: competence, clinical distance, and closure. We prefer to operate from a position where we feel powerful and knowledgeable. That’s competence. We prefer to operate from a position where we do not experience the suffering of others. We don’t mind knowing about it. We just don’t want to be participants in it. That’s clinical distance. And we prefer things that we can simplistically tie up with a neat bow and put on the shelf. That’s closure. Where do you and I need to repent of loving competence, clinical distance, and closure more than we love our brothers and sisters in Christ? Will we commit to asking the Lord to transform us into people who lean into humility, sorrow, and vulnerability in relationship with others? Jesus stands ready, curbside, to help us check our baggage.
- Engage your neighbor. If you’re like me, there are times when I travel that I just put my headphones on and ignore everything and everybody. Sometimes that’s a necessary part of self-care. But if I find myself always defaulting to my iTunes, then I know it’s time to re-evaluate. We need to learn to listen like Jesus. Great listening is an “other-centered” skill. In the gospels, Jesus frequently engages others with questions. These are not questions to enhance his competence, ensure his clinical capacity, or to bring about his closure of a situation. They are questions that truly demonstrate genuine care, facilitate understanding, and draw people into loving engagement. Try these for starters with “the mom in the pew, next to you”:
- Your son has beautiful eyes. What is his name?
- When my kids were that age, they enjoyed x-y-z. What does your daughter enjoy most?
- Would you please tell me your story? I’d love to know.
- I find it challenging enough to get my kids off to school each day. What is it like to have a child in the special education system? How is that helpful to you? How is it frustrating?
- What are your personal spiritual gifts? How could our church help you to be freer to exercise them?
- What are your dreams for your child with special needs? In the community? At home? At church?
- What does knowing Jesus look like for your son or daughter? How has that changed how you understand the gospel?
- What are your greatest joys in parenting? What are your greatest struggles?
- How has having a child with special needs affected you financially? Are there practical ways in which the church could help?
- How do you see your other children being impacted by their sibling with special needs? In what ways is that experience a positive thing? In what ways is that experience challenging? What would be helpful to you as a family when it comes to loving your other children well?
- What are your greatest fears for the future? How can we walk alongside of you throughout your journey?
- What invisible barriers do we not see as a church that we need to see and remove for your whole family to be full participants in the life of the church?
- What practical things could we do to love your family more fully? Respite care? Laundry? Medical paperwork? Home repair? Transportation? Other?
- What types of things are fun or restorative for you personally? How could we serve you to make that happen?
- Encourage the Delta Doctrine. Finally, encourage “the mom in the pew next to you” to follow the Delta Doctrine. My friend Peter Rosenberger wrote a wonderful book called Hope for the Caregiver. He describes the Delta Doctrine this way:
“While flying Delta Airlines to Atlanta one day, I discovered that flight attendants state the best advice for caregivers—all day long. ‘In the unlikely event of the loss of cabin pressure, oxygen masks will drop from the ceiling. Securely place your mask on first, before helping anyone next to you who may need assistance.’ That small directive, what I call “The Delta Doctrine,” contains applicable wisdom for so many life circumstances—but probably none as poignant as for those of us serving as a caregiver for a chronically ill/disabled loved one. Compassion and love often mistakenly lead us to hold our own breath—while trying to help someone else breathe, but once we make that decision, it is only a matter of time before we find ourselves gasping for air. If we are unable to breathe, how can we help anyone else?”
Mothers of children with special needs don’t need to be affirmed in hero status by comments such as, “I don’t know how you do it!” They need to know that people who truly love them value not only the necessity of their sacrifices but also the necessity of their self-care. I have a friend who says “Disability is not like cancer—you don’t get to the other side of it.” That statement is not meant to minimize the life-threatening, gut-wrenching realities of cancer. It is simply meant to state the difference between cancer and disability. The relentlessness of living with disability across the lifespan requires a substantial commitment to self-care on the part of caregivers themselves. Not just for the first twenty years, but also for the next twenty. And the twenty after that. We need to encourage caregivers in our midst in the practice of the Delta Doctrine. Not by just reminding them of it, but by facilitating it taking place in their lives. Over and over, and over again. Remember: “Friends don’t let friends fly without oxygen.” Jesus validated the Delta Doctrine in the context of the second greatest commandment when he said, “Love your neighbor as yourself.” We too need to encourage the mom of a child with special needs in the art of self-care.
So, my friends—enjoy the journey with “the mom in the pew next to you.” I hope you’ll learn to love traveling with families touched by disability often enough to earn Frequent Flyer status! Through the indwelling power of the Holy Spirit in a heart that is being transformed by the gospel:
- Choose to join them in their destination.
- Check your baggage curbside with Jesus.
- Engage your neighbor in authenticity.
- Encourage the Delta Doctrine.
In His Name,
Steph served as the Founding Director of Mission to North America’s (MNA) Special Needs Ministries from 2007 to 2016. She works as a consultant to ministry organizations (including MNA) and is in the process of completing her MATS online at Covenant Theological Seminary. Steph is the author of Same Lake, Different Boat: Coming Alongside People Touched by Disability and All Things Possible: Calling Your Church Leadership to Disability Ministry. She has been published in ByFaith magazine, Focus on the Family magazine, and Breakpoint online magazine and has produced a Christian Education DVD series based on Same Lake, Different Boat. Steph and her husband, Fred, have been married for 33 years. They have two deeply loved adult sons: Fred and Tim, the younger of whom has Down syndrome.