Around 5:30 a.m. on any given morning, Katie Peterson is getting ready for work. There are a lot of things going through her mind—what she’ll do at work that day, what her son, Mason, will do at school, what Mason will eat for breakfast, and when Mason’s next appointment is at Gillette Children's Specialty Healthcare.
Mason, age 6, most likely isn’t thinking anything of the sort. In fact, he’s probably deeply engaged in watching Jeopardy—his favorite show. “When he was younger, his great grandparents watched jeopardy a lot, so he just watched along with them. I think he likes the music and the sound effects to it,” Katie says, “I’m so glad he has so many loving people in his life to expose him to things I wouldn’t have thought of…like Jeopardy!”
Since Mason is nonverbal, figuring out what he likes can be a game of trial and error. “Learning about Mason means giving him options! He’ll respond with an excited noise if he wants something, otherwise, he’ll completely ignore you or grunt if he doesn’t like it. Introducing him to a bunch of different things is a guessing game, but that’s how we found Jeopardy and Burger King chicken nuggets,” Katie says.
Mason is a very happy kid and loves being home with his favorite people, Katie and her parents. They watch TV, ride bikes, read and blow bubbles. Mason can be shy, but once he warms up and gets excited about the activity, his smile is contagious. Katie says, “He’s been my greatest blessing. He’s helped me grow in so many ways. I wouldn’t change a thing.”
The Learning Curve
In January 2013, however, Katie had no idea what the future would look like. Mason entered the world six weeks early. “I had preeclampsia,” Katie says, “So that complicated things.” Preeclampsia is a condition that can occur during pregnancy when a woman's blood pressure rises sharply. Often, this leads to complications; in Katie’s case, preterm labor. After joining the world a little early, Mason spent four weeks in NICU, where he mastered the art of breathing and was promptly sent home after being declared strong and healthy.
“We really didn’t know anything until he was one year old. His pediatrician noticed some milestones passing and referred us to Gillette,” Katie explains, “Once we got to Gillette, Mason had an MRI scan, and we learned he had damage to the white matter in his brain. That’s how we found out his cerebral palsy diagnosis.”
Cerebral palsy describes a group of disorders that affect a person’s ability to move, caused by brain injury or atypical brain development at birth. “When I first found out, I was heartbroken. You never think your child is going to develop a disability or that they’ll have to have more care. There’s a learning curve, but now, I couldn’t ask for anything different from Mason. This is who Mason is and I couldn’t imagine him being anyone else,” Katie says.
Though cerebral palsy is a permanent condition, the original injury to the brain doesn’t change or worsen over time. That means any progress or treatment of the effects of cerebral palsy can really make a difference, especially to a child who is still learning and growing.
Working Toward Independence
Gillette has helped children who have disabilities and complex medical needs—and their families—for more than 120 years. This long history helps give a wider perspective to parents who are just starting to understand their child’s diagnosis. Katie says, “The best thing I learned from Gillette is that no two kids are the same. Each kid is going to have a different outcome, so don’t waste time comparing your child to anyone else’s. At Gillette and at home, I take what Mason knows and what excites him and build on that—just trying my best to help him grow into who he is meant to be.”
For Mason, that means working with an occupational therapist and a speech therapist. In occupational therapy (OT), food is the name of the game. He loves those chicken nuggets, but a wider variety of foods will help him gain weight that will make physical therapy (PT) much easier in the future.
“Currently, we’re trying to familiarize him with more foods so he has a more complete diet. Later, both OT and PT will work on having him crawl or walk so he doesn’t have to rely on his wheelchair all the time,” Katie says.
In speech therapy, Katie and Mason have started to try an adapted communication device—a potential avenue for him to communicate more easily. He’ll be able to use the iPad-like device to touch images of the things he’d like to say—which is much clearer for Katie to interpret than the noises or gestures he uses now. “In the long term, for speech therapy, I’d love to hear his voice,” Katie says, “We’d like him to be able to talk with his own voice, even if it’s just one or two words, or maybe learning sign language so we can interact with him more fully. But, we’re meeting him where he is, and ultimately, everything he’s working on at Gillette is focused on giving him more control and independence.”
Run, Walk and Roll for a Cause
Mason has been coming to Gillette for almost 5 years. He sees quite a few specialists because of the different therapies he’s working on, but one thing ties them all together. “Everyone at Gillette has been amazing,” Katie says, “His doctor, Dr. Aldahondo is so great with Mason—talking to him in a way that he is comfortable with. When he’s around people he isn’t familiar with, he usually gets upset, but she’s been great at working with him so he’s comfortable with her. We’ve had a lot of different therapists, but they’ve all been great, so invested in Mason and the goals we want him to reach.”
That's why, on June 8, you’ll find Katie and Mason at Gillette’s fourth annual Run, Walk and Roll festivities, raising money for a cause close to their hearts.
This disability-friendly event has Gillette families and supporters running, walking and rolling the beautiful paths at Como Park in St. Paul. The event raises funds for adapted sports and communication equipment for Gillette patients of all ages.
“Mason loves riding bikes after school and now that we’re pursuing a communication device for him, it really brings it full circle. We’re so happy we can help kids like Mason at an event like this,” Katie says.
Unable to join us for the Run, Walk and Roll, but still want to show your support? Donate to Mason’s Run, Walk and Roll team to help raise money for Gillette kids!