It was more than 25 years ago when I met Ethan, a 22-month-old boy with mosaic Down syndrome who was living with his family in a small rural community. His family felt the community would see and interact with Ethan differently from other children because of his diagnosis. And because the syndrome's features were not distinctly evident, they made a decision about which I remain conflicted. Only Ethan's parents, his pediatrician and a handful of family members would ever know Ethan's diagnosis.
Family was the constant in Ethan's life. His family's culture guided the decision not to reveal his diagnosis, and his family members believed in Ethan's strengths, as well as their own. Their beliefs about disability and in the potential of their son, as well as their experience in a rural community, influenced this choice. Ethan's diagnostic label did not deter his family from ensuring that he had access to the education he needed to be a successful, independent and contributing member of society. As parents, they led the way for service delivery while managing the bias often associated with differences and disability.
And they allowed me to learn from them so that I might be a better professional. What Ethan's family needed from me was family-centered, culturally competent intervention, delivered as part of coordinated care across developmental, educational and health services.
As we speech-language pathologists and audiologists well know, pro-fessionals who use such culturally sensitive collaborative teaming models ultimately improve health outcomes for clients. We can and should be part of the leadership that can make things happen in the community as family-centered practitioners.
I emphasize three aspects of family-centered care that are discussed in the research literature (see online resources), as they are particularly relevant to Ethan's story. First, families provide constancy in the care of their children, while team members frequently change, so we must be sensitive to the role we can and should play. Second, a unique culture is inherent in each family with which we work. Therefore, we must understand and respect how a family identifies itself. Third, families have strengths that can serve as the building blocks for effective service, and we should foster those strengths in the family and their community.
Ethan's story has taught me much about who is at the core of a child's early intervention services, the cultural context in which the child thrives, and the resilience that is evident in families. Before meeting Ethan, I was, as an SLP, comfortable with the knowledge I had about how children communicate and the importance of language to lifelong learning. And as a sibling of a brother with Down syndrome, I also understood the challenges and joys brought to a family with a young child who develops and learns differently. What I didn't understand is that families make different choices about how they want their children with special needs to be supported in the community.
Through the eyes of a magician (see "She Can Do Magic," The ASHA Leader, January 2013), I learned about the power and "magic" of families guiding their children's journey. I realized that for early intervention to be successful, I needed to understand the sacrifices and commitment of all families with which I worked to ensure that their children, no matter what their impairments, received the opportunity to be active participants in their home community.
Almost 17 years after I first met Ethan, I attended his high school graduation. Although Ethan was now aware of his diagnosis, it changed nothing about the magic of that day. He was part of his community, just as he was when he was a toddler—his parents knew how to make things happen.
I am inspired by the "magic" of the real leaders in early intervention: the families of young children with disabilities and the service providers who support them. SLPs have the unique privilege to develop a young child's communication skills, drawing on the dynamic interplay between what a child brings to an interaction and the experiences a child has. Early intervention practice requires that SLPs and audiologists look to families for a clear understanding of their values and beliefs, while balancing the evidence with their clinical experience.
Best-selling author Christopher Moore once said, "Children see magic because they look for it." I challenge all of us to see and believe in the magic of collaborating with families to make things happen, guided by the available evidence.