A group for parents of children with cortical visual impairment (CVI) and professionals that provides information, support and resources for intervention.
I am a mom raising a child with Cortical Visual Impairment (CVI) in Savannah, GA and have created this group to raise awareness of this condition and provide opportunities to learn more, provide resources, trainings and empower parents (& professionals) on how to help children build vision based on the most recent CVI research and evidence-based practices and interventions. My goal is to facilitat
e knowledge-sharing to help parents and professionals take the CVI theory and put it into practice. The Savannah CVI Workshop is a support group that is open to all who are either raising children diagnosed with cortical visual impairment (CVI) or are treating children with CVI. CVI is a neurologically-based visual impairment and the leading cause of visual impairment in the United States. There is very little awareness of the condition and of the latest interventions that provide a roadmap to greatly improve vision in children with CVI. According to the Dr. Roman-Lantzy, the developer of the CVI Range (an assessment of functional vision for children with CVI), 80% of all interventions are being provided by parents with success as early intervention programs and school districts are slow to catch up. Presently, Teachers of the visually impaired (TVIs) are trained to teach children with ocular impairments and the treatment for CVI is very different and because of this, CVI is often missed or misdiagnosed. As one TVI told me, "For every child that I teach Braille to, I have ten children with CVI but I was trained to just teach that child with Braille." Sadly, children are often misdiagnosed with Autism, ADHD, significant intellectual disability and behavioral problems (stubboness, disinterest, "checking out", screaming/lashing out) and if left untreated, CVI visual functioning will persist throughout a lifetime. Children who have abnormal MRIs are at risk for CVI but CVI has been diagnosed in all levels of ability and disability! There is no "diagnostic test" to diagnose a child with CVI but children with CVI exhibit very specific behaviors and diagnosis is based on how a child exhibits 1-10 characteristic behaviors. Does your child...
--have a normal or near normal eye exam but seems not to see?
--get distracted by and stare at lights, ceiling fans or light from windows?
--look at a toy, reach for it and then while reaching turn his/her head away?
--not look at your face and only recognize you after speaking?
--not like novelty, new toys or fusses when in new environments?
--look at the world through peripheral vision?
--prefers red, yellow, shiny objects and toys?
--have difficulty understanding pictures and working with complex school worksheets?
--stumbles walking because of lower field difficulty?
--see items in his/her environment better while moving? For more information on the 10 charactistics that define CVI, please visit: http://littlebearsees.org/ http://tech.aph.org/cvi/ http://www.wonderbaby.org/…/top-8-misconceptions-about-cort… https://cviteacher.wordpress.com/…/10-characteristics-of-c…/
There are several wonderful pages for parents to follow. This page will not replace some of the online parent groups that have professionals in the field curating and providing information. The page, "Cortical Visual Impairment (CVI) Awareness" is a closed group that offers very helpful information. I am not a professional CVI practitioner but I have earned micro-credentials through professional development courses offered through the Perkins School for the Blind http://www.perkinselearning.org/. Courses are available to all professionals working with children with CVI. Presently, I understand there are more Occupational Therapists working for their "CVI-Endorsement" credentials than TVIs!
