The First 3 Things I Did to Help my Daughter’s Cortical Visual Impairment

I’ll be the first to admit it, I had a bad case of denial when it came to acknowledging and accepting that my daughter’s vision was lagging far behind (or almost non-existent). Somehow I had managed to convince myself that she did make eye contact with me and look at things — sure maybe not all the time but I felt that she was still very young (only 2.5 months old) and would start fixing and tracking in no time.

My husband was not as optimistic and knew that something was wrong far before I did. Taking her medical history into consideration, he was already attuned to the fact that we had a serious challenge on our hands.

I started coming around to the fact there could be a problem when the paediatrician and neurologist asked if she was fixing and tracking. During our daughter’s neurology exam, the doctor waved a red tool in front of her eyes and declared that she had still not developed this ability. She suggested we expose her to lots of bright and colourful toys that light up. Not knowing anything about Cortical Visual Impairment, sometimes known as Cerebral Visual Impairment, I showed her many toys but often they were busy and I didn’t implement any of the CVI best practices, such as showing her simple toys against a solid background or using light and movement to draw attention to what we wanted to show her. When I held toys for her to see, I certainly wasn’t giving her enough time to process what I was showing her. As I became more and more conscious of the ticking time and lack of visual improvement, I explored one of the Cortical Visual Impairment Facebook groups my husband had invited me to.

Step 1: Read the right stuff

In the Facebook group I joined, parents raved about the book “Little Bear Sees” by Andrei Tallent, Aubri Tallent and Fredy Bush. I purchased it immediately and read it from front to back within three days. Suddenly everything started to make sense. We had to pick one toy and take it everywhere with us so that she could begin to recognize it. If you’re just starting your CVI journey, I highly recommend reading this book.

Step 2: Choose a toy and stick with it

Based on the suggestion in the book, I purchased a bright red Elmo stuffy from Amazon and began taking it everywhere with us. Everywhere. That was at the start of April 2019. Today is June 4, 2019 and our daughter glances at it often (but not all the time). Once she started doing so, I introduced the bright yellow Big Bird. The goal is to gradually introduce new items that are very similar to the ones she is already noticing so as to help her brain learn to differentiate and build her visual library.

Step 3: Visit the Dollar Store

I knew we had to build many opportunities for visual stimulation into her daily routine, such as having something that attracts her attention at the diaper change station and attached to her car seat. The Dollar Store is the perfect place to buy cheap and shiny stuff. Shiny ribbons and pinwheels, glowsticks, foil balloons, you name it.

We’ve come a long way in 2 months

Today, we have built opportunities for visual stimulation throughout all of our daughter’s daily routines and we work with a fantastic visual therapist who is highly experienced and trained in administering Dr. Christine Roman’s CVI Range assessment. We understand where she is at and what we need to do to help her progress to the next level. In my next blog post, I will share some of the ideas we’ve come up with that are working well for us.