Traversing the Same Terrain
“I try to make a point to be thankful for the things we do have,” she said. “You can get so fixated on what's difficult that you can lose sight of what's good.” I nodded vigorously. Even though she couldn't see me, even though we were only talking on the phone, I couldn't help myself. I'd been talking with Dilshad D. Ali for about thirty minutes, but I'd felt from the first that I'd found a kindred spirit.
Dilshad D. Ali's son is a preteen on the spectrum who struggles with self-injurious behavior (SIB). I'd reached out with a request to interview Dilshad as background research while writing an article about SIB. It was a piece I both loved and hated; a piece that I needed to write and hated to have to. I'd finished a first draft, but I needed more personal input from families. Though I put out queries, I kept striking out. SIB is a difficult subject, and I wasn't surprised when the response to my request was nil. Fortunately, I'd read an article by Dilshad on autism, ritual, and faith that spoke both to my heart and to my need to interview parents on their experiences with SIB. The vulnerability with which she shared her experience gave me hope that she'd accept my interview request, and as such, I was determined to reach out to her. Through a friend of a friend, I was able to get in touch and ultimately set up an interview.
And the beautiful thing about the interview was that, though I set it up in hopes that it would make for a better and more engaging article for others to read, the interview helped me most of all. I barely needed to glance at my notes; question flowed seamlessly into question, and Dilshad's responses took the form of short stories, snippets of her family life. Listening, I felt as though the experience was akin to looking in a mirror; as she talked, I saw how our experiences reflected one another's. She described the tests her son had undergone, and outlined all the possible causes the support team had considered for the SIB … and it was so familiar, because they were the same things that my parents have done for Willie.
Her words traversed the same terrain that our family has covered. She even used some of the same phraseology I've employed to describe Willie's outbursts, such as, “[He goes from] zero to 60 in no time,” and, “It's like Jekyll and Hyde.” She was speaking my language, and I felt waves of relief. My family and I were not alone. We weren't crazy. We weren't the only ones flummoxed, confused, and wondering how and when the SIB would ever stop, how and when things would ever come out right.
Further, we weren't the only ones struggling to keep our faith in a time of trial. As Dilshad wrote, “When you’re in the throes of helping your severely autistic son live his life, when your prayers turn from hopes of recovery and independence to just wanting him to be happy and at peace, when you beseech God time after time and still see your son suffering, when you see your entire family affected by one child’s disability, faith and trust can grow tenuous.”
Ironically enough, reading those words helped me to regain faith; her transparency helped to lift the burden of isolation I'd felt. As we talked on the phone, we commiserated and we laughed; we held sorrow and we held out hope. And in the end, she said what I'd known to be true all along: That love for her son was what kept her and her family going. Love that let go of expectations and just kept marching on, day in and day out. And as she said it, I felt how good it was that we were talking, we who were walking the same uncertain, winding road together. Somehow, I couldn't help but hope that it would lead to a beautiful place.