CVI Abyss

Abyss_CVIThat feeling you get when taking your child with cortical visual impairment (CVI) to any place new and unfamiliar and leaving him and feeling like you have dropped him into the CVI abyss.

This whole week of summer break has been about the CVI abyss. Because this was the first week of camp.

All of the preparation, talking about all of his issues, not only CVI, but medical issues, social issues, behaviors. Talking to the camp director, the social worker, the camp counselor. How do you distill the ten characteristics of CVI (Roman) and how they might possibly manifest in your child with CVI in any given setting or situation, at any moment? Attempting to anticipate anything, everything.

Visiting the facility with him on several occasions so that going to this new and unfamiliar place becomes more familiar (novelty). Weeks in advance, scheduling regular swim lessons so that going there becomes routine.

Jotting down a few basic “notes” on your child’s CVI, that morphs into a multiple page PDF. The final document is prefaced with, This is only the tip of the iceberg. It is up to grown ups to generalize all of this information.

Each characteristic is listed. The big ones, Complexity, Novelty (Roman), and how they might impact him when it comes to meeting other kids and (holding my breath) making friends, are the focus. The visual characteristics that most impact his use of functional vision, the ones that tend to elicit the greatest response when he finds himself in a less than ideal CVI scenario.

“He will probably look like a different kid by the last day of camp, than he does today,” goes my CVI ‘splaining as my son turns his back to the camp counselor any time he is addressed, occasionally peeking over his right shoulder.

Nobody ever said that CVI was easy.

Almost through the first week of camp. The CVI abyss gets the slightest bit brighter.

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