A stroke of lightning and a gift: our #Epilepsy story

When our daughter was born, we had no idea what awaited us. We had no inkling what kinds of joys and anguish we would experience along the way. We also had no idea what to make of some of the cues someone more experienced would surely have picked up on.

Our daughter turned out to be hypersensitive to sound. As she was taken by the nurse, a couple of minutes after delivery, someone in the operating room dropped a metallic object. Our daughter turned her head downward, toward the source of the noise, and smiled. We lived in a rural community back then and for at least the next two years, she was raised in a very quiet environment, free from the loud everyday sounds that would later make her miserable and anxious.

While she spoke rather late, she did sound out almost any letter of the alphabet she encountered. If we were out and about and she saw a sign, she would almost invariably point to one of the letters and say it. She did the same with numbers. We read and spoke to her all the time. While she didn’t converse with us, she’d play reading games. We would read the first couple of words to her and she’d read the next couple to us. By the time she was two, she read books to us and all of the signs she saw on storefronts. It was clear she could read. She finally beganĀ conversing with us after she turned three but her speech was scripted, often borrowed from books or TV programs, complete with the original speaker’s inflection and pitch. As she got older and more verbal, it became clear that she wasn’t hyperlexic in the classic sense. She was reading at a level beyond her years, but her comprehension was near-flawless. This, we later learned, is not uncommon among so-called high-functioning children with Autism.

Fine motor activities, particularly drawing, sculpting with playdough or cutting with a child’s scissors, were activities that were very difficult for her – to the point where she would get discouraged and tantrum. The tantrums got worse as she began to attend preschool and was expected to engage in a fair amount of these types of activities. She was diagnosed fairly early on with a severe fine motor delay. Years of occupational therapy gave her the coping skills to either overcome difficult tasks, or find coping skills to get them completed. Writing, by the time she was done with occupational therapy, was still very much a problem. By the time she turned eight, she hadn’t gotten beyond drawing stick figures. While she showed very strong interests in the visual arts, early, that interest manifested itself in a more appreciative vein than in a creative one. She very much enjoyed going to art galleries and museums, for example. She was obsessed with animation.

Then, in June 2007, everything changed the day after lightning struck. She had an epileptic seizure one late morning. An artist was born the next. Her artistic ability remains, even as her epilepsy is under control.

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