Telephone Support Group for Cortical Visual Impairment in Children

Editor’s note: We are pleased to welcome Judith Millman, LCSW, CVI telesupport group facilitator as a guest blogger today!

Judith Millman, smiling in a beautiful coastal setting
Judith Millman

CVI—cortical vision impairment (often called cerebral vision impairment in Europe and the British Isles) is very much in the news these days. It is the predominant cause of vision loss in children in the US and Great Britain. There are many reasons for the startling number of kids with CVI—not the least of which are the advances in neonatology in the past ten years. Many children born very prematurely are surviving now where they might not have made it in the past. Unfortunately, they may often present with a variety of developmental issues—including CVI.

CVI is caused by an incident or injury to the brain—whether in vitro or after a child is born. The location of the injury to the brain will determine the challenges the child will face. Children with CVI can present very differently—some are ambulatory and have no communication delays; some are grossly delayed in all developmental areas; some are significantly cognitively delayed while others have age appropriate cognitive development. Many children with a CVI diagnosis also have a concurrent diagnosis of cerebral palsy.

One of the main concerns of parents of children with CVI is getting the appropriate diagnosis and also the appropriate services in place. Given the prevalence of CVI, it is a concern that there are still many professionals who are not prepared to diagnose or treat CVI. Many parents have been told that their child with CVI is blind—when they know from their own experience that this is not the case. Appropriate intervention at an early age is the key to whether a child will learn to use his or her vision effectively. It is so important that professionals in the vision field—ophthalmologists, optometrists, teachers of the visually impaired, orientation and mobility specialists, and special education teachers become knowledgeable about CVI.

There are several conferences that parents and professionals can attend in the next few months to learn more about CVI. They are:

For the past eight years, Lighthouse Guild has been sponsoring a telesupport group for parents of children with CVI. It is by far the largest group in the telesupport network. We have parents of children from infants to young adults in the group and people from all over the US as well an occasional caller from Canada and even India. We meet weekly on Tuesday evenings. We have been very fortunate in having a renowned expert in the field—Dr. Christine Roman-Lantzy—join the group once a month. She has been an invaluable help to our parents. We often have other knowledgeable guests join as well. The group discusses everything from getting an appropriate diagnosis to literacy concerns to how best to prepare for a successful IEP meeting and more. Most importantly, the parents provide support, suggestions and strategies to each other and reinforce the concept that one is not alone in this journey.

If you are interested or want more information about the telesupport group, please contact LighthouseGuild at 800-562-6265.