Benjamin Evjen
Assistant Professor
Utah Valley University

When I was young my mother had epilepsy. I remember her seizures always began with a heavy sigh, raising in pitch until her body fell against a hard surface. Pots and pans crashed and chairs tipped as mom’s body crumpled to the floor. When this happened at home I found a distraction – from toys to television – while the seizure ran its course. The difficulties that arose when a seizure occurred in public while grocery shopping or at the mall were worse. I often felt as if I had little to no power to control what materialized around me. Strangers panicked, calling emergency services that were completely unnecessary. It was as if roles reversed, placing me as parent while parent became child. Yet, I was still perceived as a child.

When a caregiver suffers from epilepsy, a child can often feel frightened, vulnerable, and alone whenever a seizure occurs. These struggles children face when experiencing a caregiver’s epilepsy are often neglected. There is little a child can do during these moments of panic, worry, and fear. At this point, no tool exists to provide them with the ability to take action, offer reassurance, or give empowerment.

In my current research I intend to help children negotiate this struggle by creating therapeutic toys. Through play, children can navigate feelings that are often overlooked by adults. The visual appeal, simplicity, and materials used in their creation help facilitate comfort through sensory cues. By applying coping mechanisms to deal with stress caused by the passage of time, provide tactile comfort, and equip the child with tools to take action, their emotional needs are met. These toys address an overlooked need for children who consistently deal with the emotionally taxing occurrences that come with having an epileptic caregiver.

This research was presented at the Design Incubation Colloquium 5.1: DePaul University on October 27, 2018.