Sophia Butler, 16, plays marimba in her high school band, she’s a huge fan of comedian Ellen DeGeneres, and she hopes to eventually find a job. For now, she helps at the snack stand at Cumberland Valley High School and helps teach therapy dogs through her life skills class.
She has come far in her journey to have this kind of everyday, teenage life.
When her mother, Lisa Butler, was pregnant with Sophia, she was diagnosed with HELLP Syndrome, a rare, life-threatening disorder. It resulted in premature delivery of Sophia.
“She was so tiny,” Lisa recalls. "And frail, with tubes and machinery hooked up to her."
As members of the military, Lisa and her husband were accustomed to routine and order. Instead, they were thrown into survival mode.
Sophia needed early intervention, therapies, and specialists. As she continued to grow, her needs were more demanding, both physically and cognitively. Experts thought she would likely be nonverbal.
Now, Sophia has full conversations. She memorizes songs, performs in concert band, and shares her great sense of humor. .
“She has taught me a lot but, most importantly, to never underestimate her,” Lisa says.
Lisa credits Sophia’s determination but, she adds, The Community of Practice Supporting Families throughout the Lifespan has been life-changing for Sophia and the entire Butler family.
Its LifeCourse tools “opened my daughter’s world,” Lisa says.
“We went from settling for that mold society puts people like Sophia in, to having a plethora of possibilities,” Lisa says. “The LifeCourse framework is a visual about how to think. You can see the whole paradigm shift in front of you.”
As part of Pennsylvania’s membership in the National Community of Practice Supporting Families throughout the Lifespan, the Butlers learned about the LifeCourse Framework, which provides a general understanding of the foundational principles and tools that make up the basis of the Community of Practice.
Sophia participates in regular education cooking class and, with adapted curriculum, is doing the same for social studies.
The goal is to support families in ways that maximize their capacity, strengths, and unique abilities to promote everyday lives for their family members with intellectual/developmental disabilities.
With LifeCourse, the Butlers began thinking beyond Sophia’s diagnosis and beyond keeping her safe and healthy. Instead, they began thinking about Sophia’s personality, preferences, abilities, and goals.
Sophia’s trajectory for her high school years includes a more inclusive setting. One step was joining the high school band, with a warm welcome from its director. He started Sophia on the marimba, correlating notes to pictures.
“She has made real friends,” Lisa says. “She tells me, ‘I’m in! I’m with them.’” The band director believes in her, Lisa adds. “She will work her butt off for him because she knows this.”
“She’s floored people. She’s even floored me,” Lisa adds.
Lisa says Sophia will be dictating to her family what she wants for her future.
“Sophia will have a job. She will be successful. She might even fall in love.”
If you would like more information about the PA Family Network or would like to learn more about LifeCourse, call 1-844-PAFAMILY.