This may sound like a cliché, but some of the greatest teachers I have had in my career have been clients and caregivers. Roughly 5 years ago while working as the assistive technology (AT) team coordinator at a pediatric hospital in Washington, D.C. I was asked by an occupational therapist (OT) coworker to provide an AT consultation with one of her patients named Maryn. From the moment I met Maryn and her family, I knew they would have a lasting impression on me.
During the evaluation I marveled at Maryn’s mother, Kim, as she described each stage of her daughter’s complicated medical history in great detail while periodically breaking into song or activating a musical toy to help Maryn remain calm. In a matter of three short years Maryn had experienced countless medical interventions and evaluations to address conditions ranging from seizures, mitochondrial disorder, motor impairments, hearing loss, and cortical visual impairment (CVI). Kim’s passion for doing anything she and her husband could do to improve their daughter’s life was infectious.
Throughout my career I have been known for my “why not” spirit when it comes to trying out-of-the-box ideas to help clients. Kim not only appreciated my seemingly random ideas, but she was always thrilled to try the ideas with Maryn. For example when I suggested letting Maryn experiment with a power wheelchair in an effort to help her understand cause/effect and motivate her to move, Kim immediately jumped on board with the plan to put her daughter, who has a visual impairment, behind the wheel. Kim had a wealth of knowledge about CVI and brainstormed ways to make the power wheelchair trial be successful and safe. Even though Maryn did not demonstrate the skills to drive a power wheelchair independently on her first attempt, it was evident that she had linked pressing the switch with moving in the direction of a desired musical toy. That one trial helped her team to develop goals and a treatment plan.
Maryn was just one of the many clients I have worked with over the years who has had CVI. Did you know that 40-50% of our brains are involved in vision? Based on that statistic it not surprising that 20-40% of individuals who have a sustained a brain injury have some form of vision loss. Even though CVI was first noted in the early 1900’s in soldiers who sustained brain injuries, it was not commonly diagnosed in children until the 1980’s. Since then the research and understanding of CVI has gained much more traction. Diagnoses such as cerebral palsy (CP), seizure disorders, and hearing impairments often accompany CVI.
Dr. Christine Roman-Lantzy has long been regarded as an expert in CVI. She has published articles and books on concepts including characteristics of CVI, phases, and ranges.
Common characteristics of CVI outlined by Dr. Roman-Lantzy include:
- Color Preference
- Field Preference
- Difficulty with Visual Complexity
- Light Gazing
- Difficulty with Distance Viewing
- Visual Reflexes
- Novelty of Visual Stimuli
- Absence of Visual Reach
Based on information Dr. Roman-Lantzy has published, with proper intervention and adaptations a client’s vision can improve as he/she moves through the phases (listed below).
- Phase 1: Building Visual Behavior
- Phase II: Integrating Vision with Function
- Phase III: Resolution of CVI Characteristics
Having a greater understanding of CVI and the impact vision can have on seating and mobility may help you develop treatment plans and identify proper equipment to improve the lives of your clients. For more information and resources on CVI explore the following resources:
Since meeting Maryn all of those years ago my passion for learning more about CVI and developing strategies to assist individuals with the diagnosis has increased. In fact, I attended a seminar with Kim on CVI delivered by expert, researcher, and author, Dr. Christine Roman-Lantzy.
Even though Maryn is no longer a client of mine her mother still sends me Christmas cards and we try to get together a few times a year. It has been fantastic to see her grow and learn. She is now using a dynamic screen communication device, driving a power wheelchair, and is a big sister. I am eternally grateful for everything Maryn and her family have taught me.
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Always remember at the end of the day, your client is your number one priority!
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