Pam Porter’s job is helping families in which a child has just been diagnosed with autism live with the newfound reality of a disability.
“All parents, when you get the diagnosis, are in denial,” she said. “Even once you get you get the diagnosis, it just begins the journey, a lifetime journey.”
Porter is one of two community mentors who, through the Parents Taking Action program of Easterseals Arc, work with families who are learning to live with autism.
She well understands the journey. Her daughter Ashley, who graduated from high school in 2005, was diagnosed with Asperger’s Syndrome as a child, in addition to other disabilities. Ashley now works part-time, cleaning public areas of TownPlace Suites. Ashley lives in her own apartment, with support from Easterseals Arc staff who help her stay organized and keep her home tidy.
Porter knows that guiding a child who’s been diagnosed on the autism spectrum entails enormous changes and many compromises for a family. The promise also is enormous: the potential to help young people create rewarding and satisfying lives for themselves.
Ashley has become an advocate, too, for herself and for others. She helps teach other people with developmental disabilities to take a strong hand in the services they receive, particularly in the quarterly meetings where those services are reviewed.
“The meeting is about you,” she tells them.
Ashley also helps people “use their voices and contact their legislators,” she said.
Porter’s most fundamental message for families working to plot their course after a child’s diagnosis is to accept and to build.
“Your child does not need to be fixed,” Porter tells them. However, “the choices you make now can have an enormous effect on their lives 30 and 40 years from now.”