Following the Path to No Limitations

Chicago Network, "City Talk," October 25–November 7, 2002

By Cara Warfield

When Kathy Olson's* daughter Katie failed to walk at age 15 months, it became painfully obvious something was wrong. As other toddlers mastered head manipulation, sitting, crawling, and eventually walking, Katie* lagged months behind what characterized "normal baby development." Finally walking by 18 months, Katie's movements were awkward. She habitually locked her right knee. Olson expressed her concern to the family's pediatrician.

"I had my suspicions that something was wrong, but I thought, well, maybe she's just a slow walker," Olson says. "When you have a child, you think your child is perfect. When I found out that Katie wasn't perfect I couldn't help but think of the limitations she would face. I worried that she wouldn't be in a ballet or run cross country, and it broke my heart."

Katie was diagnosed with lax ligaments, referring to her low muscle tone, also know as generalized hypotonia. By age 2 she was undergoing physical therapy at the Pathways Center for Children in Glenview, an outpatient program that specializes in treating children with physical impairments. Unbeknownst to Katie, the rumble-tumble play she came to enjoy was really a form of physical therapy.

Meanwhile, Olson, again pregnant, visited the Pathways Awareness Foundation, the Pathways Center's sister organization located in the same building. The foundation, co-founded by Shirley Ryan, wife of Chicago insurance executive Patrick G. Ryan, is an organization that promotes awareness about early detection, early intervention and inclusion of infants and children with physical challenges. These range from delayed motor skills to cerebral palsy. One of the Ryans' three sons was born with cerebral palsy.

At the foundation, Olson learned more about child-development milestones and warning signs. So when her younger daughter Kiley* was born, she discarded the "wait and see" approach and promptly had her screened. Kiley also suffered from low muscle tone. At 6 months, Kiley began physical therapy and later required speech therapy for her generalized hypotonia, which had affected her facial muscles.

Katie, now 6, and Kiley, 4, have since "graduated" from the program, though Kiley still returns to the center twice a year for checkups. "Katie is so much stronger, especially in her upper body," say their mother, "and Kiley just talks her ear off."

Olson started working for Pathways Awareness Foundation in May 2000 and is now a co-resource director. "I got involved because of the girls," she says. "I can help other parents with what to expect, where to go for advice. I speak their language because of what my girls went through. My most common advice for concerned parents is don't wait and see."

Funded in part by the Ryans and private donations, the Pathways Awareness Foundation, created in 1988, is a nonprofit organization. Its mission is to foster the potential of physically disabled children by providing support, information and a sense of community to families. It increases awareness nationwide through brochures, videos, a hotline for parents and other activities.

"Every child is important," say Maggie Daley, the mayor's wife and co-founder and president of Pathways Awareness Foundation. "All children at some point face challenges, but they all have the same enormous potential. We need to make sure we give them all opportunities to lead a successful and meaningful life. If we can spread the word about early intervention -the earlier the better in terms of physical therapy - they will have a much better chance."

Upon entering the outpatient center, one might expect to see mothers hushing their children and discouraging fidgeting. But the waiting area is overrun by squealing children zipping about with staff members chasing after them, threatening to use their ticklers.

This is a normal afternoon at the Pathways Center. "We like to have people feel like they're at home here," says physical therapist Gay Girolami, the center's executive director. "It's important to motivate the family and help them determine goals, but we also have to get on the floor and be goofy with the kids."

Girolami has worked at the Pathways Center since it opened in 1985. "Children will always find a way to move their bodies and explore in their environment," she says, "and sometimes children with musculo-skeletal disorders don't do things in the most beneficial way. The earlier we can intervene to alter their movements and facilitate better ways to move about their environment, the better. We're working to reinforce the patterns that are going to be more beneficial to their goals."

The age of patients range from newborns to late teens, and therapy varies according to environment and individual needs. Orthopedic management and sensory/motor learning are part of therapy, as are approaches such as conditioning classes for older kids and game and tumbling for toddlers.

"We think about what muscle we want to strengthen and then what game would be fun, depending on what the child's interests are," Girolami says. "If they like balls, we play games with balls. Or maybe they like water and we'll have them splash around in water. You have to be creative in figuring out something that's motivating to them."

The center's 16 therapists - physical, occupational and speech - work with as many as 200 children a year.

"We've come so far, but we have so much more to go," say Maggie Daley, referring to Pathways Centers and its mission. "We need to keep moving ahead so we can let more and more people know the value of early intervention. We want to be able to say, "if you child has these challenges, there are still great possibilities and promises for a wonderful life."

Kathy Olson looks at her own children as proof of just that. "I guess you'd say Katie and Kiley graduated from the physical-therapy sessions, and are doing quite well," she says. "They climb and do these flips on the bar where they can bring their legs through their arms. They can do whatever they want without limitation. It's amazing to me."

For information about therapy programs at the Pathways Center for Children call the Pathways Awareness Foundation at 1-800-955-2445.

Names have been changed to protect privacy.