We sat in the cramped waiting room of the Opthamalogist’s office for nearly 2 hours before the assistant finally called Ayce’s name. She led us into a large examination area and shone a light into Ayce’s eyes, then asked me a few questions:
“Does he have any favorite toys?” No
“Have you noticed him gazing at faces?” No
She then shook a toy in front of his face and said “The structure of his eyes looks OK. The doctor might want to get some pictures. I’ll call him.” She led us back to the waiting room and said the doctor would see us shortly.
40 minutes later we were led to yet another examination room. We sat and waited 15 minutes for the doctor to appear. He performed the same tests as the assistant and then said “The structure of his eyes is fine, but he can only see light.”
It was all I could do not to scream “Bullshit! I know he can see. He tracks Joel and me around the room. He can follow a red toy as I dangle it in front of him.” But the doctor left the room before I could say any of this.
Luckily, the Early Intervention Program nurse agreed with me. She noticed him seeing things too. I got a referral to the CNIB, and just over a month later we went in for Ayce’s functional assessment.
Wow! What a different environment. We were led into a room that was a paradise of brightly coloured toys. “You can borrow any of these whenever you like” said Nichole, our Occupational Therapist. I noticed a sign advertising a weekly playgroup. We settled down in a quiet corner of the room and Ayce and Nichole started the hard work. She examined his eyes. She presented him with a variety of sparkly coloured garlands, flashing them with a small light so that they were more enticing to look at. She patiently waited for him to notice the garland and slowly moved it so she could assess his field of vision.
Here’s what she concluded: Ayce has what is called “Cortical Visual Impairment”. That means his eyes see things just fine, but the processing centre of his brain doesn’t always know how to interpret the messages they send him. While he is able to see all of the primary colours, his favorites are red and blue. Yellow is difficult for him to see. He can see well in all fields of vision but prefers his Left side.
Nichole says that the more he practices seeing things, the stronger the neural pathways to that area of the brain get. So right now we have a whole bunch of toys in the red spectrum to work on strengthening those pathways.
Since we started doing this, Ayce is now reaching out to touch the toys placed near him. Especially when he is seated or laying on his side.
It is nice to have my knowledge and beliefs about my son validated! It just goes to show you what a different experience you can have in different medical settings. What I learned through this experience is to keep pushing and trust my instincts. Advocacy is a HUGE part of special needs parenting, and it can be hard not to get worn down.