Luke Chen is unlike your average 18-year-old. He doesn’t fight over sharing a car with his parents, doesn’t sneak out of the house to go to a party, and certainly doesn’t star on the high school football team after school. Instead, you will find him in the Pilates studio, more accurately Grasshopper Pilates of Marin.
In the studio he works with longtime Pilates instructor and owner Mary Mock to strengthen his movement and balance, which is necessary because also unlike most 18-year-olds, he has cerebral palsy.
The National Institute of Neurological Disorders and Stroke define cerebral palsy as any neurological disorder that occurs at a young age that affects body movement and muscle coordination, but does not worsen over time. But definitions have a way of not encompassing the whole truth. For Chen, the disorder means much more, including losing the traditional 18-year-old’s lifestyle.
Janet Chen, Luke’s mother, explains that Luke was first diagnosed at around nine months old when he wasn’t meeting the developmental milestones of a baby, including not being able to roll over or sit up. “Our pediatrician sent us to a pediatric neurologist,” says Chen. “He told us at that time that Luke had cerebral palsy.”
Like any mother would do at that point, Chen looked for options. She immediately took Luke to the Child Development Center in San Francisco for physical therapy twice a week, where they went for many years. From there he went into the Infant Program at the Marin County Office of Education (MCOE), where they went twice a week. After that they were referred to the California Children Services (CCS), where he also received physical and occupational therapy.
It wasn’t until around three years ago that they were told by a woman from CCS that Luke needed Pilates. A popular exercise method for developing physical strength, flexibility and posture, Pilates is very effective at strengthening the mid-section of the body, sometimes called the core. According to Chen, that is the area of the body where Luke is weakest.
Lori Fong, 53, has been working with Luke for 16 years and accompanies him to his Pilates lessons each week. She was introduced to Luke through the MCOE Infant Program where she has worked for 20 years. According to Fong, she’s seen major changes in his body that she can only attribute to the two plus years of Pilates that Luke’s been doing.
“At first, it was really challenging,” says Fong. “I’m not sure if he really wanted to do it, and I’m not sure that he really understood what it was about or what it was for.” Fong also explains that he needs a set routine, so having things that are unfamiliar in his life is very challenging for him. Chen says that this trait may indicate mild autism.
“Since he can’t stand up without swaying, we start with the footwork on the reformer,” says Mock. “We progressively add more springs, teaching him how not to hyperextend and lock the back of his knees. Now he does standing footwork with a magic circle between his ankles, without swaying or buckling his body.”
Early this year his high school teachers came to the studio to watch and learn what he was doing. When Mock invited them to join in they were amazed that he knew his routine, moved seamlessly from one exercise to the next, and had a unique name for each. They were surprised at how challenged they themselves were with side leg kicks, rolling like a ball and roll back on the Trapeze Table. They were particularly impressed with the reformer, comparing it to
the “squeeze machine” that Temple Grandin invented to calm herself.
According to Ms. Chen, Luke has made remarkable progress. Marking a huge milestone about a year into his Pilates workouts, Luke was able to walk up and down the set of stairs in the Pilates studio, hands free, which was considered to be an astounding feat for those watching.
“Now I feel like his body looks healthier, and he’s definitely stronger, and he really loves going to Pilates,” says Chen.
On Luke’s eighteenth birthday celebration this year, instead of getting material items like any other 18-year-old would have asked for, he received the hope for a more functional body—and a new quality of life.
Author: Submitted by Mackenzie Mock for Luke Chen
Location: San Anselmo, CA