Parent of a Child with Cortical Visual Impairment Speaks Out

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As I'm out meeting with families in different parts of the country, common issues always arise in regards to children who are blind and visually impaired. So from time to time I am going to invite guest bloggers who are living these issues to express what their experiences have been. I hope that "A Parent's Voice" can be a forum where we can all interact with each other.

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.


Bernadette Jackelby 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.

Topic:
Cortical Visual Impairment
There are currently 7 comments

Re: Parent of a Child with Cortical Visual Impairment Speaks Out



I can't believe how much you had to go through with your child to get him the right diagnosis. It is well known that half of the cure of an illness is getting the correct diagnoss, because when you know what is wrong with a person you know which medicine or in your case which therapy to provide. If they miss diagnosed your child than half of the time spent on treating him was wasted time. Reading your article made me realize even more how important it is Parents Advocacy. Good luck.


Re: Parent of a Child with Cortical Visual Impairment Speaks Out



My son is three and half years old. We are native of India and currently residing at Sharja, UAE. In India or here, none of the opthomologist or neurologist is diagnoed about his visual impairments. According to them, he is hyperactive and attention deficit. Just few days back, i read about Cortical Visual Impairments. All of the checklist matches with his symptoms. Then I myself came to a conclusion that he is suffered with CVI. I do not get a proper guidance for medical or educative support. It would be very helpful if any provides me such information.

Thanks.


Re: Parent of a Child with Cortical Visual Impairment Speaks Out



Hello,



Thank you for responding to this blog. Some of you have asked for further information on CVI. I would highly suggest you take an on-line course offered by AER (Association for Education and Rehabilitation of the Blind and Visually Impaired). The course is by Dr. Gordon Dutton, a Consultant Pediatric Ophthalmologist and Professor of Vision Science in Scotland. He has a special interest in CVI due to brain damage in children. The course will help you better understand CVI and give some good habilitation ideas to help with your students or children. You can find further information at www.emeraldevents.net/diopp/?rcode1=AER. Teachers who complete the course can obtain CEU's. Dr. Christine Roman-Lantzy's book Cortical Visual Impairment gives some good early intervention strategies. Another publication you may find helpful is Proceedings of the Summit of Cerebral/Cortical Visual Impairment. Both of these publications can be purchased through AFB Press.



I hope this information will be helpful to you and I will happily answer any further questions you may have.



Sincerely,

Bernadette


Re: Parent of a Child with Cortical Visual Impairment Speaks Out



Bernadette,

Thank you so much for your insightful, informative letter regarding your son's school experiences and CVI. (I appreciate the link, too.)

As I head back to school for my orientation and mobility certifications (COMS), I will keep your information in mind and share it with classmates (and professors, if need be) so that more people will have a better understanding of the ramifications of CVI and the myriad, creative ways of working with someone whose best educational outcome is driven by it.

Sincere best,
Leslie Ligon


Re: Parent of a Child with Cortical Visual Impairment Speaks Out



here is another great CVI resource, which highlights th learning challenges associated with the condition:http://www.aph.org/cvi/index.html. I'm hoping to see CVI represented more in health insurance plans for children. The risks associated with learning disability are too high to accept in a child's formative years.


Re: Parent of a Child with Cortical Visual Impairment Speaks Out



Our daughter was CMV positive at birth and went deaf at 8 months of age. She had surgery for strabismus at 6 months, and received years of eye therapy to help improve her vision. It was not until she was located at a school for the deaf that teachers there recommended a Deaf/Blind assessment as there was much more going on then simply deaf issues. Due to extremely poor vision, she qualified at that time for deaf/blind services, and some fantastic gains were made from the specialists she had access to at the point. Their characterizations and recommended accommodations from just a few assessments were both accurate and effective and simply like nothing we here parents had ever been exposed to. It made amazing differences in her learning and life. We gained amazing insights into her learning and life challenges.

As things progressed, however, her vision tests actually improved to the point that she no longer qualifies as visually impaired by the standard OCULAR measures, though she continues to exhibit some of the "classic" CVI issues (poor transitions across different lighting environments, poor balance, difficulty navigating new rooms/situations, fear of stairs and escalators).

Though we are trying to move toward voc. rehab services for our daughter to offset the loss of vision services, it is obvious that the types of skills on the deaf/blind side of the fence were highly effective and we will certainly miss access to them on our daughter's behalf. They certainly gained her a lot of ground for the short time she had access to them.

It is truly sad that the Federal definition of legal blindness which everyone uses is so archaic and out-dated given what is now known about how we SEE and how it is so much more that just OCULAR.


Re: Parent of a Child with Cortical Visual Impairment Speaks Out



My 2-month old son suffered a stroke, likey during delivery. The greatest area of concern for him is his vision. We are looking for any treatment or therapies we can start early on, while his brain is growing rapidly. Currenly we are in Korea but plan to relocate to the US in the near future. We read Cortical Visual Impairment by Christine Roman Lantzy and Everyday Activities by Trief and Shaw, both purchased from AFB. We would greatly appreciate any help with finding the right resource to help my baby strengthen his visual functioning. Does anyone know good therapists in the area of vision improvement? Or any other ways that we can help our son?


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