This is the third post in a series of posts regarding vision and cerebral palsy. Here are links to parts one and two.

Until last year, when I saw Dr. Christine Roman-Lantzy speak on Cortical Visual Impairment (CVI) I knew very little about the complexities of vision and visual processing. After that lecture, I realized how much support Maya needed in this area and since then I have been working to learn how Maya sees and understands the world visually. In Maya and other children with CP who have had an EDBI (early developmental brain injury)**recently published in the medical journal DMCN, it’s important to consider not only how the eyes themselves are working but also how that incoming information is being processed by the brain.

According to Maya’s developmental optometrist, in all children vision goes through a process of development just like other parts of the body and brain. This development requires the child to have experiences moving in space, playing with toys/objects, and constantly getting visual/spatial feedback. These experiences build the foundation for vision and happen quite naturally for most children. However, when kids have movement limitations they have less opportunity for the brain to gather this critical information and make ongoing and unconscious calculations about where they are in space in relation to other objects. These movement limitations when combined with an injury to the visual processing centers of the brain create complex vision challenges that may not be readily apparent. Therefore, so these challenges are not overlooked, a child’s visual development needs to be seen as an integral part of the overall developmental picture. Every child with CP or an EDBI needs an evaluation of how the eyes themselves are working and how the visual processing centers of the brain are making sense of the incoming visual stimuli.

Vision

Maya’s overall development has been limited by her challenges with visual processing in ways that have been difficult to unmask. For example, originally I had thought Maya’s misidentifying people and her lack of interest in certain toys and shapes were an extension of her personality and sense of humor. Now I understand these behaviors were related to a more serious visual processing issue. I didn’t have much help from her doctor’s figuring this out. Only a few select physicians and professionals focus on teasing apart the complex components that create vision, evaluating not only how the eyes are working together and what they see, but also how the brain is processing the incoming visual information. Consider yourself lucky if you have a local specialist such as a neuro-ophthalmologist who can holistically evaluate eye health and how the child uses vision in daily life.

During her first year, Maya had a few of visits to a local ophthalmologist who evaluated her and helped address an obvious problem with one of her eyes turning in (called strabismus). After a prescription for eye-patching and glasses, and a couple of subsequent visits, we didn’t believe Maya had any vision issues left to address.

It wasn’t until she was three years old that we learned differently. While working with Maya, our experienced and intuitive OT sensed something was abnormal with her vision. She couldn’t put her finger on what precisely was happening and she suggested we visit a developmental optometrist. After our initial visit, Maya’s vision immediately improved with a prescription for bifocals and a subtle prism lens that shifted her visual field upward. Her movements were more organized and both her teachers and therapists reported that she was tuning in and focusing more during the school day. These changes in her lenses provided stability for a while but as Maya’s academic demands have increased, other visual and processing problems have become evident, making it more difficult to figure out how to help her overcome them.

This became particularly apparent over the last year as I had become stuck helping Maya progress with her reading skills. I couldn’t figure out what aspects of Maya’s vision were interfering with her ability to read: ocular impairments, visual processing, or a combination of both.  I knew Maya still had slight strabismus and difficulty visually tracking, but I wanted to know if there was something new I was missing or if her vision had changed and she required a different prescription for her glasses. We went back to her developmental optometrist for help. After a careful evaluation (almost three hours!), she told us that Maya’s prescription didn’t need to change. She explained that Maya tends to use one eye or the other but not both together, and she still has some strabismus. Her existing glasses are helping to mitigate these problems and encouraging her eyes to work together and with more ease. However, as her academic tasks are becoming more visually demanding and complex, she simply needs more time to develop new vision skills, a slow process for her. I compare this to Maya’s need for more time to coordinate and calculate other physical movements, and we are approaching helping her with her vision in the same way we have been helping her negotiate her physical limitations.

Similar to breaking down the components of gross and fine motor movements for other parts of her body, we now are learning how to break down the visual pieces for her until they makes sense. Doing so allows her brain to organize and process the world visually and build upon those skills further. Just like we have found alternative means of helping Maya navigate the world physically, we are knee deep in helping her forge her own path visually with the unique supports she needs to be successful.

One small example of how we do this is to help Maya recognize where she is working on a page. When she thinks about the work she is doing (decoding letters or calculating numbers) or becomes distracted, she is unable to come back to the place she left. Minimizing the visual traffic by covering up surrounding words, questions, and/or pictures, and highlighting the area where she left off, helps her more quickly and easily return to where she was working and allows her to use her energy to continue working ahead.

In summary, we have at least three different areas to address: the visual acuity of the eyes themselves, the physical movement of the eyes in aiming at and tracking subjects and the large issue of the reception and processing of the information received by the brain. It’s critical to address all three to understand problems affecting vision and perception in people with CP. There is no real roadmap or extensive body of research to guide us and her clinicians along this path, and many vision specialists and doctors disagree on what to focus on and what works. We are getting partial pieces of information and vision care from multiple types of vision specialists and I am combining whatever I can on my own to address Maya’s CVI issues. It has not been easy, and has required patience from all of us, especially Maya. In order to wade through the confusion, I have focused on what interventions and suggestions have helped Maya see better (based on what she reports) as well as read with more ease. What is encouraging is that she is improving as we learn how to help her visually organize images and letters.

I hope that more vision specialists and educators will begin to recognize the critical need for comprehensive vision assessments and support for kids with EDBI’s. It’s incredible how addressing the complexities and nuances of Maya’s visual impairments has made a tremendous difference in her academic progress and experience of daily life: playing games, seeing her first train and airplane moving in the distance, being able to tune into and recognize the sun rising, and now beginning to read. Parents cannot shoulder this responsibility on their own, nor can our children wait to have the proper support to access their world visually. The more we can foster the brain’s ability to organize and manage increasingly complex skills in all areas of development, including functional vision, the more quickly children will be able to seize opportunities for learning and habilitating from their initial brain injury. This will offer children like Maya a better quality of life and new opportunities for experiencing the world.

Resources:

You will find a list of resources for CVI and vision impairment in Parts 1 and 2, as well as definitions for a variety of terms used here.

NEW!! Vision and the Brain: Understanding Cerebral Visual Impairment in Children

To find a developmental optometrist in your area visit: www.covd.org **Please note that developmental optometrists often prescribe eye exercises and these visits are typically not covered by insurance. The following website offers some helpful definitions and comparisons of different types of vision specialists.

To learn more about CVI and the work of Dr. Roman-Lantzy visit: http://cviresources.com/page1/page1.html **Dr. Roman aims to educate as many professionals (and parents) as possible about CVI. She developed the CVI Range Assessment and Intervention Scale for evaluating and tracking individual visual processing skills. Her intention is to have these assessments and supports available to students through the school system and part of their IEP. The student would have their classroom learning designed around their vision needs where they would be free and a natural part of their day (as opposed to another therapy visit/s).

Perkins School for the Blind-An excellent online resource for professionals, families, and individuals to learn more about different types of vision impairments.

The laboratory for visual neuroplasticity-Harvard University, Schepens Eye Research Institute

North American Neuro-Ophthalmology Society

Please visit the CP Daily Website for additional updates on vision in cerebral palsy/EDBI