More than four years ago, when Ben turned 14, I started touring group homes and residential facilities in North Carolina to see what was available. At the first place I visited, the social worker’s warning stayed with me: “Don’t wait until you’re in a crisis to have a plan for your adult child with special needs.” She’d recently turned away elderly parents who were hoping to leave their son at the facility. The wait for a bed there was a decade. Over the past four years, I've toured a few group homes and one facility. I've spoken with more than a dozen in-take staff with agencies specializing in group homes, alternate family living (AFL) placements and intensive care facilities. An AFL is when your child lives with another family or individual who takes care of them in their own home. Starting early gave me the advantage of working out the emotional turmoil that goes along with placing our son in another living situation. An avalanche of emotions hit me after the first tour o
These stories describe our journey with Ben, our oldest son. Ben is a sweet and energetic redhead, born with Rett Syndrome, a rare genetic mutation. My husband, Ryan, and I try to keep up with Ben and his two younger brothers. I intend to shed insight into raising a child with disabilities and pass on the wisdom we’ve earned over the past two decades.