Vision Evaluation

Today M & I had the pleasure of meeting with two individuals from WCBVI.  I learned so much in a very short amount of time.  Hopefully they'll get their report and notes out to me soon because certainly there are things I have forgotten already! 

What we discovered is that M does indeed have one, tiny area of functional vision.  It is, as we suspected, in the lower, right periphery.  She actually appears to visually engage in that field up to four feet away.  She has zero functional vision closer than about 4 inches, zero to the left, zero upward, and zero midline.  She "shuts off" her vision any time she is presented with a challenge and anytime she is startled or uncomfortable.  They also noted she appears to possibly have some cortical-auditory impairment and are working on a referral for that evaluation.  Basically what all of that means is that her eyes and ears are perfectly normal, but the pathways used in her brain to process information are not working properly.  The good news is that with training, these types of impairment CAN improve.  She will likely never have 100% functional vision.  She will always have an impairment.  However, with a lot of hard work, she COULD get to a point where visual input could be a part of her life. 

The most valuable thing I took away from our meeting is a sense of what living life without vision is like.  I learned how M should be handled, approached, talked to, touched, introduced to people/things.  I learned that she deserves and requires a lot of respect in terms of her personal space and her desire to do (or not do) things. I was reminded that it's okay for me to remind people that they should ask permission before approaching my child.  I learned about some of the things we're doing right and a lot of the things we could be doing better for her.  Truth is, there is a lot we need to learn and some changes we need to make.  We definitely need to slow down A LOT!  I learned about hand under hand assistance, dandy hands, calendar systems, and passive transport.  I learned about synapses and senses.  There are so many things we can do in the present to help improve her future. 

I will make it a point to try and share some of the techniques we try and the outcomes for those of you with CVI kiddos.  I welcome input and suggestions as well!