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Celebrating CVI dads: Pat and Weston
Get to know Pat Mahady, father to Weston, who has CVI. Pat talks about fatherhood, adapting his home and life, and creating safety for his son.
Like most parents, Pat Mahady and his wife Ali didn’t know anything about Cerebral/Cortical Visual Impairment until their son, Weston, was diagnosed with it. Having CVI is a big deal, and it can mean a lot of different things — from struggling with visual attention and visual recognition to navigating a society that doesn’t have an understanding of brain-based blindness, and everything in between. But to Pat, at the time of Weston’s diagnosis, CVI meant one thing: “We have to make him feel safe.”
Weston’s parents knew that something wasn’t right soon after he was born. They experienced a normal pregnancy and birth, but by 3 months, Weston was having seizures. An MRI revealed brain and eye abnormalities, and a fourth nerve palsy in his left eye, contributing to exotropia. When the family began early intervention services, they sought out Perkins. “We’ve always heard of Perkins,” Pat says. “We lived in Boston at the time and we just knew Perkins, the reputation… We knew that they would have the resources.”
Between the two of them, though, Ali was the one to spearhead a connection with Perkins because she’s “great with all the medical stuff,” Pat says. “She knew exactly which doctor she wanted to see there. All the different types of people, the different types of evaluations. Everything that we needed to get Weston, she made sure that we got it.”
Burju Sari, a CVI Coordinator at the CVI Center at Perkins School for the Blind, was the first person to talk with Pat and his family about CVI. Through evaluation, Burju determined that Weston experiences difficulty with clutter, a common visual behavior for individuals with CVI, and would benefit from high-contrast environments. Weston also has exotropia, making depth perception difficult for him. After Weston’s seizures, there was also muscle weakness on the left side of his body.
Burju explained to Pat what CVI was, how Weston processes what he sees, and the best ways to introduce new toys. She even “crouched down to Weston’s level. She’s like, ‘This is how he sees… You’ve got to break it up.’”
Pat took Burju’s advice and ran with it. This was the beginning of his mission, as Weston’s father, to make him feel safe.
This June, Weston will be 5 years old. And now that Pat has a better understanding of what Weston sees and feels comfortable with, in part due to Burju’s guidance as well as resources from CVINow, he’s adapted every inch of their home in Westford, Massachusetts.
He started with their home. Pat created high-contrast corners with padding and named black exercise mats from Amazon as a favorite item to increase safety. “Burju helped us with this — just setting them up on the floor with a red tape line. So he could look down, and even with the exotropia and everything, he knew that there was a line from where he was, to where I was,” Pat explains. “We could see him practice taking steps on that line.” CVI-proofing their home hasn’t been an easy process, but Weston now runs around the house “which is great,” says Pat.
In order to teach Weston how to ride a tricycle, Pat used high-contrast tape to highlight the pedals and handlebars so he knew exactly where to put his feet and hands. “Eventually he was able to get the motion down. And now he motors around the driveway. I put cones in front of him to see what he does. He’ll navigate around the cones,” Pat says. “It’s one of his favorite things to do.”
To help create a calm environment for schoolwork and learning, Pat adapted a desk for Weston that removed visual clutter and provided more supported seating. Weston is now better able to “sit down and really focus” with a visually simple space. During peak COVID levels in 2020, Weston could sit at his adapted desk and virtually work with providers one-on-one “for as long as he was able to tolerate sitting there,” Pat says.
Aside from adapting for Weston’s visual attention, Pat helps Weston with another area of development affected by CVI — his visual recognition. “Familiarity is very important,” Pat remarks. “So during the weekends, I would take him to the playground at his school. I’d be like, ‘This is the slide. This is the walking bridge. This is where you’ll probably see all the other kids running around.’” Introducing a child with CVI to a new environment when it is uncrowded and quiet can help familiarize a child with a novel space and build their visual library. For many with CVI, applying that visual memory to unfamiliar versions of a well-known object or environment can be extremely difficult. This is why repetition and familiarity are important foundations for instruction and learning.
Another way Pat has helped Weston feel safer and more confident in his environment is by helping him become physically stronger. Weston’s brain abnormalities and seizures left his whole left side weak.
“So my goal,” Pat says, “Was to get his legs and his hips and his core — Just try to strengthen up everything. And I had to get him motivated to do that.” Pat incorporated Weston’s favorite toy, and presented it against a black background to ensure Weston could see it. “So when I grabbed his hips and made him do a squat, he knew when he popped back up his toy was going to be there and could play with it,” Pat explains.
Creating a safe environment for Weston isn’t just physical. Pat recognizes that maintaining a healthy marriage and well-being benefits Weston, too. In fact, according to a 2015 study on support needs of parents of children with autism, fathers may be at risk for having their support needs go unmet. “It’s definitely like a team approach,” Pat says about his partnership. “We know what we’re good at, and we know when we’re going to need help.”
Pat explains that while Ali takes on the bulk of coordinating medical needs for Weston, his role takes on physical activity and play — a common dynamic among parents of children with CVI, from our findings in speaking with fathers for this series.
When it comes to his social life, Pat admits, “It is very difficult.” Often, parents of neurotypical children often don’t understand the complexities of the journey. But he puts his own spin on it. Because busy environments, like restaurants, are a “no-go” for Weston, Pat tells his friends, “If you guys want to see us, this is our situation. You can come see us. Come on down to our house. We have a nice little patio out back and we can order some takeout.”
Always coming back to his mission as a father, Pat maintains that the most important thing is for Weston to feel confident, comfortable, and safe.
The biggest barrier to his mission, though, is time. Time for appointments, education — and time for Weston to be a kid.
“During the first year or two, I think we had over 200 hospital appointments,” Pat says. “We used to go into Boston 3-4 times a week… It was brutal. And the poor kid — sitting in the back. We know he wants to play and explore, but he’s going to the hospital all the time.”
Fortunately, the increased demand for telehealth appointments during the COVID pandemic enabled the Mahadys to continue treatment without the burden of commuting. Having more time was also essential in continuing their education about CVI. “Being educated about [CVI] is extremely important because then, you start knowing what to look for,” Pat says.
And once you know what to look for, you can get more granular. “Start trying different things. Start seeing what they enjoy,” Pat recommends. “Whether it’s running around, jumping, manipulating stuff with your hands, or just being able to focus on something fun on the screen — as soon as you’re able to make them feel safe and secure, they’re going to start exploring with whatever they’re able to do.”
As for advice for other fathers of children with CVI, Pat levels with us: “A majority of the dads like roughhousing, running around… You can definitely still do that.” The caveat is that “if they can feel safe, they can feel secure, they can feel confident in exploring, and they’re going to start exploring.”
They’re little kids — That’s what they are! So they’re going to explore if they feel confident to do so.
He acknowledges that CVI is a blanket term, though. Every kid is different, and every diagnosis is different. Pat’s main takeaway for other parents of children with CVI, including those who have compounded diagnoses, is to continue learning. “We learned what worked for [Weston]. He still needs his breaks. He still needs the dark room to calm down because he’s working so hard.”
At the end of the day, “being able to sit with him and learn how he’s seeing the world — I think that was the most important thing,” he says.
When reflecting on his efforts, Pat simply sees them as “all the different types of stuff that help [Weston] feel like he could explore safely.” He, as we’ve seen many dads of kids with disabilities do, simplifies his paternal role.
In reality, he’s a father that goes above and beyond — yes, because he has to. But the necessity of creating access for his child with CVI, from adapting the home, toys, routines, relationships, and working every day to educate himself and others about CVI — that should be celebrated as incredible parenting.
