At 30 weeks gestation, my husband and I received a diagnosis with no clear path to how this difference would impact or manifest in our baby’s life.
We held our breath for the better part of two years with the constant worry that something could, would, might go wrong. But, for the most part, we enjoyed a happy, healthy little guy who had a few additional doctor appointments and tests here and there.
As our son Nolan grew and began to walk, we noticed some differences: He was more clumsy than other kids, tended to cling a little closer, and he startled more than others. Then shortly after his second birthday, Nolan woke up with his eyes crossed and wandering. We were scared. What was happening? Had we missed something? Had he experienced a neurological event?
After a trip to the ophthalmologist, Nolan was diagnosed with strabismus and amblyopia. I still remember the reaction the first time he wore his glasses—As if he saw the world for the first time.
But I still had a feeling something was wrong. Nolan panicked in new environments, he continued to be more clumsy than other kids, and he bumped into people and stayed close. There was a major meltdown after we rearranged the furniture in our home. He could not differentiate between black and brown. He struggled going up and down the steps. He could not identify me in a crowd or when I arrived somewhere unexpectedly. Once, I surprised him at preschool and he did not recognize me. Me! His Mom. He didn’t expect me and it took what felt like an eternity for him to realize who I was. The glasses weren’t enough.
I called early intervention and advocated for him to get a vision evaluation. In our state of Pennsylvania, parents and caregivers can call early intervention and self-refer for children from birth to 3 years old. If a parent or guardian suspects an issue with a child’s development, they can request an evaluation for the area of concern. Nolan was able to obtain a functional vision assessment and orientation and mobility (O&M) evaluation from Overbrook School for the Blind. Through these evaluations, he qualified for a TVI (Teacher of Students with Visual Impairments) and O&M consultation.
Even with the added vision support, however, something wasn’t adding up. Physical therapy wasn’t making him safer on the steps. The glasses weren’t enough.
One day, we went out to a family meal. We sat at a wooden table on hardwood floors, and our guy fell out of the booth three times. This was the day I decided glasses DEFINITELY weren’t enough. Something else was wrong. Despite what others were saying, Nolan wasn’t misbehaving or goofing around. He wasn’t intentionally bumping into kids at school. He couldn’t see and I wasn’t going to stop until we figured out why.
I brought up my observations and concerns to Nolan’s ophthalmologist and was brushed off. I remember asking, “Could he be color blind?” I didn’t know what was happening, but I knew something was wrong. I kept at it. I continued to make appointments and we saw every specialist.
Meanwhile, at 3 years old, Nolan continued to struggle to develop language despite having a considerable amount of school-based and clinical speech therapy. There were also times when I could not get my child’s attention. I know all parents and caregivers have those times, but this was much more—so much so that I feared he was experiencing absence seizures.
We followed up with a neurologist and seizures were ruled out.
Shortly after that, I was sitting in a doctor’s waiting room with a case of pink eye. The television was playing a video about aphasia, a disorder that results from damage to portions of the brain that are responsible for language expression and comprehension.
I remember saying to myself, “This is it.”
I wrote down the name of the doctor cited at the end of the video and later contacted them. They said aphasia was unlikely in Nolan’s case because he never had a stroke. But I started to research and talk with friends. I will never forget the email I received on February 6, 2020, from my reading specialist friend, Dr. Jessica Jefferis, about Auditory Processing Disorder. This was my “a-ha” moment. When I asked his speech therapist, Ms. Mallory Clair, she said she wasn’t very familiar with Auditory Processing Disorder but that she would look into it. She got back to me within hours and wrote, “This describes so much of what I see in our sessions!” (CAPD, or central auditory processing disorder, is not diagnosed or supported until a person is 7+ years old. My child’s SLP worked in birth-Kindergarten.)
So I started making appointments with specialists. Nolan had been followed by a local children’s hospital for speech, but I wanted to discuss the possibility of APD. I have never been so grateful for pink eye.
We were scheduled to see pediatric ophthalmologist Dr. Sharon Lehman at Nemours when, in March of 2020, the world shut down.
In the tragedy of a global pandemic, as other kids struggled with virtual learning, our guy flourished.
Learning changed when a backlight screen was between Nolan and his teachers. He seemed to be able to focus better when he had on headphones. His behavior and demeanor changed—he began to blossom.
One day, during a virtual session, his TVI asked, “Have you ever heard of CVI?” I hadn’t. But this was the day that I started better understanding what I had been observing for all these years.
I used the early days of the pandemic to learn about Cerebral/Cortical Visual Impairment or CVI. To figure out what it was, who the experts were, and what Nolan needed.
I remember the first time I read about the 10 characteristics of CVI—THIS WAS MY KID! The list might as well have been written to describe him. He loves the color red. He needs movement to help him look. It takes him time to respond visually. He has an overreaction to high-sensory environments. And he has a visual field preference.
During quarantine, my child’s TVI began approaching him as if he had CVI. Suddenly, it clicked. After using Roman Bubble Letters outlined in his favorite color, red, Nolan was able to do the alphabet for the first time. A slant board, along with reducing visual clutter, helped his writing. Throughout quarantine and virtual learning, my child’s incredible TVI began making homemade video games using Nolan’s favorite characters and Roman Bubble Letters to keep him engaged and learning.
I continued to read and research. I called Nemours every day until I was able to get him seen by Dr. Lehman.
Four years after getting glasses, he was diagnosed with CVI by Dr. Lehman.
Next, we headed to Pittsburgh and met with Christine Roman-Lanzy, Ph.D. for a CVI assessment. We learned that he was in low Phase II, which means he is beginning to integrate vision functionally to help make sense of the world around him.
Armed with this knowledge, I continued to advocate for my child’s educational needs. I worked with his school-based team to build a CVI-focused Individualized Education Program (IEP), having his TVI guide much of the development of his specially designed instruction that appropriately supports his unique vision needs.
Some examples of supports included in Nolan’s IEP:
In addition to his TVI, Nolan works with a speech therapist, physical therapist, and occupational therapists. OT is extremely important as they focus on sensory needs, fine motor skills, body awareness, saccades, and visual pursuits, which are essential skills of visual processing that occupational therapists support. His orientation and mobility (O&M) specialist focuses on safely navigating the world. PT collaborates with O&M to ensure an approach to physical therapy that is supportive of his visual needs.
Through my advocacy, I have developed a collaborative, team-based approach. Nolan’s team works together to consistently support his educational needs. In addition to his special education and general education teachers, a key member of this team is the classroom assistant. Based on the Perkins Model of accessibility through consistency I have advocated for this individual to be part of the collaboration, trained by the special education teacher and other specialists, and participate in professional development and training through Perkins School for the Blind to ensure consistency throughout Nolan’s day.
Later, in Nolan’s CVI diagnosis journey, I attended the Perkins CVI: Collaboration for Change Conference, where I met Dr. Merabet, and our guy is now enrolled in his study.
It isn’t easy. I constantly have to advocate for my child. There’s a lack of general understanding of the blindness spectrum, and an understanding of how Nolan’s vision fluctuates throughout the school day, how his visual fatigue is real, and how breaks are very necessary.
But what about speech? We saw local specialists and didn’t get any answers.
As I looked over the session guide, I saw one that stuck out.
“Strategies for Supporting the Hearing, Speech Comprehension, and Environmental Awareness of Students Who May Have Central Auditory Processing Disorder (CAPD)” with Nicole Laffan, Au.D., CCC-A/SLP.
There it was—Auditory Processing Disorder—from the emails from years ago. Within the first slide, I knew my suspicions all these years were accurate. I approached Dr. Nicole Laffan after her presentation, and she provided me with her contact information. I immediately scheduled an appointment and returned to Boston with my son.
Dr. Laffan’s evaluation answered all the questions that kept us up at night for so long and changed the trajectory of our son’s life.
Nolan is now a patient of Dr. Reigner, AuD at Nemours and is academically supported by Dr. Jessica Loson of the Children’s Hearing Center who trialed and fitted our guy with the appropriate FM system, and added additional Special Designed Instruction (SDI)s to support his auditory processing appropriately.
Hearing SDIs included in Nolan’s IEP:
There should be more knowledge about the leading cause of childhood blindness. There should be more focus on what impacts so many—but Cerebral/Cortical Visual Impairment is still misunderstood and underdiagnosed. If it wasn’t for my persistent advocacy and pursuit of answers, what would have been my child’s future? There are so many with CVI without appropriate diagnosis or adequate support.
That’s why I do my bit—to raise the alarm and advocate for awareness. I spend my time educating, informing, and advocating. Whether it’s explaining my son’s unique needs to his teachers, school staff, and administrators; advocating with local and federal officials for increased special education funding; or teaching the next generation of teachers—general education teachers—how to implement Universal Design for Learning and make inclusive learning environments for all learners. And I write with the hope that sharing our CVI story will help other families. We know it shouldn’t be this hard, but the more folks who know about CVI, the better our future will be.
While I am the advocate. Nolan’s Dad, Pete, is the driver in this journey. Our entire family took the trip out to Pittsburgh to meet with Dr. Roman. Along the way, I said, “I would drive to the ends of the Earth for my kids.” Our middle child corrected me– “No! Dad would. He is literally the driver.” And it’s true. We are a team in all that we do to support our kids.
For Nolan, a knowledgeable TVI and a strength-focused approach, have proven to be invaluable to our child. With appropriate support, our guy is thriving and making progress each and every day.
Let me say it again: The key to my child’s success is a knowledgeable TVI—something our education system desperately needs. I’ll forever be grateful for the TVI, Karen Whitaker, who said, “Have you ever heard of CVI?” Those six words changed our son’s life.
With the support of a knowledgeable TVI, Nolan is no longer reliant on Roman Bubble letters. Ms. Karen completed a written print evaluation starting with the AIM Explorer app as a jumping-off point and then pulled different materials and researched fonts that were better for individuals with vision difficulties. Through this assessment, he has moved to using Lexend font.
Through my tireless advocacy and persistence, Nolan began receiving instruction in The Wilson Reading Program. This multisensory structured literacy program has proven to be invaluable to Nolan’s accessing literacy. He is no longer reliant on yellow paper, and he is advocating for his own needs. He utilizes notability on his IPAD to adapt worksheets, goes between white and yellow paper, and determines when he needs to use his slant board depending on his level of fatigue.
At home, we have a saying, “Different is not bad… it’s just different.” We acknowledge the individuality and unique needs of each member of our household, and when something comes up that our guy struggles with—we utilize a strengths-focused approach.
In a twist of fate, I wrote my dissertation on skills development through the lens of appreciative inquiry when Nolan was a young toddler. I have found success in utilizing this, collaborative, strength-focused approach in supporting his individual needs.
A strength-focused approach focuses on what folks do well and builds upon that rather than focusing on weaknesses or areas that need growth.
Through this approach, we continue to discover Nolan’s interests, passions, and strengths. We choose to embrace his interests and passions in supporting his needs. Whether it is the color red, video games, Legos, drawing, ceramics, science experiments, or water squirters, we find a way to make the things he enjoys into games to assist in developing the skills he struggles to master.
Today, our guy rides a two-wheel bike, can build Legos unassisted, hops around on a pogo stick, enjoys participating in Blind Sports Organization programs, plays video games with a controller (using both hands in unison), and passed the deep water test at the public pool. He also reads books to his little brother and sisters at bedtime.
The other keys to Nolan’s success? An IEP that supports his unique needs, including utilizing assistive tech, coupled with my constant advocacy.
I realize I can not prepare my child for every situation, but I have advocated hard to develop an education and home life for Nolan that fosters independence through the development of compensatory skills and strategies. My advocacy ensures that he has the skills necessary to navigate whatever situation he might encounter. This approach was inspired by a John Dewey quote, “It is impossible to prepare the child for any precise set of conditions. To prepare him for the future life means to give him command of himself.” (Dewey, 1897)
I do not do things for my child. I provide him with the support necessary for him to acquire the skills for him to navigate his world. This takes a considerable amount of creativity and patience, but the effort is worth the outcome.
In our home, we have implemented all the suggestions that Overbrook School for the Blind gave us when he was first supported by them, including increased lighting, reflective tape to create high contrast, and reduced visual clutter in our living spaces. We went as far as limiting the patterns of our area rugs. We try to organize our home in a manner that supports Nolan’s needs. We have routines and use storage bins and hooks to keep his things organized. Nolan is the oldest of 3 and takes his big brother’s job very seriously. He assists his siblings in learning routines and the importance of putting items away so they don’t become a trip hazard later on.
In our home, we have no screen time limits. I know it’s shocking, but screens and his iPad aren’t just fun—they are assistive tech that helps Nolan to acquire skills to navigate the world. When playing video games on the laptop, Nolan is able to set up a reader that dictates the information on the screen. He also utilizes talk-to-text if he is struggling to spell a word, and uses Notability to adjust text on his own. His tech abilities and creativity amaze us! His current hobby is creating Lego stop-action short films.
With that said, we spend a considerable amount of our time outside and exploring our world. Experiential and tactical learning has always been important to us. My husband and I developed a variety of activities in our yard, including a mud kitchen and water table. We also visit museums, cultural centers, and kid activity spaces. Nolan uses the tactile skills he has learned with his O&M when we visit new places. He familiarizes himself with a braille map when one is available and checks out the website ahead of time.
But, most importantly, Nolan advocates for his own individual needs—and we listen to him. We center Nolan in all that we do. Working to remove barriers and appropriately supporting him along the way.
Through consistent implementation of his SDIs, and his ever-growing compensatory skills and strategies, Nolan is able to do many of the things someone along the way told us would be impossible. As the poster on Dr. Merabet’s wall says, “Impossible is nothing.” -Muhammad Ali
There is no magic solution, no quick fix, or pill. It takes consistency, persistence, and creative innovation, but when I see Nolan learning, growing, and succeeding, I know that the reward is worth the effort.
Learn more about the CVI visual behaviors and examples of CVI accommodations from the CVI Now IEP Guide.
In addition to being Nolan’s (Emilie and Wilden’s) Mom and advocate, Dr. Karalyn McGrorty Derstine is a professor of Education and American Studies in Suburban Philadelphia. Her teaching focuses on teaching and learning, inequity, and inequality in Education and Public Health. She has used her experiences to create a course in Health and US Diversity. The course, taught at Thomas Jefferson University, explores significant historical and contemporary issues as they relate to disparity and issues of social justice in public health and medicine in the United States.