Aug 29, 2013 0 Share

Adventures in Respite

Author sitting with brother leaning against her asleep.
Photo by Donna Fischer

Last Friday was my first day as a volunteer for a local respite group. Recently, two area churches paired up to provide this much-needed service for our area's special needs community. One Friday night each month, special needs parents drop off their children for three hours of free respite care. Each child is paired with the same one-on-one volunteer each time, so that trust can grow. At my first respite evening, I was assigned to accompany David* one of two young brothers with Fragile X syndrome. Fragile X is a genetic condition that causes intellectual disability and developmental disabilities, including autism. Given my experience working with individuals with autism and Fragile X, I understood why the organizers had paired us together. Even so, I was a little nervous as I walked over to David for the first time. Will we connect? I wondered. I tried to keep things simple, introducing myself and letting him know that I'd be there to hang out with him for the rest of the evening. He didn't respond, but I wasn't worried—I knew I had to let him take the lead. For the first half hour, that meant sitting alongside David as he pushed toy cars around a table. He liked hearing the sounds the cars made; he frequently pressed them up to his ears to listen. I stayed close, but quiet. 

Soon, David started talking to me, unprompted, about a birthday cake he was making out of Play-Doh. His speech was somewhat difficult to understand, so I listened closely. And when he orchestrated a pretend surprise party, I did my part. When I popped up from under the table and said, “Surprise!” his smile was out of this world. Yet much as I enjoyed David's company, three hours was a long time for an introvert like me to spend with a rowdy group of children. And David had a few challenging habits, like grabbing food or toys away from others. Yet even in the less-than-stellar moments, I felt like I was right where I was supposed to be. 

I stuck close to David, and the perseverance paid off. Later in the evening, a leader showed the kids how to do tricks with neon fabric, starting with simple prompts like, “Toss the scarf with one hand and catch it with the other.” David attempted most of them, and did fairly well. But then the leader asked the kids to blow as much air as they could into their fabric squares, then catch them before they drifted to the floor. Most of the children struggled with this task. As the instructor coached the kids, I was standing a few feet behind David. Without warning, he gently leaned into me, trusting that I would support him. As he did, he held up his scarf and said, “Help me!” I did. Together, we took deep breaths and set the scarf flying. 

I can hardly describe how I felt in that moment. It reminded me of the time when Willie fell asleep on my shoulder on a boat ride. As I wrote, “For all the times when I have not had what Willie needed—be that a calm presence, a greater understanding of his mind, or a solution to his behavioral challenges—in this moment, I do have what he needs. In this specific instant, I can offer him a peaceful place to rest.” When David took those steps backward, I realized: He didn't need to do the scarf trick perfectly. (In fact, he gave up, happily, after that sole attempt.) He just needed to know that someone would be there to help him try. 

As I was walking out the door that night, one of the event organizers handed me David's artwork; he'd forgotten it. Paper in hand, I jogged to catch up to David's family. When I handed David the paper, he grinned. I said goodnight, but David was too caught up in his art to reply. But just as I reached my car, I heard his voice call out, “Good night!” And I can't be sure, but I think he said my name.

*Fictitious name.