My husband and I had an “aha!” moment right before our niece’s wedding. As our niece was moving to a new chapter in her adult life, it occurred to us that we had no idea what our son’s life apart from us might look like. We always included Kevin—our 31-year-old son with cerebral palsy and a severe communication disorder—in extended family get-togethers. So, we didn’t hesitate to call for a family meeting after the wedding to talk about our thoughts and concerns for his future. My husband and I wanted to keep Kevin at home until we could no longer care for him. Both having been diagnosed with cancer—although successfully treated—we recognized the need to plan for Kevin’s future without us.
We began to search for a residential community with a secure financial base that offered Kevin a safe, homelike setting. An only child, he appreciated not sharing a bedroom. His private space is important to him. Kevin works with a job coach and has since high school. He enjoys workplace interactions, so the provision of scheduled work activities was also vital in our decision.
Kevin loves being “on the go” and participates regularly in church services and a variety of recreational activities. We identified a community with a new church home and leisure activities in addition to all of the other criteria we expected for our son. In our small rural community, Kevin developed relationships with the same therapists and caregivers for most of his life. We realized that any change would cause issues for him, so positive interactions with caregivers remained another non-negotiable feature. Finding a facility able to maintain his level of physical strength and flexibility for walking presented another challenge. That created another requirement—access to quality health care, various therapy services and fitness programs.
Communicating with unfamiliar listeners posed his greatest challenge. Kevin uses oral speech, gestures and some idiosyncratic signs to communicate. His love of his smart phones and technology drove his increasing use of oral and written language since high school. Any time a new communication app became available, a speech-language pathologist and an occupational therapist provided treatment to help Kevin use it. Kevin learned word prediction, which greatly expanded his ability to discuss topics or clarify his comments via text. Therefore, we insisted the community we selected would need to embrace technology and facilitate his use of it.
When we found the place that met all of ours and Kevin’s needs—Innisfree Village—executive director Carolyn Ohle asked us why we wanted to wait to move Kevin. She explained that younger residents adjust more easily when family members actively support the resident through the transition. This also allows parents or caregivers to visit frequently and take their child home for vacations and holidays.
Her words made sense and, once our emotions caught up with our reasoning, we decided that moving him sooner was better for Kevin even if it was more difficult for us. Kevin has now been at Innisfree Village for almost three years. He works in the bakery, vegetable garden, community kitchen and on the farm. He receives physical therapy and exercises regularly in a fully equipped gym. Kevin especially enjoys going to the local coffee house and attending sporting events in Charlottesville. His life is rich and full.
My husband and I continue to grieve the loss of Kevin’s presence in our daily lives. But we made the right decision for his present and future, and that gives us peace. Whatever happens to us and no matter when it does, he’s in a comfortable and caring community, which won’t change with our passing.
“The Unexpected Empty Nest,” in Exceptional Parent’s December 2013 issue shares more about Kevin’s life and transition to Innisfree. A condensed version appears on the Innisfree Village website, which CSD students can explore for volunteer opportunities.
Ann M. Darby, MA, CCC-SLP, Kevin’s mom and a retired SLP, spent her career working in the public school system as a clinician, preschool special needs teacher, and preschool specialist. firstname.lastname@example.org.