“The bottom line is that child is not making sense of the visual world.” – A CVI Mom speaks

Hello Fellow CVI Families!

CVI Momifesto has been around a month today!  (I started it on Labor Day.  See what I did there?)

If you have read a post or two, I encourage you to go back and look at the first post in which the actual Momifesto is laid out.

There remains a need for advocacy for our children. Our children often have several diagnoses.  They are often called “complicated” (If I had a quarter for every time I’ve heard the word “complicated” in a doctor’s office or a classroom,  I’d have toll fare for the rest of my life.)  Some of our children aren’t that “complicated” and the extent of their vision loss goes unnoticed, and therefore, unaccommodated.

Before I published CVI Momifesto, I contacted a mother named Bernadette Jackel after I found her post on another blog. She graciously agreed to let me include her story here.

Bernadette has an important perspective to share with CVI parents.  She has been on this road longer than many of us.

Please read her story and share your thoughts.

The following was posted on 10/30/08.  (A Parent’s Voice blog by Susan LaVenture on http://www.familyconnect.org)

The first guest blogger, a mother from Connecticut, is Bernadette Jackel. Her son is seventeen years old, and has cortical visual impairment (CVI). Many families that have kids with CVI find that it can be complicated; often times the services providers themselves don’t fully understand the impact the visual impairment has on the child’s learning. A child with CVI often has so many complicated issues that frequently the vision impairment is ignored, and a parent needs to be the advocate to make sure that their child is receiving the treatments and rehabilitation services that will allow him to learn.

by Bernadette Jackel
Cortical/Cerebral Visual Impairment is the fastest growing diagnosis of visual impairment today, and yet there are still many medical and education professionals that don’t understand the implications CVI has on learning and functioning in a visual world.
When my son was born 17 years ago, there was not very much information available on CVI nor was it easy to access that information since the Internet had not yet been designed. We had to muddle through as best we could, taking his vision into consideration at every turn.

My son experienced difficulties with visually guided movement so he walked later than his peers. Once he was walking, he tripped over curbs, walked off stairs as though they were flat, hung on for dear life in crowded environments, was not able to see in noisy environments, had a difficult time orienting himself in space, and often confused other people for me. He also experienced his vision being there one moment and not being there the next. He needed everything he was looking at explained to him so he understood what he was seeing.
When my son began school, we found that the staff had no knowledge of CVI. They couldn’t understand that this cute, blond-haired, green-eyed, lovable, friendly, outgoing, funny, ambulatory, speaking 5-year-old who didn’t “look blind” and “seemed to see” could possibly have Cortical Visual Impairment. The TVI did not know how to teach the staff how to teach a child she didn’t know how to teach herself.
So, it was decided that his visual impairment would not be considered a “true” visual impairment but instead a learning disability and later an intellectual disability. After all, his acuity is measured at 20/80 and he could see the primer print. But it took him a really long time to focus on each word because he lacked saccades. He didn’t see the middle of each word because he had a central scotoma. He didn’t understand the pictures on the page because there wasn’t enough contrast. He couldn’t pick out one object on the page because the page was too crowded to see more than one thing at a time.

He had difficulty in math because he was unable to see all the objects he was supposed to count. For example, he would only see three items yet he was told there were five in front of him.

The playground became another area that was difficult for him. He couldn’t play ball because he didn’t see the ball coming at him. He couldn’t run around with his peers because he so often had to stop to feel surface changes with his foot for his own safety.
He also had difficulty identifying classmates by sight, sustaining visual attention for long periods of time, seeing in the distance, and difficulty with extraneous auditory stimuli.
Again, although these difficulties were well documented and he had a diagnosis of CVI, it was decided that he chose not to see, that his visual fluctuation was volitional and his difficulties learning were due to “other issues,” not to vision. I often liken his public school experience to refusing to teach a deaf child communication skills and then saying that child has a severe language disorder.
These same difficulties that he had at 1, 2, 3, 4, and 5 years old he still has today. Much of it he has learned to compensate for himself, however, not one of the above-mentioned issues have resolved, gone away, been cured. Because of our diligence and his own perseverance, he certainly understands the world better now than he did when his CVI was considered to be a learning disability rather than a visual impairment.
We had to go through a due process hearing in order to get him an appropriate education. Once he was given the proper modifications and accommodations from a wonderful staff that understands the learning implications of CVI, both academically and functionally, he began to thrive. Unfortunately he spent seven years not getting these modifications and accommodations.
It is disturbing that these same misunderstandings still exist today among many of our medical and educational professionals. Today there is plenty of information available, but every day I read how children are still experiencing the same difficulties getting the proper services that we did.

Parents are still in search of good information because they are not being given any from their medical professionals. Some parents are having a hard time finding a doctor to give the proper diagnosis although the child clearly has CVI. Certainly children are entering schools where there is no knowledge of CVI, and often these children are experiencing the same difficulties my son did in trying to get an appropriate education.
Regardless of whether a child cannot see due to an ocular issue or a brain issue, the bottom line is that child is not making sense of the visual world. The lack of understanding this leads to many, many difficulties in the child’s life, difficulties that can easily be circumvented.
It appears that we are still lacking good strategies for students as they enter into school settings although we are not. Many, if not all, of the same strategies one would use to teach a child who is blind or low vision are very beneficial to the student with CVI. The child’s educational environment must also be taken into consideration.
CVI is a real visual impairment and it is a growing diagnosis. CVI needs to come to the forefront of the medical and educational collective mind so children can get the proper diagnosis and the education they deserve. Colleges and universities with TVI programs need to have good, comprehensive classes on CVI so the teachers understand and learn best practices. With all this in place, many of these children will reach their fullest potential and become contributing members of society; otherwise, I fear we will end up with a large population of undereducated, visually impaired people who will be dependent upon society for their livelihoods.

This was written 9 years ago.  Pretty sobering, huh?

WHAT YOU CAN DO:  Join the conversation.  If you are willing to share some of your story as a CVI parent, write us here at info@cvimomifesto.com.

We will follow up with you for an upcoming feature.