BORN PREMATURELY WITH DOWN SYNDROME AND A CONGENITAL HEART DEFECT, NOLAN HAS SPENT MOST OF HIS LIFE IN DOCTORS’ OFFICES, OPERATING ROOMS AND REHABILITATION CENTERS.
Nolan began early intervention therapies at just 4 weeks old and underwent open heart surgery at 4 months. Just before his third birthday, he was diagnosed with autism. Nolan has difficulties with balance, communication, coordination and tolerating oral textures, which makes him avoid eating. His oral/food aversion was so severe that he was losing weight and now depends on a feeding tube to supply his body with the calories he needs to grow.
“Nolan has a complex medical history,” says Amanda Smith COTA/L, Occupational Therapy Assistant with Washington Health System. “The challenges he faces make daily tasks such as expressing wants and needs, getting dressed, jumping, running and manipulating small objects very difficult.”
To help Nolan gain the skills he needs to work through these functional deficits, Nolan’s family brought him to the WHS Children’s Therapy Center after he spent 11 months at a different facility, not making much progress.
“We decided he needed a change, and we had heard great things about the WHS Children’s Therapy Center,” says Nolan’s mother, Karen Reilly. “With his severe food aversion, communication deficit and low muscle tone, we needed all the extra help we could get for him.”
DISCOVERING AN ARRAY OF SOLUTIONS
In partnership with Nolan’s parents, the occupational, speech-language and physical therapists at the WHS Children’s Therapy Center worked together to understand his specific needs, personality and learning style, and use that knowledge to develop individualized and consistent plans of care to help him reach his fullest potential. Short-term and long-term goals have been established that Nolan works toward in therapy sessions as well as at home.
The therapists at the WHS Children’s Therapy Center have many creative ways to target his goals using play-like activities and a team based approach that involves the family or caregivers each step along the way. Therapy looks a lot like play, but it always has specific goals that incorporate the things he needs to learn.
Thanks to Nolan’s fighting spirit, the love of his family and the dedication of the team at the WHS Children’s Therapy Center, he is making progress every day.
“He is working really hard to increase his strength and stamina,” Karen says. “He has also tried new things like riding an adaptive bike and shooting a basketball into a hoop.”
Nolan’s physical therapist has also connected the Reilly family with other resources and helped them get an adaptive stroller that is customized to meet Nolan’s specific needs.
To improve his meal-time skills, Nolan’s occupational therapist has been helping him learn to drink from a straw and try new foods. Nolan is also working with his speech-language therapist to learn how to use his new communication device.
“Each child is motivated by different activities or rewards,” Smith says. “Nolan is encouraged by music.”
Nolan’s therapists rely on music that inspires him, which includes “Itsy Bitsy Spider,” “It’s a Small World” and “Old MacDonald.”
“Nolan has been more willing to try new things,” Karen says. He is now eating some different cereals and has “already learned where a few preferred things are on his communication device.” These “little” gains are meaningful progress that the entire family is recognizing. Nolan’s sister shared in the joy of seeing him grab some of her cereal while they recently ate breakfast together.
“We try to focus on the things that Nolan can do instead of the things he cannot,” Karen says. “Acknowledging progress and focusing on those tiny victories is important. After all, they are not so tiny.” With his sense of determination, strong work ethic and a family that actively participates in his therapy and remains invested in his progress, Nolan is learning to be more independent in his home and community environment.