Before you start reading our story, I want to say that I have met amazing people; friends, family, professionals, work colleagues and complete strangers who have made this unexpected life turn bearable and, at most, utterly joyful. What makes an amazing person in my eyes is one who treats my child not like a “special little angel” or a burden to be kept at home out of the way, but just another kid and one that is treated as a full and included member of their community. Thank you to all of them.
The journey as a mother of a disabled child started after a traumatic, premature birth, a twin death, and a hospital-acquired E. Coli infection from within the local hospital’s NICU. That infection caused an ischemic brain injury; periventricular leukomalacia (PVL), which manifests in my son as cerebral palsy (CP); Cortical Visual Impairment/Cerebral Visual Impairment (CVI) and a speech-language disorder. From that moment, my partner and I at the time were thrown along a path that we never dreamed we would have to travel.
Living in a deep South state that ranks 3rd to last as the worst state in the U.S. for people living with disabilities, including chronic underfunding of public health infrastructure and public education, the journey was an abiding and discouraging, grief-stricken struggle. We went through four years of services with all the local experts: neurologists; pediatric ophthalmologists; early intervention occupational, physical and speech therapists; and early intervention teachers of the visually impaired (TVI). All of whom completely missed the CVI that was central to my son’s severe sensory deficit and learning challenges. Even after a hard-fought vision evaluation from the Preschool Intervention Program evaluation, the evaluator said my son’s eyes were “perfect,” and she added with a not so subtle admonishment about why I was “wasting her time evaluating a child who obviously did not have problems with his vision.”
Thankfully, Stephen and I had a stroke of luck that would end up changing everything.
Because our family had resources, I was able to take him out of state to visit with specialty programs and specialists. When Stephen was four, I took him to a center in Cincinnati that works with children with motor disabilities. There was a nurse assigned to take care of another little boy attending the same session. One day, she looked at Stephen for less than 5 minutes and said, “Did you know that your son is functionally blind?” Wha … what?
That was eight years ago. It just so happened that a local ophthalmologist in Cincinnati had trained a team of early intervention teachers of the visually impaired (ETVIs) on the work of Dr. Roman-Lantzy. That nurse happened to be working with a child receiving CVI services. She immediately noticed (what is now obvious) visual behaviors that screamed CVI Phase I. I was connected to one of the ETVIs the next day.
After putting my son in a controlled environment, the ETVI handed my son a simple half-deflated, yellow balloon on a lightbox. It was like turning on a light bulb. I had given my son a balloon before and not much interest. This time, my son devoured that balloon, grabbed it, turned it around in his hands, rubbed it on his face, bounced it and was so excited about that silly balloon that he played with it for 15 minutes. It occurred to me at that moment that my son was seeing a balloon FOR THE FIRST TIME. What was most thrilling was that he was playing with it like a typical kid when given a new toy — CP and all. I had never seen that before. I was speechless and my mind exploded. If it had not been for that one place with that amazing ophthalmologist who happened to adopt Roman-Lantzy’s methodology and meeting that one nurse and the little boy with CVI, our lives would have been so different. I would have been one of those parents vulnerable to the pernicious influence of the system’s systematic lowering of expectations for my child’s ability to learn and thrive.
By the way, the name of that nurse was “Angel.”
What should have been obvious to all those experts early in his life was that he exhibited classic visual behaviors of CVI Phase I (at the time he scored 2.0-2.5 on the Roman-Lantzy scale):
- He loved rocking on his rocking bug (movement) watching the front loader washing machine (more movement).
- He loved playing with any toy that spins (movement).
- He loved watching ceiling fans and would obsessively ask me to turn them on!
- When asked to stack a block or put a ring on a pole, he would turn his head away while reaching (lack of visually guided reach).
- He would not explore toys, look at pictures, grab items placed in front of him (unless they were moving). He would instead turn his head to the side and then up and away. (Teachers: “Stephen is just not interested.”) If I had a nickel. ...
- He could find a cheddar bunny on any complex surface within arm’s reach. (Teachers: “He can see just fine. He's just stubborn.”). Visual pathway for his favorite food was established, which means he can see just fine, right?
- When being pushed in his wheelchair in the hallway, he would say “doggie” if he saw a picture of a dog on a poster (teachers: “Nothing wrong with his vision!”) — classic visual behavior of seeing better while moving. Once stopped, the world returns to a kaleidoscope.
- When working on learning concepts, he would easily pick out the correct item from an array placed on a beige carpet when at home. He would not choose anything when the teacher put choices (2D pictures) in front of her face. (Teachers: “He just does not show me what you ‘say he can do at home’ in school.”)
- He showed interest in only a very few toys. The slinky was his favorite (and still is).
- He hated going to kids’ concerts, zoos and new places (Little did I know I was terrorizing my child taking him to a Sesame Street Elmo & Friends show. He screamed until we left.)
- He was fascinated about holding a hose and watching the water come out (movement).
- He exhibited “textbook” signs of severe stress that went unnoticed and dismissed as “disruptive” when he was constantly expected to respond to visual cues, squealing, reflexive laughing and falling asleep.
After this first assessment, I approached my area pediatric ophthalmologist and got a diagnosis of CVI and happily gave it to his school’s early intervention team. At four years old, he was diagnosed and within eight months with his preschool intervention program, he made huge improvements and scored at 5.0-5.5 Phase II.
I must give a shout out to Stephen’s pediatric ophthalmologist who serves southeast Georgia. In the past few years, he has become a local champion for our state public health early intervention program in getting children identified/diagnosed and connected to recent CVI-endorsed TVIs for children 0-3 years.
Then Stephen entered kindergarten. After seven years of trying to be a collaborative individualized education program (IEP) team member, constantly teaching the new teacher or paraprofessional about the diagnosis, spending thousands of dollars flying to different places to get reports from leading CVI experts to help my son’s school team members adapt materials and providing visual supports so he could access the academic material, I realized, after being hopeful and trusting for many years, it was a losing battle. The system he was in would not budge for CVI kids.
What always kept me going during this time was knowing and seeing what my son could do, how he brightened, how quickly he became engaged, how incredibly motivated and desperate he was to learn when working with a CVI expert. It was amazing to see the transformation, almost instantaneous. Because I have seen it and that knowledge and experience is how I stay strong and keep insisting on educators learning to do it right, advocating for change and pushing for greater competence. I am a parent who can no longer be gaslighted.
I believe, as others have said, you must become your child’s CVI expert. I have a litmus test that I use for my son’s teachers, therapists, etc. If they pull out a picture or start using abstract images from the Picture Exchange Communication System (PECS) for augmentative and alternative communication (AAC) for “disabled kids,” I know that person may have an idea of what CVI is, but they obviously lack a fundamental understanding of CVI. Pictures are the most difficult for our CVI kids and it causes my son enormous stress. The methodology that works to help kids with CVI is so counterintuitive to how therapists and teachers have been trained that it takes a tremendous amount of discipline, education and competent peer support to expand training and build expertise. The best practitioners, in my experience, un-learn, and then re-learn.
CVI, in my shorthand, is all about edges and targets. Keep insisting, keep learning, keep asking questions and know your stuff. Do not be afraid to ask what CVI best practice is being implemented with your child, what your child’s CVI schedule is, how often they are scored to make sure a Phase II kid is not working with supports in Phase I so they can be pushed to the next level, so the child’s vision improves. Yes, the vision improves. ...
At this moment, finally, my son has been placed in a small gem of a school that is building advanced competencies in CVI and services for children with multiple disabilities and complex communication needs. He is doing well. After a year of attending his new school, he advanced on the CVI range from 5.0-5.5 to 6.0-6.5 on the range. He had not advanced on the range the previous seven years.
The lack of early, appropriate support to help improve vision when it would have made the most difference for my son, which limited the reach of his potential, still haunts me. Typical mommy-guilt and deep regret for not having tried harder when it counted. Does that sound familiar?
We all need to support and encourage educators, medical providers and other professionals to understand CVI, and then teach and support our children. Some professionals become wildly interested in CVI and neurological sources of visual impairment, and I have to say, they are not necessarily TVIs. Encourage and invest in those people.
And for us parents, let’s support each other because as most of you know by now, we are mostly on our own until the world catches up. It is getting better little by little, and I have to be thankful for that.
Eva Joseph is the mother of 12-year old Stephen. Eva works in non-profit management and lives in southeast Georgia with her husband, Karl.
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