Seeing CVI at OT

You may have seen this photo in a recent Start Seeing CVI Facebook post. My son with cortical visual impairment (CVI) went for an assessment to establish new occupational therapy (OT) services. As usual, the assessment or going anywhere or doing anything with my son, proved revealing in terms of his CVI.

First off, yes, the clinic and the therapist we saw that day, are experienced with CVI. Since moving to New England, it seems my constant query of “Have you heard of CVI? Do you know what CVI is?” to physicians, medical interns, therapists etc – is more often answered with, “Yes, I know about CVI.” This particular clinic refers to it as “visual perception.” And when we say “visual perception,” we are of course, talking about the brain, which is where “visual perception” happens. “We don’t see with our eyes, we see with our brains” (Bach-y-Rita).

Like most everywhere we go here, the clinic was a new, or novel, environment for my son with CVI. He’s been to more than his fair share of appointments and clinics and providers for assessments and evaluations and sessions. Mostly we went seeking support around foods, eating, sensory sensitivities, other sensory concerns, along with motor concerns such as balance, core, using both hands together. Eight years into this, I firmly believe you cannot do too much OT. OT’s have always had the best understanding of my son, both his sensory processing differences, and his visual perceptual differences. If I could turn back time, much more effort would have been spent on OT.

Instead of jumping into foods and eating, the OT assessed his motor skills and sensory aversions, all through the wonderful medium of play. Having seen several such motor rooms, as soon as we walked into the space, I couldn’t help but think how neat it looked. Colorful equipment dominated the large room. Jasper took one look and saw it differently and said so: “Why is the room so messy?” Three grown ups surveyed the room, quizzically, before somebody commented, Yes, people need to clean up when they are done using the room. There was an area of shelves with smaller, miscellaneous equipment but it was well to the left and within my son’s left visual field deficit (bilateral homonymous hemianopia).

When your child has an invisible disability, you sit there anxiously thinking, I hope she sees what I see, I hope she sees the long list of my concerns and his challenges. In the end she saw the tip of the iceberg.

The assessment involved an obstacle course, following multi step directions, balance, core strength, upper body strength, using both hands. Then the therapist did something unexpected. She asked Jasper to play Simon Says. We all know what Simon Says is. We all know how hard imitation is. “For children with CVI, imitation skills are delayed or absent” (Roman).

She started with a few easy instructions, Simon Says stand on your left leg, Simon Says put your right hand on top of your head. After only a few movements, my son protested: “How much longer? When will we be done?? Mommy, can we go now??” This was the only time during the hour long session that he objected and requested to leave. In Jasper’s case, he is able to verbalize this, but what would his resistance look  like if he was unable to communicate his difficulty? They did a few more instructions. Put your hand on your head transitioned to One hand on hip, one hand touching the bottom of the ear, next to her face. Jasper had no problem with hand on hip, but could not follow the detail of the hand on ear, beside her face.

Simon Says was done.