When you hear Cortical Visual Impairment (CVI), you might immediately think “vision issue", however, CVI is actually a form of visual impairment caused by a brain problem rather than an eye problem. Cortical Visual Impairment can also be called Cerebral Visual Impairment. CVI is often misdiagnosed as delayed visual maturation. However, delayed visual maturation typically resolves by one year of age. The delay in a proper diagnosis of Cortical Visual Impairment is a more common occurrence than I would like to believe and can further prolong the child getting proper therapy services in place to help improve vision.
Unlike some other diagnoses, Cortical Visual Impairment can actually improve. I want this to be known because when Conner received his CVI diagnosis, we were told we had until he was two years old to improve his vision and after that it just was what it was. We were also told that he was legally blind and he would always be that way. Talk about a punch to the gut.
Thankfully I had the wherewithal to begin researching CVI immediately. I quickly learned that CVI can improve well past the age of two. Doing my own research on CVI empowered me. It helped me feel like I regained control of the situation a little bit and that I wasn’t completely powerless. I could help Conner. That is all I cared about.
Little Bear Sees was the first book and resource I found for CVI. I encourage every parent to read this book if they suspect their child has CVI or if their child recently received a CVI diagnosis. This book provided me with the hope that I needed for Conner’s future in regards to his vision. In addition to hope, I found many ideas that I could implement into our daily lives in order to help Conner build visual pathways.
So, your child gets a CVI diagnosis, what’s next?
Breathe. Then start your search for a teacher of the visually impaired (TVI). A bonus would be a therapists who is CVI endorsed. A current directory can be found here. Having a diagnosis of CVI will make adding this service so much easier.
Finding a TVI that is CVI endorse is so helpful. They can assess your child and give you an idea of where they currently fall on the CVI Range. This will be crucial information because it will help you know how and what to work on with your child in regards to vision. To learn about the CVI range, assessment, CVI characteristics, etc. click here.
In addition to providing therapy services, a TVI will be able to connect you with resources. Conner receives items on loan that are specific for kids with visual impairment. One being a light box, patterns, colored cubes, etc. to use with the Lightbox. There are a variety of things you can have on loan to help with your child’s CVI. Ask your TVI or other therapists!
Next, try to figure out what your child’s “favorite” color is. Typically it is red or yellow. I honestly couldn’t tell you which Conner preferred more, even after watching him and trying to figure it out. That being said, I just got red and yellow things to add to as many activities during our day. I also got an Elmo doll and a big bird doll - both are mostly one color and not complex. I bought two or each so that I could make sure Conner had at least one of these with him at all times. They went with him in the car, in the stroller, at home, etc. The idea is to give your child as many opportunities to use their vision as possible. I knew he could see these things and therefore it was something for him to look at during any point in the day - thus building pathways and improving his vision.
Other ideas to add to your routine:
The Dollar Store will become your new favorite place to frequent. I thought people were crazy when they would tell me this, but it is true. So many things can be found there that are perfect for CVI (silver cellophane, pom poms, solid color bows, Mardi Gras beads, etc.).
We built a Little Room. It provides sensory feedback when the child moves and encourages them to explore - using a variety of senses.
Conner was inpatient a few times and struggled with feedings (had to lay still for long periods of time). We used PVC pipe to hang toys over him. This provided a constant opportunity for him to use his vision when he wasn’t able to do anything else.
Mylar balloon (red, yellow, silver - all shiny) at the changing table. This gave Conner 7-10 opportunities to see while I changed his diaper. This was my favorite thing because it was easy, gave him something to entertain him and I knew he was using his vision (in addition to reaching, etc.)
Add silver cellophane to the inside of an O-Ball. This was one of Conner’s favorite toys. It was easy to grab, see because of the reflective silver cellophane and it made a fun crinkle sound.
I added a red bow to Conner’s bottle. It worked well, but then we found a red O-Ball football and cut the ends off of it in order to fit the bottle in the middle. This gave Conner something to look at and also something to hold to encourage self-feeding.
I used red spoons when working on spoon feeding.
Black mats used on the floor in his therapy area (instead of busy, colorful mats). This provides a simple background and allows him to focus on therapy or using his vision.
So Big Book - I read this book to him every night. It has simple pages and Elmo is large. You can also black out the background in order for Elmo to stand out more. Now when I read it to Conner, he can do the things Elmo is doing in the book (i.e. Elmo plays peek-a-boo, Elmo waves goodbye).
Here are more of my favorite things with Conner - including some toys we used often early on in his diagnosis.
Lightbox - This adds backlighting to help make simple patterns and pictures easier for kiddos with CVI to see.
My next best advice is to research. If you are able to, schedule an appointment with Dr. Christine Roman. She is located in Pittsburgh, PA, but also does virtual consults through CVI Connect. If you want to go see Dr. Roman, call ASAP because she books way out. as she is that busy. In the meantime, there is a lot to learn about Cortical Visual Impairment - take your time. It will all start making more sense and you will start learning when your child is seeing and how to best help them build more pathways. It will take time), but they will improve as long as you work with them.
Helpful Cortical Visual Impairment (CVI) Resources
Little Bear Sees - This is the first site I found shortly after Conner's diagnosis. This is where I found hope for kids with CVI.
Little Bear Sees book - I strongly recommend parents, family, therapists, etc. to read this.
Strategy To See: Strategies for Students with Cerebral/Cortical Visual Impairment by Diane Sheline
Vtech Snail toy - Conner loves this and he uses his right hand (weak side) with ease
Little Room
Cortical Visual Impairment (CVI) DYI Support Tools Facebook Group
Black adhesive felt sheets - these are good for creating simple backgrounds on just about anything. You can also attach items to them with velcro.
Bubbles - Conner loves bubbles and they provide a reflective quality that many CVI kids need
Multifunctional edge and corner guard coverage - can be used for a variety of things, but we use it to draw Conner's attention to his parallel bars, so that he knows where to place his hands
Clip Lights - these are very bright and helpful when trying to highlight a toy or other item you're encouraging your child to look at
Jingle bell hangers - reflective bells were one of Conner's favorite things early on in his CVI journey
Reflective cat toys - reflective property and small and light enough to pick up for children with physical challenges