CVI or cortical vision impairment means that Lizzie’s brain cannot interpret what her eyes see.  This was a diagnosis I didn’t really understand or for that matter believe for many years.  When Lizzie was a baby, she couldn’t find a rattle if you just held it up.  She would rake the air around it, until she located it.  However, if you shook it, and she had the audio cue with the visual, she could grab it with no problem.  Then she started having vision therapy, and slowly she had improved. She was able to track and follow objects, and could look us in the eye and smile, so I didn’t really understand the condition.  Her ophthalmologist said her eyes work fine, her optic nerves are fine.  She only needs glasses for reading or writing, (close-up work) that she doesn’t do yet anyway.  So the fact that she didn’t tolerate wearing glasses didn’t seem a big issue either.

We went to the state school for the blind and visually impaired for a summer in-service when Lizzie was almost 3, and though I wanted to, I could not attend the seminar on CVI.  It coincided with the seminar on IEP’s (Individualized Education Plans) which at the time I felt was more important.  Because of her disabilities, Lizzie would be starting at school at the age of 3, and I wanted to be prepared for that.  So I missed the CVI seminar and went to the IEP one instead.  Our developmental vision therapist at the time assured me that I didn’t need it, because she could explain it to me.  But she already had, and I didn’t get it.

Two years later, we went back for the in service again, and I made sure to attend the CVI seminar this time.  Luckily this time it did not go up against something else that pertained to us.  I sat down and looked up at the screen.  On the screen there was what looked like an old burned out film cell.  There was a creamy background and brown and black splotches.  I thought it was just an end screen of the seminar.  I would soon learn differently.  When the talk began, the doctor directed our attention to the splotches.  He then flipped to the next slide, and we could clearly see the picture of a cow.  He explained that this picture had the reference material we needed to process the picture.  Then the amazing thing happened.  He flipped back to the previous slide, and THERE WAS THE COW!  The splotches were the cow.  Only now that my brain had the reference information from the other slide, I could see it.  Even if I closed my eyes and reopened them, there was the cow.  I couldn’t turn it off, now that my brain knew how to process it.

Then he explained that this is the part that kids with CVI are missing.  They don’t have the ability to interpret what they see.  To them the cow, even with the references would just be the blotches.  I thought, “Wow, that’s interesting, but my daughter seems to see just fine.”   So, I still didn’t really get it.  I didn’t understand that the problem wasn’t with her eyes; it was in her brain.  Her poor brain that was damaged from all the pressure of the hydrocephalus before she was even born.

Later that summer, it was hot.  And with my daughter being easy to overheat, I bought her one of those spray bottles with the fan attached to keep her misted and cool.  I bought her the red and blue one, because she seemed to like those colors.  I also had bought her a sippy cup that summer to work on drinking (or at least keeping her mouth wet in the heat).  Because they were her favorite colors, it was also red and blue.

One day when we were out in the heat, I went to mist her down, and she opened her mouth to drink.  That was the moment the lightbulb went on over my head.  I couldn’t even believe it.  I suddenly realized that, like that cow, she was seeing blotches.  To her, both the sippy cup and the mister were probably just a set of similar red and blue blotches.  I suddenly understood.  I too might be just a set of blotches that she saw every day, but because that is what she always saw, she knew it was me.  Talk about catharsis.

I realized that I had been wrong all along.  She did have this vision issue.  I just didn’t understand.  She needs that reference information to help her understand what things are.  She still gets vision therapy at school, and she is doing really well.  She can pick things up and manipulate them.  To most people, she probably seems like she doesn’t have any issues with her vision at all.  She seems to mostly know what things are, but I now know that sometimes she might need extra time and more investigation to figure things out.  We just take our time.