Sky’s the Limit
Teenager With Cerebral Palsy Excels in College
Nineteen-year-old Jack McGraw had a typical first year of college: He enrolled in general education classes including English composition and psychology (his favorite), found his way around a new campus, discovered new extracurricular activities and made friends with his classmates, and of course spent hours writing research papers and cramming for exams.
“My experience as a college student has been stressful,” says Jack of his first year at Elgin Community College. “The most challenging part of college is all of the writing and homework. What I love most about college is participating in the Phi Theta Kappa Honors Society.”
The non-typical part of Jack’s freshman experience is that he typed his essays and lecture notes using eye gazes and icons on a computerized communication device attached to his wheelchair. Jack has cerebral palsy (CP), a condition that limits his mobility and speech but does not impact his intellectual abilities. College life can be stressful for any student, but late nights studying and long hours spent working on papers is particularly fatiguing and physically demanding for a person with CP.
“There is no typical CP experience. It varies in levels of severity with some children needing assistance with everything and others with nothing,” says Larissa Pavone, MD, a pediatric physical medicine and rehabilitation physician at Marianjoy Rehabilitation Hospital, part of Northwestern Medicine. Dr. Pavone has been Jack’s physician for six years. “Jack is an amazing and inspiring example of how a CP diagnosis does not determine or limit a child’s future. He’s never allowed CP to define him. Jack’s had the same experiences as other kids, but he’s doing his own version of it and he’s doing it really well with a great attitude.”
A non-progressing disorder of movement and posture, CP is caused by damage or abnormalities to the immature brain. Generally diagnosed in babies and toddlers, CP affects nearly three in every 1000 live births in the United States making it the most common childhood physical disability. Children with CP may experience mobility and speech issues, and in some cases have limited cognitive function.
Jack works with Dr. Pavone to manage the musculoskeletal symptoms of his condition.
Both physician and patient see their relationship as a partnership in which Jack has an active voice in his care.
“He’s the boss,” jokes Dr. Pavone. “Jack leads his care by telling me what he’s experiencing and what he needs. I use that to inform my treatment plan and partner with his physical therapists to coordinate his care.”
For Jack, this partnership with his physician means an enhanced patient experience, which has also included inpatient and outpatient physical, occupational and speech therapy at Marianjoy.
“It feels so refreshing and wonderful that Dr. Pavone respects my input and works with me to make sure my needs are met,” says Jack. “It makes me feel so good that she sees me as inspirational and as an example for other kids. I would tell others to never give up, no matter what. Always believe in yourself. Even though you may have limits, you can still do great things.”
A sports fanatic, Jack recognizes the value of team support. In addition to his medical team, another group of people has been invaluable in helping him achieve his goals: his family. Jack lives with his parents, Jill and Michael (a family medicine physician at Northwestern Medicine Regional Medical Group Bloomingdale), his 17-year-old-sister Molly, and Bailey, the McGraw’s 6-year-old golden retriever.
“My family has contributed to my accomplishments by always supporting me,” says Jack. “Every day, they get me up from bed, take me to the bathroom, feed me and put me to bed. They’ve also cheered me on to be the best person that I can be.”
For the McGraws, having a son with CP has not changed their parenting style or limited the future they envisioned for him.
“As a parent, you can never give up the idea that your child can have a happy life,” says Jill. “We’ve always treated Jack like we would any child from when he was mischievous in middle school to now that he is a strong-willed, stubborn teenager. Sometimes it is harder than other times, but we’ve never given up hope or stopped pushing him to be successful and live his best life.”
When Dr. Pavone meets with families of children newly diagnosed with CP, she reminds them that the diagnosis helps with planning, but should not define their child’s life.
“CP does not always determine a child’s future; we have to see who they become, but there’s so much technology that can substitute for speech and mobility limitations, and we have medicine and therapies that can help manage CP,” says Dr. Pavone. “Jack, Michael, Jill and Molly are what I want all my patients and families to aspire to. He’s an amazing kid and they’re an amazing family who has always supported him and stood behind him as he has achieved great things. They’ve always believed in Jack and never let CP define him.”
The Marianjoy Pediatric Rehabilitation Program provides inpatient and outpatient rehabilitative care to children from birth to 18 years of age who have physical, cognitive and/or learning challenges due to illness, injury or congenital causes. Marianjoy pediatric therapists are highly skilled in a variety of specialty areas and at all levels of care-inpatient, outpatient and day rehabilitation. The program uses physical therapy, occupational therapy, speech-language pathology and neuropsychology to treat pediatric patients with an array of conditions, including: cerebral palsy, orthopaedic conditions, neuromuscular diseases, brain injury, spinal cord injury, autism spectrum disorders, sensory integrative and more. At Marianjoy, parents, siblings and loved ones play a crucial role in a child's rehabilitation program. Family education is an important part of helping children reach their goals.