After a long dry spell this school year, today was birthday party number two. This one was held at our local children’s museum. It would be the opposite environment of the previous calm, low key birthday, at home, with only five boys, from last weekend. To prepare we talked about how many kids would be there, likely more than five. A few familiar kids were invited so we focused on them. We talked about the complexity and noise and unpredictability of the surrounding museum with all of its activity and sounds and visitors. The museum was not a favorite and we rarely visited, so in addition to the overarching complexity, we added novelty (Roman). For my son who has cortical visual impairment (CVI), these are some of the most difficult CVI characteristics.
It helped that the gathering was in a separate party room, which was nearly empty as the kids, boys mostly, ran throughout the museum. Except during the birthday cake, the party room served as a quiet place for a break. For a young child with CVI, running fast, playing chase, keeping up and keeping track of the other boys in an unfamiliar setting, is not an accessible activity unless it comes with a hand to hold onto. It was not an accessible or even preferred activity for my son, so we explored the things he did enjoy – the make believe post office, kid sized models of homes and markets in Japan. Driving a fire truck, a bus – at six years old, Jasper was already asking, when could he drive a car – and he will never drive a car – so pretend driving would have to do.
It is well into the school year but still it is difficult to recognize classmates, particularly the boys, so many of whom have the same short brown hair. Jasper always recognizes Chuck, who once had hair as long as Jasper’s, except that Chuck’s hair is black. But one boy, Sam, had red hair. Noticing this salient feature (Roman), we talked about how Sam’s hair is actually red, not brown, different from the other boys. My thinking was that pointing this out was helpful to Jasper, making it easier for him to recognize a friend from school.
We left the party early. Since sunny days are rare, we sat outside by an enormous fountain. Once upon a time Jasper had been wary of water spray – not knowing what to make of it, how to see it, or where it was coming from – but today he was soon thoroughly soaked. Sitting in the sun, we talked about the party, about friends. Sam has red hair, Jasper commented. Oh – so are you telling me that you recognize Sam by his red hair? I asked, hopeful, a parent’s relentless attempt at drilling in salient features. Right away Jasper added, By his hair and his VOICE! It was clear that voice was the winner when it came to positively identifying his friends. Especially in the complex sensory environments of school, field trips, birthday parties.
Clothing and accessories and hair styles change, but voice is constant and stable, a reliable indicator for our kids with CVI. Even for kids in Phase III CVI, identifying faces is hard. Recognizing friends, family, mommy, is hard. My son can sometimes recognize a peer instantly in the school classroom. But later on we see that same friend at the birthday party, or in the neighborhood, outside of the context of school, and the friend is unfamiliar, unrecognizable. We cannot rely on our kids with CVI to visually identify us (Roman).