Editor’s note: Alissa DeSousa shares memories of her son receiving multiple medical diagnoses, both in utero and in early childhood, including cerebral/ cortical visual impairment (CVI). She also shares how she recognized a need for CVI-friendly videos and proceeded to meet the need.
When my pregnancy was 8 weeks along, an ultrasound found an abnormality and we first heard the diagnosis “cystic hygroma”. We spent the next 12 weeks questioning everything…and then the hygromas spontaneously resolved. We let our guards down, celebrated this victory, and then the baby stopped growing at 32 weeks. Although he was born full term, our son Zane was a preemie, weighing only 5 lbs. He failed his newborn hearing test, but otherwise was deemed healthy. Again, we let our guards down and celebrated a healthy boy.
Two months later, Zane began crying continuously for no obvious reason. He struggled nursing and plateaued with his weight gain. We were admitted to our local hospital for failure to thrive, and two days later we were rushed by ambulance to Boston for an assumed metabolic emergency when he suddenly lost all muscle tone in his body. He looked like a rag doll, unable to control his arms, legs, or head.
We spent an entire month in the hospital, looking for answers. In addition to the loss of muscle tone, he also stopped visually tracking. Soon after being discharged, we were given the cortical/ cerebral visual impairment (CVI) diagnosis. We quickly set up a schedule with our local Early Intervention program, welcoming into our home a physical therapist (PT), occupational therapist (OT), speech and language pathologist (SLP), and a teacher of students with visual impairments (TVI).
Seeking CVI Resources
We read CVI research online, bought books on the topic, and modified our house to minimize visual clutter. When we learned that backlit items are easier to see, we asked what television shows or videos were best. While there were some that were better than others, there was nothing specifically tailored to kids with CVI.
Creating a Resource
I channeled my frustrations of medically complex parenting and started making my own CVI-friendly videos. I knew that there were many things my boys couldn’t do together but watching tv shouldn’t be one of them. There were many challenges beyond my control but snuggling on the couch to watch something together was something I thought I could tackle.
Each day on my lunch break at work, I would make a few slides in PowerPoint, narrating favorite stories or nursery rhymes. I asked a friend to sing some songs, as my tired voice wasn’t quite what I wanted to listen to when we played the videos on loop in our living room. I opted to upload the videos on YouTube so that we could easily access them outside of our house. I shared them on a CVI parent group on Facebook, just in case anyone else could benefit from them…and that’s when I realized that a lot of families had the same frustrations.
These quick little videos suddenly had thousands of views! I created a tutorial for Perkin’s Paths to Literacy, was a guest speaker for professional development sessions, and FaceTime with other parents, helping them create more videos. By sharing the idea, hundreds of new videos were created and uploaded, giving our CVI kids more options to watch. I’m hopeful that one day, someone higher up at Sesame Street or Disney will hear about our kids and be inspired to create something!
Since starting my YouTube channel (and modifying our home environment), Zane’s vision has drastically improved. His CVI score went from zero to five; additionally, his overall development has improved. We recently won the IEP battle for vision services and have been working with a wonderful TVI who is now helping us with new strategies to help Zane reach his fullest potential.
Accessing the Videos
Watch Alissa’s wonderful work at Alissa DeSousa – YouTube.