So…I went to a three day training the week before last, taught by Dr. Christine Roman-Lansky at the Washington School for the Blind, to better understand Cortical Vision Impairment (CVI). I am still excited, overwhelmed, and spinning from all that I learned. I still have a lot more to learn, we all do. I will do my best to relate what I have learned. If you have any corrections, please feel free to comment, if there is anything I am confident about, it is that we all need to be talking a lot more about this.

Cortical Vision Impairment occurs when there is damage to the brain, usually the occipital lobe, or the optic nerves, but other damage can also cause this because so much of our brain is used for vision. The effect of this damage is that while the eyes appear to work just fine, the brain is unable to process what it sees. As a result, the person with CVI sees the world as if looking through a kaleidoscope. Simple objects are easier to make sense of, complex objects, like faces are very hard. As a result, they often avoid looking at faces.

CVI is currently the most common form of vision impairment in the US. This is because our doctors are getting so much better at saving people old and young. Unfortunately, loss of oxygen, or pressure on the brain, and many other things can leave their mark. Fortunately, due to brain plasticity, there is hope. With proper diagnosis, and intervention, we can retrain the brain to make better sense of what it is seeing.

Dr. Roman-Lantzy has been working diligently to help make this possible. Among her many achievements and projects she has developed The CVI Range to use as a diagnostic, as well as interventions for the varied levels of CVI. In addition she is going to be trialing a simple method to screen newborns for CVI so that we can get services to the little ones earlier.

The CVI Range consists of a parental interview, direct observation, and direct assessment. She guides you through how to evaluate what the child sees. When the evaluation is complete the child is given a score of 1-10, these are broken down into three groups: Phase I = 1-3; Phase II = 3-7; Phase III 7-10. A Phase I child is more profoundly affected by CVI, and may appear completely blind, but with the right environment, and stimuli they can be encouraged to use and improve their sight. Phase II is more subtle. The child can clearly see; the question is what. Phase III is on the way to independence. A Phase III child can be taught to read, and navigate independently through the world.  

Dr. Roman-Lantzy has developed interventions for each of these phases. The idea is to meet the child where they are. Help them use their eyesight, and walk with them down the path of understanding what they see. Help them interpret what they see. Define it using salient features. This is a giraffe because it has a long neck and spots. This is an elephant, because it has a trunk and big ears. The important thing is to give them a broad base of understanding comparison so they can take that forward into the world with them. This sounds a lot like speech, and it is, but it is also vision. If their brains are unable to make these comparisons on their own, we have to help them, through plasticity, to learn to comprehend what they see. This is done through lots, and lots, and lots of repetition. Not sitting in a chair with flash cards repetition, but life as a learning opportunity repletion in addition to classroom time.

Dr. Roman-Lantzy is also working on an infant screening to be able to detect CVI earlier, so that we can get to intervention as early as possible.

There is sooo much more. I feel like I have just touched the tip of what I need to learn, and I have only given a very brief version of that here. Still I felt it was important to get some of this information out there to help others who have yet to get a diagnosis or intervention. Also, because I plan to write up several projects that are related to this topic, and I want you all to know why they are so important to me and my son.

To Dr. Roman-Lantzy, I hope I have done you and your work justice. And Thank you sooo much for taking on this battle with such fervor and heart.

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