Article
Speaking of the brain
Kira shares insights into raising her son with CVI and other disabilities and offers a new way to talk about pediatric brain injury: the rainbow super-highway.
My son is a brain injury survivor. When a child is born with a brain injury, or incurs that injury shortly after birth, the child must work to regain function of a hand, fingers, an arm, a leg, an entire half of their body — at the very same time the child discovers that he even has hands. There is no former self to measure against; no baseline to compare to, no prior level of functioning. There is no “before” the brain injury, because the entirety of the child’s existence is “after.” Can it be “after,” if there isn’t anything before? How could his hands have moved, before? What did his crooked smile look like, before? Could he recognize his own mother’s face, before?
The most brilliant part of parenting a child with a brain injury is that nobody can tell you what your child will be capable of, in a lifetime of “after.” Neuroplasticity says, “The sky is the limit!” I feel the joy of one hundred Christmas mornings each time my child achieves an utterly average milestone. I stare at him and study him because his every movement feels miraculous. And yet, the most difficult part of parenting a child with a brain injury is that nobody can tell you what your child will be capable of.
I feel the joy of one hundred Christmas mornings each time my child achieves an utterly average milestone. I stare at him and study him because his every movement feels miraculous. And yet, the most difficult part of parenting a child with a brain injury is that nobody can tell you what your child will be capable of.
Mason was diagnosed with periventricular leukomalacia (PVL) at fourteen months old. As a male twin born prematurely to a mother with preeclampsia, Mason had many risk factors for PVL, but it was not until he began showing high muscle tone and delayed motor skills that our pediatrician referred us to a neurologist. The initial diagnostic MRI showed moderate damage throughout the white matter of his brain; the injury was significant enough to also damage his corpus callosum. Diagnoses of mild spastic diplegic cerebral palsy and epilepsy followed soon after. CVI was not on our radar until Mason became mobile and began walking over toys and into walls and doorframes. Dr. Kran confirmed the CVI diagnosis at the Low Vision Clinic at Perkins when Mason was three and a half. Today, Mason is finishing first grade in a general education classroom where he is thriving thanks to fantastic teachers, therapists, and support staff. He loves Legos, animals, and playing on his iPad. When his brain injury was first identified, I couldn’t have imagined the rich life Mason lives now. The damage to my sweet baby boy’s brain sounded catastrophic.
Our neurologist described the worst areas of injury, at the posterior edges of the lateral ventricles of his brain, as footprints in a mud puddle. The ventricles are filled with cerebrospinal fluid, as a mud puddle is filled with water. When you step at the edge of the puddle, your foot makes an imprint. As soon as you lift your foot, the deepest parts of the footprint fill with water and are swallowed into the puddle. In this scenario, your foot is the relatively unknown and ever malicious agent of injury, the water is cerebrospinal fluid, and the mud is my child’s brain matter, damaged past the point of recovery and sinking away into the murky depths of a vague ventricular puddle.
I have replayed these images again and again in my own mind; they haunt me. The ridged imprint of my boots in the mud is gathered like so many gyri on the surface of our brains, both melting away in an early spring rain. As the mother of a brain injury survivor, each and every mud puddle brings a tiny heartbreak, no matter how many Aprils I muck through. Puddles are commonplace, predictable, and simple — pediatric brain injuries are none of these.
When Mason is really struggling, he can be grumpy and clumsy, and he may not remember even the most familiar concepts. When he was four, a therapist blamed these more difficult moments on “swiss cheese brain.” “Sometimes,” she said, “the message moves smoothly through cheese… and sometimes it hits a hole.” Let us set aside the fact that someone compared my child’s gorgeous brain to a brined lump of dairy; let’s run with this metaphor, just for a moment. Now seven years old, my son can solve simple addition problems without counting on his fingers. He can run on sand at the beach, build his own fabulous LEGO scenarios, and dictate creative, elaborate stories during writing time in class. This year he learned to identify every letter of the alphabet, as well as the letter sounds. Straight cheese, baby! There are also times when he can’t remember his best friend’s name, can’t remember how to get to the bathroom in his own home, or is too tired to walk even one block. Sometimes his words hover just out of reach, like day-old balloons wobbling along the ceiling. These must be the alleged “holes.”
Look. The human brain, of course, is infinitely more complex than cheese. Messages can get lost in the vast neural network of the brain, but to blame errors and difficulty on “holes” is an oversimplification. This oversimplification is a problem because it ignores the many complicated reasons my son might be struggling. If we fail to recognize the causes of a particular struggle, then we cannot properly support him. To say that his brain has holes is both dismissive and lazy — because it implies that there are no solutions. We cannot repair the holes in swiss cheese, and we would not bother to waste our energy trying. We absolutely can, however, support children with brain injuries in ways that maximize their brains’ potential for healing, reorganization, and happiness.
This oversimplification is a problem because it ignores the many complicated reasons my son might be struggling. If we fail to recognize the causes of a particular struggle, then we cannot properly support him.
I’d like to offer a new metaphor for pediatric brain injury: the rainbow super-highway. Here’s how I wish our neurologist spoke about my child’s brain injury, when it was first diagnosed —
“Your son has a brain injury. The injury impacts many areas of the brain, including locations connected to vision, motor control, and speech. Some areas of that injury may heal, and some may not. Even though some areas may not heal, other areas will likely “step up” and take on new or additional roles. If a typical brain is an orderly and efficient autobahn, then your son’s brain is a rainbow super-highway. There are fast lanes, and slower lanes, U-turns and cloverleaf junctions. His path will shoot sky-high across majestic drawbridges and then plunge underwater through mysterious tunnels. The frontage road may need to serve as an all-access path, and this bright, stunning super-highway will always be under construction. (All of our brains are always under construction!) I can’t tell you where your child’s path will lead, but I can guarantee that it will be a beautiful journey.”
I love that this rainbow super-highway fits well with the existing symbol for neurodiversity; the rainbow mobius strip already resembles a colorful raceway. When we use this super-highway framework to talk about a child who has a brain injury, we can remove sweeping qualifiers like “bad day,” and instead focus on real obstacles the child is facing in that particular moment. When the child is struggling, it isn’t helpful to place the blame on irreparable “holes.” Drivers regularly adjust speed or change course in response to construction, weather conditions, and other obstacles. We should similarly work to understand what outside forces might be slowing the flow of traffic for our children. In other words, how can we better create access for this child, in this moment?
When we use this rainbow super-highway framework to talk about a child who has a brain injury, we can remove sweeping qualifiers like “bad day,” and instead focus on real obstacles the child is facing in that particular moment.
When a neurodiverse child is struggling, we must frame that struggle in terms of obstacles and access, rather than an inherit defect or deficit. For children who have brain-based visual impairments, the visual behaviors of CVI can guide us in preparing an accessible environment and accessible materials, and can help us find solutions on the tougher days.
Mason had a stellar school year, but it has not been without obstacles. At the beginning of the year, he had a lot of anxiety around navigating to his classroom in the morning. Though he walks with his twin brother, who is neurotypical, Mason was still having daily meltdowns over this part of his day. Novelty plays a role here, as this was his first year in a new school building. Complexity also plays a role, since the halls are busy and loud at this time of day [difficulty with clutter, sensory integration and motion processing]. The solution was for Mason’s TA to meet him at the front door each day and walk him to his classroom. As he learned the route and became more comfortable, she began waiting just inside the school’s front door, and then further into the vestibule and hallway, until she was able to simply greet him at the classroom. By the end of the school year, Mason could navigate most of his school independently.
In terms of academic obstacles, letters and letter sounds have been incredibly challenging for Mason to master. At age six, neuropsychological testing showed that Mason has severe dyslexia and dysgraphia. We’ve learned that his language and reading disabilities now impact him more profoundly than his CVI. With intentional, explicit instruction designed for students with dyslexia, Mason has made huge gains during this school year. Though the Wilson Reading System naturally supports many learners who have CVI because it is explicit, scaffolded, and multi-sensory, Mason’s special education teacher and TVI work together to adapt the program to best fit his needs. For example, when the special education teacher uses Elkonin boxes to practice segmenting words, the Elkonin boxes are placed on a lightboard, and Mason uses colored transparent chips to represent each sound. Mason’s TVI works with him on higher-level visual tasks such as learning to scan from left to right, recognizing letters across various fonts, and discriminating letters and words by their shape and size characteristics.
I know that Mason is incredibly lucky to have a team that cares deeply for him. His current teachers and therapists see his intelligence and potential, not the “holes.” On a journey filled with multiple diagnoses, seemingly incessant low scores, and flippant characterizations of your child’s ability, it can be really difficult to stay positive. It is essential that parents of neurodiverse children be surrounded by people who will ride the rainbow super-highway with them, and love the ride. My son’s success relies on support from a team of loved ones and providers who embrace neuroplasticity and expect growth. We must see rainbows where others see mud, and we must believe in neurodiverse brains because they are resilient, complex, and beautiful.
We must see rainbows where others see mud, and we must believe in neurodiverse brains because they are resilient, complex, and beautiful.
Kira Brady is a parent to her brilliant son, Mason, who is beautifully neurodiverse. She’s an incredible writer and storyteller sharing her and Mason’s experiences of living with CVI and other disabilities. Kira holds a BA dual degree in Women’s Studies and Creative Writing, a Masters in English Language and Literature, and is an adjunct professor who teaches composition and research for the School of Liberal Arts, Sciences, and Society at SUNY Morrisville.
