Our CVI Journey by Loreena Hegenbart

Cortical Visual Impairment(CVI) is a brain-based impairment that affects visual processing. CVI is the leading cause of visual impairment in children in the US and other countries.   Dr. Christine Roman says, “Children with CVI can see what we see but the brain cannot interpret it.”  CVI is different from an ocular impairment or blindness.  Dr. Roman recommends early diagnosis, appropriate assessment and with visual activities and interventions vision can be improved. Dr. Roman has numerous CVI videos that will help us understand what this little-known visual challenge is.

 My son was diagnosed with CVI before he began kindergarten. The elementary special education teacher heard about a CVI conference with Christine Roman, PhD. She brought the conference information to the elementary school principal who approved sending us to this training. Dr. Roman’s knowledge of CVI overwhelmed me.  I had no idea what to do. She recommended resources to try right away.  The SPED teacher gave the “shopping list” to the principal and the rest is history.  My son began showing preference to the natural colors, beginning with red!  He was then enrolled in the Educational Services for the Visually Impaired. (ESVI)

When he was in the 9th grade, Children and Youth with sensory impairments (CAYSI) Family Consultant, Jana Villemez visited me.  The representative informed me that my son qualified for further assistance through the CAYSI project.  CAYSI hosted numerous trainings for parents and professionals.  My son’s nurse, special education teacher, and his waiver staff all attended the training called “SPARKLE!”  This training provided hands-on activities that assisted everyone to understand not only CVI but other characteristics of visual impairment.  CAYSI then started a parent support group which helped us share ideas, concerns and friendships. 

Now Jana Villemez has retired and CAYSI is void of a Family Consultant at this time.  However, teachers can find support through Jennifer Bishop. ([email protected]) The parent support group has moved onto night zoom monthly meetings with Jana ([email protected]) who is now working with the National Center for Deaf-Blindness (NCDB).

CVI is not curable but over time the student/child will be able to improve over time with consistent exercises.  The process is usually done in a quiet subdued environment where the student can concentrate on the item chosen to look at. 

Here are some resources to get started on your CVI journey!

Start Seeing CVI – Increasing awareness of cortical visual impairment (CVI), the leading cause of visual impairment in children

AAPOS Home – American Association for Pediatric Ophthalmology and Strabismus


Improving services, results, and quality of life for children and youth who are deaf-blind (nationaldb.org)

Roman on CVI – YouTube

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