Madison is a girl on a mission. Walking, talking and eating – these are the things she’s working hard to learn. It’s been an uphill climb. In addition to being born with an extremely rare genetic disorder called Phelan-McDermid, Madison has hip dysplasia, visual impairment and low muscle tone that made it difficult for her to swallow or hold herself upright.
“It was a barrage of issues,” says her mother, Lucy, describing the period shortly after Maddie’s birth. “We kept asking ourselves, ‘What’s next?’”
Maddie started CTC’s Early Supports program when she was 4 months old and now has weekly sessions of speech/language, physical, and occupational therapy. Her occupational therapist, Jenn, says that Lucy’s involvement in Maddie’s therapy and her patient approach has helped her daughter’s progress.
“Lucy is really good about following Maddie’s lead,” says Jenn. “She exposes her to things but then lets Maddie decide how she wants to proceed.”
One of Maddie’s biggest challenges is feeding. Although she is reluctant to try different tastes and textures, her therapist is persistent. “I carry along little bags of crunchy snacks and candy like Fruit Roll Ups to encourage kids to experiment,” says Jenn. “The goal is to get the child to play and get interested in food.”
Maddie’s progress in therapy has been remarkable. Today, she is making eye contact with others, taking her first few tentative steps, and communicating with her mother by tugging on her hand when she wants or needs something. She’s giggling, exploring and cuddling. She’s fascinated with playing cards and the family’s iPad – apps like Magic Finger and Fluidity allow her to draw on the screen, which lights up following the movement of her finger.
She has also discovered that by simply grasping the window ledge, she can see a whole new world outside.
Madison turns 3 years old soon, an age at which options for pediatric therapy nearly disappear as children age out of Early Supports (ESIT) programs and parents struggle to find services for older children. At CTC, we are providing those services! And with your help, we can help even more children like Madison.
How could center-based services help a child like Madison progress even further?
- Feeding therapy would help her advance the variety of textures she is willing and able to eat.
- Using a gait trainer (walker), climbing stairs (she only has cement outdoor stairs at home), and playing on preschool movement toys (slide, riding toys) would help her become more mobile.
- Developing her ability to communicate (perhaps with various iPad apps) would help her make choices and ask for things she wants.
- Developing fine motor (hand use) and cognitive skills would enable her to play with a greater variety of toys and participate more in her own feeding and dressing.