The day of the ice cream fiasco, tensions between my two children (both of whom are on the autism spectrum), were running high, as usual. With trepidation, I left my husband (also on the spectrum) in charge, so I could enjoy a rare date with a friend. While I was gone, one child dished up a bowl of ice cream. When the other later discovered the ice cream still on the counter, chocolate-studded green liquid exploded across the kitchen, where my husband left it, since he thought I needed to see it.
In the years when I was raising children, I was ashamed of needing help. Intolerable things were happening in our home, and I felt powerless to stop them. Each person’s unique traits of autism clashed with the others. Autism magnified ordinary sibling spats into irreconcilable conflicts that repeated the same themes with endless variation (and accelerating threat as my children grew). As the family's sole non-spectrum member, I felt pulled to pieces as I tried to bridge chasms between the intentions and perceptions of three very different family members, fiercely at odds with one another.
Issues in our home, as for many families affected by autism, were complex, chronic, and constantly evolving, frequently pushing me beyond my ability to cope. I brought my own issues into the mix, with the flare-up of recurring depression.
At one point of desperation, I pushed past my shame to ask for help from others at my church. After several false starts that addressed an immediate crisis but soon fizzled out, we hit on a sustainable pattern of support that gave me the encouragement I needed without wearing out my support team.
One friend, who understood how much my depression held me back from asking for support, organized a rotation involving herself and three other women. She saw to it that each week one of the four provided me with quality listening time. While my husband covered the home front, one of these dear sisters gave me the gift of an hour and a half to sit with a friend and spill out the latest hand-wringing family stories to non-judgmental ears.
(For congregations large and small looking to offer a tangible way to care in difficult circumstances, you might consider this simple pattern of rotating, shared support managed by a coordinator, as one way to embody the love of Christ for those living with chronic conditions.)
I struggled often with needing so much help and having so little to give back. My friends’ steady commitment brought me the much-needed tangible presence of Christ, which eventually allowed me to relax and trust their genuine caring. As my children eventually moved into adulthood, I am grateful that these friends’ ministry to me now lives on in my own.
Because now, several times a month I receive a phone call from a distraught mother who has a son or daughter on the autism spectrum. She is struggling with managing her child’s difficult behavior. It might be as extreme as an angry teen punching holes in walls, or as ordinary as toilet training, but when the phone rings and someone needs my listening ear and empathy, I drop what I'm doing.
These are holy opportunities for a ministry of presence. I may offer a possible resource or two. But most important, I offer acceptance and nonjudgmental listening from someone who has dealt with similar frustrations. Autism is as isolating as it is puzzling for parents. I validate what parents are experiencing as objectively stressful. I offer an alternative view to parents carrying a load of self-blame. I receive the gift of their trust.
The seeds of my ability to offer such care were planted years ago by the simple acts of care I received from four sisters in the faith. Together we give thanks for the ways God is blessing this ongoing ministry.
Christine Guth is Program Director for Anabaptist Disabilities Network. This article first appeared in the February 2015 issue of Purpose.
