CVI Parents have three problems

My son was diagnosed with cortical visual impairment (CVI) as a newborn in 2011, before he came home from the children’s hospital neonatal intensive care unit. Like many kids who have CVI, he had a stroke. Or more specifically, hypoxic ischemic encephalopathy, HIE. His birth experience meant absorbing the diagnoses of infant stroke and CVI, as well as the great unknown that goes along with that, because CVI is not a stand alone diagnosis. The doctors, neurologists, called it cortical blindness. This was a day or two after hearing the heart breaking words infant stroke for the first time, a phrase that is not comprehensible in the moment. Cortical blindness, the neurologist said. Because his impairment involves the brain, and not the eye itself, there is nothing you can do. Instead the doctor should have said, Because his visual impairment involves the brain – there is so much you can do. This should be the message to all parents whose child receives a diagnosis of CVI.

Since that time, the goal has been to learn as much as possible about my son’s cortical visual impairment. Most of that learning has centered around the practice of Christine Roman-Lantzy, whose life’s work has been life changing for my child and so many others. Learning has involved reading books, conducting internet research, Skype calls, attending distant CVI conferences and workshops. Instead of vacations, travel is for CVI conferences – and most CVI trainings are nowhere near Washington State. Over the course of time, after meeting dozens of other CVI parents, and sharing and hearing stories, a pattern emerged. Parents of children with CVI have three problems.

We cannot get a CVI diagnosis

Many families struggle to get a diagnosis of cortical visual impairment. Over and over, you hear this from parents, who often come upon CVI in researching their child’s condition, or from talking with other parents, and from simply observing their child. Parents tend to have the same questions (How do you get a CVI diagnosis? Who diagnoses CVI? An ophthalmologist). The doctor either dismisses CVI or is otherwise reluctant to diagnose it. Wait and see is a common response but we know that when it comes to brain based CVI and the principles of brain plasticity (Roman), time is not on our side. Other doctors mistake CVI for delayed visual maturation (DVM), whose solution is again wait and see and is not something you can afford to do. When we talk about the lack of awareness and knowledge around CVI, we are talking across the board – from doctors, neurologists, ophthalmologists, pediatricians to early childhood educators, therapists and TVIs.

Parents, if you are having a hard time obtaining a CVI diagnosis, keep going, trust your instincts.

My child’s providers do not know CVI

This is a big one and affects most children with cortical visual impairment. Of all the CVI stories, the one where the child has early childhood educators or a vision teacher who knew and understood CVI is the rare exception – it is not the rule. When you receive a CVI diagnosis in infancy or early childhood, we are talking about the early interventionists. You learn right away that most people on your child’s early intervention team (educators, feeding therapist, physical therapist, occupational therapist, speech language pathologist) have either not heard of CVI, or have heard the term but know nothing about it, and do not know how to provide appropriate services for little ones with CVI. You also learn right away that it will be your job to educate all of them on what CVI is, and what CVI looks like for your child.

My child’s TVI does not know CVI

Again, stories of children with CVI who have a teacher of the visually impaired (TVI) who is competent in CVI, are not the norm. Yes, there is a critical shortage of TVIs nationwide. But we know that the lack of TVIs skilled in CVI is due to the fact that most all vision teacher preparation programs in our universities are not teaching nearly enough about cortical visual impairment, the leading cause of visual impairment in our kids. And CVI children and families are suffering. Programs such as the Perkins-Roman CVI Range Endorsement were created to help remedy the problem, but it is not enough.

Admittedly, there are brilliant TVIs doing amazing work serving and advocating for kids with cortical visual impairment. And they are few and far between.

Here is our story.

We live in a major city but my son did not have his first real TVI until he was two years old. Our situation was unique in that there was no birth to three TVI around, and our state school for the blind did not serve the city of Seattle, because Seattle “has people,” as it was explained. When our family resource coordinator (FRC) was unable to locate a TVI, of course it fell to the CVI parent to take matters into her own hands. The first TVI was clearly not skilled in CVI and his few home visits, focused on tactile learning, rather than learning to see (Roman), were a red flag. We found the second TVI with the help of our state deaf-blind agency. This TVI was an improvement, though she still did not know enough about CVI. Personal health issues and being in different cities meant my son had limited access to his TVI. The transition to public school has not been much better. Developmental preschool came with the TVI who knew CVI from a weekend workshop. CVI is not a quick study, most people struggle with the concept of cortical visual impairment (“CVI is about recognition, not acuity”). CVI means lifelong learning. My son started out in Phase I CVI and there are CVI concepts that could only be grasped as he progressed along the CVI Range (Roman). This TVI did not want to make any modifications for my son. It did not help that the TVI was backed up by the special education preschool teacher, “We’re trying to prepare these kids for kindergarten so we need all the materials to look the same.” Neither the TVI or O&M at the table batted an eye. Now that my son is in first grade, it is necessary to make the giant leap from explaining CVI 101 to explaining why sensory complexity is such a great big deal in Phase III CVI (Roman). Explaining it over and over, to a school team, including the TVI, is like banging your head against a brick wall.

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As the parent of a child who was diagnosed with cortical visual impairment at birth, the lack of awareness of CVI has been one of the hardest lessons. For a few decades now, we have known about the description and incidence of cortical visual impairment thanks to the work of Dr James Jan. It has been more than ten years since the publication of Christine Roman-Lantzy’s book, which provides a reliable approach to assess and serve children with CVI. Her book was published well before my son was born. We have had plenty of time. In 2018, it should not be this hard to get a diagnosis of CVI. It should not be this hard to find educators and therapists who know something about CVI. It should not be this hard to find a TVI who is competent in CVI. The narrative needs to change.

This is what keeps a CVI parent up at night.