By Lindsey Geiss
Strongsville mother of two Stephanie Stewart has advocated for her youngest son, Alijah Jones, since his birth at 25 weeks led to cerebral palsy, vision loss and other challenges requiring lifelong support. The pair radiate positivity and set an example for others with their community involvement.
Now a 22-year-old student at Cuyahoga Community College, Jones describes a life “filled with challenges, strength and perseverance,” asserting there is nothing he cannot do with support from his mother and his “superhero” older brother, Ricky.
“I tell Alijah, ‘you need a manager or agent,’ because there is something to do every day,” Stewart says. “He has had a very independent, active social life from grade school through high school and now college. I keep him involved. I don’t want him to ever feel he can’t do something. We will do it, we just might do it differently.”
From age 6 through his teens, Jones was involved in Youth Challenge, which provides free adapted sports and recreational activities to young people with physical disabilities. “That was a bridge opening up a lot of things for him,” says Stewart. Jones’ confidence continued to grow and shine through high school, where he describes being part of all events, including attending prom, where he was nominated for prom king, and graduating with his classmates with a state diploma.
This summer, he participated in Akron Rotary overnight camp as well as Camp Cheerful, which he has attended since 2018. As part of the Best Buddies program of Baldwin-Wallace University, Jones was paired with two buddies who have become his good friends, joining him at movies, out to eat and other community activities. Jones was even selected as a spokesperson for the organization this year, which included a speech at the annual event. Additionally, two years ago, Jones took part in a six-month pilot internship program, where he assisted a clinic physical therapist with equipment preparation and upkeep.
When not busy with school, church and youth groups, Jones’ hobbies include swimming and trains, marked by a memorable visit to Strasburg Railroad in Pennsylvania. He especially enjoys theater, music and drums, hopes to get involved in the Beck Center for the Arts, and dreams of one day being able to attend Baldwin-Wallace University.
From Preemie to Post-Secondary Self-Advocate
Jones’ early years were filled with many doctors’ appointments and hospital stays. Recalling his birth story, Jones shares, “Premature birth and oxygen loss due to the prolonged wait during labor caused serious and life-threatening health and survival concerns for me.
“I weighed only two pounds; after cleaning me up,” he says. “I was one pound and nine ounces. I had emergency heart surgery in the NICU. I am told that while my mother and aunt were visiting me, alarms started to ring and they were rushed out of the unit [so it could be performed right then and there]. While in surgery, a hospital Chaplain was called in to bring my mother comfort, prayer and to baptize me… The NICU became my mother’s second home as she managed the stress of having a baby in intensive care while also caring for my teenage brother… [After three months] I was discharged with a feeding tube, breathing monitor and detailed care instructions.”
Stewart describes Alijah’s growth over the years, beginning with feeding, respiratory, speech, occupational and physical therapies. “Over time he graduated to physical therapy and an autism coach to help him communicate, for instance with social skills group sessions,” she says.
Throughout school, Jones had an individualized education program (IEP), used a vision board to help him see better and ramps with his walker for stability and independence. “Classmates were willing to help me when I needed it,” Jones says. “They learned that being friends with someone who has disabilities can be like any other type of friend.”
His classes include theater and American history at Tri-C Western Campus with Medina Creative Transitions (M.C.T.). It offers hands-on assistance for people with disabilities.
He continues to use a walker for community and college mobility, in addition to a smart wheelchair to maneuver himself and navigate longer distances.
While he admits college is a departure from high school — and managing the work required by professors can be stressful at times — Jones has found that taking and prioritizing one class at a time works for him.
“It may be a slower pace, but for me it is better to go step by step,” he says.
“The M.C.T. staff takes time with all of us to see what is best for each student,” Jones says “They help with scheduling appointments with counselors and professors so that they can understand my needs and how to make the lessons accessible to me. For example, I can sit closer, get someone to help me write, use a magnifier to help me see better and a recorder to help me go back and listen to the lectures. My disability presents daily challenges that may not be easily understood by others. My family has supported me in every way to allow me to do just about anything an able person can do. I may require some adjustments accessing buildings or areas, yet they never stop me. Being disabled doesn’t mean this is the end of anybody’s life as this is a good life and it’s luckily mine.”
Caregiver Guidance and Growth
Stewart shares advice for other families. “Resources are critical,” she stresses. “They are out there, but don’t be afraid to step in, ask and advocate. Find out what you can get involved in. Some things will go right, or you’ll advocate to make it right, like making a phone call for a ramp or coordinating a combination of supports.”
She also suggests maintaining any special connections you make along the way, citing her son’s high school secretary who he bonded with through daily office visits, coffee and conversations.
She encourages others to plan for transitions early, for instance looking ahead to milestones at age 12, 16 and guardianship at 18. Helpful advisers for them included a nurse practitioner specializing in complex care and a county service and support administrator (SSA), who is assigned when a person applies and becomes eligible for county board services.
Stewart describes her own growth on this journey as well.
“I used to cry a lot, but I told myself I’ve got to buckle up; crying is not going to get it. I try to keep a balance, especially being a single mom, taking time for myself as Alijah’s gotten older. I look for support from family, friends and groups, keep a pocket calendar, and work part-time to allow myself to navigate everything.”
Stewart drives more than her own children’s endeavors, providing special needs bus transportation for students in her school district after also serving as an aide. She knows what a difference small steps each day can make to engage students and put parents at ease knowing how much staff cares. In addition to church commitments, she also serves on the board of the Superhero Project, which featured a picture of Alijah on its recent Kelly Clarkson Show appearance.
“When someone asks me to get involved, I extend myself to make sure we are leading a good way for others.”
For more information on Medina Creative Living Transitions services, including the Day Program, Post-Secondary College Program, Summer Career Skills & Exploration, and Independent Living Experience, or to set up a tour, visit medinacreativehousing.com or contact Nancy Brewer, Academic Coordinator at 330-388-5880 or nancy@medinacreativeaccessibility.com.
Additional information on organizations mentioned:
Youth Challenge (Westlake) youthchallengesports.com and 440-892-1001
Akron Rotary Camping Programs for children and adults with special needs gotcamp.org/akron-rotary-camp and rotarycamp@akronymca.org
Camp Cheerful (Strongsville) achievementcenters.org and 440-238-6200
The Superhero Project superheroprojectkids.org and hello@SHPkids.org
