In Henry’s case, it causes cerebral/cortical visual impairment , or CVI, a brain-based visual disorder, meaning the eyes are healthy but the brain can’t process what they see. Besides genetic conditions, causes for CVI can include infection and head injuries that usually “happen before, during, or shortly after birth,” according to The National Eye Institute. CVI manifests differently in every child, but its biggest hallmark is trouble with visual recognition, as well as extreme fatigue, migraines, and mobility and learning difficulties. It’s also severely under-diagnosed because its symptoms mimic more common conditions, such as dyslexia, autism, or attention-deficit hyperactivity disorder. Research suggests more than 180,000 young people under age 22 could have it, but just 20 percent have a diagnosis. Experts call CVI “ a hidden epidemic .” Today, Bennett is director of CVI Now and parent advocacy and support at Perkins School for the Blind in Watertown. (Disclosure: I have worked as a freelance writer for Perkins.) But 12 years ago, she’d never heard of CVI. She was a special education teacher, pregnant and hoping, like any mom, that her child would be healthy. Bennett had an unremarkable pregnancy. However, almost immediately after Henry was born in 2012, joy gave way to concern. “He wasn’t feeding right away. He didn’t latch. He was very floppy and wrinkly,” Bennett recalls. “I was a new parent, and I had no idea.” Henry underwent head X-rays at the hospital, and nothing unusual was found. At home in Maryland, where they lived at the time, though, he continued to struggle for months. His eyes began to shake up and down. He couldn’t hold his head up. “We kept going to the pediatrician’s office,” Bennett says. And they kept coming home with few answers. Fortunately, Bennett and her husband, Carson, lived near Washington, D.C., and were able to get appointments at The National Eye Institute , part of the National Institutes of Health. They discovered there were structural problems with Henry’s eyes, but those didn’t explain why he was not sleeping and in the zero percentile for weight. As the months passed, Henry missed developmental milestones. He couldn’t walk until he was 26 months old. He couldn’t speak until age 3½. Bennett needed answers. The family’s insurance plan covered whole exome sequencing, a comprehensive type of genetic testing that seeks to identify a cause for developmental delays and other symptoms. The test uncovered that Henry carried a variant of the ASTN1 gene, a spontaneous mutation that wasn’t inherited. The gene is responsible for neuron migration during fetal brain development, and associated with conditions such as autism and epilepsy. But this wasn’t a diagnosis; it was just a start. Bennett didn’t know what Henry was experiencing, and couldn’t put words to what she was feeling, either. “I probably couldn’t name it then, but I can now: I felt massive amounts of grief,” she says. “I was grieving the loss of any expectations that I had as a mother, as a parent, the loss of any type of expected parenting journey.” Instead of enjoying new motherhood, she was constantly groping for diagnoses and hoping Henry would somehow turn a corner. She sat with a dull pit of sadness, loneliness, and guilt. “There’s no narrative of raising kids with disabilities, even though there are tens of millions of us,” she recalls. “Why me? Every time we went to the playground, I couldn’t be that parent who could just sit back and watch their kid play. ... I felt like there was something wrong with me. I felt like I did this to him, like I did something wrong.” Henry grew older and suffered more: He was a gentle child but easily rattled. He screamed, kicked, pulled hair. He couldn’t look at toys. He wasn’t interested in watching videos. He didn’t smile at his parents or make eye contact. The Bennetts pressed for a diagnosis, but a pediatric ophthalmologist told them not to worry: Henry would eventually catch up. Bennett wanted so badly to believe that this was true, though soon enough, she’d discover that even doctors can be wrong. “I have never forgiven myself for believing this doctor, for letting her dismiss Henry,” she says now. Things improved when Henry began at a public special ed preschool in Maryland, where a teacher finally recognized that he was different from other kids — for one of the first times, someone was validating the Bennetts’ concerns. “She kept saying: ‘He’s not using vision like other kids in the classroom. He’s not able to find his picture on the board. He’s not able to use vision during even simple tasks and routines,’” Bennett recalls. At an IEP meeting with a team of special educators, when Henry was 5½, Bennett finally heard the term CVI. They gave her a report and urged her to take it to an ophthalmologist. Henry “had every single behavior. He was textbook,” Bennett says. “It gave us the why behind what he was doing: Henry was trying to survive in an inaccessible world.” Finally armed with a diagnosis, after searching for Henry’s entire life, Bennett began to find her way to a network of CVI families. It helped, but her resentment — over the platitudes from doctors and the lost time — simmered. “I got really angry. How was this missed?” she says. “I had to learn early on that I had to be the one to know the questions to ask and what to do next, even though I had no idea.” The Bennett family moved to Newton to be closer to relatives, as well as inclusive schools and excellent health care, and the advocacy ramped up: Henry, then in first grade, required extensive IEP support to attend public school: orientation and mobility accommodations, adapted learning materials, and more. Parents with a child with extensive special needs often face two options, both of them costly. “Either pay for a lawyer [to push for an out-of-district placement] or pay to live in an expensive place, which is the decision that we have to make in this system,” she says. “I’m fully aware of my privilege to have resources and to speak English, and we still have barriers.” Henry has a good school system, involved parents, and IEP support. It still feels like not enough. Sometimes, Henry has trying days. He frequently vomits due to migraines and needs to be retrieved from school. He tires easily. He has kyphosis, a spinal deformity, necessitating a back brace, and has braces for his ankles. At Franciscan Children’s, he was diagnosed with central auditory processing disorder, adding to the ongoing complexity of his CVI diagnosis, which is managed in tandem with Boston Children’s Hospital. As classroom challenges persisted, he was diagnosed with autism. Henry is now in middle school, not an easy time for any kid, and the stakes feel higher. “Even with high support, even with CVI accommodations, learning is still hard, access is still hard, attention is still difficult,” Bennett says. “He’s just highly dysregulated and irritable, and we also know that he’s just in a lot of pain.” The pain extends to their family. Bennett and her husband work full time — and they’re also full-time champions for their son, constantly researching and advocating for the best possible care. Henry’s little sister, Clara, sometimes wishes she had a healthy big brother. Bennett — despite her background as an educator — often feels sapped and unsure of what to focus on next. But amid all the chaos, there are unshakeable truths: She loves Henry, and he loves her. He’s an amazing son and an incredible brother. She wants him to enjoy life the way his classmates and his sister do. “I want him to live a life of joy and purpose and belonging,” she says. So that’s what she works toward, whether negotiating with school, pushing for a new diagnosis, or helping friends and family understand Henry’s behavior. “It’s the most heartbreaking thing I have to do,” she says. “I both have to see my child suffer, and I have to show that he’s worthy of all of the support to thrive.” The world isn’t set up to support a kid like him, or a parent like her, or any family with a rare disease. Bennett has been inspired by all the parents she’s met in rare-disease communities, people on the front lines impacting research, awareness, and education. From them, she’s also learned to practice taking care of herself. And so she goes to therapy. She wakes up at dawn to exercise. She hopes other parents can find ways to take care of themselves when possible. And Bennett tries to remember to relax — even though it’s hard, sometimes — and to simply be a mom to a kid with a great sense of humor, and who loves riding the MBTA, calling out the name of every stop by memory. “It’s taken me a long time to realize that it’s OK if I’m just his mom. I’m not his OT [or his] PT,” she says. “It’s OK that I just create a space at home for him where it’s a sanctuary, and he can be however he wants to be.”
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