Zach, who’s 4 years old, is a super happy kid. He loves to play catch, run around the house, go to swim lessons, watch Ms. Rachel on Youtube, listen to music, and do anything his 7-year-old big sister Abby is doing. “Normal kid stuff,” according to his dad, Chris.
Zach has CVI, or Cortical/Cerebral Visual Impairment, so he has to work so much harder to access all this “normal kid stuff.” His parents, of course, had a lot to do with helping Zach find success in doing what brings him joy.
For Zach and his family, the road to a CVI diagnosis was relatively short compared to other children with CVI, which is alarmingly underdiagnosed and misdiagnosed.
After a normal pregnancy, April (Zach’s mom) delivered him five days early in a “nothing out of the ordinary” birth. After they brought him home, though, Zach refused to eat. By day two, they took him to Boston Children’s Hospital after a visit to his pediatrician. “It turned out that he had a viral infection that was causing a loss of oxygen. So—pretty nerve-racking. As soon as we brought him in, there were 40 people in the room right away. Then, he had a five-day stay at the NICU at Children’s.”
Zach’s team at Boston Children’s discovered that there had been some inflammation in Zach’s brain, but didn’t yet know how that could affect him long term.
Six months later, Zach was in early intervention “just because of his stay at the NICU,” Chris says. “His eventual primary person, who was awesome, she noticed that he wasn’t tracking correctly and recommended we see an ophthalmologist.”
After confirming tracking issues with an ophthalmologist, April and Chris were referred to Dr. Fulton at Boston Children’s. That’s where Zach first got his CVI diagnosis, at “around nine or 10 months” of age, according to Chris. At 2 years old, Zach was also diagnosed with Global Developmental Delay. Chris notes that Zach’s speech is also delayed, but they’re working on it with a private speech pathologist and a great team in their town’s early education program.
Immediately after Zach got his CVI diagnosis, Chris said that he and his wife were “all in on ‘What is CVI?’”
They registered him with the Massachusetts Commission for the Blind, and started to work on getting Zach assessed. That’s how they found out about Perkins and then Dr. Kran at the Low Vision Clinic.
Chris says that April “definitely took the lead” when it came to making contact with specialists, which has been a trend among other CVI dads that we’ve spoken with about their child’s diagnosis and educational journey, but adds that he has been involved as much as possible.
“[April and I] both work from home, but my job is a little more flexible than hers is,” Chris explains. So you might see Chris doing drop-off and pick-up at school, for extra-curriculars, and therapy.
Chris also does his own research.
“I do a lot of research on out-of-the-box things,” Chris says. “I look at all the clinical research that has been done on CVI, and there’s not a ton, but I have bookmarks for all the clinical trials that are going to be happening everywhere. And it’s tagged, so when CVI comes up, we’ll be on the forefront.”
For Chris, it’s hope for spreading a greater awareness and understanding of CVI that drives this need to know about the latest findings on brain-based blindness. “That’s how my brain works. I’m like, maybe there’s something out there. Maybe there will be eventually,” he contemplates. “I’m connected to a couple of websites where you can look at clinical trials—local and across the country. I’m hopeful that, through time, there will just be more and more. As CVI becomes more open, more awareness is built around it.”
Chris’s dedication to staying informed has served Zach well when it comes to getting early intervention services. Chris describes the process: “As soon as you get the CVI [diagnosis], it was connecting him to a TVI. As soon as we knew his speech was delayed, it was ‘Let’s get him a speech therapist.’ … He had some issues with walking. He walked pretty late until we realized it was because of increased tone in his leg. Then once he got the brace, he picked up walking pretty quick. But it was making sure that he had an O&M and a PT. So he’s got the full team.”
Gathering a team isn’t usually an easy or straightforward journey; less so when it comes to transitioning from early intervention to an Individualized Education Plan (or IEP). But Chris proudly shares, “We’ve been those very informed parents that got our way on our IEP process all the way through—because we weren’t going to take no for an answer.” According to him, even their Early Intervention Team didn’t expect the process to go as smoothly as it went. He mentioned that Zach received support through early intervention and private care, and they hired a private advocate to smooth over communication between teams.
It was quite an education for us both. And we definitely were not going to let Zach fall through the cracks.Chris Palmquist
Advocacy at this level is hard work. April and Chris maintain their marriage and social life “with help.” Extended family plays a part in providing some care for Zach, and each parent sticks to a regular exercise schedule—another trend among disability parents that we’ve talked with.
“I go to my gym on Mondays and Wednesdays, my wife goes to her gym on Tuesdays and Thursdays. On the weekends, we do something with our family. Every other weekend, we try to get out, just us,” Chris explains. He also trains in Brazilian jujitsu. “I think that helps me relieve stress. I shut my brain off and wrestle for an hour. It’s problem-solving and physical exercise all in one,” he says.
While it sounds like a perfect balance for him and April, Chris was quick to put the focus back on family. “It’s just compromise, working together, and making sure that we’re doing everything we need to do to take care of ourselves,” he says. “Because if you don’t take care of yourselves, you can’t take care of your children.”
Zach’s timely diagnosis, along with early intervention and having his parents as his greatest advocates, marked a turning point for Zach’s ability to access his world. The proof is in the pudding.
“He loves school. You can’t even say the word ‘bus’ too early because he’ll be mad that it’s not there yet,’ Chris says when asked about Zach’s interests. Outside of school, Zach likes to play with his big sister the most. He’s been swimming since he was 6 months old. He likes to play with blocks. According to Chris, he’s got every version of buildable blocks, like Bristle Blocks, magnetic tiles, digi-blocks, and dominos. He also likes to ride his bike “way too fast” around the house. “He’s got his little tricycle and glide bike and he’ll just just ride around the house at 100 miles an hour,” Chris says, with a laugh.
And in the most stereotypical 4-year-old fashion, a current favorite activity is “full sprinting around the house with his grocery cart and smashing it into things, which unfortunately sometimes is me or April.”
Chris isn’t surprised that Zach enjoys “normal boy stuff,” but he is amazed at Zach’s ability to adapt.
“When you kind of go through discussions with the doctors and what his diagnosis is, I think you have a bleaker outlook,” he explains.
His ability to adapt has been really surprising; to use his other senses, get used to his environments, and learn them so he doesn’t have to rely on just his vision.Chris Palmquist
He also cites technology as an unexpected aid in Zach’s ability to adapt.
Chris predicts that Zach will continue to progress “because his original ability to use his vision was significantly different compared to what it is now. It’s night and day and it’s still getting better.”
Day-to-day, though, Chris knows that CVI is “not a static diagnosis… It’s a waning and waxing issue that can be good on some days and bad on other days and in certain conditions.” He only wishes that medical professionals and educators understood this part of the condition better.
Depending on temperature, amount of light, and other sensory inputs, individuals with CVI might have more or less ability to use their vision. “It makes it a complex, complicated issue to accommodate for,” Chris admits, “but it’s important to know that it’s always kind of changing. It’s changing as the child grows because their brain is always evolving. It’s going to change month-to-month for Zach, and year-over-year. And sometimes, it’s going to change day-to-day and hour-to-hour.
But at the end of the day, Chris comes back to his research and his innate drive to advocate for his child.
His advice for other parents of children with CVI is to “just try to be as involved as you can,” he states. “Every CVI diagnosis is different. But, in a general sense, we’re kind of all going through the same thing.”
Knowing that better access to his world, adapted learning strategies, and the benefits of neuroplasticity will all help Zach succeed, Chris is confident when he says, “His brain won’t be fully developed till he’s 25, so Zach will keep getting better and better.”
Read more CVI dad stories in our heartwarming series—Celebrating CVI dads: Stories of fatherhood and raising children with CVI.