By Carmen Brown
Photos by James and Rachel Culver
Somebody to Lean On
Jennifer Statum remembers that summer day in 2021, when her doctor first said the words. The shock. The fear. The worst-case scenario images in her mind.
“I probably was not very kind to her,” Jennifer recalls. “I told her, ‘You have to stop talking to me because I have no understanding of what you’re saying.”
On December 23, 2020, Jennifer’s son, Jack, had arrived two months early, a surprise, tiny, Christmas package and new baby brother for her older son, Jake, then 2. Weighing only two pounds and 10 ounces, Jack spent about eight weeks in the Neonatal Intensive Care Unit (NICU) at Brookwood Baptist Medical Center. At first, Jennifer’s concerns were few, but by the time he was 9 months old, Jennifer noticed that there were several things he was not doing that most babies his age were doing.
“He was rolling to one side but not to the other, and he wasn’t sitting up yet,” Jennifer explains. “At first I didn’t think anything of it, because I was told that since he was born two months premature, there would be a two-month developmental delay.”
She decided to pay a visit to Dr. Margaret Winkler of Southlake Pediatrics, who recommended that she consult the Arc of Shelby County, a nonprofit organization based in Pelham, where Jack could start benefiting from physical and occupational therapy.
Jack began working with a physical therapist, Melissa White, whom Jennifer calls “the most amazing woman on the planet.” Melissa has been working in early intervention for 30 years and has been with The Arc’s Early Intervention program for 5 years. She is one of two physical therapists who work with the Arc. Melissa Ogle, one of her former students, does in-office evaluations, while Melissa White does at-home visits.
He will Walk
White began to notice that Jack was having some rotation issues, and his leg was turned in a little. She connected Jennifer with Dr. Kelli Chaviano, a doctor of osteopathic medicine with Children’s Hospital. This was the point where Jennifer found herself in Dr. Chaviano’s office, where the doctor posed the question: “Have you heard of cerebral palsy?”
Like most people, Jennifer had heard of cerebral palsy, but she was in no state to have a conversation.
“I called my husband, Joel, and put him on the speaker phone, while he talked to her and asked all the questions,” Jennifer says. “I cried all the way home.”
When Jennifer got home, she picked up the phone and shared the news with White, who calmed her fears.
“She told me, ‘Where your head is, is not where he is. He will walk. He will run. This is not a degenerative disorder,’” Jennifer says.
Since Jack’s diagnosis, the Arc of Shelby County’s Early Intervention “EI” program has become even more of an integral part of his developmental journey. In 1988, Early Intervention Children Services was the first program to be established at The Arc and focuses on cognitive, communicative, physical, adaptive and social/emotional development.
The Arc’s Executive Director Jeannine Lyons says the EI program is free of charge for children who qualify.
“To be considered for Early Intervention, all you need is a referral,” Jeannine says. “It can be a parent, doctor, neighbor—anyone. They will do a developmental evaluation, and if there’s at least a 25 percent delay in one of the five areas of development, the child is eligible.”
As per their mission, the Arc empowers individuals such as Jack, along with their families, to achieve their goals.
“Physical therapists may be experts on conditions like cerebral palsy, but the parents are the experts on their children,” White says. “When we combine that knowledge together, it all becomes very natural. Our role is to meet families where they’re at.”
White says that Jack has made “tremendous progress.” Today, Jack enjoys going to The Arc’s children’s events such as Tales for Tots. His big brother, Jake, sometimes accompanies him.
“They’re best buds, and they’re the two most talkative kids on the planet,” Jennifer says with a chuckle.
Jack currently receives two physical therapy visits and one occupational therapy visit a month, and he and his mom also go to Easterseals twice a week. In January, he started going to the Bell Center for Early Intervention Programs in Homewood twice a week for physical and occupational therapy. He had an ankle foot orthotic (AFO brace) put in place to force his foot down, so he wouldn’t stand up on his toe. He now sits on his bottom instead of on his feet. He also has been receiving Constraint-Induced Movement Therapy (CIMT), which forces him to use his weaker hand.
“He’s doing so great,” Jennifer says. “He loves to walk. Jack has grown in confidence in his walking and is walking now without assistance. We are so proud of him.”
Jennifer thinks back to the devastation she felt that day almost two years ago in the doctor’s office. The first couple of days afterward, after having time to think and receiving an outpouring of support from family members and friends, she knew being part of The Arc community would make Jack’s journey a little easier and help the family move forward.
“After I had a chance to wrap my head around it, I thought, ‘Okay, what can we do? Whatever we can do to help our son, we will do it,’” she says.
The Arc of Shelby County
The Arc of Shelby County, part of The Arc of the United States and The Arc of Alabama, was founded in 1974 as an advocacy organization by a group of parents who wanted to support other parents of children with disabilities. As part of its mission to empower people with disabilities to achieve their goals, the Arc aims to educate people with disabilities and their families on current issues that affect their lives, as well as to inform legislators about these topics.
Jeannine says the Arc symbolizes a continuation of services throughout the lifespan that encompass three areas: advocacy, coaching and support.
“What stands out about the Arc is that no matter what program they participate in, individuals can live the lives they want to be living,” she says.
In addition to Children’s Services and its EI program, the Arc offers employment services, community services and the New Visions day program.
The Arc launched its employment services program in 1999 to meet the needs of adults with developmental disabilities.
“Through employment services, our goal is to make sure people who want to have jobs can get jobs,” Jeannine says.
Project Search and pre-transition services are part of the employment services program. Project Search is a part of a partnership with Shelby County Schools for teens who want to get a job or go to college . High school students aged 18 to 21 take part in three 10-week internship rotations at Shelby Baptist Medical Center, where they learn competitive skills. Through partnerships with vocational rehabilitation and Shelby County Schools, The Arc of Shelby County provides a variety of services to students age 16-21 throughout Shelby County.
“Pre-transition services offer students aged 16 to 21 training to increase likelihood of employment,” Jeannine says. “They do things like take driver’s ed classes and learn more about companies they might want to work for.”
Community service programs such as the Arc’s S.T.A.R. program helps individuals apply for public assistance and helps people find resources to help them.
“Community services help people who want resources to help other people with disabilities,” Jeannine says. “We help with everything from finding parenting workshops to helping them get assistance with their utility bills.”
Based in Calera, the Arc’s New Visions program serves Chilton and Shelby counties and offers a day program where people with disabilities can work on personal skills, social skills, communication skills, self-help skills, daily living/independence skills, social and adaptive skills and recreation/leisure activities.
“Individuals might want to learn how to use their own money or learn how to shop. The program works with local high schools to help those in their late teens and early adult years with job preparation skills,” Jeannine says.
The Arc of Shelby County has grown from a small support group into an advocacy agency that has had direct contact with more than 1,500 children and adults with developmental disabilities and their families each year. Last year, the Arc served 870 children and families in Shelby County and a total of 1,200 children, adults and families agency wide.
“Once we meet those families and make an impact, it becomes a lifelong relationship,” Jeannine says.
For more information about The Arc of Shelby County, call 205-664-9313 or visit thearcofshelby.org.