When your newborn has multiple, complex diagnoses, how do you know what to prioritize? That was the first challenge that Isaac Elliott and his wife Sharon faced when their first son, Emmett, was born fourteen years ago in Vancouver, WA.
After birth, Emmett encountered several challenges, including epilepsy and low muscle tone, that impacted his ability to thrive and access his environment. An explanation would not come until Emmett reached 11 through a full genome sequence, identifying a rare change in the PPP2R5C gene, currently being researched by the Jordan’s syndrome team. Isaac explains, “Emmett’s genetic disease impacts many aspects of his life. Typical presentations include epilepsy, hypotonia, self injury—It’s something that other Jordan’s syndrome diagnoses include. He has mobility challenges.”
When Emmett was 4 years old, he was diagnosed with CVI (Cerebral/Cortical Visual Impairment). Before Emmett’s CVI diagnosis, Isaac says he “started noticing [Emmett] would be kind of content to just sit there, and wouldn’t really focus on things, especially at a distance.” Despite this observation, the focus was elsewhere, for understandable reasons. Emmett “ended up being in the hospital for seizures and related challenges early on,” Isaac says. He shares that it was a “challenge to figure out all of the areas that we wanted to focus on. We came up with a hierarchy, with seizure control at the top. When Emmett would have seizures, he would lose some of the skills, and awareness, that he had developed, including accessing his visual environment.” On top of the pressure of being first-time parents, Isaac and Sharon were dealing with some serious diagnoses, and juggling what to prioritize in order to keep Emmett safe and healthy.
“It’s almost chance that we got support for CVI,” Isaac says. The person who caught Emmett’s CVI was “a preschool teacher who was familiar with CVI, and she’s the one who ended up connecting us with the larger CVI community.”
This phenomenon is not uncommon—CVI is a hidden epidemic. Less than 20% of children with CVI have been diagnosed with this leading cause of childhood blindness and low vision, according to new research conducted by Perkins School for the Blind with analysis from McKinsey & Company.
Just like with Emmett’s other diagnoses, “getting an idea of what’s going on—what is causing a behavior or is making something more challenging for him—has always been a relief,” Isaac says of receiving the official diagnosis of CVI. He continues, “I definitely remember being excited to know what it was. But at the time, and even still, I don’t understand CVI as well as I would like… I understand concepts like describing visual attributes and the need to reduce cluttered backgrounds, but it’s a journey. It’s always learning and always adapting and improving.”
The couple’s learning journey has been mainly driven by Sharon, who has a master’s degree in special education. According to Isaac, she “coordinates and has both the professional and the working knowledge… So in terms of the overall plan, she’s the subject matter expert.”
After a recent move to Omaha, NE, Isaac says his main role in coordinating Emmett’s care is knowing how to make things happen when circumstances are tough, like, for example, in meetings with Emmett’s various medical and educational teams.
Isaac also describes the early days of even getting Emmett’s team to consider CVI, which can manifest in a variety of visual behaviors, in his son’s other adaptations and instruction: “It seemed like we were fighting an uphill battle, to a certain extent, in convincing people that CVI needed to be included and how it needed to be included in his adaptations—Black backgrounds, decluttering, all the standard things. It’s gotten easier over time. Part of that is a growing understanding of how CVI works, what you can do with it, as well as potentially finding the right people and the right team.”
Deciding which visual challenges to prioritize and adaptations to try out is a difficult task for any parent. “It’s hard to know upfront what things are going to be the most effective in getting him access to his visual environment,” Isaac says. His advice is to “really double down” if you’re going to try something new. “Give a lot of energy to see what’s going to work initially—Just so you know. Over time, with dealing with epilepsy and some of the other challenges, we learned that lesson.” And when an adaptation works, it can be life-changing.
Isaac also uses his professional knowledge as a software developer to help his son. He independently arrived at the idea of creating a word-bubbling program that would reduce visual complexity of words by applying an outline of bright colors to them. He even began creating code for it—until he realized that the Roman Word Bubbling app already existed. “When we found that one, I was like, ‘Okay, that’s way better than what I’m gonna build offhand in my spare time,’” Isaac says with a chuckle. “I also started building an application that would allow you to upload an image and then it would allow you to do various transformations to that image like make it vibrate, make it bounce, make it grow and fade.” Today, Emmett mostly uses a combination of Roman’s word bubbling and Grid with a Smartbox, which is used for augmented communication. This is paired with TouchChat HD used on an iPad with a similar layout, supporting CVI-adapted communication in multiple environments.
“Honestly, it’s trial and error,” Isaac says, frankly. “I’ve tried out quite a few things with Emmett. We’ve tried a bunch of things that other people have built, too, and really the ones that have stuck, we’re still using: the word bubbling and Grid.”
“There’s a lot of potential in technology,” Isaac says. “So I like to try to figure out how we can incorporate existing or new technologies into helping [Emmett].”
With better access to his environment due to the use of adaptations and tech for learning and communication, Isaac says that Emmett’s visual behaviors and access continue to evolve, and the results have surprised him. For example, “Seeing him get excited about things, visually. People just don’t think about it, and take it for granted. But seeing him perk up or get excited about something by seeing it—is huge,” he says. Isaac is quick to point out that these changes didn’t happen overnight. Vision is hard work. After 10 years of educating himself and Emmett’s teams, tinkering with tech, trial-and-error adaptations, and so much hard work, Isaac says that the most exciting thing about Emmett’s journey is seeing him “figuring out how to access his environment and us figuring out how to help him access his environment.”
For Emmett, sometimes accessing his environment just looks like “simple stuff—He loves faces… He’ll lean forward and just look at you, and connect with people. And that’s one of the first things people say about him, too,” Isaac remarks.
Sometimes, it’s listening to his dad play guitar, his brother Sebastian (8) reading a book, or riding his adaptive trike. “He likes being outside,” Isaac adds. “Especially chairs that let him bounce back and forth, like rocking chairs that are outdoors. That’s his jam.”
When it comes to Isaac’s jam, though, he admits that having a social life and prioritizing self-care is “absolutely a challenge” with a medically complex kid. “We do try to get out and do things, at least individually,” he offers—meaning there’s one parent who always stays with Emmett while the other goes out. When he does block out time for himself, Isaac gravitates toward working out, playing disc golf, and other hobbies.
“Self-care is important and I aspire to do better, myself. I think recognizing logically that the more together everybody is—dads, moms, brothers, sisters, whoever—the better they can support, as well.” Together, we also can learn from each other. “There’s so much potential in getting varying perspectives and getting everybody engaged in a way that they can really lean in,” he says. On the flip side, “Everybody’s value is going to look different based on what works for their family. Recognize value and contribute in the ways that work—whether that means just taking something else off of your partner’s plate so they can focus, or working with the education team, or working with medical professionals more,” he advises.
As far as engaging disability dads directly, a couple of things have resonated for Isaac, including dad groups for children with disabilities. He says you need to understand one thing, though: “It’s not going to stick right away.” Simply put, juggling an extra commitment is hard. And with that in mind, another strategy that early educators can use to engage dads is to simply reach out. “Make it easily accessible, not too heavy,” like an after-work coffee to talk about the child, he suggests, “And start networking.”
According to Isaac, and other CVI dads, there’s a big upside to knowing and communicating well with your child’s caregivers. He says it’s important to “make sure they know there’s a lot of potential in recognizing and adapting to [CVI] as quickly as possible. So it doesn’t just get thrown in the backlog.” Isaac also puts extra emphasis on working closely with Emmett’s educators. “In terms of where the support system exists and it needs to be set up, school is huge. If they’re going to school full time, they’re learning more there than they’re learning at home,” he points out. “I would encourage parents, if they haven’t already, to familiarize with their rights and the requirements for special education supports and adaptations—and that all hinges on getting the CVI diagnosis.” For a child with CVI in the US, Free Appropriate Public Education includes CVI adaptations.
Ever the engineer, he remarks that when access and appropriate adaptations are a top priority, “there’s a pretty predictable outcome in terms of how you can help somebody recognize their visual environment better. It seems like something that, with understanding and early diagnosis, a lot of kids can be supported better.”
That right there is the proof in the pudding. Isaac not only has an unwavering dedication to his son, but an overarching commitment to understanding and navigating the complexities of Cerebral/Cortical Visual Impairment for the benefit of all kids who face this barrier. He’s not merely involved in his child’s upbringing; he’s committed to being present and engaged in the totality of Emmett’s journey. Whether it’s the countless hours spent researching and learning about CVI, or the quiet (or not-so-quiet) moments of support during therapies and educational endeavors, Isaac is dedicatedly there.
“I’m typically very hard on myself and critical of what I’m able to do,” he admits, encapsulating the nuanced journey of parenting a child with multiple diagnoses in just one sentence. Even when Emmett’s care is covered, and with the knowledge that we can’t pour from an empty cup, when it comes time to take care of himself, Isaac faces an issue that many parents of kids with disabilities do: “My challenge is justifying that time,” he says. “There’s an endless number of things that are in the backlog that I should be doing (or could be doing) to set Emmett up better.”
That struggle to justify the time to care for ourselves shows the gross lack of care infrastructure in our society. We are not supposed to do this all on our own. We’re not supposed to suffer and break ourselves. It’s not supposed to be this hard. In a landscape familiar to most CVI parents, Isaac’s sentiment resonates deeply.
But it also serves as a reminder that, as strong of an advocate as we are for our kids, we must advocate for ourselves, too.
So his sentiment is a call to action, especially for the CVI dads out there who are quietly making the world go round for their families. Being a staunch self-advocate not only ensures the best for your kid, but also empowers you to navigate the intricate system, demand appropriate support, and carve a path to holistic care. Ultimately, in the vibrant tapestry of disability parenting, self-advocacy remains an essential thread, weaving a narrative of strength, resilience, and determination for families embarking on this challenging but profoundly rewarding journey.