Reviewing the CVI characteristic of complexity (Roman) for a graduate class on Cortical/cerebral Visual Impairment (CVI), has me thinking about some of those early experiences with my son who has CVI.
Some moments stay with you longer than others and usually there is a good reason why. The CVI characteristic of Complexity is a doozy and means many things. Difficulty with complexity of visual array, complexity of object, complexity of faces and lastly, complexity of the sensory environment. Specifically, the moment that came to mind was about sensorycomplexity. It was, Seeing the difficulty with sensory complexity, the competing senses of vision and hearing, for the first time.
Early on in the early intervention experience, my son began to slip. Being diagnosed with CVI as a newborn means beginning early intervention services soon after you are born. But “services” did not necessarily include CVI. When a child is being evaluated for the short list of three things he is supposed to be doing, he can look pretty good. As they grow, so grows the list of things they cannot yet do. So grows the list of services provided.
And so occupational therapy was added to the list. In retrospect, he was too young to be doing things like ring stacking anyway. This was maybe around nine months old, because OT was added at around six months, and he transitioned to a new provider after twelve months.
On this particular day, for some reason, the light up ring stacker was introduced. Given the sensory disability of an infant, it was thought that a toy that had light and sound, a charm sound that might summon Tinkerbell, would help.
He liked the bright solid glowy colored plastic rings enough. But each time the therapist correctly placed a ring on the toy – rrrriiiIIINNNGGGG – the toy chimed and lit up and so did my son – crying and fussing, looking away. Looking, listening, reaching – just no, he was saying. No.
What I didn’t know then about CVI was a lot. But a toy like this would not get him anywhere.
“Did he have a nap today?” the OT puzzled.
“Has he eaten today??”
Naturally, the therapist turned to me. Of course – blame the parent. Did she honestly think he had not slept or been fed?? Therapy and reaching his potential, whatever that might be, were my first priorities. Literally a parent’s life’s work, it all started with him being fed, rested, happy.
“Yes – of course – he was fine until we got here.” Hmmmmm.
That was the beginning of the end. Or, it was the beginning of a new beginning.
Some time later he got a stacking ring of his own. Bright, solid colored rings, white post, no flashing lights, no batteries required. Stacking took time even with the simpler, less complex toy. But at least he had a better chance.
To this day, now in third grade, switches on noisy toys are shut off, batteries are missing. The toy bubble gum machine, the wooden puzzles, the animal farm. For children with CVI, sensory complexity, visual noise plus auditory noise, not to mention auditory processing differences, looking and listening is hard.
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