How your child can help my child who has CVI

Waiting outside the classroom door for our kids to be dismissed, another mom smiled to me and said, “Let me know if there is anything Ben can do to help Jasper.” This mom was not yet familiar, and all at once a stunned gratitude welled up inside me. This other mom obviously had some awareness of Jasper’s cortical visual impairment (CVI).

Over summer, first grade parents had planned a series of playdates, so that the kids could connect and stay in touch during the break. Coordination happened over group email and was not classroom specific, it included nearly the entire incoming first grade class. As a CVI parent, the correspondence with such a wide audience opened up an opportunity. After “replying all” that Jasper would attend the playdate at a local park, my message continued: “For those who might not know, Jasper has cortical visual impairment (CVI), a brain based condition that is about recognition, not acuity (Mazel). CVI affects Jasper’s vision in lots of ways, including making it hard for him to recognize familiar faces, even his mom. It would make a world of difference if your child could give their own name when greeting Jasper, ‘Hi Jasper, it’s Jack.’ Thanks.” (social skills, Roman-Lantzy). The mom must have read and remembered that message, and now our kids were in the same classroom. Stunned gratitude held forth and the only words available to me were, “Thanks, I’ll think about that.”

Let me know if there is anything Ben can do to help Jasper  lingered in my mind for the next several days. Sometimes the care and concern you encounter along the road of raising a child with special needs, stops you in your tracks. As a result of a lot of effort, my son attends school in a general education setting with the help of an instructional aide. His aide is responsible for carrying out the array of accommodations and modifications that are listed in the Individualized Education Program (IEP) and serve to provide Jasper visual access to his curriculum, his classmates, his school. Accommodations are things like limiting the complexity of array of materials before him (six to eight, max), color highlighting salient features, creating pictures with a plain background, adding a red bubble around new sight words, and encouraging my son’s visual breaks and how to self advocate when he needs one (Roman-Lantzy). The list is long and could easily be longer but no amount of accommodations will ever allow Jasper the same kind of visual access, and incidental learning, that his peers experience naturally (Roman-Lantzy).

So asking friends to say their name seemed a small request. Even when encountering friends and classmates in the familiar school setting, recognizing a face is hard. Passing by a friend in a concrete hallway filled with kids and parents, everybody talking and moving in seemingly different directions. My son is incredibly social, a trait whose origin is elusive. It is always the case that the friend is the one who spots Jasper and calls out to him – my son does not visually pick a friend out of the crowd, or spot them across a busy, crowded lunchroom. And too many times his small face has fallen, assuming the blank look of nonrecognition, as he moves nearer to me and shuts down, no matter how animated he was previously. It was all this CVI mom could think to ask, Could your child please tell us her name?

In kindergarten Jasper made a wonderful friend who bridged the roles of both friend and peer model, when he needed one. At the end of year school carnival, Amelia found Jasper and came over and took his hand and ran off with him into the crowd – the two of them racing, speeding, dodging people and obstacles, laughing together in a way I had never seen my son before. Along with joy, my heart hurt at seeing the thing he could not do on his own. More than six years later, it does not get easier.

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Summer for us meant lots of hikes, often at our favorite sprawling city park. Jasper has always liked going down hill, whether toddling down when he was littler, riding his bike down and walking it back up, or running. On one such hike, he asked for my hand so we could run together. Speed is easier with mommy, who can lead and, more importantly, go faster. His smile was pure joy and as we ran he looked up at me, “Mommy, this is fun!!”

How can your child help my child who has CVI. Ask to partner with him for a class project. Invite him to sit with you at lunch. Play together at recess. Say Hi and say your name and talk to him. Invite him to a playdate. Be his friend. Take his hand and run.