It should surprise no one that when it comes to movies, my son with cortical visual impairment (CVI) loves to watch the same familiar titles over and over (Novelty). Harry Potter but only Sorcerer’s Stone and Chamber of Secrets, on repeat. The original Toy Story. Finding Nemo was one of the first movies we watched intentionally, by now we have seen it countless times. Hearing Marlin explain his son Nemo on the Big Screen – “He was born with a short fin” – is a mirror. Every time, it is my voice describing my son’s disability. Every time, it is a reflection on the language we use when talking to our kids with disabilities.
Throughout the movie, Marlin displays his overprotective tendencies (not to mention his PTSD tendencies, also relatable):
“Just so you know, he’s got a little fin…if he’s having trouble swimming, let him take a break,” Marlin tells the teacher, Mr Ray (one of Jasper’s favorite characters). Considering Nemo’s tragic start in life, Marlin’s overprotectiveness is understandable. Nemo is all he has left and he just wants to keep Nemo safe, especially from “open water.” Life beyond the anemone is dangerous. Remember what I said about the ocean, Marlin reminds Nemo. “…it’s not safe,” Nemo finishes in a bored voice. Nemo has heard it so many times it’s become meaningless.
For my child with CVI, replace “ocean” with “world.” The world… is not safe, it is not modified for a person with CVI. It is complex and cluttered and noisy and busy and vast and moving and unpredictable and constantly changing.
Marlin shows us this again and again: “You’ll never get out of there by yourself! I’ll do it,” Marlin tells Nemo when he gets stuck inside some coral.
“Hold my fin, hold my FIN!” Marlin shouts at a busy fish crossing on their way to Nemo’s first day of school. What is Nemo’s confidence like at this point?
Street crossings are probably one of my greatest fears for my child with CVI. Look left ( compensating for that left side homonymous hemianopia), right – left again! Don’t forget about that hemianopia!! Are there any cars? Are the cars moving? How fast? Are those cars coming toward us? Is it safe?
At fish school, the other young sea creatures notice Nemo’s difference and ask, “What’s wrong with his fin? It looks funny – ”
“He was born with it kids – we call it his lucky fin,” Marlin explains, next to a silent Nemo.
“He was born with it kids – we call it CVI.” Jasper sees differently. It means certain colors or light or movement can help him see better. But it also means that playing catch with a ball or crossing the street or recognizing friends or finding peers on a busy noisy playground is hard.
Lately before opening my mouth in front of a new provider, my language is thoughtful, coded. “We’re still working on that” or “That can be challenging” or “This is the way we do it.” This is after years of appointments with physicians, teachers, therapists, caregivers, explaining Jasper’s CVI, explaining Jasper. Fortunately my son is not privvy to conversations with school teams, right?
By now, school aged, he has internalized so much.
“I have a hard time with dairy and I’m afraid of hand dryers and bathrooms and dogs, did you know all that stuff about me??” he tells a new music therapist the first time she shows up at our house to begin lessons.
I’m not a good climber. I’m afraid of dogs. That’s hard for me, he tells new people, as if these are the important details of his life, as if these are the details that make him him. With the regular slew of appointments, the focus of which may be dairy, hand dryers, dogs, climbing, how do you offset these conversations? How do you bring some kind of balance? These are the things we are working on – but these are all the things we have overcome! The story that gets learned is, “I have a hard time with dairy and I’m afraid of hand dryers and bathrooms and dogs, did you know all that stuff about me??”
Those are the bigger examples. Then there is the unspoken language, the more subtle meanings that are conveyed. Children with CVI love movement, so even when we are inside of a store, he is still moving. Spotting potential collisions all around, I chime in, “Those candles on your right are glass…” The implication being, You are probably going to crash and break them. The intention is to point out the glass… along with body awareness and how to move, physically, in public spaces. But what message does that send him about his body, his need for movement, his confidence, his self image, his disability? His hemianopia, balance, clumsiness, unintended collisions? Each day brings more examples.
When your child had a traumatic start in life, you tend to see the potential for danger everywhere. To that add, cortical visual impairment. What does he SEE??
When he was a toddler, it was physically hard not to constantly hover behind or beside him, as he attempted to explore the playground. There I was. Ready to help. Ready to catch him… Ready for him to fall. Backing off was as hard for me as climbing anything is for him. We must possess the self regulation to back off. It amazes me how moms of typical kids sit on the sidelines, chatting, on the phone, with friends, not looking anywhere near the vicinity of their offspring. How do they do that?
Over summer break, movies beckon to be watched, especially Finding Nemo. The good thing about watching it countless times, is the countless reminders.